The Jones Journey

September...Childhood Cancer Awareness Month

2011-09-26T22:46:00.002-05:00

We didn't know Brayden's video was on the Arkansas Children's Hospital website! For their Oncology page, they highlighted Brayden's story for this month and, wow, what an honor. He had some kudos during our trip there for treatment last week and was thinking how cool that he was on there!

His last update looked good. He'd had a hard week the week before with a lot more nausea, headaches, stomach pains, leg pain and just overall feeling horribly to where he wasn't having his meals or able to rest. We were going back to the old days of back to back medicine and not letting the anti-nausea meds wear off. We were really so worried. He'd been doing well for so long and getting thrown back into worry with what was going on was so overwhelming. Were the cells back in his brain? Was something else going on under the surface? It was almost a relief to have another mom in the waiting room ask me the same question while at ACH. Her little one, diagnosed a month before Brayden, was experiecing the same things and she wondered if Brayden was! We both asked Dr. S about it and sure enough, it's more common than we realized. After 2 years of so much chemo, it kind of catches up with their bodies. We hate that he's had some tougher times but so relieved to hear everything looked okay. We were definitely excited to be reminded that within 2 months of his last treatment how much better he's going to feel! We're hoping that some new meds and some change-ups will help Brayden feel better and help endure these harder times. So another month down...truding on!

Be reminded of so many who are fighting and how many families are affected...over 12,000 families each year being given that awful cancer diagnosis for their little ones. One year...our hearts still ache for those who've lost their battle and we stand beside those who continue their fight. Help remember them in prayer...and as Brayden said, keep praying that a cure can finally be found.

My little golfer

2011-09-16T10:13:00.008-05:00

Brayden was so excited that with all the fundraising events for Arkansas Children's Hospital, my company was so gracious to share a ticket for him to get to golf at the Will Golf 4 Kids fundraiser. Brayden LOVES to golf and has always seen these golf courses but never dreamed he'd get to play on one of them. He was excited about the gala - but SUPER excited to get to golf with the big boys on the awesome 18-hole golf course! It was a BEAUTIFUL day and the greens were so awesome that early in the morning. Brayden took it all in - the geese were so neat too & the squirrels that are afraid of NOTHING and expect to be fed!

He got to try his hand at the golf cart and was a pro within a short time. He looked so great during his game and, in scramble style, our four-some group played off of Brayden's ball many times! Again and again, he was having great hits and was closest to the pin. He did so great but kept wanting to play through versus stopping at par. It was great fun and I loved his enthusiasm. Each hole had a sign about Arkansas Children's Hospital and there were a couple that were of special meaning for us.

We're so appreciative of all the work that goes into this event each year. It was remarkable to see the organization and all the steps at play and so many that it takes to pull off an event such as this one. We're so thankful for ACH and for all those who play in the event each year and contribute. It was neat for my little man to see so many out golfing and working to raise money for all the kids at ACH and he didn't take one minute of it for granted!

6th Grade

2011-09-15T21:51:00.001-05:00

Brayden was very excited about all that 6th grade brings. His favorite things? Having a locker and not having to rush to eat lunch. The big kids get an hour to eat and play outside or hang out...whatever they want. No more teachers telling them to hurry & eat. Hmmm...I guess it's the little freedoms or the opportunity to have a few less restrictions.

He has several different teachers this year. For his grade, he doesn't switch classes, rather the teachers rotate. It allows the kiddos a transition year before they have to be more conscientious of their time and not spending time between classes visiting in the hallway.

Study Hall was a new addition this year. I don't think he's quite gotten down in the first 4 weeks that you use that time for studying. Do they ever get that? It's hard to believe we have a 6th grader. He's excited to try Flag Football at school after not getting to play since diagnosed. Hopefully he'll get the chance to have some fun. The neuropathy in his legs still slows him down but he sure puts forth the effort.

Hopefully this year will be successful for Brayden. It's already a lot of work and I worry how much of what he struggles with is normal, eleven-year-old boy things and how much is made more challenging by all the treatments and meds he's endured the last 29 months. But we're thankful that he's still persevering!

Brayden's Video

2011-09-13T21:40:00.003-05:00

We've shared how Brayden was chosen the Champion Child for this year's Will Golf 4 Kids and Color of Hope Fundraisers, which benefit Arkansas Children's Hospital. Part of that responsibility is sharing with others Brayden's story and his journey and how much gratitude we have to ACH and all they've done. The ACH film crew interviewed all three of us as well as Dr. S, Brayden's Oncologist, during a visit to ACH for chemo. We saw the video for the first time the night of the Gala...but it was almost too hard to watch so we kept ourselves distracted so we didn't fall apart in front of a room of over a thousand people! The Foundation graciously gave us a copy of the video and, a couple of weeks later, we finally worked up the courage to watch it. We turned off all the lights and had some kleenex on stand-by! It was a neat experience to watch it. Certainly the pictures and Brayden's story bring back some hard memories and tough emotions. But it's also a celebration and testament to how far he's come. We were excited to see that the Committee has posted it on their website so now others can view it as well!! Feel free to watch it here. It should load automatically. And please support ACH...for all those kids who haven't gotten to come home yet.

Brayden's Video - 2011 Champion Child for Will Golf 4 Kids & Color of Hope Gala

11 months to go...& Gala Recap

2011-09-13T20:43:00.005-05:00

I have such good intentions of sharing more on here! We haven't gotten all of our pictures back yet from the Gala. But wow - what an experience. I re-read the first posts the night before the Gala and I think it helped to put my heart in the right place in preparation for speaking to the attendees. We were so thankful to be able to help but we were all so nervous!! Here's a pic my sweet friend took of us while on the podium. We saw the video they recorded back in the spring at ACH and it instantly took my breath away. I realized we were up at the front and all the preparation still left me with empty hands leaving the tissues still in my purse. Thankfully the hosts were talking to us and shaking hands with Brayden so I tried to pull it together. It was truly so emotional. We spoke to the audience in the effort of not only applauding Brayden's courage but hoping to help others to see how easily it could be your child...and how we need to help ACH as much as we can. We are so fortunate to have such an incredible facility so close for our kids. The night ended with us hearing the event raised $914,000! They exceeded last year's total of $800,000 and we were so thankful for each one who gave. They raised funds after Brayden's video to help raise money for infusion rooms in the new Oncology wing that's being built. It's sad to think there are so many kids being diagnosed and how quickly they have outgrown the existing rooms. But the expansion will help make the time spent there for future families at least a little more comfortable. Thank you to those that gave to help with the infusion rooms for the kiddos fighting childhood cancer. For those that donated, Brayden got to help give out these bead bracelets just like his Beads of Courage he gets for all his procedures.

Brayden was a trooper. He was interviewed on the red carpet and looked so handsome. He was too nervous to eat - we all were. The best part was getting to see Dr. S, his awesome Oncologist, and meet his sweet wife. We were glad to get to sit by them at our table. Everyone was so very warm to us and the best was the encouragement Brayden received. Once we were on the stage and the applause was continuing and I'm applauding to Brayden and looking into his eyes...he started to tear up. I grabbed his hand and made sure he was okay. It was almost too much to take in. But what wonderful love and encouragement to receive. On our trip down from the podium, we were stopped so many times and Brayden given fist bumps and pats on the back and hugs. We heard so many stories and realized how many people ACH has touched. We were grateful to be encouraged by other ACH Oncology families. There's a special bond there that only the deep looks and unspoken words can explain. But Brayden was definitely the star and he was so articulate and grateful and we couldn't have been prouder.

So, 11 more months from today til we're done. Brayden's journey continues. Everything has been looking good for his counts. It looks like things have stabilized out for his dosages. He's been fighting a sinus/respiratory thing the last week that we're hoping his weekly preventative antibiotics will help keep at bay and not worsen. Some days are better than others. He's certainly tenacious and a fighter and trudges on with a great smile and an incredible outlook.

Please remember September is Childhood Cancer Awareness Month. There are so many kids fighting and, as Brayden said, we pray they find a cure really quick.

843 days in...366 days to go

2011-08-11T20:48:00.002-05:00

Wow...I'm working on writing a speech for Brayden being chosen as the Champion Child for this year's Will Golf 4 Kids and Color of Hope Gala for the Arkansas Children's Hospital fundraiser. Tommorrow is not only the big day for the event - it begins the 1-year countdown until Brayden is done with chemo. I can't wrap my brain around that. Then - when you consider how far we've come, it's more than I can fathom. In those early days, it hurt too much to see this far. We could't look beyond the next hours or test results or day. To say we're thankful and so proud of Brayden is just the tip of the iceberg.

He's a bit intimidated by the Gala tomorrow. We all are...so we try to use this for good and help the other kids, help the hospital, and focus on the celebration of all he's endured and just how tremendously far he's come. It's easy to get sidetracked by all the pomp and circumstance of it. But at the heart of it all is a little boy who's faced more adversity than my heart can handle and has a daily fight with Leukemia and keeps on going, keeps on smiling, and continues to bring my life so much joy than I ever knew possible.

His chemo has been going well. His counts have been good. We've had a few concerns here and there with his ANC being almost too low then his hemoglobin taking a dip making me worried about needing a possble transfusion. But all in all, he continues to be so resilient and persevere.

Please say a prayer for us tomorrow with all the events that we remember to enjoy one another and breathe in all the moments. It will be an emotional time for us as we watch the hospital show Brayden's video and documenting his story and journey since diagnosis. We just want to do what we can to help! The fundraising money for the event will go for an Infusion room at the new Oncology wing at ACH. You can read more about it here: Color of Hope Champion Child, Brayden Jones, Patient Story

Brayden & Relay for Life

2011-06-19T07:53:00.002-05:00

We'll post more pictures and details later. Such an emotional night for us. Brayden absolutely loved it and didn't want to go home or stop walking until all the luminaries were lit at dark. Even then, he wanted to keep walking and was so exhausted by the time we left at 11. Thank you to all the volunteers and workers who stayed the 12 hours thru the night til 7 am the next morning to help raise funds for the American Cancer Society.

Brayden saw this the next morning on the front page of the Benton County Daily Record and ran squealing to show me!

Relay for Life - Benton Co Daily Record Front Page

My baby's on the radio!!

2011-06-19T07:31:00.004-05:00

The Jones Fam were total hamms this morning. Since we posted on here about Brayden being chosen Champion Child for the Will Golf 4 Kids fundraiser for Arkansas Children's Hospital, things have really pushed into high gear lately. Brayden absolutely loved meeting Jennifer Irwin and she was so sweet and gracious to us.

After doing the radio interview with her & Mike from the committee, Brayden has been anxiously awaiting the air date that happened this morning. We set our alarms & woke up early and tried to figure out how to record it to share here for everyone. Like his momma, he's too critical of himself! We were both squirming in our seats and there were a few hitting our head moments of embarassment, but he did SO GREAT! That was all done in 1 take, y'all!! No editing! So proud of Brayden. We didn't rehearse or practice - everything was from his heart since we had no idea what to expect. More than anything, we hope this helps bring awareness. Even if you can't golf or go to the Gala, you can still support ACH and all its efforts at www.willgolf4kids.org.

AWESOME JOB, BRAYDEN!!! I recorded it and tried to post it here, but it appears the file is too big. We'll keep trying. Now...on to Father's Day celebrations!

Brayden's Relay for Life & Survivor Dinner

2011-06-13T11:44:00.003-05:00

Friday was our first time to participate in the American Cancer Society's Relay for Life events for Rogers/Bentonville. We have signed up Brayden as a survivor and he will do a special walk this Friday at Pinnacle. Bryan is walking on a team for his work in honor and support of Brayden. If you'd like to support his walk and donate to the American Cancer Society, you can click on his page here.

Friday's dinner kicked off with such a neat God hug to us. If the timing hadn't worked just right, we'd missed it. As we were walking in, a sweet teacher who used to teach at Brayden's school was walking over to her window to close it and just happened to see Brayden! She ran out to greet us and it was SO wonderful to see her! We'd missed her this past year and it was so awesome getting to catch up with her and her to see how great Brayden's been doing. She prayed with us and was just such an encouragement to us.

On to the dinner, we felt so uncomfortable and uncertain. They did a lovely job with some sweet volunteers. Finally we saw some familiar faces of another Mom who'd reached out to us in the early days of diagnosis with her 11-yr-old son who'd battled the same diagnosis with relapse & transplant procedures & 6+ yrs of treatment since he was 3. We were SO grateful they were there and sat with us. The boys were adorable as they were digging through their special goody bag you could tell had been hand-packed for the 3 young men who were survivors attending that night. There was another young man of the same age who was a special speaker for that night telling of his Lymphoma diagnosis and his 3-month treatment. After he was finished, the boys ran to the back to meet him in person and share stories. Once this young man heard of Brayden's treatment plan and our sweet friend who was there too going through his own long journey since age 3, he was visibly surprised with imagining the duration of the treatment. I loved getting to see the 3 of them together and this is what I had hoped - that Brayden would be reminded he isn't in this alone and there are others going through the same struggles and others who have come through to the other side!!

A special moment in the night was when Brayden received his Survivor pin, celebrating 2 more birthday's since diagnosis. Brayden also gave me a special Caregiver pin. It was a neat moment and one that seemed so surreal. Brayden was the newest diagnosed male patient in attendance that night.

This Friday we will participate in the Relay for Life walk. Please feel free to come out and join us. Brayden will walk in the Survivor Lap at 7pm, then there will be a Caregiver walk, then we walk for a cure in thanks to the donations that have come in. We're hoping it's not too hot and we have good weather!! It's a great way to honor those who have endured their battle against cancer, honor those who have lost their fight, and work to ensure all those diagnosed have the opportunity to celebrate more birthdays!

The Power Team!

2011-06-10T11:19:00.006-05:00

Brayden's 5th grade teacher surprised him with a big event at school!! She clued me & Dad in on the big surprise and even up to the day of the event, he had no idea what was in store for him. His adorable classmates wore their "Team Brayden" shirts they had originated a couple years ago. Once they arrived in the gym for the special presentation, Brayden was honored & called out for his courageous battle since diagnosis with special Power Team senior member, John Kopta. Brayden was made an honorary Power Team Member!! He was blown away and so proud!

The things they did literally left the kids in awe. John has been with the Power Team over 20 years and is still amazing audiences with his incredible strength and faith in God. John & Big Country started in with some amazing accomplishments: blowing up a hot water bottle until it pops, lifting two girls on a bar and swinging them around in circles… then he bends the bar with it in his teeth! Then John tears a Tulsa phone book in half. Big Country breaks a Louisville slugger bat in half! They were so gracious to autograph it and give it to Brayden! Big Country also popped open a soda can with his hands only…all over the kids!

We're so thankful for their witness & testimony as well as their encouragement of Brayden's fight with Leukemia. What an honor for him and such an awesome experience!! A very heartfelt thank you to John & Big Country & the Power Team for your awesome gift and service and for blessing Brayden with such a memorable experience!

Radio Rockstar Brayden

2011-06-09T17:35:00.006-05:00

We posted on here and learned a couple of months ago that Brayden had been chosen to be the Champion Child for the Will Golf 4 Kids annual fundraiser for Arkansas Children's Hospital. One of the things he got to do was visit a local radio show and be interviewed by Jennifer Irwin! He was SO excited! Walking into the control room he immediately took the seat next to Jennifer and was eating up the opportunity! Jennifer was lovely and so wonderful to us. Mike Sewell, the chair for the Will Golf 4 Kids golf tournament joined us as well to help raise awareness about the charity and its events.

We were SO glad to hear the interview Jennifer conducted with us wouldn't be live. The edited version (whew!) will air Sunday morning, June 19th at 7am on Clear Channel stations. Or, you can listen live on 107.9 link here! Just click "Listen Live" box.

Great job, Brayden!! You really were a Radio Rockstar!

Relay for Life for Brayden

2011-06-08T12:06:00.006-05:00

Wow - we really miss all of you! Brayden and I have talked frequently over the last several weeks about the blog. Things have taken priority that I would prefer didn't, but such it goes sometimes. Brayden is doing really well. He's growing so fast that I've been really nervous (quietly so) as to not alarm him. His counts haven't been able to be in the 'safe' range really since Christmas. It's been scary week to week. I try not to let the fear take over but I'm still human and it's a hard battle to fight with myself each week. Being a mom still takes over our hearts and heads as we want to protect our babies - or young men!

Brayden's now 5'4" and has grown 4" taller since January's check-up. Every 6 weeks is the most frequently his chemo dosages can be increased. So it's been an increase, a waiting game, watching counts & blood results each Monday, then seeing what happens for next week. Each Monday it's the same cycle. I watch him super closely to try to read what's happening under the surface. It's impossible to predict as I've continued to learn the last 5 months. Each 6 week cycle after 1 chemo med is increased & his counts don't fall within range, then next chemo med is increased as an alternate, then it's the wait and see game again. All the while, I wonder what is happening on the inside. Will his liver function uphold the increased strain of the new dosage? Are his higher counts because he's (heaven forbid) relapsing? Your mind goes crazy. It's hard to imagine but you begin to prefer the days of isolation because at least then, you knew the chemo was working. I know I'm losing it when I have those thoughts. It's an insane cycle no one should have to endure or face.

All in all, he had a great visit at Children's last week. He had a spinal sedation with intrathecal chemo to treat those cells present in his brain. With all the increases to keep up with this big growth he's been having, he's up to 47 pills a day for this past week. Insanity for sure. He's pushing through it all like a trooper. The days following the spinal are never easy for him. But he persevered. His nurse has been so supportive in encouraging me he's fine and he's just a growing boy! We're hopeful things will settle back in to a normal pattern again and his counts will resume.

School has ended and he's excited about summer. 5th grade was such a blessing for him since it's the first time since 2nd grade he's been able to start and end the school year in completion with his class without treatment or isolation or diagnosis interfering. I can't believe summer is approaching...or should I say here! We've got a lot of fun and exciting things to share over the coming days that are in the works.

One of the things I wanted to share is that I signed Brayden up as a surivor for Relay for Life this year through the American Cancer Society. There's a special walk next week. We've not participated before and aren't sure what to expect. We heard another 11-year-old boy will be speaking and I hoped it would encourage Brayden to see that he's not alone. He's come so far in the past 26 months and I hope the walk will help him to feel that support and encouragement. Seeing visually that he's not alone in his battle I think will also be good for him. Feel free to check out his page at:

Brayden's Relay for Life Page

Stay tuned! I promise to post more and can't wait to share about his recent antics on the radio!!!

Birthday Celebration Continued

2011-03-30T12:23:00.003-05:00

Brayden's birthday festivities continued with his trip to the local oncology clinic for chemo after school. His sweet Nurses surprised him with a procedure room all decorated up with balloons, a cake and candles & a gift! Even while having his weekly chemo, the birthday festivities were a great distraction. He loved the cake and chowed down to celebrate. The gift they so sweetly got for him was a new DS game he's been talking about for days! He even replayed the commercial with the game on it several times for me. It's all he talked about! So when he opened it, he was SO happy and SO surprised! Thank you to each one of you for all you did to make Brayden's birthday special.

Brayden's counts have been a little higher than we'd like. Even after increasing his chemo, I've been wondering why they haven't dropped more. They did come down some but not in the safe range yet. I'm wondering when we go back to Little Rock if that means they'll have to increase his chemo again? Anyway, other than his counts being a little too high (and not wanting the cell growth to get so crazy that the Leukemia comes back) his other stats looked good. He had developed a nasty cough and some drainage out of the blue so we were worried about that.

After chemo, he wanted to go see what to spend his family birthday money he'd received on and then to his favorite restaurant. It's been FOREVER since we've been there and he really had a great time. I was a little worried though when he barely touched his food and wondered if he wasn't feeling well. After dinner, he matter of factly got up from the table and stated, "Well, I finally feel like I'm 11 now." There you go!

We went home so he could open our presents and I took some more pictures and relished the fact I'm the mom of an 11-year-old. Wow. He felt the effects of chemo as the night progressed. We let him soak his feet in this cool foot bath he likes and that (I hope) helps sometimes with his neuropathy pain. The next morning, though, he was pretty yucky. I finally got him to have some yogurt so he could get his morning meds down. Between chemo and the nasty cough and drainage that came out of nowhere, I was glad the preventative antibiotics started and hoped after a few doses, he'd be feeling better and this could kick whatever was going on. Sure enough, by this morning he was back to himself. Dad and I had a few glances exchanged last night while watching over Brayden. Brayden said he felt like he did when he was first diagnosed, so I was worried something was going on. You hold your breath wondering if he'll spike a fever and then the ER rush is on to get him iv meds quickly. Or, if you're over-reacting? It's tough to know what to do other than try to be in tune with how he is and just let him rest as much as he can.

And so it goes. We hope the rest of this week is better for Brayden and more celebrations to plan for his 2-year since diagnosis in a few weeks!

Happy 11th Birthday, Brayden!

2011-03-28T12:03:00.004-05:00

Wow...11! I was reading over last year's posts and we were cheerful in what we shared but the emotion of it was very different. This time last year Brayden's counts dropped & we had to cancel his birthday party we had planned with his friends. It was so gut-wrenching to make that decision. He handled it like a trooper and yes, we had a bunch of fun things at home planned to keep his spirits high. One year ago he had just finished his first round of Maintenance chemo and spent his actual birthday in Little Rock. It was the first time he finally got to see the Capital building up close. All the spring flowers and trees blooming brightened our day. The day after he spent in his Radiation follow-up appointment, reliving all the emotion, and having a spinal sedation with chemo.

This year...we're SO happy he's been doing well enough to share his birthday celebration with his friends and family. We were sad not everyone could join us, but being back to the same place he celebrated 2 years ago and then weeks later was diagnosed was also emotional. We stayed positive & I tried to stay in the moment. What an awesome celebration! Brayden has come SO far and has been so truly resilient. He has been counting down the days to get to have his Star Wars party we planned to have last year and finally get to use all the fun decorations! He carefully put together all the goody bags and helped me prep all the other decorations. He was insistent we get to the location early so he could help me set up! I told him he didn't have to and that was a 'mom thing.' He REALLY wanted to help so we were sure to get there in time so he could have his fun arranging all the Star Wars stuff and getting everything ready for his friends to arrive. He had helped pick out his cake a few weeks ago and it was so cool!! The cupcakes had little mini light sabers on them!! His excitement of the day was overflowing. The boys had fun playing Lazer Tag and wearing themselves OUT!

He decided last year he had so many things people had blessed him with after his diagnosis that he'd share his birthday with having friends at his party bring toys for the kids at ACH. Since he didn't get to do this last year with his party cancelled, he decided to do it this year. Last week I think he realized what he had committed to and said, "but I'll still have gifts from family, right?" Yes, I'm glad he asked otherwise we'd start to wonder if his wings had sprouted too early! Thank you to everyone who came & shared in this special celebration with us. We can't wait to share the gifts with the ACH kiddos in the Oncology wing on your behalf! We know it will bring a lot of smiles.

We continued the celebration with Brayden's favorite dinner mom cooked Saturday night and Sunday with his favorite breakfast and then homemade sushi yesterday for lunch! Whew! We all need to hit the walking trail this week!!! He was roaring to go this morning bounding out of bed on his actual birth date at 6am! This is his first day back after Spring Break. This time last year was his first day back after a full year off. Wow...I'm bummed he'll have chemo today again, like any other Monday. But his awesome Nurses are what make the chemo seem not so bad. It's so great seeing them and from what I hear, they have a few things planned. Tonight we're hoping his counts are good enough for him to get to go to his favorite restaurant we haven't been to in ages. Then he'll finally get to open presents from Mom & Dad.

Brayden, we're so proud of you! You have SUCH a good heart and you are such a fighter. Even with all the adversity you face, you take it and persevere and rarely complain. Your positivity and outlook constantly teach me each day. We're so blessed to have you as our son. I hope you never forget that we're with you all the way, buddy. Still, not a day goes by that I wish I could carry this burden for you & take the pain and hardship on for you. My heart will never be okay with having to watch you endure all that you have in these nearly 2 years. I continue to learn that I am not in control and am reminded that you are only mine for a time and that you are a child of God and I have to trust you to Him. Know that you are NEVER alone with Him in your heart. Thank you for all your laughter & goofiness! I promise to keep being silly too if you keep laughing WITH me and not AT me! Happy Birthday, sweet boy! To the best of ALL the sons!

Good News!

2011-03-25T10:12:00.003-05:00

We received an update call from the Make-A-Wish foundation a few weeks ago. It was such a neat call as they checked in to see how Brayden was doing in his treatment schedule. His Oncologist still wants Brayden to be done with treatment before he does his wish. So since his diagnosis began just a few weeks after Brayden turned 9, I don't know if I've adequately expressed here just how frequently his Make-A-Wish comes up. At first I just couldn't imagine that he would get to have this chance to have his wish granted. How neat! But you always associate that with a different scenario--at least I do. My mind immediately goes to those sweet kiddos who are terminal and the emotion just hits you. When his Social Worker saw our reaction early on to hearing that he would be granted a Wish, she reassured us that now the Foundation grants wishes to ALL kiddos who have a cancer diagnosis and endure chemotherapy. Once we understood, then it seemed daunting to answer the question of what he would want since end of treatment was still 3 1/2 yrs away and so much could change with Brayden's likes and dislikes. How little did I know at the time how motivating his Wish would be for him. When times are tough, we always talk about his Wish. Without us prompting, no kidding, it comes up at least once a week. AND EVERY WEEK IT CHANGES!! We smile and have to laugh now because you can get whiplash from him changing his mind. But it is very awesome that he has that ability to change his mind and have this to look forward to. I'm very curious to see by the time he's 12 1/2 what he will end up deciding!! She said she'll check back again on us and hopes Brayden continues to do well!

http://www.midsouth.wish.org/

So we had another exciting call. In January, the Foundation at ACH had contacted us about doing a story for Brayden. They have a quarterly publication sort of like a magazine that goes out to their supporters. My company has been a long-time supporter of ACH and it's always neat to see the things we receive in literature promoting the hospital and success stories. She asked a lot of questions and then we didn't hear anything back. We figured they found another child to feature or changed their minds. Fast forward to last week - I received a call at work from the Foundation. There is an annual fundraiser with many sponsors initially started by Walmart that is held each August with all the proceeds supporting Arkansas Children's Hospital. With my company's sponsorship, it was a privilege to attend last year. It was so emotional reading the material and seeing all that ACH does and feeling such a personal connection and gratitude for all that was being done. The dinner was lovely, decorations so extravagant. There were celebrities and everyone was dressed up and silent auctions and live auctions. But at the end of it all - I was so grateful to everything around me in knowing so personally how it had helped Brayden and how we had been touched by this hospital and how without them...I don't know what we would have done or where we would have gone that night in the ER - when we were 3 days away from losing him.

So - the Foundation each year chooses a Champion Family for their Color of Hope Gala. She told us they fell in love with Brayden's story and loved our connection to the community and said we had been chosen for the 2011 Champion Family! WOW! We are so honored and so amazed at this opportunity to give back. We truly feel that we owe such a debt of gratitude for all that has been done in Brayden's care. We've wanted to give back in small ways to ACH - but never imagined having the forum to give back in such a public way!

They are going to use Brayden's story to promote the event and are also going to have a film crew join us at one of Brayden's upcoming visits to ACH. WHAT!?!? We are truly blown away and certainly intimidated by this opportunity. We hope that through Brayden's story, just as we've prayed, it can help others. We hope it will allow others to see the benefits the hospital can bring and help continue monetary support. So we're pushing aside our fears and intimidation in hopes of helping others! I can't wait to share more here with you...

http://willgolf4kids.com/color_of_hope.asp

Birthday Month!

2011-03-21T11:30:00.002-05:00

Wow - March seems like it just started and I'm sad to see it quickly moving past. Brayden - wow. He's growing! After missing 2 months prior due to all the crazy snow & winter weather, we finally had our Little Rock appt a couple weeks ago. It was so great to see everyone and have that comforting feeling of being sort of home in some way. We loved getting to see his sweet Nurse, his Oncologist, and his sedation Nurse and all the other wonderful familiar faces. It was time for Brayden to have another spinal sedation where he is sedated for a procedure where spinal fluid is drawn from him to be tested to ensure there aren't any leukemia cells growing in his brain. Injected back into his spinal fluid is chemo meds (intrathecal chemo) to continue to treating those cells. We're glad this only happens once every 12 weeks. He doesn't like not getting to have breakfast or anything to drink those mornings and leaving the house before 5am for that drive, we are always hoping he can just sleep as much as possible until the procedure is done. This procedure also kicks off another cycle of chemo and continues his countdown! We're now down to 16 months remaining of treatment!

We were shocked at the ACH visit to hear Brayden has grown 2" taller in the last 3 months! Of course, we knew with his stronger counts the last couple of months combined with his growth that leads to an increase in his chemo dosage. Dr. S. heard the question and I knew the answer before it was out of my mouth. But I was surprised to hear the increase would be by more than 25%. Brayden did so well during the sedation. We always leave the room during the procedure and usually are back before he's waking up from the sedation medicine. We were surprised he was already awake! He still has to continue laying down for 35+ minutes post-procedure so it doesn't give him a terrible headache. We've heard how nasty those can be. This time, it was more difficult to keep Brayden still and down! He was wide awake and not groggy at all and ready to sit up. Thankfully he made it until the time (as he stared at the clock while we tried to keep his mind off of it!) and was ready for some food! The trip back went well and we did our normal run of getting all the monthly meds filled. It was steroid week where, with his new chemo dosage, is up to 147 pills for that week. He trudged through and thanks to the help of pickles being his craving of choice, literally had to be excreting pickle juice through his skin! He doesn't believe me but it HAS to be true!

Unfortunately, he did have a harder time bouncing back after this chemo round. I'm not sure if it was the spinal sedation with chemo or the monthly chemo round but he was yucky for the first time in a while. It was harder to take, since he's been doing so good for so long, to see him that way. The meds definitely helped those side effects and he rested well, which was I hope helpful to his body to get a rest and keep fighting. It's been an emotional couple of weeks for me that started with him being sick this time. He's been counting the days until his 11th birthday since March 1st, just in case we forgot it was his birthday month! Knowing the calendar then brings a special 2-year celebration since his diagnosis just 3 weeks later is hitting me this year. I've read all the old emails in those first hours and days from 2009 from his bedside at Arkansas Children's Hospital. Wow...I'm speechless. It's truly amazing how our brains work and how reading an email can put you right back in that place emotionally, physically, smelling those smells. During this time we've also found out some amazing news that I can't wait to share about a way we can give back that's really good news. The only thing is answering some questions and sharing has peeled back those layers to the raw emotion of what we endured those first hours, days and weeks. 2 weeks ago while on his way to work, Bryan can't help but always glance over at the hospital and be reminded of that night with Brayden in the ER when he was life-flighted on Angel One to ACH. This day, he called me. It sent such a riveting emotional reaction because this day, Angel One was again on the helipad. 2 years later and in many ways, it seems like yesterday.

We do what we can only do and continue to focus on the positive. Brayden continues to persevere and do so remarkably well. That is one of the incredible benefits of our LR trips to be reassured and reminded he's okay. There's so much that continues to battle on just underneath the surface and we don't want to ignore it but we also work to try to keep things normal for all of us, whatever that new normal is for us. We're worried with the increased chemo his counts will drop. While we know that they need to come down to stay in control of his cell growth so the Leukemia doesn't enter back in, we just are hoping they don't drop too low and he can continue doing the fun things he loves.

He's enjoying spring break this week. While planning some fun activities last week, I mentioned his local Oncology clinic visit today. His reaction just broke my heart. "Monday?!?! But it's spring break!" He just didn't remember it continues and never stops - every week. No rest. No breaks. Even for spring break. I tried to reassure him and say the right words thinking in the back of my mind that I wish he could have a break. I hope my feeble attempt helped him. Maybe with a break from school and schoolwork, he can have plenty of rest this week and combined with planning for his big birthday he'll be focusing on things that are fun and exciting to overshadow everything else. I know that's what we are trying to do too...

Thank you all for your prayers and continued support. I can't wait to share the other exciting news and more about his upcoming celebrations. Our hearts continue to be heavy for others still fighting their battle with relapse - a word we hope & pray we never utter in regards to Brayden. Meanwhile another celebrates with good news of remission. So again we focus on the big birthday month and so much to be thankful for and hopefully the next post we'll be a little more upbeat.

We continue to pray for the protection of Brayden's liver function as it filters out the harmful toxins from the chemo. We pray for the protection of his heart. We pray for his already immune-compromised system to remain strong and keep him protected from outside infections. We pray for his healthy cells to remain healthy and the chemo to continue doing its job in complete healing from Leukemia. We pray for protection for Brayden's spirit as he continues this battle to remain positive and optimistic and to be rejuvenated with even more spirit to fight. We pray for the other families fighting that God would lift them and carry them during those tough times and that they would feel Him holding them and feel His love so close. We pray for the many other children fighting that there would be a cure....and no child has to endure what too many continue to face each day.

Spring or Winter?

2011-02-01T05:12:00.002-06:00

WOW! You know it's Arkansas when you have a swing of 73 degrees and the next day you're stocking up for a possible winter storm. Literally, 3 days later, it's sleeting outside. I went to pick up Brayden from school yesterday for his weekly chemo visit and he was jumping up and down as he waited his turn. He barely got the car open before screaming, "School's already closed for tomorrow!" What? I was relieved to not have to hold my breath and worry about traveling on the ice on our hills and curves to get him to school but was laughing a little. Ahh...to be young and think ice=school closing and not ice=power outages and worry for your family!! My sister said it best; it's not like we will starve in 2 days. I will say the -6 actual temp has me a little nervous following this storm. Snow is one thing; ice is another in NWA. We've been burned before!!

Brayden's weekly chemo visit went well. His counts were all in good shape. His adorable nurse gave him some yummy hot chocolate while we waited talking mostly about the impending weather. His counts were in a good range - not too high and not to low - so it's a good week! He's feeling good this week and loving the less pills each day with steroid week becoming a distant memory. We'll hope he doesn't have the nausea today after his methotrexate chemo yesterday. You never know if it will bother him from week to week.

He loved getting outside and soaking up the warm air on Saturday. As for today, he's getting ready to play in some more snow! Of course, that will be after 10, I'm sure, before he wakes up. Hopefully he'll get some good sleep. Mom? Well, a little nervous and on edge worrying about a power outage, but we're praying we stay warm & cozy to enjoy the snow. We pray the same for you!!

Steroid Week = Stare-a-DROID week

2011-01-19T12:21:00.004-06:00

Brayden's made jokes for a while about his steroid pills. There's definitely a scientific reason for everything he takes and we're so thankful for the research that's improved the success rate for treatment for Leukemia. Our family can all agree about one thing - WE DON'T LIKE the steroids! There have been MANY funny stories the past 21 months involving the side effects of steroids: our first July 4th platter of deviled eggs neatly in the fridge the night before and the morning after - GONE! I digress...Can you guess what week last week was? Yes, steroid week. It definitely impacts the cellular activity, so we know there are reasons. We just try to not think about the effects of steroids too greatly. We know there have been MUCH more intense dosages and we've endured those. His monthly dose is much more tolerable - just 1 week. It never fails by that last dose at the end of the week, we're all celebrating. But what we've come to realize is the effects of those can last well into the second week. BOOO!!! I don't know if you've heard of users of steroids who abuse its uses, but those side effects remain true even if you're taking it to help combat Leukemia. So we jokingly call them this because it causes Brayden to turn into a droid for a little bit! Poor guy - I can't imagine what all is going on in his body. I know he does his best to stay true to himself. All the chemicals have such an effect and this is so true of the emotional effect stare-a-droids have. The food symptoms are the least of our worries! We do our best with knowing glances between me & Bryan mentally remembering what week it is in his treatment plan, take a deep breath, and move on. Then, before you know it, our sweet Brayden is back again.

The worst thing about this time of the month in his treatment cycle is how sore it can make him. Some days he's sore to the touch. We do back massages and anything we can to help him. But on these days, it just kills me and makes me physically ill to hear him wince and remind me today's when he's hurting all over. I'm so glad those days aren't lingering and move away quickly.

Monday's chemo at the local clinic went well. Of course, with steroid week, his counts were artificially higher than normal. We throw this week out when measuring his counts since we know it's impacted from the steroids. There were some dips to his hemoglobin and platelet measures, but nothing to be alarmed about. It's hard to look at the numbers and not catch your breath for a second and wonder if it's the start of a decline or just a short-term dip. All in all, he's still doing so remarkably well. That's what keeps us going and propelling us forward.

For now, my little weather man will keep a close watch on the snow forecast. It was just too scary cold last time to let him play in it, but we'll have to get out there and enjoy the white stuff if we get as much as they're saying. He's crossing his fingers he'll get some snow...and, of course, a snow day. Some things never change...

No Snow Days for Chemo

2011-01-12T20:17:00.003-06:00

What is up with it being colder here in Arkansas than in Northern Wisconsin? HUH? This was to be our Little Rock week, but the huge storm that moved in had other plans. Poor Little Rock got dumped with snow Sunday and definitely changed our travel plans for our 5am departure Monday morning. Thankfully, our great nurse at ACH and our great nurse at the local Oncology clinic worked together to ensure Brayden could stay on track with getting his monthly chemo administered here instead. It made things a little crazy with not being sure when we were to leave and worried we needed to make it home before our snow was to hit. Thankfully, it all worked out.

We were really thankful the monthly chemo med was available at the local clinic. Brayden's counts came back really well and all signs were good. He received his chemo dosages and we were so glad this wouldn't mess up our Little Rock schedule either.

I think no matter how much school you miss, at 10, any snow day is still a cause for celebration. The day after chemo can sometimes hit him hard. Thankfully with his school closed he was able to sleep in and get some rest.

This is his steroid week, so it's back to 24 pills per day. He's still a rockstar with knocking them all back. We were a little nervous his chemo dosage might be increased. His counts have been good - but a little too good. In an effort to ensure they keep his new cells in control and keep the leukemia at bay, they are aggressive with increasing his chemo when his system gets too comfortable with the dosage, or, in Brayden's case, he grows and it needs to be adjusted. Thankfully this time, things are staying the same and we'll continue to see how he progresses. We were surprised at how high his counts were 3 weeks ago and then quickly glad when in the following days he started fighting a cold or some sort of upper respiratory thing. We were nervous about his cough moving into his chest and his nurses did a great job of ensuring his lungs were okay. Christmas night was a little scary. I sat up with him expecting any moment he'd spike a temp and we'd have to rush to the ER. Thankfully, his higher counts maybe helped him fight it off and he made it through without a trip to the hospital. The next week we definitely saw the impact to his counts as they had dropped to their lowest point in weeks. Thank goodness!!

It's tough not to be nervous when they're too high and too concerned when they're too low. I'm not sure if there will come a time when our breath doesn't catch right as his blood results are being handed to us.

The New Year brought similar thinking to our small family. It's amazing how 2012 being the year Brayden finishes treatment seemed to loom so far in the distance when he was diagnosed early 2009. Now, as 2011 was ushered in, it was surreal to hear Bryan and Brayden both say separately how it helped 2012 seem not so far away anymore. It's never far from our thinking. And here I thought I was the only one who seemed to keep considering what 2011 meant to us in terms of Brayden kicking chemo for good.

The past few months have been difficult in hearing of so many at ACH losing their battle with pediatric cancer. I can't wrap my brain around that. Brayden and I were half listening to the news the other night when he heard about a memorial service for a local teenage girl who lost her battle with leukemia. The look on his face was so painful. We've tried to protect him from the realities of cancer. It's one of the things we were so grateful for in the beginning...childhood innocence and ignorance about cancer is a blessing. Kids like Brayden don't have a preconceived idea in their minds of what the fight is like. We're praying for those newly diagnosed in their fight and those who have relapsed who have touched our lives since his diagnosis and pray Brayden continues to be shielded and protected from that possibility.

All in all, we have so much to be thankful for. Brayden continues to march on through his treatment so strong. Our family marveled at how healthy he looks in comparing our Christmas card this year to just one year ago. Thank you all for the impact you've had on our lives. Thank you for continuing to pray. We're reminded of you each day when we walk to Brayden's room and see his prayer map on the wall. You mean so much to us!!!

In the meantime, it's back to studying for school and trying to stay warm as my fingers are going numb as I type!! BRRRR!!! We're ready for spring....and counting down even more the 20 months until Brayden's LAST CHEMO CELEBRATION!!!!!!!!!!

Blood Drive Results & Updates

2010-12-18T23:52:00.006-06:00

Thank you to everyone who came out & supported the Blood Drive! We had a goal of 40 units, but were happy that my last donation of the day got us to 24. Every bit helps! Brayden had an early out for Christmas Break and was so thrilled to get to man the check-in table at the blood drive. He did so great! Ms. Korey from the Red Cross so sweetly gave him a beautiful ornament and this cool shirt! Brayden decided to have everyone sign a hat that donated. Towards the end of the day, we were cracking up at him organizing and picking things up all on his own to get ready to go. He was quite the host for the day!

He seemed to really enjoy getting to see those who donated. Both Dad & Mom were able to give and it's a race to see who was done quicker. Of course, Dad always wins that one! Donating blood is truly a precious gift to give. Thank you all who took time out of this busy season to come out to visit & donate!!
Just a quick update on Brayden's treatments - we had a long day in Little Rock this past week. Thankfully, the results were good. Brayden had his quarterly spinal sedation with intrathecal chemo to treat the leukemia cells that were present in his brain at the time of his diagnosis. He admitted he was a bit nervous this time and it really surprised me...he's usually cool as a cucumber. He doesn't like not being able to eat or drink after midnight for his sedations. Thankfully, we were able to get back to the procedure room quickly and there was some tv to distract him as well as some friendly faces in the staff that works with him to keep his mind off of it. It still is so surreal when Bryan and I leave that room after kissing him goodbye for him to get 'the dizzy medicine.' It brings back such strong memories of us walking away while Brayden's enduring life-saving procedures. Each week, we still hold our breath and over analyze all his lab results. Thankfully, Brayden is so resilient and staying so strong without having interruptions to chemo and continuing his weekly regimen. After his sedation procedure was complete and he stayed laying down for the required 15 minutes, he chowed on some yogurt, grapes, chocolate milk (of course) and we went to the floor next door where he stayed upon his first diagnosis and spent many days during the first 6 months of his treatment. It was like a kick in the gut...for both of us. The best part was seeing his nurses! One especially who was in the early pictures and we found out later was the one who came to PICU to give Brayden his first chemo. She couldn't ask questions fast enough and they loved hearing AND SEEING how well Brayden is doing! Another nurse told us how good it is to see the kiddos who are doing well. They don't always get to see their progress and it's so encouraging for them. We learned that 29 precious children at Arkansas Children's Hospital lost their fight with pediatric cancer in 2010. My heart can't handle wondering if some of them were ones we saw while in clinic, sat next to, smiled a knowing smile while walking the hospital halls. Please keep those families in your prayers this Christmas. We continue to be thankful for the amazing staff at ACH. They hold a very special place in our hearts. We've also heard of another one who has relapsed. They're a local family who need your prayers and are at St. Jude receiving a very new type of therapy and we pray even with the dismal success rate, he beats the odds. We also have held in our hearts the past couple of a months a graduate from Brayden's school who was diagnosed with cancer. Our prayers stay close to her & her family.

Brayden continues his regimen this week with steroids, which always come with lovely side effects: extra hunger, wild mood swings, pink cheeks, swollen effects on his body, and the list goes on. Brayden's become a master at taking all his pills in one gulp & I'm amazed how far he's come! Each night between 5-6 pills, each morning 3 and on his antibiotic days and with steroids, the daily dosage becomes 22. He's truly a trooper.

We had a wonderful time tonight getting to visit the Fayetteville Square Lights of the Ozarks! It's been a tradition for a while. Although, last year, we drove around the square in our pj's in the car - since we had just gotten back from radiation and Brayden was in isolation. It was wonderful to get to be out in the chilly weather and Brayden was really into the Christmas spirit! This morning he kicked off the day with barely able to sleep in...some Christmas money in a card from his great aunt was burning a hole in his pocket! Then we went to Lowe's to finish off his train. It's taken 3 weeks to build each part of the train and he did such an awesome job putting the project together at Kid's Clinic all on his own. I remember the days when we needed to help supervise and read the next steps. Those are so long ago. I just sat and watched him and couldn't help seeing the other little kids around whose parents were still helping. Where does the time go?

What a day...he's loving the Christmas countdown and I can't believe how FAST Christmas is approaching! I just want to freeze time a little. I hope we're able to enjoy the upcoming days and knock off all our wishes of things to do in preparation for Christmas. We've got some movies to watch, some cocoa to drink, and some presents to wrap! But most of all, some love to give and some memories to make of being home all together and being so thankful for the true reason for the season! MERRY CHRISTMAS!!!

Conquer Fears - Conquer Cancer

2010-12-16T10:18:00.003-06:00

We need your help! We are hosting our 3rd Red Cross Blood Drive since Brayden's diagnosis. We are more fully aware than ever, on a very personal level, how critical blood donations are. Pediatric cancer and the aggressive chemo that goes with it literally kills the good and bad cells. So many kids are only able to continue fighting because of blood and platelet transfusions. We've had some scary moments at our local hospital and at Arkansas Children's Hospital being told they 'hoped' there was blood available. This is so hard for me to fathom. I guess this should cause us to realize the effect pediatric cancer can have. We hope there is always blood available for each child to continue their fight. Will you help us? Will you ask others to help us?

This is an incredible gift you can give this Christmas season - the gift of life. I know it's a busy time. We hoped having it this time would help, but we haven't gotten much response. If you can, please stop by or schedule an appointment to donate. This is our way of giving back to help other kids. Thankfully, Brayden hasn't had to have a blood transfusion in several months. We look at his blood work results each week to make sure he's not in the danger zone. Thank you for your help in conquering the fear so we can work together to keep the kids fighting and conquer cancer!

Help us donate - it is the most important gift you can give this Christmas!!

American Red Cross Blood Drive in honor of Brayden Jones

Friday, December 17th
Bentonville Plaza, Suite 835
12 to 6pm

Join us to help give back in honor of Brayden's fight against T-Cell Acute Lymphoblastic Leukemia. Since his diagnosis April 22, 2009, he's come a long way! He has 2 more years of treatment left and after some hiccups this summer, we're SO thankful for each blood donation to help him & others continue to fight. So many blood transfusions are needed for him & other kiddos enduring aggressive chemo treatments. We hope there is never a time when parents hear that blood is not available for their child. Thank you to those who have celebrated & donated with us last year in December & this year in May. Please join us again!
- Bryan, Lisa and Brayden Jones

Please remember to bring a photo id or your Red Cross Donor Card and to eat 1-2 hours before donating. To avoid a wait, please schedule an appointment at www.redcrossblood.org and enter sponsor code BENTONPLAZA.

A few things you missed...

2010-12-11T23:11:00.020-06:00

Thank you to everyone for your encouragement to keep blogging. Brayden's doing great. Other than a week or two with low counts, he's done great. So much has happened...we wanted to share with you a few. Enjoy! We're so thankful for each of you & your continued prayers & support.

Annual Son's Day with a trip to the Little Rock Zoo! After a year and a half of frequent trips to Little Rock, we finally got to see the Zoo!!

And...Brayden was finally able to enjoy the swimming pool in Little Rock he was only able to previously enjoy from looking out the window. I told him last summer when he had his picc line in and was unable to swim, the time would be here before he knew it to enjoy that pool! He relished each moment, diving without a care into the water, and it was an unreal, full circle moment for me to see him with such joy.

Thanks to a dear friend, Brayden was able to fulfill a true "Make a Wish" moment by seeing up close the Razorback Football Field & Stadium! 200+ pics later, that was a day he'll NEVER forget after being able to fulfill many wishes in Hawg Stadium! Thank you just doesn't seem to be enough for how amazing this was for Brayden. WOW!

Heroes were among us as a great friend (my former boss) followed his passion & put his dream of competing in an Ironman into a foundation he formed to raise money for pediatric cancer research. Truly amazing...more from me on this BIG event later. It's been truly remarkable to follow Mike's Ironman journey for us all, but especially for Brayden.

Brayden got a tip from a friend that Will Ferrell was making an appearance at our local WM. The Christmas movie "Elf" has been the source of countless laughter at the Jones house many, many times. Last year during Brayden's Radiation treatments when we were staying in Little Rock, we watched it again and again! It was such a wonderful experience for Brayden to get to meet him in person. He was so nice, shook Brayden's hand, and spoke to him. I asked Brayden if he told him he wasn't the real Will Ferrell; he smelled like beef & cheese. Nope - Brayden's favorite line would have been SO good to use there!!

Fall came quickly for us. Last year, so much of this time for Brayden was spent in isolation. Really, from September to January, he was at home the bulk of the time and we weren't able to spend much time with family or continue a lot of our traditions. This year, we are literally soaking it all in and trying to make each moment expand a bit more. Brayden was so thrilled to be able to go back to the Pumpkin Patch this year. I took so many pics! It was a beautiful afternoon and the colors were amazing! Brayden was being so nurturing of the pumpkins he picked! He had a ton of fun with the hayride and exploring as much of the farm he could fit in and picked some great pumpkins!

We decided to make the most of the fall colors and the beautiful fall afternoon & literally let the road lead us! Nini was a big help driving when I'd pull over to the side of the road & start taking pics! We didn't have much daylight left & I was wanting to capture as many memories as I could. My little man is growing so fast!! More than the pictures, I will treasure this exploration afternoon as we ran & darted in the woods & trekked up hills and followed the sunset & the trees. Mommy was definitely spontaneous & I know Brayden was enjoying being there to witness such an event!!

We loved being able to be with family this Thanksgiving. It was a far cry from last year's experience. We had spent the week at ACH with Brayden undergoing daily chemo treatments. Thanksgiving Day, we were in patient. After Brayden was released, we drove home with him still in isolation. I remember being so sad and just exhausted and ready for normalcy. Some dear friends had lovingly paid for a local restaurant to have a Thanksgiving dinner ready for us to come home to. That was such a blessing and SUCH an amazing gift. We did our best to pay that blessing forward this year. Our hearts were full that Brayden was able to again enjoy those traditions this year. Even though we were sad to not be able to see all of our family due to Dad's crazy work schedule, it was a step closer to normalcy and helped us to remember to be thankful. My favorite quote for Thanksgiving that I put in my cards really rings true for us.

"The truest measure of our thanksgiving is how we use the blessings for which we give thanks."

We're hoping December goes by SO slowly for us this year! Brayden continues to recall where we were this time last year - living in Little Rock for 2 weeks with daily Radiation treatments, Brayden's hair loss, and being pretty sick at times. It was startling to me how out of the blue the other day, he said he had that 'taste' again that he used to get during his radiation treatments. After a few strange seconds, I realized he was drinking hot chocolate for the first time this fall! He used to drink hot chocolate each day he'd go to Radiation as a treat. It was a good way to get rid of the taste. It just crushed my heart for him. So being home and being together this year is the biggest Christmas gift for us. Being able to put up our Christmas tree and not rushing and knowing we're home together is wonderful.

We loved getting to go out to the local mall last weekend & just hang out. It occurred to me we had only gotten to do this one other time in the year and a half since Brayden's diagnosis. It was reminiscent of normalcy again and Brayden LOVED getting to be out. We froze but it was good to be cold & enjoy that the holiday season was here!

One of my best friends came over to photograph us for Christmas this year. I loved the moments she captured with Hershey & Brayden!!

Didn't she do an incredible job? I hope this catches everyone up a bit. Please continue to be in prayer for Brayden's protection from the chemo and its effect on his liver and his heart. We are thankful for his healing. He continues with weekly trips to the local Oncology clinic for chemo, his nightly chemo regimen, monthly steroids & additional chemo at AR Children's Hospital, and every 3 months chemo via his spinal fluid. He's working very hard in school and definitely has had to work harder this year. We're not sure if this is a result of the radiation effects, but he's had to overcome some other things. All in all, we hold firm to the strength he possesses and continues to be resilient above all expectations. His wonderful Oncologist continues to reassure us of how well Brayden continues to do and respond to treatment. Thankfully he hasn't had any recent interruptions to chemo and we hope and pray it continues to do the work of keeping Brayden on the road to full healing.

We send huge wishes to each of you & your families this year. I'll work to do better of keeping updates here. Your encouragement to do so pushes me beyond the hard times some time as it's still a week to week battle with new blood results to agonize over and hold your breath while reading. But I am reminded how much we have to be thankful for...and that is what we continue to cling to each day. MERRY CHRISTMAS!!!!

We're on a roll!

2010-09-08T19:19:00.002-05:00

Wow - Labor Day? Really?!?!?! We had a great kickoff to the holiday weekend with getting to go to the Drive In. I love that we still have one around. We've wanted to go sooner but there haven't been many kid-friendly movies playing WHILE weather was cool enough to breathe! Thankfully, both worked out timed perfectly. Actually, we got a little chilly! The temp definitely took a nose dive that night after the cold front moved through the night before with some vicious storms Hershey wasn't happy about. We took lots of blankets and snacks and were snuggly buggly in the back of Dad's truck to watch some good movies. We had a GREAT time, even with the cold air and all the dampness clinging to everything...oh, yeah, and driving home at midnight. It was a terrific weekend to do it though, right?

Saturday Brayden & I enjoyed some fun Mom & Son time with a trip south to a great town and our fav mexican restaurant and enjoyed some yummy ceviche! Oh...and he endured a trip to Hobby Lobby. It was good times. In case you haven't heard, college football season kicked off and in the SEC, it's business! So we had ESPN on the radio and he was literally running from TV to TV in the restaurant. Thankfully they weren't busy so it wasn't distracting others. But not only was he trying to keep up with the other conferences, we were on a strict schedule to be back home for our beloved Hogs kickoff! I've gotta say, I've told my hubby before how lucky he is to have a wife who loves football. But this kickoff weekend? By Sunday I was needing a break! My boys were hard core in the arrival of football season. I realized when looking at the sun coming through the windows, the cooler air, and football on - fall is definitely here! Where does the time go....

I was happily scrapbooking while listening to the Hogs on the radio at home that night. It was a great thing to feel like we all had a little more time with the extra day on the weekend. We typically dread Monday's because it's treatment day locally or we're making the drive to Little Rock and it means a 4am morning. Luckily, we all got a Monday off, as the local clinic was closed. So the weekend felt ESPECIALLY long for us and for Brayden. I loved getting some time to scrapbook. Then we enjoyed visiting with our sweet friends who came over Sunday afternoon as well as spending time with family.

Tuesday still came too quickly. We spent Sunday replacing a dryer that, honestly, looks brand new. Bummer...and thank goodness for wonderful friends who are so helpful. Anyway, my adorable, sweet boy informs me at 9 o'clock Monday night (even with a long weekend and me asking the same question on Friday), "Oh - Mom? I have 3 tests tomorrow." Great. Not sure what we can do about that with no time to spare the night before when we had extra time to study this weekend. Please tell me I'm not the only one? Is it a boy thing or a 10-yr-old thing? We're still working on that trying to let go and empower Brayden to be responsible for his work. Oh, that's tough. We want to encourage him to do his best and still hold high expectations. How high is too high?

So back to Tuesday. Brayden had a great time as usual at the local clinic. The oncology clinic is always very full the day after a holiday. It's so disheartening to see so many receiving treatment. I'm wondering if they're starting to dread Brayden's silliness & teasing of the nurses but I'm hoping it brightens their day to see him smiling and energetic and happy to see everyone. Brayden's definitely on a roll! His counts were great again!!!! He's definitely on the right trend to have his chemo increased to compensate for his recent growth. And, man, how many times lately have people commented on how big he's getting?!!? Steroids definitely are helping that but certainly a lot is also genetic with Dad coming in at 6'5". Brayden's doing his part to keep up. We were really so thrilled that Brayden's counts have remained so steady. I've gotten so rattled lately with him having a slight runny nose - most likely allergies like mom - and hearing of kiddos in class being sick already! Yucky strep...Thankfully, he's done great without incident. He was happy to get to go celebrate with another haircut. Wow, now it's really growing fast and thick! He looked like a mini me of his dad when they got back from his haircut. He's so precious!

Poor, sweet Hershey had to go in today for a sedation. Brayden was relating all to her in what he's gone through. She had to have a full cleaning on her teeth. With how docile she is, I'm betting she could have been fine to stay awake. But bless her heart! She's so out of it! I can't imagine putting her through this again next year! Brayden's lost his sympathy quickly for her wondering why she's still so out of it! It's been hours already! By now he's up & running and ready to eat after his sedations! We're hoping she feels much, much better tomorrow and doesn't hold it against us for trying to keep her healthy.

I was looking at a lot of pictures this weekend and came across the pictures from the weeks prior to Brayden's diagnosis and the days and weeks after. Amazingly, I don't even remember doing it, there are some pics of him from the ER that night & from ICU on my old cell phone that I developed. I hadn't been able to convince myself to look through them yet until this weekend. It was so staggering how at the time we thought he was fine yet looking back how fragile he looks. He was so thin in the weeks following and so weak. His little body was put through so much! It's amazing to see how much progress he continues to make. We're so thankful for all of your continued prayers. Each time someone asks me how he's doing, I am reminded of how blessed we are with how healthy he's remained even through the hard times and all the ups and downs and uncertainty. The risks are so great and he's remained on track and doing so well with his treatments.

We've got a big weekend coming up. Have I told you about Son's Day? When Brayden was about 4, he asked us about why there wasn't a holiday for Sons. There's a Mother's Day, Father's Day, Grandparents' Day...what about sons? I told him, "Sweetie - for you, every day is Son's Day." So true. But we kind of stumbled onto something fun and have continued the tradition. We've had to adjust it around this year & last year since it used to be in July. But we'll be celebrating this weekend. Sometimes we completely surprise him with fun activities for the day and other years we've let him plan every detail in advance from what time we get up to what we eat and so on. This year we've been working on some things we'd hoped to do with him sooner but we're glad his counts are good and we can finally celebrate. I can't wait to share more about it later!!

I feel the need...the need, FOR SPEED!

2010-09-02T12:19:00.020-05:00

Friday, August 27th - Little Rock Air Force Base - 53rd Airlift Squadron

Okay, so I'm a doofus in forgetting I already spilled the beans on here about Brayden's Pilot for a Day! I guess the surprise is when it happened? He was SO thrilled to be chosen 1 of 4 boys by his Social Worker at Children's to get to participate in this amazing opportunity. All 4 boys that went are receiving treatment or care at Children's for various reasons. It was neat to meet another Oncology patient & family. Little Rock Air Force Base has started this new program in allowing these kiddos to get to come on the base and be a Pilot for a Day! Last Friday, we started our day VERY early at 4am to drive to Jacksonville, AR, for the big event. Driving up on the base was incredible. We were greeted with a huge C-130 right on the parking lot. I was worried about Brayden touching anything but they were so encouraging that nothing was off limits.

Our pilot guide told Brayden that plane was actually flown in Vietnam. WOW! Getting to meet Captain Jason who is a C-130 pilot was really neat. He exuded that pilot confidence you only see on tv - shades & all!

Seriously, he was a joy to have around us that day and show us what being an Air Force Pilot is really all about. He was so down to earth and it was only when other personnel came in contact with him on the base we remembered, this is the real deal! Captain Jason and Sergeant Tom were amazing hosts and we were honored to be their guests for the day.

Once we met the 3 other boys and their families, we were off to our first stop - the beautiful outdoor museum. There were several plans & helicopters on display along with a time capsule the boys thought was really cool. Seeing all of this up close was surreal to think about how each is used to help protect our country and freedom.

The next stop was touring the EOD - Explosive Ordinance Disposal facility. We got to meet the awesome Ms. Brown (please forgive me for forgetting her title!). She was incredible and really gave me that "You Go GIRL!" moment. She had literally just returned from Afghanistan a couple weeks prior. This phenomenal soldier is actually over there diffusing bombs and working to keep our troops and the people safe from terrorists. If you've seen the Hurt Locker movie (we haven't), she pointed out how accurate it is to what her job really is each day. She demonstrated her bomb suit which weighs over 70lbs. Her helmet alone is 40lbs! It was amazing to hear her tell us how the owner of the company that makes the bomb suits ($50k each!) demonstrates the effectiveness of the suits by putting them on himself and getting blown up on camera to prove how safe the suit is for our troops! Bray thought that reminded him of Ironman.

We were thankful to Capt. Jason for holding up the 40lb helmet so Brayden didn't collapse! The boys were able to tour the mobile command unit and disposal vehicle that they use to respond to bomb threats and that it's also used for some celebrities and foreign dignitaries. COOL! We asked if names of who she's protected is classified. Nice. Next, she introduced the boys to JERRK - Joint Effort Rapid Response Kommand Robot. While she began demonstrating all the buttons and controls of the robot, she was explaining how it is used to help protect soldiers by allowing the robot to get closer to the bomb. It was amazing to hear how they're using this technology to diffuse the bomb in order to be able to use the bomb components as evidence to catch more terrorists. To use the robot & diffuse a bomb is a huge victory in their work. She began to demonstrate how the robot works and was working to figure out why it wasn't moving. The best quote of the day was when Brayden said, "I think the safety is on." Bambi smiled & had to give Bray kudos for being so smart - it was on! Capt. Jason seemed to get as much of a kick out of that one as we did. I suddenly realized why he was over in the corner sitting on a tractor when Bambi handed the controls over to Brayden. He loved getting to maneuver the robot and it's shoulder, elbow, wrist controls to practice picking up a fake bomb. Bambi was amazed at how well the boys do when she's worked with Air Force Pilots who couldn't do that well with the robot their first time. I don't think Capt. Jason thought that was as funny as we did. Meanwhile...I swear I could hear the "Danger Zone" music playing in the background.

We all cheered when Brayden was able to successfully pick up the fake bomb with the robot hand. It's amazing to think if this were a real EOD, it would only take 1/2 lb of pressure to detonate it. How incredible that this is her job!!

I saw Capt. Jason peeking outside through the windows while the boys were operating the JERRK robot and was wondering what he was smiling and in awe about...then I saw it. The SEGWAY!! Capt. Jason was sure to the let the boys know he'd never gotten to ride the segway before. Bambi then showed the boys how the Segways are used to assist them in diffusing the bombs. No wonder - with the 70lb suit & 40lb helmet, the segway is a big help in getting them to the bomb location quicker AS WELL AS getting them away from it quicker. I took some deep breaths & tried not to be the over-protective mom of the group. The boys watched with wide eyes as she demonstrated how to ride the segway. The other mom was in disbelief that someone on base didn't get the memo & parked their BMW out there! No one told them there would be 4 boys on the base learning to drive/ride a segway within close proximity! Thankfully there were helmets and Bambi did a great job of staying right with Brayden. Everytime he'd come close to where he started out, he'd do a QUICK turn and head back out the other way. You could tell he was loving it and didn't want his ride to end.

Brayden's attention as soon as the segway ride ended was on the airstrip right next to us. You could see the C-130's taking off then coming back in to land. Bambi explained to him that this is how they practice and they do routes around Little Rock. We couldn't believe how close they were and it was so neat to watch. Little did we know how much closer we would get! It was really neat to tour the Ammunition Room. There were SO many different bombs & shells and the boys were free to explore. Brayden thought it was really neat to be holding a 50 caliber shell, hand grenades, and this cool bazooka thing he had on his shoulder. We were clueless but the boys thought it couldn't be cooler.

We next headed over to the runway. WOW! Were we ever up close! We were told the media would be there and Brayden wasn't too happy about the tv camera. But being able to climb inside a real C-130 on the runway made him forget about the camera all together! The boys were a flurry of activity being right on the runway & so close to the action of the planes landing & taking off back to back, jumping in the pilot seat & getting to check out all the buttons, the cargo area, and seeing how the real heroes return home from overseas in these planes. AMAZING!

The next stop was to the 53rd Airlift Squadron for lunch with all the pilots! This was really neat to hear stories of those who had just returned from overseas or who was missing because they had just deployed. There was a special honorary 'Winging' ceremony for each boy to receive their very own flight suit, scarf, and token. This was very special and a big deal. Not only did Brayden get to sit with Sgt. Tom & Capt. Jason and enjoy some yummy pizza, the guys really went out of their way to make him feel at home and very honored. As soon as Brayden received his flight suit, he looked to Capt. Jason for approval & took off! I told him I only could hope that Brayden didn't return with his flight suit on with his clothes in hand!!! I definitely made sure to ask about the care of the flight suit & they were quick to assure me they are machine washable. I told them, "Good, because I have no idea how I'm going to talk him into getting out of this thing!" Brayden was so proud to show back up in his very own custom flight suit with his own name badge. Sure enough, he literally wore it the rest of the day, on the way home in the car on the long 3 1/2 hour drive, out to a restaurant for dinner and then couldn't understand why everyone was staring at him!! He just needs his own pair of aviators and he's really set! Cue "Danger Zone" music again.

Next up was a tour of the Air Force Fire Department. It was pretty neat to see when we got there, they were just returning from being out on a call! Thankfully everything was okay, but we found out 2 planes were coming in & 1 engine had gone out and another had a distress call on board. Wow! The boys were allowed to completely explore the fire engine and see one of the men demonstrate the imense fire-proof suit they have to wear. They boys were able to see how if they stop moving, there's a distress signal that is sent and how it has it's own breathing system for the men while they're in the suit. Brayden loved being able to climb into the fire engine and explore all around. Everything was SO BIG there!

After telling the boys about how much water the BIG fire engine holds, they took them outside and let them climb into the monster. I wish I remembered what it was called, but we thought it was really cool how this thing can shoot water inside the plane in case of a fire. They warned the boys not to be close by when the water shoots out! Each boy was allowed to sit in the driver's seat & push the buttons to spray out the different water shoots depending on the type of fire. It was really neat to see how high the sprayer would go and how loud & strong the water was!

Oh, our final destination. The boys knew it was coming yet no one was prepared for how amazing it was. THE FLIGHT SIMULATOR! We had an instructor who is the most experienced on C-130 training and explained to us how this is how all pilots are now trained. They only fly in an actual plane 1 time before their training is complete. It costs nearly $6MM to train 1 pilot and only 1 hour in the flight simulator costs $20,000! Needless to say, the parents were all thankful for the 1 hour our boys got to spend but I know I felt a little guilty about the cost - WOW! We were surprised to learn we'd be able to go with the boys - 30 min flight, 6 people per trip, so we broke up into 2 groups. Brayden was the youngest boy that day but letting others go first was something his excitement erased that day! He was out the door first already on his way to the simulator with Capt. Jason. This thing was AMAZING! I'm getting dizzy just recalling it. You really felt like you were in a plane. The computer has so many abilities to make it any type of weather environment, any time of day, any location. Brayden got to start out taxiing down the runway of the actual Little Rock Air Force Base! It was SO realistic! He got to take off and I looked at Nini & the other Mom and realized what we were in for! Thankfully the instructor was at the computer to help 'lessen' the impact we might have felt of some of the maneuvers Brayden tried. I kept reminding him to listen to everything Capt. Jason was telling him and was SO thankful he was in the co-pilot seat. Brayden got to fly closer to the simulated downtown Little Rock, circle around, try to land, and then took back off again without stopping!! It wasn't too much longer he was starting to realize he was really in control and took a nosedive! We really felt it and thankfully the instructor helped stop the simulator before we all felt the effect of a crash! Here are some of Brayden's quotes from his 'flight':

"SWEEEEET!!!"
"You guys, I'm probably never going to be a co-pilot again!"
"Hope there's an emergency brake in here!"
"Mom, are you seeing this?"
"Should I get the oxygen tank?"
While taking a dive..."I just did that to get you guys' attention."
"Yeah, uh, I was crashing from 30,000 feet, but at least I landed on soft grass"
"Uh, Captain Jason! Help me here!"
Then, on the way home later while recalling the incredible events - "I really flew that bird"

The next boy got his turn to 'fly' and the instructor worked with him to refuel in air from another tanker! So cool. I sat by the control panel and got to see Brayden's flight path (big circles!) and kept marveling at how amazing this all really is! This is Brayden's picture that the Editor of the Base Newspaper took and displayed on their website for the event.

What a day! I've never been so tired on one of our trips to Little Rock. But it was SO worth it. Brayden insisted on keeping his flight suit on and was exhausted & snoozing before we were too far away from the base. We were sad to say goodbye to these real life heroes who went so far out of their way to celebrate these special boys fighting their own battles at too young of an age. This was truly a dream come true for Brayden and he knows he got to do things many people just wish of being able to do! It was an honor to meet each soldier and we owe them a huge debt of gratitude for their service. We feel like thank you is just not big enough but THANK YOU for this incredible honor of being able to spend this incredible day with you! Thank you to ACH and Carrie for nominating Brayden to be able to take part in such a special event. Thank you to everyone at Little Rock Air Force Base for making us feel so welcome and allowing us to see Brayden so full of joy and excitement and getting an escape from his battle. Special thanks to Nini for going with us, helping to capture all these important and once in a lifetime memories, quotes & pictures, as well as helping to keep me awake on the drive home! I hope you all enjoyed sharing in Brayden's amazing day. I didn't think we'd ever be able to sum it all up since we were on overload from all the neat things he was able to experience. PS - we're already thankful the flight suit is machine washable!!!

Another great week

2010-08-31T19:12:00.001-05:00

Brayden's results turned out great again Monday when we went to the local clinic for chemo. 4 weeks to go and his chemo should be increased to keep up with his growth. We keep trying to remember this is a good thing! We're very thankful his counts have remained strong and steady for a while now. He's staying busy in school and has been wearing himself down a bit from all the increased activity with recess, PE, and keeping up with the boys. We know it's a good thing. He's been having more pain in his legs again from the Vincristine chemo drug's effect on his neuropathy. All in all though, he's still doing so well. We're really thankful.

I've got to get some pictures uploaded from his big event Friday. I don't know how I'll be able to keep it brief since there was SO much excitement!! Hopefully I'll be able to post very soon with the details. Stay tuned!

2 year Countdown

2010-08-26T11:32:00.003-05:00

Well, we're 1 week in to 5th grade and things are going great! Brayden has been SO responsible for his work, we've really been proud of him. He's been a little tired at night. The first night he crashed in the floor while watching some football, so you know he had to be tuckered out to miss seeing a pre-season game. We definitely can tell he's been playing his heart out at recess and is so glad to be back with his friends. Each day he wakes up eager to get going and has been reading on his own at night, laying out his clothes - wow. He's really growing up!

Monday's chemo & bloodwork this week at the local clinic yielded amazing results! Brayden's counts were super high for the first time in SOOOO long! We knew they would be after a week of steroids, but we didn't think that high. Let's hope this is an indication his system has rebounded. His sweet nurse in Little Rock at Children's showed me his chart and how he's had a good 5-week trend of counts in the 'safe' zone. But until they come up into a higher zone for 6 straight weeks, we can't increase his chemo. His chemo should have been increased in June, but his system was too low to handle it. Our little man is growing and has grown since the 3 months prior and it causes his chemo dosage to have to be adjusted to compensate for his 1 inch taller and couple of pounds bigger. Did I mention he's wearing size 11 shoes & is 5'1" plus some!?!? So once we see his system becoming stronger, his steroid & weekly antibiotic (to prevent pneumonia) has already been increased and then his nightly chemo, weekly chemo, and monthly chemo dosages will also be increased. We were all concerned however if we had done this sooner, it would have sent his counts bottoming out again and in the Neutropenic range. We didn't want another hospitalization. It's hard to grasp that even though his counts are safe right now, they are still DRASTICALLY lower than the average child. I was reading about more recalls this week. Of course these all say the average person would be fine, but in people with compromised immune systems, it can be lethal. Well, Brayden has been and will continue to live with a compromised immune system for 2 more years. It's a good reminder for us to continue to be vigilant with his health and not let up for a second. I think some people probably tease or think we're crazy. But the fear you feel when his weak immune system is in danger because of a cut or small virus, or flu, it can be so scary that it ignites that protection for him during the times when it appears all is well. Hopefully he'll continue with a good trend the next 5 weeks and we can bump up his chemo. Again, strange to be hoping for a stronger chemo dose, but we want to be sure he's receiving all he can so that it can do the work it needs to in order to ensure the Leukemia NEVER returns again.

This visit to Little Rock was more fun for us. We laughed a lot with his awesome Oncologist and hearing his stories. We FINALLY remembered to ask for a picture with him. We also remembered to take some pictures of him outside of the hospital like he's been asking to for a while. We're always eager to get inside once we arrive at the hospital and then so eager to leave after being there usually 5 hrs that we never remember to stop and take some pics. They turned out so well and I'm so thankful for those memories of Brayden in front of the ACH logo. He truly is resilient with this battle and we're so proud of him.

August 2010 marks a big countdown. Brayden's end of treatment will be in August 2012. He'll be 12 and be about to enter 7th grade. Wow. We did some calculations recently and he's exceeded 5,000 pills taken since his diagnosis. He LOVED hearing that feat! He's such a pro now with his pills! He can down all 3 of his morning pills in one gulp and is pretty proud of his accomplishment! His nightly 5-12 pills (depending on the day of week) take him seconds now. He's come so far since first learning how to swallow pills at all!

We've got a couple of follow-ups coming for him in his treatment that we need your prayers for. He's going to see an Orthopedic Specialist about the ligaments in his foot. He made need a corrective shoe insert to help his walk which the Neuropathy in his legs isn't helping. His leg pain was better in July but the last 2 weeks he's been hurting more again. I bet being more active at school is helping in some ways but bringing more pain too. He wants to keep up with the other kids so badly. He also will be seeing a Urologist for some other things that we were worried about earlier on in his treatment. Secreting so many toxins with all the chemo drugs can really wear down his system. Thankfully his liver enzymes have still been better, but his bladder and other things we want to be sure is doing okay. He's on some preventative daily meds just to be sure it doesn't cause other infections, but his Oncologist wants to be sure he's doing okay internally. I'm so glad Brayden's an awesome water drinker as that has to help somehow.

We've got something BIG coming tomorrow! I can't wait to post & share pictures on an amazing opportunity for Brayden. We've been so excited for this and we're thankful for cooler weather today to hopefully help make an awesome day even better. Thank you all for your love, prayers, & support!!

Happy 1st Day of 5th Grade!

2010-08-19T12:17:00.001-05:00

What an exciting day! We had our doubts a few months back whether or not Brayden would be able to re-join his friends for the first day of school. He's certainly had a rough start to the summer with 2 blood transfusions, neutropenic isolation, a hospitalization, and having to miss chemo for the first time. Thankfully, he's been on a great streak the past 5 weeks with much better results. So after getting to surprise him by sneaking away to WM one evening when we hoped it wasn't crowded, he got to pick out his own school supplies for the first time in 2 years. His diagnosis came one month before 3rd grade was over and was in full force all of 4th grade. It's almost unreal to try and wrap my brain around that. He's endured so much already. The good news was seeing his excitement when we told him what we were up to. He loved getting to pick out his own stuff. Back at home, he packed & re-packed his backpack so many times staging all his new goodies. We were so thankful when his results last week in Little Rock let us know for sure he was starting out the week with better counts and with this being a steroids week, he would for sure get to join his friends for the big 1st day!

We were able to meet his 5th grade teacher the week before school started. Bryan and I have been so excited that he would have a strong male influence this year. We absolutely love his teacher and his ideas, his plan, his strategy. We're thrilled about possibly having to be so involved in his day to day schoolwork like we have been for all of 4th grade. The kids at school certainly have a healthy fear for this teacher, being a Chaplain in the Military. But we're pumped for the structure, discipline, yet fun that comes with it.

Brayden and I planned out while we were in Little Rock his lunches since we have to make his lunch each day for school. We had to go back over the Germ-X plan and reiterate using those Clorox wipes on his table at school before eating lunch. We stressed drinking plenty of water and hoped he wouldn't overdo it. He put in his request for his special 1st day of school breakfast and I was so thrilled to be planning this for him. He was so excited and so looking forward to normalcy again with his class. The night before he confessed he was nervous. I can't imagine what he must be feeling. Everyone has witnessed what he's been through and they know his story. But with that comes amazing support, love and encouragement. We have been so blessed by this school and are thankful for the families within it.

The big first day Brayden beat his alarm clock out of bed. He had layed out his own clothes the night before and beat me into the kitchen to start prepping his lunch. Wow how the first day of school times have changed. My little man is growing up. I relished those special things for the first day and realized he's wanting that responsibility and taking ownership. It's a great thing, but sad for me to see how his needs for his Mom are certainly changing. I was so proud of how prepared and ready he was & of course had to get our traditional pictures. We loved that drive again to school in the beautiful sumemr mornings. Brayden had to stop on the creek and roll down our windows again to listen to the water. Ahhh...traditions and the comfort of normalcy. Except for remembering all his morning meds, it's almost like everything else going on under the surface wasn't there for a minute.

Thankfully, Brayden tried to give me a hard time the night before about me walking in with him. I would have been worried if he didn't. But I think he knew by my look back to him that there was NO way I was giving up the morning picture tradition! He obliged me and I promised to not over-do it. As soon as we were out of the car, he was running into school, he just couldn't get to the door fast enough. He was so excited about this last year of elementary school and the bigger desks, the change in responsibilities. We were happy to see some new faces and another boy! With only the same 3 boys in class, I think they were happy to not only have a male teacher but another boy to get closer to evening out the score with the girls! It was tough to tell him goodbye but I was filled with happiness for him getting to enjoy the normal 10-year-old things of life.

That afternoon, we continued with our tradition since Kindergarten of a cookie from Jimmy John's and debriefing us on the day's activities. His favorite part of the day was recess. He loved getting to play soccer again with his 'boys.' Ahhh...breathing in normalcy.

Full Circle

2010-08-15T21:58:00.004-05:00

What a week! Brayden soared in his blood results. This being the week we thought they would be the lowest, his counts held steady & he was able to continue his chemo regimen without interruption - yeah!! We were astonished and so thankful to see his ANC's holding steady, his hemoglobin still looking good with the 2 previous blood transfusions from just a few weeks prior still echoing in my head. We celebrated the great results with some yummy sushi for dinner. The highlight of the week was meeting his new teacher! Bryan and I had shared a couple of high-5's after hearing some of the plans for the year. We know this is going to be so good for Brayden.

Even with all the heat, Brayden managed to enjoy some fun fishing with Dad, playing outside in the water and laughing our heads off at Hershey on a daily basis. Hershey turned 7 and we celebrated by torturing her with barks & howls and laughing until our stomachs hurt at her cuteness. One night we had a fun time eating at one of our favorite local places and saw a table full of about 25 people. We couldn't help but notice their Arkansas Children's Hospital t-shirts. My wonderful company has been a repeat sponsor of a wonderful charity each year to benefit ACH. Knowing this week was a big week for the charity, I quickly put the pieces together. It was neat hearing their leader encourage the volunteers for all that they would be enduring over the next several days in the grueling heat and reminding them what was most important: the kids. I couldn't help myself. I begged Brayden to let me say something. Finally, as everyone was leaving, I spoke out to the leader thanking her for all they were enduring. I introduced her to Brayden and she introduced herself. Wow...this was the same sweet lady who had called us during the early days when Brayden was in the PICU and offered her help. Both my former company and current company reached out to her & the Foundation and we were so moved at their willingness to help us in any way we needed. At that time, we had no idea what we needed, but it was so reassuring to hear her reach out. Fast forward to now she's here right in front of us and we're finally getting to meet. She was so sweet talking to Brayden about his Dr. and his treatment plan. We thanked them again for all that they're doing.

The next night, we used our tickets each sponsor company receives to attend a beautiful gala. It was truly amazing. So many familiar faces & a few celebrities. All of this to raise money for ACH. I was dreading the dressing up part & social aspect of the night. But what pushed me into going was that it was for such a good cause. Hearing the story of the family that was ACH family of the year was gut-wrenching. It was amazing how quickly it took me back to the early days of so much uncertainty. Hearing the Mom talk about the Angel 1 flight literally brought it all flooding back to me again. My emotions were so overwhelmed with it all and praying one day we'll be celebrating Brayden's full recovery & clean bill of health. Seeing the family in person with their son who had been treated as a preemie at ACH was certainly moving. It was remarkable to see how much money was raised in such a short amount of time. I felt so thankful for each person who gave of their time and money for the event, since we see once a month the fruits of their labor and have felt it first-hand. It truly was a full-circle evening. Hearing of the events in years past and always being reminded of things that we did for the foundation in hopes that it would help others, being thankful ACH was there & praying you never had to be a recipient of its services. And yet we have, and I realize now more than ever how thankful we are to so many contributors. Thank you to each one of you for all that you did to help! It was nice being able to laugh with the girls and seeing so many sweet, friendly faces, and hearing others ask about Brayden's progress. I was thankful we've had a great 4 weeks to report and share. And it makes me yearn even more for the days of normalcy ahead.

Countdown to breaks, school, & flying!

2010-08-06T09:26:00.003-05:00

I can't believe another week has flown by! Things outside of home & family have been insane this week: long hours at work, both vehicles being in the shop, and the list goes on. Thankfully, there have been people around reminding me of what's most important: my two sweet boys at home. Brayden had a great Oncology appt Monday. His counts had dipped a bit but he was still in a good range to still get chemo. I'm really curious if he'll hold and make counts Monday. But, one week at a time, right?

So for this week, he's doing great. He can't stop talking about the school countdown. He'll be on steroids the week that school starts, so we're hopeful he'll be able to return back with his friends. He's been packing, un-packing & re-packing his backpack! He's so excited about his teacher and we're excited for a strong, male influence this year who is great at instilling a little bit of healthy fear into the students! Brayden's the perfect age to have this impact so Mom & Dad are very excited about 5th grade!!

We're hopeful for a fun break coming up - more to follow as we count it down. We all need a chance to re-charge our batteries together. This week, Mom enjoyed a birthday. My silly boy has realized I'm not 29 anymore and is having TOO MUCH FUN reminding everyone else, too. Brayden loved getting to visit with his cousins and enjoy their time together. We've gotten to enjoy the Farmer's Market, trip to Lowe's, snow cone treats, FUN, FUN, FUN!! Summer has flown by so quickly with too many weeks in isolation, so hopefully we can make the most of the weeks coming.

Brayden was nominated by his Social Worker at ACH to participate in a VERY EXCITING program! He will be going to Little Rock Air Force Base and be a pilot for a day! He will have a custom-made flight suit, participate in a flight simulation, many other events and finish out the insanely awesome day with graduation. He's SO pumped! We were so grateful and so honored that Brayden was nominated and will be able to have something so exciting to look forward to. What 10-yr-old boy wouldn't want to do this? It couldn't be more perfect!!

We're continuing to hold our breath to see if Brayden's counts hold up for the 6 weeks we're watching. At that point, his chemo dosage will be increased to keep pace with his growth spurt the prior 3 months. Even though we're not looking forward to it, we know that to keep him healthy, safe, and moving forward to full remission, this is what has to happen. We're praying his bone marrow remain strong & producing healthy cells while his liver continues to stay strong in filtering out all the toxicity. And, we'll keep counting down but remembering to enjoy the moments in between and focusing on what's most important!!

15 Months & Counting...

2010-07-26T21:00:00.002-05:00

Once Brayden reached the Maintenance Phase of chemo, we heard the date "August 2012" as end of treatment. So knowing August is on the horizon helps to see we're getting closer to the finish line. 15 months last week since diagnosis...2 years to go. Brayden asked me questions again today about what happens after treatment. I've heard from other moms, you hold your breath and pray. I suppose that will continue for a while after treatment. For today, we had a good day. We were welcomed by the awesome nurses at the local Oncology clinic. Brayden had gone through his game bag filled with things given to him by sweet friends during his early days. We were excited to play a new game we both forgot about today during clinic. We had SO much fun while I secretly wondered what his blood results would bring. After a week of steroids last week, I had hoped they'd be high enough to sustain him for the weeks of treatment to come. They weren't as high as last week, but still in a safer zone. He was able to get chemo, which they've increased by 1mg with his recent growth spurts. Have I updated here that I have a 10-yr-old who is 5'1"?

We decided to take a quick run by Hobby Lobby today just to look at the models and hang out. It was a nice treat for him with slightly good counts. He had SUCH a big weekend!!! He was able to hit the park & fish with Dad, see a movie with his cousins & aunt & uncle, spend the night with Nini & Papaw, & swim outside with a good friend! We loved getting to be outside and soak up some sun. Bring on the spf 100 & Dad had to pick him up early but he still loved being outside in the pool and loved every minute of it! We were SO happy for a fun, activity-filled weekend. Last week with higher counts he enjoyed a special treat each day, whether it was HH finally (Sonic Happy Hour) or a slushie, or getting to sneak away late after dinner one night to WM to shop for school supplies as a last-minute surprise!! We've loved the freedom and fresh air this week has brought. It's been a welcome relief for all of us, but especially for Brayden. He's spent each night prepping his backpack for school and CAN'T stop talking about 5th grade! He is SO excited. I'm so thankful he'll have some normalcy return again. Even though the school pace is a bit more hectic for all of us working hard on schoolwork, it's going to be a welcome relief.

Brayden's been having more leg & body pain. He's scaring me yesterday & today with more exhaustion and headaches. I'm hoping it was just a busy week and all the activities catching up with him. There are always fears looming behind when he has pain or side effects. There is so much the chemo can cause and I hate to see him have to deal with those effects. We're praying for Brayden's stamina to increase, his liver to remain strong & continue to flush out the toxicity of the chemo, his counts to remain stable and his bone marrow to be strong without leukemia blasts. We pray his spinal fluid remain clear and his headaches to subside. We're waiting to hear back about the tendons in his feet and hoping that something can be done to help and the neuropathy not to worsen. Here's to another great week!!

Sighs of Relief & Answers to Prayer

2010-07-21T11:05:00.002-05:00

Wow - Monday started off again SO early, as the Little Rock days always do. We were thankful to have safe travels & a Daddy to drive so Momma could get some winks of sleep & a stubborn boy who did NOT go back to sleep! We got to ACH 30 min before our appt time - and sat for EVER. It's sobering how busy they seem to get each time we're there as we hear about new diagnosis cases & how many MORE children they continue to see day after day. The statistics about childhood cancer, while much better than years prior, are still so scary to hear. It's hard for me to be so brutally honest sometimes. I try to cushion it on here or stay away from it altogther. But the numbers are something I couldn't shake this time: 1 in 5 will not make it. So this time, while looking around the room at so many other children fighting, it was almost more than I could take. We've continued to see the same children in our 15 months since diagnosis, as of today. This time we saw one get to cross their fingers and hope this is their last chemo treatment. We met an adorable 4-yr old little boy who decided to be best buds with Brayden. He came trotting over (after saying, "I love you, Mother.") to check out Brayden's DS. Brayden was so unselfish in handing it over and helping him along. It was SO precious!! I talked with his mom who is expecting another one and couldn't imagine how she was juggling it all. Her son's diagnosis was ALL - but the lesser aggressive form. Thankfully he didn't have to endure Radiation or the aggressive chemo drugs or the longer treatment plan. I think it was neat for Brayden to hear they shared a similar Leukemia diagnosis, yet confusing to hear of his path being a little different. More realizations...Bryan said later it just broke his heart to see that little boy knowing he was about to receive the Asparaginase shots in his legs like Brayden had. Those feel like acid burning from how we've heard it described and knowing what he was about to go through after seeing Brayden endure that multiple times first-hand was heart-wrenching.

We tend to keep to ourselves. Sometimes it's scary to become attached to other families as you see them struggle. Plus I know sometimes you don't want to talk & share and know how long it took me to finally start looking around the waiting room at the many faces. Even after being there for 5 hours, we are so thankful for the ability to have ACH. It's easy to get bogged down with the 500-mile drive and the wait and the frustrations...but I can't imagine doing this without their expertise, encouragement, and overall support. The staff is truly amazing.

After Brayden's port access & blood draws, the waiting game was excruciating. He's 5'1" now...at 10 years old. There's no doubting he's a Jones man. It's been a really unsettling 8-10 weeks. The last 2 months of results in Little Rock and Brayden's system responses in the weeks that have followed have really thrown us for a loop. I don't know that I effectively articulated on here how deeply this had effected us. Suddenly having 2 blood transfusions only to see his red cells continue to decline afterward was so alarming. We had been on worry-alert with his liver enzymes being so high and not seeing them decline much worrying that the chemo toxicity was really doing irreversible damage which would have his chemo reduced. Then that leads to worry about the chance for relapse knowing he has to have this FULL protocol with all chemo drugs to help limit the chances of that. Being Neutropenic lately and having to skip weeks of chemo had us so scared. Thankfully he hasn't developed a fever as a result. But we kept wondering when his bone marrow was going to kick back in. THANKFULLY - after waiting and waiting we finally received the best blood work results in months! Brayden had good results across the board! His liver enzymes were down to 1/3 of what they had been - no longer in the danger zone! His bone marrow woke back up and has been producing little baby red cells! For the first time in months, his body did it on his own in increasing his hemoglobin WITHOUT the blood transfusion to do it for him!! AND - after a week of being back on chemo, his ANC showed that his counts were high enough to continue chemo & he wasn't Neutropenic!!! We were ecstatic! This was SUCH good news after a very difficult couple of months. Brayden was cheering knowing this meant getting to golf, getting to swim in the indoor pool, seeing a movie and just getting to be a kid for a bit! Less worry for Mom & Dad too is always a good thing!!

The only point of worry is some problems with the tendons in Brayden's right foot. He's struggled with the Neuropathy in his legs since starting one of the chemo drugs, Vincristine, that he receives monthly. He's been having more and more trouble with that right foot & ankle, so we're hoping there is another solution to help & it isn't related to the neuropathy worsening & needing to increase the dosage of that medicine that helps him. We just had to increase it a couple of months ago, so we're praying for relief for him. Since Monday, he's been more sore but we know he's been running hard! He didn't sleep on the way back from Little Rock either and has been so exhuberant about the awesome results.

As usual when we get a rare opportunity with good blood work, we're going to try to make the most of it. We're hoping to see some family this weekend and he's been begging to go school supply shopping. Remember last year even though he had to be at home, we let him pick out what he wanted over the internet. We're thinking if his counts are high with his steroids this week, maybe we can go later one night when there is less traffic in the stores?

We're so thankful for all of the prayers that continue for Brayden. His journey still has a long way to go. Next month will mark 2 more years for chemo - end date goal of August 2012. It still daunting to try to wrap our minds around that. Many times for us and for him it's literally week to week without really knowing what's going on under the surface. For the liver function it's month to month. You can get certainly obsessive over the numbers and relying on them. I guess again I'm reminded of trusting Him to hold Brayden and know that God has Brayden in His hands. Thank you all for walking this journey with us in your encouragement & prayers!

Return to Chemo

2010-07-13T18:25:00.002-05:00

Yesterday's trip to the local Oncology clinic was an adventure, as always. We love the sweet smiles we're greeted with upon walking in. Sshhh...don't tell, but they never make us sign in! My favorite sweet receptionist (who is a joy to call each month & schedule Brayden's weekly appts) must have been tired of seeing me wrangle the bags and medicine with the pen to sign in only to dump Germ-X on my hand afterwards to be sure I wasn't passing any yuckies on to Brayden. They're wonderful there. Brayden always struts in, chest puffed out, because he LOVES the attention the sweet nurses give him. There are always teasing moments & inside jokes with them. Even though he had to walk in wearing his mask, you could see his big smile in his eyes that was lurking behind that mask. Our AWESOME nurse that takes care of Brayden 99% of the time has his room always ready. I LOVE the relaxed feeling I get knowing she cares about him and is SO cautious to be sure everything is sterile and she does it all by the book! She's so on to Brayden's routine, yet she calls him on his stuff! He loves to tease her and we both are so thankful for her and the care she gives to him each week - always having a smile. She knows when I get that 'look' upon seeing his results. After his blood transfusion this last week, her text message to check on Brayden was so sweet and encouraging. Our last ER visit our other favorite nurse called the ER to talk to us to be sure he was okay. THEY ARE WONDERFUL!! Just in case I've neglected to appreciate them here, I hope I never take for granted the love and care they give my sweet boy!

So on to the results - his counts were back up - but again, after a week of no chemo, I was hoping for more. Frankly, just to have them high enough to not be Neutropenic and re-start chemo was reason to celebrate. His red cells were still not as high as previous normal for Brayden after a transfusion so that's been nagging at me. His platelet count had bounced back nicely. All in all, we're glad he's able to resume chemo and his preventative antibiotic for this week. I'm really curious how he'll be by Friday, so we'll assume they will drop again. His pattern lately has been 1 week on, 1 week off. After a week of chemo his system bottoms out and needs a week in between to recover. Now that it's happened twice, it makes me curious if it will repeat Monday. Until then, he's trudging along! We're going to try and sneak out and catch a movie. Have I explained before how we prep movie-going during low counts? SUCH AN ADVENTURE!!! The moral of the story is you never know what another family is going through so if you see them acting a bit nutty, there might be a good reason for it.

Thank you for all of the prayers that continue for Brayden. There is a lot to be thankful for right now, and yet reminders of the battle Brayden faces daily. He's had more pain in his legs and arms. We're praying that doesn't effect his hands at all as a result of the chemo. We continue to pray for his liver function to remain strong to filter the harmful effects of the chemo and his enzyme levels to decrease. He'll have more tests on that Monday and we don't want that to prevent his chemo regimen from being altered. We pray his bone marrow strengthens and his counts remain good - but not TOO high! We're so thankful he made it past this Neutropenic week without any secondary fevers or infection. We pray that continues!!

Mom, Do you have any chores I can do?

2010-07-11T13:04:00.002-05:00

I guess you can say things are improved! Suddenly Friday evening our little man was folding towels and running laps around the kitchen & living room. Huh?!?! Bryan and I just looked at each other in disbelief! This is a stark contrast to the days prior when he was weak, feeling sick, and just laying around after returning from the blood transfusion. When he asked this question, Bryan and I could barely contain our shock and then laughter. We wish we had a way to know if his counts were higher today, so we could get him out. It's been nice seeing his rosy cheeks return from being so pale and his pink lips so gray.

Once we had a break in the rain Thursday and saw the sun, we ran outside to soak in some Vitamin D. (He didn't argue with me this time about whether it was Vitamin D or not!) We literally were marching in circles in the driveway with Hershey trailing behind. Brayden couldn't stop laughing! We must have really put on a show for the neighbors.

We're again so thankful for all your prayers. I received an encouraging email too from his Oncology nurse at ACH. We had been so upset about the recent blood results the last 5 weeks and need for 2 transfusions going into his seventh month of the Maintenance Phase of Treatment. She was reading back over his blood results and realized this was really the first section of time he's dropped counts. This was supposed to happen 6 months ago! I guess the fact that it didn't we thought we were out of the woods. But it appears it's just now catching up with him. During the blood transfusion night at the hospital, I was re-reading back over his medical journal/calendar I keep and re-read notes when he first started this phase of treatment in January. His Oncologist had cautioned once his counts dropped, it would take them 'a while' to recover. All of that combined the last couple of days has us feeling a little less unsteady than we were prior. I guess even though it's not what we expected, it was a reminder that it will happen as part of treatment. Brayden hasn't done anything the 'typical' way during his treatment. So for now we'll try and let our worry subside just a little bit.

We return to clinic tomorrow to get an update on his counts. If high enough, he'll re-start his weekly and nightly chemo. Again, crazy to think that after a week of being off chemo, I'm hoping he can get back on. Chemo has become such a reassurance for us. It makes me curious what his counts will look like again the week after...but one day at a time, right? For now, back to Monopoly marathons and movie night in the floor and video games. I'm thankful he hasn't spiked a fever this week with being Neutropenic with no immune system in the danger zone. Thanks to my sweet hubby for all the help around the house in keeping Bray as protected as possible from germs.

Thank you for your prayers...

2010-07-08T13:07:00.003-05:00

Thank you to my sweet friend, Linda, for your help in posting an update for everyone. I ran in here while Brayden's food is cooking and wanted to post a quick update. Brayden did well through the night with the 2 units of blood that were transfused. We had SUCH great nursing staff while there. They hooked Brayden up with a DVD player and once the pre-meds were administered, he was knocked out quickly. They were so careful and so precautious watching his vitals in person for the first 15 minutes after each unit was given. There wasn't much rest for Mom, as the transfusion began shortly after 11:00. Many vital checks, blood pressure, pulse-ox, temperature and respiratory rates had to be done frequently to ensure his body wasn't having a reaction to the blood. We finally got to come home yesterday morning to a long day. Brayden was exhausted after only having about 6 hours of sleep. He was curled up on the couch so exhausted and sore. His body was pretty weak with also the Neutropenia, I'm sure. I was so hoping he'd have a quick nap...but he didn't. I was finding myself holding my breath while watching the clock during the hours of when the last time he had a reaction occurred. Thankfully, Brayden made it the day without any reaction like last time! Whatever the reason it occurred last time, we're hoping the additional pre-medication that was given this time hopefully helped.

After a full night of rest for both of us, it seems to have caught up with me more today. I'm working from home and it's been a very busy couple of days. This morning he woke up with a terrible headache. I'm still holding my breath and wondering what's happening under the surface in his little body. We're having to hold all chemo this week AND his protective antibiotic that he's on every week that prevents pneumonia. It also lowers his counts and with his ANC practically non-existent this week, everything but his standard meds are on hold. He's loving not having to take the extra 6 pills a day this week. It's more worry for us without it though.

Thank you for joining us in those specific prayers for Brayden that continue. He won't have more blood work done until next Monday. Until then, he'll remain in strict isolation and we'll remain hoping & praying this blood is helping his system rebound. We're hoping & praying the no chemo allows his bone marrow to kick in some new, healthy cells. Dad has been awesome helping me prep home while we were away at the hospital. It's back to all the precautions we were so used to 6 months ago. The extra regimen is keeping me busy and Brayden isn't liking remembering how protective Mom is when he's Neutropenic. My hands are raw again from the alcohol spray that's back on the counter. But it's all worth it to keep his fragile system protected until it bounces back from this and resumes his regimen and aggressive fight against the Leukemia from returning.

I better run & wash up again for his lunch prep. Thank you again to all of you. Knowing so many are lifting up our sweet boy in prayer is such a comfort.

Requesting prayers...

2010-07-06T21:17:00.003-05:00

Hi everyone this is Linda, Lisa's friend, filling in for tonight. Brayden was admitted into the hospital for a blood transfusion today and as you know from the last one, everyone is a bit nervous. We all are praying for Brayden's health tonight and praying for Lisa and Bryan for strength and endurance through this difficult time.

Lisa sent me this email to share with you...

I had hoped to tell everyone last week how we were disappointed in Brayden's counts after his local Onoclogy clinic visit. The week went by so fast. After a week of no chemo & steroids, a recent blood transfusion, his blood results hit me like a kick in the stomach. Thankfully, at least they were high enough to go back on chemo. We seized the opportunity & went straight to the movies to see Toy Story 3. He'd been wanting to go but hadn't been able due to his counts. It was such a welcome distraction & fun time for him. He loved getting to go. The rest of the week I tried to be relaxed but was worried about what a week WITH chemo starting with lower counts would do.

I was all set to write about how the 4th of July is Hershey's least-favorite holiday. She was so scared all weekend with all the loud popping going on. With fireworks last week & weekend going until nearly midnight, I had a brilliant idea. I would plan with the older neighbors to start lighting black cats at 7am to wake up the younger ones who were up late! Suddenly I realized I'm getting older, huh?
Even though we were secretly so nervous about his counts, we went ahead with our family visit on Sunday afternoon. We loved that Brayden got to light some fireworks and enjoy them. The night before we loved parking at the top of the hill & smelling the night breeze & watching all the beautiful fireworks. Oh if only those moments weren't so fleeting.

Monday was such a nice, lazy day. I've been keeping things wiped down again & back to Isolation cleaning without him hopefully noticing. We got to visit with our sweet friends for a bit and it was so nice.

Today has been another jolt. The Oncology clinic weekly visit today brought more disappointing results. I haven't seen all zeroes on Brayden's bloodwork in over 6 months. He's severely Neutropenic today, which means strict isolation. This means no chemo today or nightly chemo. Not what we wanted to hear. The other bad news was his hemoglobin blood levels were critically low. His platelets were in half since last week. So we waited at clinic for orders to be written, ran home to grab a bag & some dinner for us, then on to the hospital. We prayed on the way and after me praying for all the things for Brayden, he stopped my heart by praying for all the babies at the hospital to be healthy & get to go home. He's so unselfish & it makes me so proud of him. We were singing along to Michael W. Smith's "I Will be Here for You" and trying to ignore how neither of us wanted to go. After taking the exit for the hospital, Brayden burst out, "A RAINBOW!". It was so beautiful and touched both of us in such a special way.

Getting admitted was tricky with a Neutropenic child. There's no worst place than the ER. Everyone here was great. Brayden's so happy to have a guy for a nurse who hooked him up with a DVD player. He's settled in (after I re-cleaned the room) watching Little House on the Prairie and playing cards. We're waiting on the blood to get here & making the most of our time.

I ask again for your prayers for Brayden during this uncertain time. Thank you for loving him with us and partnering with us in prayer for him. It's so hard not to be scared. We're praying for his body's protection while his counts are lower...that he won't develop any secondary infections that can come even from his own skin. We're praying for good blood that will help his body continue fighting...that the transfusion will go smoothly without any effect to his heart or organs. That his body will accept it and not develop transfusion reaction. We're praying that the additional medications he will have this time will prevent any fevers from developing like last time. We're praying that his liver be strong & the enzyme levels to decrease...that it would be able to continue filtering out the chemo & not be damaged. We pray his Neuropathy doesn't worsen, as he's had increased pain lately. We're praying that the leukemia cells would NOT return after another week without chemo. We pray his bone marrow strengthen to again create new healthy cells in the coming days and weeks so he can continue his 2-years of treatment left without Neutropenia. We thank Him for Brayden's healing. We pray this blood would help strengthen Brayden's system to continue fighting. We pray for his spirit to be encouraged and we pray he continue to remain emotionally strong.

We'll be in strict isolation again for a week. We're hoping and praying next Monday brings wonderful results for him. We'll try to post an update tomorrow after he gets home tomorrow without incident from the blood transfusion.

Thank you all for being loyal prayer warriors for Lisa, Bryan and Brayden. Their ability to walk this journey with courage, strength and a grateful heart has touched me. On behalf of the Jones family, thank you for your continued prayers.

Little Rock Update - Maintenance Round 3

2010-06-21T21:25:00.003-05:00

A day of many milestones - 14 months since diagnosis. 3rd round of Maintenance. 1st big chemo roadblock.

We're all a little battered and beaten after a VERY busy weekend. My sweet sister had her wedding reception and there was a flurry of activity since Friday night. Brayden said it was 'official' now that he has a new Uncle! Yesterday was a lovely Father's Day brunch with new family that was truly wonderful. After not much sleep all weekend - and still catching up from the hospital stay - we were up at 4 to leave out for Little Rock today. It marks the start of Brayden's 3rd round of 12-week Maintenance chemo cycle. He has 9 more remaining before official 'end of treatment.' Today was a big question mark in our minds with all the craziness of Brayden's counts in the last month, the blood transfusion, the ER trip & hospital admission and lower counts. It is rarer to have to have a blood transfusion during maintenance and we were reassured by this by our awesome Oncologist, but then questioned about it by a nurse. So we tried to disguise our concern...I'm getting ahead of myself. I'm just full with questions and remarks and comments and reassurances yet more questions and concerns. Back to the trip...thankfully, it went smoothly. The start of a cycle of treatment (1 every 12 weeks) is tough because it kicks off with an LP or lumbar puncture with intrathecal chemo (Methotrexate). This is to check for Leukemia cells to remain clear of his spinal fluid to treat the Level 2 presence of cells at the time of diagnosis. This spinal chemo has been on-going as well as Radiation to combat and treat the Leukemia presence in his brain. In enduring this treatment, it begins with a sedation which means no food or drink after midnight. It's never an easy trip for Brayden, but luckily he slept this morning and it wasn't so bad. His sedation began shortly after 11 and he did well. Prior to his sedation, Brayden had his port accessed and blood drawn to do lab work. This was the first time Brayden didn't make counts in order to have chemo. He needed to have ANC's above 750 (500 is Neutropenic). Today he was 660. I've said it before and I'll say it again - his Dr. can tell us the building is on fire and not incite panic in us. He's truly amazing. He was reminding us how typical this is for treatment and how Brayden is the only kiddo on this treatment protocol that's made it this far without being interrupted with lower counts. What this means is he didn't receive his iv Methotrexate and only received his other iv chemo, Vincristine. This one doesn't affect his counts. His nightly chemo, 6MP, will also be skipped this week. This will allow his bone marrow a chance to recover. He started steroids tonight so that will really give him a boost. He told us next Monday when he receives labs and chemo locally will really be telling that week and the one after on how Brayden is doing. He's thinking Brayden is still fighting off a bug of some sort. The lower counts, the ER visit and hospital admission, his elevated liver enzymes, the need for a blood transfusion. Hopefully the steroids will help kick that too. His Dr. was concerned if we didn't hold chemo, it would further diminish his system and result in another possible hospital stay from neutropenic-induced fever. So we know this is a common occurrence and were warned about it. I guess like the fever, this is another first in his treatment and is catching us off-guard. It's scary to be afraid of the poison in your child at first and then you come to realize it's what will save your child's life. You come to rely on it and it's scary when it isn't able to be given. Your fears creep in of what-if with the Leukemia not being battled for a week with aggressive chemo. He reassured us of another child on the same protocol as Brayden who hasn't been able to have chemo for 6 months. I looked at Bryan later and realized again how well Brayden has done and endured this treatment. We have to look to the experts and trust them and put our faith in the One that holds Brayden. Again - trust. Sound familiar? His liver enzymes continue to be elevated. If that continues, his chemo will have to be adjusted down. Not something we want to happen...his hemoglobin, even after the transfusion, was a few points lower than what we expected. We're certainly praying his system bounces back, he strengthens this week without the chemo, and he's able to kick whatever his system may be fighting. We're praying his liver strengthens and all the trauma the Methotrexate and 6MP chemo is putting through him to kick the Leukemia doesn't weaken his liver to that degree.

We've had an awful night with the Pharmacy. I'm thinking after 14 months now, wouldn't they be expecting the same monthly prescriptions? I've learned in the last few weeks I have to stay informed and be Brayden's advocate. The wrong dosage and directions were given on a prescription and another was incorrect. Scary. 6 phone calls finally got the prescription even filled. All the while, we were rushing to get his meds done in time for him to have them with dinner. My days of working at a Pharmacy doesn't lend me to be lenient at all. I guess I've been there, done that, so what's the big deal? I know mistakes can happen. It just reaffirmed we can't let our guard down when working to be a parent and protecting our sweet boy.

Thankfully Brayden didn't 'emesis' today, as he put it. He enjoyed sharing with all the nurses how he got his first haircut last week since all his hair grew back in. We had to cut off all his cute curls and his chemo highlights, as his Dr. told us. He was adorable but getting SO shaggy so we made the appt before the big wedding reception and pictures. It certainly makes him look much older! We found out today Brayden has grown more since his last visit. He's pumped to not have to take his nightly chemo med for a week. The little things, right? He enjoyed catching up with some of his favorite nurses on how he's been doing since returning to school and now being out for the summer. He had a good day.

Brayden says to tell everyone he says hi. We enjoyed a nice walk on this 1st day of summer with Hershey after the sun had gone down just enough to bring some heat relief. He's a bit sore from the procedure today but the walk was good. I know we'll all sleep well tonight. Thank you all again for your love, prayers, and support!

Catching everyone up

2010-06-16T22:32:00.003-05:00

Wow...just when I'm sure no one is reading, I get some sweet reminders that you are still out there. I miss blogging and sharing my heart. It has been a crazy roller coaster several weeks. I guess, it's safe to say if I'm not writing it's because my heart is so heavy it's hard to know what to say or where to start. Let me kick it off by saying thank you to all of you who came and gave of your time and donated to our Blood Drive. Brayden was SO thrilled to get to join us for half the day and thought it was so cool to see how it all happens. Being the recipient of the blood donation, this was amazing for him to see it all starts with one person unselfishly giving of their time and braving the needle. I was also thrilled to be able to be there in between other priorities. It was so heart-warming to be encouraged by each of you. For those that I missed, I hope my hubby and friends and Mom helped you to know how thankful we are for your gift of donating life. Brayden was literally smiles & jumping up and down when our last donor put us 1 unit over the goal! It wasn't looking too good in the beginning so thank you for all the donors who helped make Brayden's 1-year since diagnosis blood drive so special and allowed us to give back and help others through the Red Cross.

Brayden has had a tumultuous few weeks. He's had some things that caused me to take pause on his blood work results. Week before last I had to travel for work and was petrified for Bryan to take him to get chemo locally without me. My reassurance was our awesome nurse was there to hold down the fort for mom since I couldn't be there. I smiled from ear to ear when Bryan took a pic with his phone and texted me the results. I guess it was the next-best thing to being there? The boys did an awesome job and I was at ease knowing his awesome nurse was at the helm. I did however begin to worry a bit more. The next day Brayden had a nose bleed and wasn't eating. He just hadn't been himself. I was thrilled to finally get home...only to be sidelined with a fever. I was furious at myself. No matter how much Germ-X and precautions I'd used, I guess being at the Mall of America, one of the busiest airports, downtown in a huge office building and hotels, I still caught a bug. I was hoping I was finally on the mend after 3 days of on and off fever and feeling horrible. We went to get chemo for Brayden last Monday locally and his blood counts had dropped again. His red cells. As I looked back over the previous weeks in the journal I've kept for him, I saw the pattern. I was panic-stricken. All the awful worries and fears creep back in. I remembered asking his Oncologist once Brayden hit this Maintenance phase of treatment about blood transfusions and him saying they rarely occur. Why was it looking like Brayden would need one? In those moments, it seems nothing matters but Brayden. Life seems to stop around us and I soak him up. I was a wreck. We decided with his nurse to come back in 2 days and check his levels again. The concern was if we waited until this week's chemo, his levels could drop too low. Brayden had just that morning complained of dizziness again and again and had been sleeping more than normal. He was already exhibiting signs of low red cells. We returned 2 days later and again his levels had dropped. It looked like the blood transfusion was imminent. That morning he'd again complained of dizziness, had slept more than normal, and said he could feel his heartbeat in his head. 3 hours later, we were heading to the hospital in Fayetteville where he'd had his last blood transfusion in December. Thankfully his port was accessed at the local clinic and we were hoping things would move fast. They didn't. It took 7 hours before the first unit was ready to administer. Neither of us slept much that night. His vitals have to be monitored so closely during a blood transfusion with all the risks of reaction that can occur. Thankfully, he seemed to do well. We were headed home the next morning, exhausted and hoping him being juiced up would help kick start him back to normal. We talked a lot about the Blood Drive that night and how we had heard at the clinic earlier that the hospital wasn't sure if they'd have enough blood for him to have the transfusion. Hearing that again is so scary! That's why we've had the two previous blood drives in order to prevent that from occurring. It's very startling to hear that and not know where you might have to go or how far you might have to drive so that blood is available to help these Pediatric Oncology kids keep fighting.

We had been home not more than a few hours when Brayden was in pain. I knew all the warning signs to look for and these didn't appear to be it. I had been checking for fever every few minutes after we came home, as that's usually the most common reaction after the transfusion occurs. Suddenly, Brayden was in tears in the fetal position in his bed. His back was killing him and then he went into tremors. More than shakes or shivers. It was awful. It took me a few minutes to grab my Leukemia book and look for this reaction - nothing. I called his nurse at ACH and left her a message. We didn't know if it was serious. Were we over-reacting? Then it got worse. He was crying out in pain in his back and then his legs. I threw on a change of clothes after giving Bryan the look. He hadn't seen that look since last year when we took him to the ER. Everything seemed to be in slow-motion. It seemed once I knew we needed to go, we couldn't get there fast enough. I rode in the backseat with Brayden, who was upset we were having to go back to the hospital. I called the local clinic and we started out heading there. It wasn't too long in our drive when I called back and we changed plans. We were heading to the ER. I did my best to keep Brayden calm. Suddenly, he knew he was going to be sick. Thankfully we were prepared and the poor baby threw up everything. I knew it was worse than I thought. Within minutes, I felt his head getting hot. It happened SO FAST. This was the first time I'd felt his head get hot. It's the scariest thing because we'd been warned and taught what to watch for and told how dangerous it is when patients spike a temp. We've been so blessed that this hasn't happened to Brayden.

We burst through the ER doors and I was trying to stay calm to communicate our fears. On top of the low red blood cell counts, Brayden was Neutropenic. Being in the ER was the absolute worst place to be with the placing crawling with germs. Thankfully they rushed us back to a room that had just been cleaned an was away from most of the activity. The Dr. seemed so non-chalant and I was so frustrated I wanted to scream. Within 30 minutes his fever had gone from 99 to 102.3. He didn't want me to move away from him and I could feel him burning up. I could make this ordeal pages long with all the nightmares we endured. He was on the verge of passing out while he went through chest x-rays and it hit me on our way there and back - I hadn't been here since that awful night last year. This was the same steps we walked that night when we received the awful diagnosis. Being back was more overwhelming than ever. After more tests, I was begging someone to start antibiotics. We had been taught if you don't start antibiotics within an hour, they can go septic. Finally, I was able to breathe knowing his chest x-ray was clear and they began antibiotics while waiting for the blood work to come back and many other tests. I won't go into the nightmare of accessing his port in the ER. I was so touched when one of his nurses from the local clinic called the ER to check on him. Brayden was finally resting curled against me and I started to relax a little knowing he had medicine working and he was peaceful while we tried to figure everything out.

9 hours later, Brayden was finally moved to the floor. We were told they were scrambling and moving things around to 'find a place' for him. We were told a few times over the next several days there aren't many nurses or Pediatricians that are used to treating Pediatric Oncology patients. All this time, this year and a half of so many weekly appts and blood draws, port access, medicine, tests, and we were lulled into this false sense of seeing so many around us going through the same steps and realizing we weren't alone. This past week we've never felt more alone. We realized just how rare Brayden's condition is once again and how far away Children's really is...3 1/2 hrs is way too far when he wasn't stable and we were rushing to understand the fever and the 160 pulse rate. I was petrified and kept asking Bryan if we did the right thing. At one point, we considered leaving the ER and driving to Little Rock. But I know how long that drive really is and I couldn't imagine what in the world we would do if Brayden went through another episode like that. So we stayed in hopes he would get the care he needed. It wasn't until we got up to the floor I began to breathe. God had put a WONDERFUL charge nurse in our path. She was WONDERFUL and spent the next 3 hours with us. (If you're keeping track, that puts us at 2am). She cleaned up Brayden's port access that was a nightmare in the ER. She instantly was under Neutropenic precautions with gown, mask, gloves, and had the other nurses doing the same. I went to work cleaning the room with alcohol wipes while more blood was drawn. Brayden was a wreck. He had been through so much trauma. I've not seen him like that before. Even with all he endured during diagnosis, nothing like this. It was the first time I saw him exhausted and not a lot of fight in his eyes. He was really feeling and expressing how defeated he was. This awesome nurse was such a beacon to us during those horrific hours. She comforted both of us knowing she knew how to care for my sweet boy.

We again didn't rest more than 3-4 hrs. We saw a couple of different Dr.'s and knew the drill. Blood draws were done peripherally and through his port. They would be monitored for 72 hours for any kind of culture to grow. In the interim, Brayden's fever was starting back and he immediately began an on-going aggressive round of iv antibiotics that continued for the next 4 days.

The next day brought some friendly faces that lit up Brayden. Our sweet friends from my circle came to visit and lit us both up. One of them brought their son back up later that night to enjoy some fun DS time. The boys have hung out before and always have a great time playing together. His counts had shot up overnight and we took advantage of the brief window to visit with others. I was and am so thankful for each of you. My sister was there early that morning (after back to back hospital nights in 2 different places) with some sweet nectar again from Starbucks to keep me going through the long day. She was there in the ER and did an awesome job of distracting both me and Brayden. Thank you to my sweet friends for the ways you touched us and encouraged us either through smiles or gifts and things to help ease our unexpected hospital stay.

We learned quickly Brayden's liver enzymes were very elevated. Each day we learned of an update on his blood cultures that thankfully weren't growing anything. His fever hadn't returned through the night and the antibiotics continued. There were other worries & concerns but we were getting through it. Each Dr. we saw had a different idea for Brayden's reaction. Neutropenic-induced fever, infection, but it was our sweet nurse from Children's whose call really calmed me down. She was just sure it was a reaction from the Blood Transfusion. It was peculiar it didn't happen sooner, but even though he hadn't had it before, now we knew what to do for next time to prevent it again. We found out his liver enzymes have been elevated over the last several months. It's expected in his situation and Children's didn't alert us - it's just another thing that comes with the territory of the aggressive chemo. And when you're fighting for a cure, you keep going knowing 2 of the 3 chemo drugs he's on causes the liver enzymes to elevate. They were scary for a Pediatrician to see but reassuring this is what Children's is used to seeing and they weren't within the range to where they would have to stop chemo.

The next day Brayden's counts had plummeted again. He was VERY neutropenic. It was sad not to have any visitors, but we made the most of it. One of my sweet friends had brought him a new Lego set and we had a blast playing with it all that day. We watched movies and I loved getting to snuggle with him in his bed. Dad came when he could in between work and we missed Hershey like crazy. We played games and stared out the big window at the sunshine. Thankfully, we got good news. Brayden had been fever-free long enough to go home, his counts had rebounded a bit to be above the Neutropenic line just enough, and his blood cultures still hadn't grown anything. YEAH! We were thrilled to be going home. There were still some scary moments again with his care, but he was a trooper and we made it. I realized I had to stay on my guard the entire time and be his advocate. I'm so glad I was able to be that for him.

Coming home was wonderful. It was the first time either of us had slept in our own beds in 5 days. Hershey was precious getting to see us and knowing something had been up. It was right back to the grind the next day with Brayden returning to clinic. We were shocked his counts had come up again just enough to have chemo. We are so thankful in this year and a half Brayden hasn't had to skip chemo and his counts have stayed where they need them to. We're still worried, but that seems to be part of the process. The nurses at the local clinic were so precious to him and had worried with all that he'd endured the past week. 2 hospitals, a blood transfusion, an ER visit, fever, and a hospital admission. There were still some concerns, but all in all, he did okay. We have another visit to Children's coming and I think we'll all breathe a little easier. His nurse commented he just didn't look like Brayden. I've seen that too. He's been sleeping 14 hours a night. Today was the first time in days I saw glimpses of him back. I just hope and pray everything inside of his little body keeps fighting and holding on as the chemo works to keep the Leukemia at bay and destroy all memory of it.

Please join us in praying for Brayden. Now we're also worried about the liver function, so we're praying for protection for his liver as it works to filter out all the chemo that's being pushed through him. We pray his counts stay within the safe range - not too high where chemo dosage has to be increased, but not back into Neutropenic range. We pray also for his spirit to be encouraged. He's endured quite a lot over the last week and we pray his spirit to be guarded and his heart to be renewed. We pray also that whatever was causing these test results to be so crazy over the past few weeks that it is gone. We pray they settle back into a normal range and that the chemo continues working. We pray for Brayden's continued healing and stand on the promise that he's already been healed.

Hopefully we'll have some quieter days ahead. I have many pictures to post. We're hoping for a haircut in the next few days. It's been very tough to do. This will be the first haircut for Brayden since his hair grew back. It's so adorable and curly! The nurses loved complimenting him on it and he pretends to be annoyed! Hopefully we'll have some summer fun to focus on and be able to share with you. Thank you all for continuing to follow us on this journey. Thank you for your encouragement for me to keep writing and keep sharing with each you here. Thank you for your comments as that helps us to remember we're really not alone in this at all.

Field trip, family & funder

2010-05-11T11:55:00.003-05:00

Okay, so it's thunder. But I was trying to go with the 'f' theme and use alliteration. (No, I did not look that up, so if I am incorrect, please don't tell me!) The last several days have continued to be very busy at the Jones house. Friday Brayden had a big field trip - the last one of the year - to the Tulsa Aquarium. I was so thrilled to be able to go. True, my controlling nature may have had some difficulty with the idea of him being 2+ hours away on his own. Yes, with other responsible parents, yet without me! So I was so happy to be able to go and enjoy the experience with him. Since we were close to all of our family that lives in Oklahoma and it was Mother's Day weekend, we made plans for some stops along the way to visit family. First was Brayden's great-grandma, my wonderful Grandma Sue. She's a treasure and I've written about her here before a while back. It's difficult to capture in words what she means to me. It was wonderful seeing her and my Papa too. They're the most wonderful people and feel like home to me. It was an awesome day with perfect weather and Brayden again loved being able to be outside, playing on the tree that's been there since I was little. He got to feed the horse again and play with the dogs and get loved on by awesome great-grandparents.

We then stopped by Brayden's awesome family to visit his Nana Susanne, Papa G, Aunt Kimmie & adorable cousin Kynnli. We loved getting to visit with them and celebrate an early Mother's Day. I've always felt so blessed to marry into such an amazing family!! We didn't want to, but we finally headed back home. We had many more events happening over the weekend. Sunday we had such a lovely brunch at my sister's house and enjoyed my family all being together. It was a wonderful weekend to be fortunate to see so many of our family members and show off Brayden's full head of hair and adorable curls that are starting and his 'chemo highlights' as his Oncologist calls it. I loved spending the rest of the day with my sweet boy and cherishing the wonder that is motherhood. I'm so thankful for him! He & Dad did a great job of making me feel special and appreciated on such a special day.

Brayden's weekly blood counts yesterday showed a drastic drop. I was actually more comfortable finally seeing them come into a normal range for the first time in 5 weeks. If they had been higher yesterday, his chemo levels would have been raised. Brayden definitely seemed different yesterday. He's been more tired and sore yesterday and today. With extra sleep last night, I was hoping he'd feel better this morning. So even though his counts are back in range, I hope the chemo isn't wearing him down too much. We're back to being more precautious, although he's still in school. We're starting to see the countdown for the end of the year. He's not counting down as much as I am! It's a lot of work to help him at home!! I think I dread tests more than he does!! So I'm ready for a break this summer.

Last night's storms were crazy! My boys are both weather obsessors and the Weather Channel was on our tv all afternoon & evening! Brayden announced to me again that he's going to be a storm chaser. I've gotten past the, "Yeah, right! Not if I have anything to say about it!" I know that I certainly don't want my disapproval to push him into it, so it's become our little joke. He LOVES those storm chaser shows and we've always loved how he gives our family little meteorolgy updates when they call. So last night he was glued to the action. We were also worried about our family being impacted by all the storms. After watching more and more video, we think maybe Brayden has decided watching the storms from a distance is better. We'll see!

Crossing off the wish list

2010-05-05T11:53:00.002-05:00

What an incredible week we've been having! After returning from Little Rock last Monday, it was Brayden's week to be on steroids, so we knew there would be higher counts as it stimulated his white cell production, thus giving us a little buffer to get out and play a bit more. For the weekend we had some fun outings! Brayden was so happy to be invited to a friend's birthday party and even happier he was able to go! He loved being with almost all the kiddos from his class and playing Lazer Tag! Another welcomed glimpse of normalcy. We were so thrilled to get to spend some time with our sweet friends and have a dinner out with them & Brayden too and get to go bowling! It was Brayden's first time to go since before diagnosis and he LOVES bowling. We decided quickly we were all a little out of practice and this is NOTHING like Wii bowling! He really touched my heart when he said during the game that he almost forgot he had cancer. This was certainly a little thing to do that was a BIG impact to him in just having fun and getting his mind off of everything. It was a big day to get to officially cross off another wish from Brayden's list he made after diagnosis. It seemed so far away until he could be able to do the things he loves so the wish list was a way for him to have something to look forward to. I'm so thankful we're having the opportunity to celebrate and enjoy crossing more things off his list. We got to hang out at Border's and his hot chocolate dessert treat was nothing short of dessert! 3 kinds of chocolate and whipped cream, sprinkles overflowing! YUMM! He was eating it up especially with steroids being in control!

Monday was back to the local clinic for chemo. No surprise that his counts were elevated after a week on steroids. Still, much higher than they've been in the past. If they are high next week and the week after, based on info from his Oncologist, his dosage of chemo will most likely be increased. All the blood results and happenings of getting chemo were over-shadowed by Brayden's activities at the clinic. He LOVES the nurses there and has added more casualties to his teasing and overall sarcastic nature. It got a little out of control (I think only for Mom) while there were giggles and shouting of sport team comparisons and the list goes on. Whatever he can find, he holds on to and loves giving the ladies a hard time. It's great because he always walks in with a smile and leaves with one too. I'm always amazed at how much they get right in there with him in the teasing!

Last night was another big day. We've been wanting to see another movie for a while, as there have been a couple new ones out he could see. It was SO fun! Afterward, Dad hopped in the backseat after so Brayden could ride in the front seat. We drove with the open sun roof and enjoyed the amazing weather while blasting some tunes and looking ridiculous as a family about town jamming like the family without rhythm that we are!

School is still going well for Brayden. There have been some adjustment obstacles but I've been so proud of how hard he's working to just fit in and get back into the swing of things. He wants SO badly to do well. He's only had to miss when we travel to Children's, so I'm thankful that his immune system is staying strong. It might have just a bit to do with the Germ-X in his desk, clorox wipes in his lunch box and mom's daily questions after his initial return about ensuring the 20-second hand washing process is still being done. Hey, he is still a 10-year-old boy that we ALL know struggle with washing those hands! I've said it before - at least I haven't made him obsessive about it but he's doing great remembering to be careful. Recess has been a bit tough for him. He wants to run just as fast as the other boys and play soccer like the good 'ol days. His stamina isn't all the way back, but has improved so much in the last month. He's getting there and we're thankful for those who are supporting him along the way in little ways we may not even realize.

Our evenings have been filled with enjoying the sunshine and hitting some golf balls, practicing the Presidents in order and realizing there is only a few weeks left of school. 4th grade seemed like it only just started in so many ways and it's almost over. Teacher Appreciation was last week and I hope we have adequately expressed our appreciation to the impact the wonderful teachers at his school have had. There is more to look forward to with a busy weekend approaching. Another Mother's Day. I'm thankful beyond words to take it all in. In my heart though is an ache for other mothers that have been drawn close to our hearts this year and in years prior. Please remember them in your prayers; those who have suffered the loss so deep to a mother...God has their names close to heart and I pray gives them a special comfort this weekend.

The Dash

2010-04-30T07:45:00.004-05:00

The last 11 days have been so emotional for me and Bryan. Last week, I'm not sure if my post fully reflected the fear that was gripping me. Brayden's out of the normal blood count results really shook me to the core. The nurse tried to reassure me, but I didn't understand why things were suddenly different. Your mind takes you places your heart can't handle. I prayed and tried to stay focused on the present and not allow myself to think beyond the moment. It was just too much. Things got a bit better with the fear still looming in the back of my mind. I was so thankful to get away and get some scrapbooking time with some sweet friends at my Mom's scrapbook getaway weekend at her house. It was wonderfully relaxing and a great way to, if not re-charge, then at least un-plug for a bit. Sunday hit me hard. Suddenly Brayden was lethargic, in pain, and didn't want to eat dinner. My eyes hopefully told Bryan everything I couldn't say as we gathered around him and prayed together...our little tiny family. I kept hearing in my heart that verse ..."where two or three are gathered in my name, there I will be also." I prayed God was with us in that difficult moment of uncertainty and panic of wondering the worst. I couldn't say it out loud. This is the first time I've admitted the core of my fear. Was the Leukemia back?

Brayden finally was able to rest while Bryan and I sat shell-shocked. There was comfort in knowing we were returning to Children's the next morning early. But with that comfort of knowing he's taken care of by the best, did we want to know the results we would see? Sleep was the last thing on our minds as I started to wonder if I needed to pack a bag, get the house ready. Would we return home the next day? Should I take some of Brayden's favorite things with me? It all took me back to one year ago and walking into our house 10 days later than how we'd left it that night after dinner for the ER trip when we learned of Brayden's diagnosis. I was so angry for allowing my thoughts to go there. I was not going to prepare for the worst. Why was my mind racing? I was letting fear take over! Yet, you know and hear statistics and see it all around you. We had a week of that blood work looming overhead and now his physical reactions Sunday sent me into a tailspin.

Bryan and I finally realized we'd have to try to sleep. Around midnight my quiet tears finally allowed to flow without Brayden seeing, I confided in Bryan something I've never said out loud. Isn't it strange how we can have these fears in our hearts but if we don't say them out loud, it won't bring truth to them or the weight of them won't seem impossible to bear? I confided in him that I wondered if we would always worry? Would we always be holding our breath? Would we always wonder at every bruise that comes up in the future? He did his best to comfort and console as we both felt the weight of that answer. Yes. I miss the old days. I miss the worrying about little things that don't even matter now. It seems so far away that we would worry about other things that had nothing to do with sickness or blood work or chemo or hospital stays or horrible things like relapse.

3am shook me out of what little sleep we had found. I got up wondering what to do. Pray. I prayed over Brayden again. My sweet mother-in-law knew some of the fear we were facing and encouraged me to say "I trust you, Lord." That's hard. We want to trust. But do we fully? I was reminded of our Branson weekend celebration a couple weeks ago when Brayden and I were walking around before the show started. There were Bible story pictures on the wall. One was of Abraham and Isaac, with Isaac on the altar. I've thought of this story many times in the early days of diagnosis. Do we really trust God enough to let go of our precious child and give him to Him? Brayden asked about it and the air was gone out of me. I couldn't formulate the words knowing that tears were right on the edge. I told him we'd talk about it some day after only being able to say that God wanted to see if Abraham trusted Him, even with his own son. I trust you, Lord. I can't even type it without getting emotional and feeling the weight of that. I trust you, Lord. Do we really? To the core? Can we let go? I'm still learning and not there even now. I was thankful for that time in the middle of the night while working to relinquish the control I try to maintain on things that aren't mine to control. Brayden is ours but only for a time. I have to remember to keep him in God's hands.

The early morning trip to Little Rock was uneventful. Bryan and I were quiet with my thoughts still spinning out of control. I trust you, Lord. Brayden was much better, still a little nauseated, but certainly in better spirits. We learned he had grown another inch! He's getting so tall. Did we tell you about his spikes? His hair was finally long enough to start gelling again and his spikes are so adorable! Everyone couldn't believe how much hair he's had grow back and how it's starting to curl a bit! His Oncologist looked him over and remarked again how incredible Brayden looks. Other than the pollen suffering that everyone is feeling this year, he looked 'great.' We asked some gentle questions, trying not to worry Brayden. What to look for, should we be worried, how would they know if there was a 'blast' that showed up. The Leukemia starts as a blast and then quickly multiplies. So now we knew a little bit more, but I'm not sure that it helped. I trust you, Lord. It was another 2+ hours before we had the lab results. In that time, another sweet Mom who had reached out to me in the early days was there with her son. His diagnosis came at 3 and then he relapsed. Hearing her story sent that paralyzing fear through me again. I felt myself breaking apart. Bryan decided to take Brayden to walk around. I had been breathing prayers during our waiting time. Finally I stopped. I looked around and started to really see the others in the waiting room. You can tell sometimes at what stage in treatment some of the other Oncology children are in, just by their hair or the looks on the faces of the parents. But it was the other mothers that really got me. Had I missed this all along? Probably so wound up in our situation and my focus on Brayden hadn't allowed me the chance to stop and really see the others around us facing similar battles and fear. My eyes stopped on another mother whose eyes broke my heart. I felt where she was at and remembered it all too well for the first time in a while. She was holding her son with blankets and his mask on. We would have never known it was a little boy who was probably 5 or 6 who was so small and fragile. He had been crying in pain and she was consoling him. You could see she hadn't had much sleep or rest and there was that desperation there that I've felt too. I wanted to do something to help. I realized again the best thing I could do is pray. I felt so selfish for the prayers of mine that day without concern for others around me. I prayed for God to give her that much-needed reprieve and to guard her heart and to provide her a renewed spirit to continue. I pray she felt that in those moments and hours that followed.

Once the boys came back, Brayden's chemo was started and Bryan and I just looked at each other. I finally asked the nurse what I wasn't sure I wanted to know. "So I guess his blood work looked okay to get chemo?" She got another nurse to bring us the copy of the results. Everything was clear. It was such a relief. I'm mad that I allowed doubt to still creep in, but Lord, I trust You. We felt so renewed ourselves with the good news. I love that for now, Brayden was oblivious to our relief. It was another Monday of getting chemo for him. We decided to celebrate and have a rare treat and eat out...actually inside a restaurant at a table! Brayden was jumping up and down at this opportunity he knows doesn't come along often. He did SO great and was careful not to scare me too much and remembering to Germ-X AFTER touching the menu. That evening felt like a new day, like a gift. I was so thankful for that moment of relief and pray that time span until the next worry or fear that creeps up is much longer away. In the meantime, I'm remembering to work to trust Him more.

This week has been a week of loss and grief. Another sweet boy we met via Caring Bridge lost his battle with cancer. He was 8. Please say a prayer for his family during this unimaginable time of loss. He was able to be at home with them after months of chemo his cancer stopped responding and took over his little body. Then Tuesday night we were rocked to the core when we received an email. A little girl from Brayden's school had passed away. I struggled with how to tell Brayden. He's faced loss before and the comfort has been in Heaven and knowing they're in a better place. We sat Brayden down and he talked about how he knew her brother. We gently explained what had happened and we started to pray together as a family for the comfort of this family facing such incredible loss. Suddenly Brayden's grief for this other sweet boy losing his sister was just more than he could bear. It was such a tough couple of hours in comforting him. I was so worried about having the right words to say. I found myself having conversations with him about loss I had hoped to never have. I remembered the fear last year of wondering if I'd have to have those conversations with him at that time. It was hard saying the words out loud. But it was a good reminder for all of us. We're only here on this earth a short time. Please be in prayer for this grieving family as well. The next morning our thoughts were with them as we prepared for school and I dropped Brayden off. It was the last thing I wanted to do. I wanted to keep him with me all day in our little home cocoon. The faces of other parents in the parking lot said it all. I breathed prayers again as we could only imagine what this sweet Mom was feeling today.

Please remember to not take any time with our sweet children for granted. Revel in the mediocre. I love mediocre & boring! I miss those boring days with no reminders of pills or schedules or appts or checking ports or sneaking a check for fever when he's not realizing what I'm doing. Our time is so short. Which brings me to the "Dash" from the title of the post. The other sweet boy that lost his battle on Monday had his funeral this week. An amazing thing was shared at his graveside service that they shared with others on their Caring Bridge site that I wanted to share here. The premise is that on our tombstone we will all have a birth and death date, but it is the dash in between that really matters the most. The people whose lives you have touched will know what the dash really means. It doesn't matter the dates on the other sides of the dash. No matter how short, as we've felt personally in our own lives with other losses, so many have been touched. I pray today that your life has been touched in a special way through Brayden's Journey. How are we spending our dash? Please click hear to read "The Dash Poem". And I promise to work harder to trust Him if you will too?

1 year ago...Thankful

2010-04-21T12:02:00.019-05:00

This day is a bit harder than I thought it would be. So much of it mirrored this same day last year. Getting up and ready for school and work. Breakfast with my sweet boy. Fixing lunch for the day. Dad already at work. Dropping him off at school. Walking in with him. Then walking out after hugging/saying goodbyes. Visiting with another Mom about the hectic pace of life. And just a few short hours later...the ER. The "C" word. Tears, losing breath, wondering how I can stand, not able to hold a pencil or face the blue eyes of my sweet boy. How do I tell him? Then the life flight. Then Arkansas Children's Hospital. ICU. Diagnosis. Fear.

Words fail me today. I'm grieving and didn't see it coming. Holding on to the thankfulness and gratefulness and appreciation of another day, another year is getting me by. I'm overwhelmed with sadness. Had I been avoiding this all along? Brayden knows what today is. We talked about it a lot this weekend in our getaway to Branson to celebrate this journey and his amazing strength, tenacity and resilience. He asked me last night, "Mom, so tomorrow. That's the day last year when I was hitting golf balls with Dad at the driving range, right?" Yep. Everything seemed so normal and right and within hours your world collapses all around you. Words you never thought you'd say like survival, success rate, side effects, risks, chest tube, mass, chemo, Leukemia become a part of your vocabulary in a way you scream and wish they never were. Having to face Brayden through this has been the toughest part. I've tried to protect him from it. I can't. So we walk together, hand in hand. The hugs and pats, and leans and kisses the last few days from Brayden have been so special. I don't want to take them for granted. I love when he unexpectedly rubs my back or gives me a hug without me asking for one or smothering him with one! I'm so thankful for those moments. It's impossible to fathom how after this year we could ever take even one of those for granted.

I'm not sure how the rest of the hours of today will unfold. We want to honor Brayden's courageous fight and celebrate all that he has endured while knowing so many risks and what-if's that loom overhead. I want to share more with each of you and pray I have the strength to do so. I'm working to not be fearful this week. Brayden's blood results on Monday knocked the breath out of me. After a double-check they were confirmed. His counts aren't too low...they're worrying me they are too high. I'm working to not be alarmed until we return to ACH on Monday. It concerns me that the pattern they've had for 4 months next week has never shown this. Before I ask a million more questions and let fear grip me into paralysis, I'm trying to breath and not read too much into the results. For now, we're thankful he was able to receive chemo. He's so happy to be at school this week. For that, I am thankful.

I spent some time this past weekend reading old emails. I've kept them all. Every note and email and card. So much of what each of you and many others said carried us through. It was unnerving to read my words from those first hours and days and be sent into a tailspin of emotion and feel, smell, hear all that happened one year ago today. Realization has dawned that we have yet to truly heal from it all. It feels like we're just now able to start to look at the fresh wound we've tried to avoid. Have we gone through the motions? Does shock really last this long? It scares me to wonder if Brayden is where we are. I pray his sweet spirit, his precious heart full of faith and without the knowledge of what unbelief even looks like has helped him to move forward further than where we are. I pray we aren't holding him back from his emotional healing from the scars from the last year. I feel more ill-equipped than ever to ensure I am providing what he needs. So I hold fast to the faith that I am not his Provider and I can never give Brayden ALL he needs. So we pray and I hear Brayden's thankful words to our Father for his healing and helping him to get through this past year and I cry tears of thankfulness for a child whose generations of faith throughout our families have prepared him for such a time as this. Psalm 5:11

I read this today and it met me right where I am from a daily email called (In)Courage written by Robin.
- we are not raising our children for ourselves but for someone else; whether that's relative to their future mates or solely for service to the King;
- that regardless of circumstantial or perceived danger, their is no safer place than in the center of God's will;
- there is no greater joy than to know our children are walking in truth

Here are my good intentions finally coming to fruition with some pictures to share and see the thankfulness of normalcy at play for Brayden.

December 2009 - Mom's favorite shirt

January 2010

February 2010 - silly Brayden with sprouts of new baby hair starting to peak through

March 2010 - Return of Spring and a chance to play outside

10th Birthday

Finally able to see the AR State Capital in person

March 29th, 2010 - 1st Day Back to school. So happy to finally use his new backpack

Birthday Celebration finally with family

April 2010 - Time with family, Great-Grandparents indeed!!

Easter - Time with family

1-year Celebration weekend in Branson - Noah the Musical

Looking up and seeing this melted my heart...Daddy's Footsteps

4/19 - Impromtu Field trip - while getting Chemo on Monday at the local Oncology clinic, they took Brayden back and let him look at his own blood under the microscope! Check out those curls coming in!

4/20 - Back to good times - soaking up the spring sun & loving outside with Hershey

Celebration Blood Drive

2010-04-20T12:50:00.001-05:00

It's hard to imagine it's been 1 year tomorrow....1 year since our lives were forever changed. Although hardly a day goes by when we're not gripped by fear of the what-if's, we're so thankful for this gift of new life and 1 year we have been given with our sweet Brayden. A lot has changed since last year's ER visit, life flight to Arkansas Children's Hospital, ICU and the horrible diagnosis of a rare form of Leukemia, T-Cell ALL. Countless rounds of aggressive, high-risk Chemotherapy, Radiation, blood transfusions, and a year of missed school and times with friends tested our hearts and we've leaned on our love for one another and our faith to get us through. We're so thankful for all the prayers sent up on Brayden's behalf. We're thankful for little things today like another birthday, new baby hair growing back and his bald head becoming more of a memory, returning to school and friends and recess, a chance to go out to eat or see a movie or just play outside after so many days in strict isolation while his system was too weak to fight off even his own germs.

Brayden has been truly resilient and yet we have another 2 1/2 years to go with weekly chemo and monthly trips to Arkansas Children's Hospital while we long for the day we hear REMISSION. We want to celebrate Brayden's journey this past year since his diagnosis and all that he's endured by having another Blood Drive to give back. We have been personally touched by other donors and taking a few minutes to give blood and give back is such a priceless gift. Please help us honor Brayden's fight and sign up today to give blood! We want to help get enough donors in to reach our goal and are so thankful to all those who gave last time to help us surpass our goal! If you donated last time, you can give again!! Please join us on this special day of celebration Wednesday, May 12th, 9-3 at the Bentonville Plaza. You can drop in to donate or use the details below to secure your appointment time. Thank you in advance for your time & giving the gift of life!!

1st Day of School, Easter, and Time

2010-04-06T06:54:00.000-05:00

What a week! Such a whirlwind and I can’t believe another week has passed. Brayden’s had a great week. After his Oncologist increased the dosage on his medicine that helps with the Neuropathy in his legs, we saw an amazing difference. He’s not complained nearly as much about the leg pain and we were so relieved to see him able to get around a bit easier before his big return to school. That first morning back was a flurry of activity. A truly special moment was our little drive to school, windows down, breathing in the spring air, listening to the creek as we passed by, having our morning prayer. He said, “Just like the old times, huh, Mom?” Yep – and I wouldn’t want it any other way. What a blessing, what a miracle. As I was treasuring the quiet moments, we pulled into the school parking lot and I reach for my camera and realize…Brayden is GONE! He tore off through the parking lot as I yelled after him. I guess the anticipation was just too much. I trailed behind him hearing all the kiddos in the hallway telling each other, “Brayden’s back!” It was so special! His teacher from last year gave me a hug and was grinning from ear to ear. I was glad she was able to fill me in on what I missed. Brayden had burst through his classroom door announcing, “I’m BAAAACK!” Too funny. So there aren’t many pictures for me to share, but I’ll share what I can!

The two half-days back were so full of activity and excitement. The kids were so supportive and so excited to have him back. We played a little trick on him while the kids sang Happy Birthday to him at lunch, even though he wasn’t staying. There were so many wonderful moments. He was drinking it all in and seeing him beaming was doing my heart good and I could tell from him the enjoyment of being back at his school with all his friends, his classmates, his teacher, was also doing his heart good. The long Easter weekend was a good break to see how his stamina would hold out. We were able to have a celebration dinner with our family for his birthday. Due to his counts, we had to put any get-togethers on hold from before. We had a fun dinner at World Garden and Aunt Stephanie had some yummy birthday cupcakes waiting for us at her house. He was so cute seeing him love on his cousins he hadn’t been able to see in a while.

Friday we headed out for my Grandparents’ in Oklahoma. It’s so peaceful there. Just seeing the beautiful land, hearing the birds, smelling the fresh air rejuvenated both me and Brayden. He’s decided he wants to move there and of course, Grandma would LOVE to have us closer! I was so glad she was able to see him so healthy. She hadn’t seen him through the hair loss, Radiation effects, and the last 4 months when it had been so tough to see him and there was no denying the impact his treatment protocol was having on him. Even though it had been a while, I know the wait was a good thing and it was good for her to see him with lots of hair and looking so much healthier than before. Brayden loved getting to be in a hotel – just me and him – that night. Dad had to work, so we were on our own. The next morning, we headed over to Bryan’s family’s house to hang out, dye Easter eggs, have a big hunt at the park and play. We realized it had been over a year since we’d been to their house. Wow…it was so good to see everyone again. Brayden’s other cousin turned 2 a few months back and it was precious to see them so happy to see one another. It was a gorgeous day and we loved having time to visit and enjoy the Easter festivities with family. Sunday marked Brayden’s first time to be back at Church in over a year. He loved getting to see all the familiar faces. Our hearts were warmed by all the encouraging smiles and hugs and reminders of prayer sent up on Brayden’s behalf over the past 11 months. We were sad to have to head home, but we knew Monday was another big day!

Today marked Brayden’s first FULL day back at school. He was so anxious last night planning his lunch to pack for the next day. Just getting to stay a whole day and getting to eat lunch with his friends was reason to celebrate. I’m still a bundle of nerves. We prepped with plans to make sure he’s cautious and using Clorox wipes, Germ-X, and washing his hands correctly throughout the day. I know the risks with having him in school yet we know the benefits for him being there are so substantial. He’s no longer in his little bubble with me each day. I’m praying he has endurance to make it through a long day. I pray his stamina holds out without him having to over-do it to keep up with his friends at recess. Then after the school day, we’ll go directly to the local clinic to check his blood counts and have his monthly chemo cycle administered. The new normal for all of us…sitting at work wondering if he’s okay and how he’s doing and what he’s thinking still knowing the chemo continues and the battle rages on against his body. I hope the worry subsides as we settle in more to our new normal.

It’s been an incredible week. I was reading another Mom’s words as they fight with their daughter and identified so intimately with her words resonating about time. Cancer steals time and you wake up and think it should be the start of the school year…it’s the end. I’m glad he’s going back but did we really lose a year? Are there really only 7 weeks left? I’m trying to frame it in my head that we gained a year in a very special way vs. wrapping my brain around the time that has passed. The time aspect has been hitting me especially hard in such an emotional way lately. I guess it’s the realization how quickly he’s growing up. Spring is here again and it feels like time stood still in some ways for us since last Spring’s changes. We felt like we missed summer and it’s crazy to think it’s circling back again. I was fortunate to give blood at another ACH family’s drive last week. It was wonderful to see the tremendous response they were able to receive. I had been unable to give at Brayden’s Blood Drive in December because of him having to be in un-planned Isolation. It was so fulfilling to be able to give back in such a personal way and realize how much this means to our family and others. Brayden was so protective when I got back home and checking out my wound! It’s nothing compared to what he has to endure yet seeing him so protective of what little I endured caused me to wonder when he will truly grasp the gravity of all he has been through. We try to protect him from so much as well as those of you who follow his journey here. There are still so many moments we hold our breath and pray for the miracle to continue – that Brayden’s response to treatment will continue to remain positive and that his protection from all that he’s endured will remain. I try to push all the fear aside and continue to live each day. Even while some things seem so tedious like taxes, work, bills and school – I try to focus on the little moments in life and not take any of those for granted.

Our 10-year-old

2010-03-29T22:27:00.002-05:00

So weird...still can't get used to this! I feel so old! I've really been reminiscing with Brayden over the days when he was a baby. Such a sweet, happy baby! Always smiling and happy, rubbing his feet together like a cricket when he would eat. He rarely cried and the only way I knew he was awake from his nap is when I'd hear him playing! I'd love opening that door to seeing his big grin greeting me above the bumper pad in his bed. Oh, where do the days go? He's been eating up the memories. Yes, we have scrapbooks, but he's actually been allowing me to be a bit mushy and I'm loving it!!

We had a big time eating a fun dinner in the hotel room, playing games and watching some tv to finish out Brayden's big day. NO ONE slept well. We were so miserable in a different hotel. It was too emotional to be back in the one we had lived in during Radiation, but this one was just not good for anyone to get rest. Nevertheless, we pressed on this morning. Sedation mornings are never fun. I think the not getting to eat part is even worse when he KNOWS he can't eat. A normal day, he might not even be awake yet! But a sedation day is torture. It was great getting to see his sweet Sedation Nurse. She was too sweet in bringing him a birthday gift. She's too partial to Brayden and he's figured this out. So when we heard who the Dr. would be for his Sedation procedure, Brayden was excited. This is a fabulous Dr. who had worked on Brayden so much while in the PICU. We saw him finally a few months back and finally realized through some of his words how bad things had been in those first days. Anyway, Brayden loves him (we do too) and Brayden was excited to hear. Suddenly, I look over and his Sedation Nurse has phoned him in alerting him the procedure is ready to go and the green light for him to come over...when she hands BRAYDEN THE PHONE!!! My mouth dropped. Brayden says, in a very 10-yr-old voice trying to be 20, "Yes, this is Brayden Jones. I'm ready for my Sedation procedure please." I hear Dr. X howling with laughter on the other end of the phone. Oh no. Now not only does Brayden get leeway with tricking the machines, applying his own connectors, playing with the breathing mask, he's now PHONING IN HIS OWN PROCEDURE?!?! We love how much they love our sweet boy.

Brayden's counts were great today as we said good-bye to Round 1 of 11 for Maintenance cycles. We were glad there were no interruptions to chemo for this typically tough first 90 days. But we remember Brayden is anything but typical. His sedation procedure went well and we realized again from another nurse how thankful we are to have the Oncologist we have...when understanding how other procedures are handled with other Oncologists. He definitely is getting superb treatment and we are SO thankful. Dr. S is thinking his extreme leg pain is a result of the Neuropathy worsening or the medicine not able to control it as much. When you think about it, it has been a year that this dosage has worked. We could have had to drop the Vincristine chemo med that causes the Neuropathy, but without it, a cure is so much more difficult to achieve. So we're increasing his medicine dosage to help the Neuropathy and after a very rough day, he's resting also with a pain pill. For Brayden, that's incredibly rare. We're definitely hoping and praying this helps give him some relief.

Brayden's Radiation follow-up was surreal. He admitted it was strange to be back. I was surprised he didn't want to go to the back treatment rooms to say hi to the team that worked with him. But I totally understood. After his check-up and some laughs, he was happy to be out of there and on our way again.

My favorite part of this new 10-year-old methodology is 'Must I?' I swear, if he calls me Mother, I'm gonna cry. But after nearly every request I made of him today, it was promptly followed with, "Must I" I blame it on Little House on the Prairie. I can't keep a straight face when he says it, but it sure makes him sound older than 9 when he says it.

Tonight after the arduous drive home, we finished the final prep work for his official return to school! Tomorrow is the big day. It feels like the 1st day of Kindergarten with all the butterflies and anxiety. For me...not him! Backpack is packed and set out, clothes are prepped and ready, lists are made, but I'm not sure I'm ready for this. I know it's going to be a GREAT thing. I've got my camera ready and am SO happy for him to have this opportunity to return to school. It's been so long and I'm really happy for him to have a little time to remember what it's like to be in 4th grade. I'm glad he'll have the whole 4th quarter to be there with his friends. I do hope he doesn't try to hide his struggles. He has a tendency to not let others see the ways he is held back, especially with the Neuropathy and his endurance. I know his need to fit in and be his old self will be strong so my hope is he is happy to meet them where he is today and doesn't over-compensate. But he comes from a long line of over-compensators! Poor thing! Anyway, we better close with rest for all and the big day coming tomorrow. I'll work to post an update and some new pictures of all that hair coming in soon!!!

Happy 10th Birthday!

2010-03-28T18:30:00.003-05:00

What a year...what 10 years! It's remarkable to me to think I have a son that's ten today. Brayden - I meant every word that I said in your card. You are such an amazing boy and your Momma still - and always will - think that you are the BEST of all the sons! We've had an amazing birthday week. Although limited to outdoor activities, we've still made time for practicing golf swings in the front yard, watching a birthday DVD at home of "The Blind Side" (so good) and having a mini celebration at home this morning. Brayden didn't waste any daylight on his big day! He watched the clock anxiously until the exact moment of his birth. He gave a big cheer in the car when he was 'officially' in the double-digits. Wow. Using these new digits, he began new calculations for the upcoming milestones in his life. 16...driving. Whoa...I just want to slow the clock just a bit and breathe in these moments.

This morning he had his celebratory birthday breakfast. After enjoying his new movie and special dinner last night, he enjoyed another movie while mom got ready. After sending him off to his room, he was able to come back out EXACTLY 10 minutes later. (thank goodness the tape held or he may not have given me one minute more!) We had some decorations and balloons ready for him with wrapped gifts and a special Golf Theme. He had a 3-D golf ball cake and after dad directed him in from his room blindfolded, his expression was awesome. He had a great time opening his gifts. Dad found a great deal on a golf bag and some clubs at a pawn shop about a month back while coming back from a road trip. Brayden has been BEGGING for them at least twice a week. It's been hard for Bryan to not slip up reminding Brayden he was cleaning them up to sell. So the sheer joy on Brayden's face to see that was for him was awesome! Dad got him his first golf glove and some practice balls of his own, and now he's ready for the day they can officially go on their first 18 together! (Mom is dreaming of uninterrupted scrapbooking time on those father-son golf outings!)

We had to wrap up the festivities and head out on the road. We're now in Little Rock and about to get some dinner. It's been wonderful just to take it all in today. After hearing Brayden beg almost 1 year ago to see the Capital building outside his room at Children's, we were so happy to fulfill that wish for him today. The flowers were SO beautiful planted all around the building! It was such a full-circle moment for me. I remember those nights looking out of his room at the lit-up Capital building and he was just begging to go see it. I promised him we WOULD go see it but he had to work hard on taking care of himself so he could get better. I remember the feeling of wishing we could just sneak out and go do that without hesitation. That feeling of being trapped and not knowing what the future would hold and screaming inside that it would happen...that he could really get to go someday. Not knowing when or how long away it would be...but still wishing and pleading for that day. It was a beautiful moment to take it all in and get some of those memories on film today.

We have more lists of wishes after he starts on steroids tomorrow night and his counts tick up. It will be a VERY full work week for Mom & Dad, hopefully a return to school for Brayden, and then an awesome Easter long weekend with getting to see family. We're going to make the most of each afternoon/evening this week for more things he wants to do for his birthday.

I'll post some pics soon of an incredible gift he received from sweet Ken & team at Crossmark on Friday. We went after work and Brayden's reaction was priceless! He was gifted with a shadow box set with an autographed football from Dallas Cowboys player Marcus Spears! I was so proud of him and how thankful he was and how amazed he was at such a gift. It meant so much to him. Thank you to Ken & the team for making this happen for him!!! He also was able to have lunch with sweet Korey, our Red Cross contact, as we worked on finalizing details for his second Blood Drive. More details to follow soon!! Thank you to sweet Korey for such a lovely lunch and some yummy sushi! Brayden was SO happy to finally get to go back and enjoy one of his favorites! Thanks also to Nini Annette for helping out so much on Brayden's Spring Break. Even though we were limited on what we could do, thank you for playing and helping and doing what you do best!

I better run. We've got a big day tomorrow. Please say a prayer that Brayden's spinal fluid will remain clear of any Leukemia blasts as he undergoes his sedation for chemo. He'll have 2 other chemo meds administered through his port. We want to ask questions about all the leg pain he's been having and are praying it isn't anything that will interfere with his progress or be permanent. He also has his 3-month Radiation follow-up visit, so we pray that is uneventful for him. It will be quite emotional returning. Looking back at pictures recently, I realized it was during that time there was no denying he was another pediatric cancer patient and that moment just took my breath away. We pray tomorrow is uneventful overall and we have safe travels home to continue the Birthday Week festivities.

I don't want to take a moment for granted today. It's a truly special day. When our lives were frozen in time last year, a birthday celebration seemed so far away and so uncertain. It's truly a celebration today and one that we hope and pray we never take for granted. We are SO proud of you, Brayden! Keep smiling, keep wishing and keep that sweet spirit!!

1st Day of Spring?!?!

2010-03-23T12:20:00.001-05:00

Last year I told Brayden when we saw snow on his birthday, to soak it up because it may be the last time he’ll see SNOW in almost April in Arkansas again! WOW! After Saturday’s snow, maybe I’m wrong? I think this may be one of the few times where we went for a walk in 70 degree temps the day before and were worried about a sunburn to a dumping of snow the very next day! It certainly was pretty, though. Hershey had fun eating up the snow and running and playing in it again. We always love the snow, but this time, I think we were all ready for spring. Seeing the daffodils start blooming last week and some green finally coming on the trees had us coming down with spring fever! So the blast of snow was a complete shock. SO now can we please move into spring? PLEASE?!?! We’re so ready for the drive-in movies, picnics, the park, dinner outside. SO CLOSE!!!

After a week of isolation, Brayden was busy keeping up with school work. He’s been a little bit more active. His legs are still SO sore for him a lot of the time. It’s on our list to ask his Oncologist about to see if the Neuropathy is getting worse or what to do to help him. But it has been good to see him finally getting more active again. We’re making some plans for fun birthday activities for him as soon as he’s able. Also, we’re working on a surprise for him since the 1-year mark since his diagnosis is approaching. We know there is no better way to celebrate all that he’s endured and come through than to give back. We have another Blood Drive scheduled for May 12th. For everyone that gave blood last December, we THANK YOU! You can give blood again!!! We want to honor Brayden’s journey and help give back to so many other children who walk this journey too, who have to endure daily blood transfusions, in so many cases. Please be thinking about giving back and keep your calendar open. Brayden will be in school that day, fingers crossed, but we’ll be planning to bring him by after school as long as his counts hold up. My plan is to be there in person to thank each one of you for your generosity. It means so much to our family.

Sunday marked 11 months since his diagnosis. Some will say how fast it has flown by and others say it must have dragged on for us. I think both are true in some ways. It’s unbelievable to fathom how much our lives have changed. I pray it continues to be for the good. We certainly never imagined medicine schedules and being more protective as a mom than I already was, yet this is our new reality. I wonder what a day will look like without having to think again if we did all we could do to protect him, did we give all the meds, and having those constant reminders in the back of my head going on each day. Seeing him with more hair and a bit more energy is so encouraging. But the questions from him still hit me in ways I can never predict. He’s still trying to wrap his brain around 2 years of this schedule. It’s the worst kind of feeling for a mother – to not be able to protect him from that. I just pray that we can continue to encourage him in the right way that he can turn these ashes into beauty for his life with God in his life.

Yesterday Brayden received his dose of chemo, marking the end of the 1st 12-week Maintenance cycle of chemo. He has almost 11 more to go over the next 2+ years. I was in awe that his counts were high enough to receive chemo yesterday. After last week’s numbers, we really thought he might be too low to receive it this week. I marvel at him. He’s made it through the first 90 days and not had to skip a dosage. YEAH! We were cautioned how difficult this could be and how likely colds and fevers, thus hospitalizations can be. What a celebration to realize he has come through yet another hurdle with minimal impacts! We were warned chemo could be skipped, knowing that every time a dosage isn’t given there is a risk for the aggressive leukemia cells to re-gain their hold. Thank goodness for his protection from that and that the chemo has been able to continue its work without interruption.

We’ve got some big days ahead. Brayden’s birthday then a return trip to Arkansas Children’s Hospital. This will mark the 2nd of the 12-week rounds of the Maintenance Cycle, so he’ll have to have a sedation and spinal (lumbar puncture) to continue to the chemo to treat the cells found in his brain. He’ll have 2 chemo meds given via his port. Then he’ll kick off a week of steroids again. We’re excited about Easter weekend and getting to see some of our family. Then just weeks away is the big 1-year mark since his diagnosis. I hope we can properly celebrate his journey. I want him to really see how hard he has fought and how proud we are of his endurance and tenacity. I know one day he will realize how miraculous this journey has been for him. In some ways I want to protect him from that for now. I love that he knows nothing other than fighting and taking each day and that there will be another side to this and that positivity keeps him moving forward. The innocence of children is beautiful and I love that his youth protects him from that deeper level of knowledge that the older ones of us know too well from all that we have seen and heard in our years. So I want to still celebrate that innocence in knowing nothing more than he will fight and win. We want to share this with each of you, in a unique way. Please feel free to send well-wishes or congratulations on a special post I’ll work to do for him. So many of you follow us without us even knowing until we have a question or comment. He would love to hear from each of you and I want to keep this for his scrapbook. His prayer map is still up and serves as an awesome reminder when we walk by it each day. We don’t take any of that for granted and appreciate all the prayers that have been sent up over the last year on his behalf. Thank you to all of you and the extensions of you in your families, friends, Church families, that have and continue to intercede for Brayden. We appreciate each one of you!!!

Group Hug

2010-03-16T21:07:00.000-05:00

I’m a little sad today, so I’m going to try and focus on the positives. Yesterday Brayden had his weekly chemo at the local Oncology clinic. That’s when they check his blood counts first and if they’re high enough, he receives his IV chemo for the week, Methotrexate. This is the one they increased the dosage of after his first month. The goal is to keep his counts above Neutropenic stage but not allow them to go too high where it risks his cell growth getting out of control in order to keep the Leukemia cells from coming back. The good news is Brayden’s counts were barely just high enough to receive his chemo. But they are just a handful of cells enough before he’s Neutropenic again. So we’re back to implementing all the procedures to keep him protected from having a secondary fever. Along with that, had to make a tough decision and cancel his birthday plans. It was a hard decision, but we know we need to first keep him safe. We’re brainstorming some alternate plans and see what we can figure out. But we’re all a little disappointed. Brayden is putting on a brave face.

He’s had a very rough couple of days. His legs are giving him a lot more trouble and he’s having a lot of pain in them. We’re hoping his Neuropathy isn’t getting worse and it’s so hard to see him in pain. Certainly we hope tomorrow is a better day for him after he had some nausea today as well.

We’re keeping our fingers crossed his counts recover enough to still receive chemo next week. I know he’s looking forward to Spring Break next week but especially the week after when he’ll be back on steroids again and can get out a bit more to enjoy his birthday week and Easter week. We’re so excited about some family time Easter weekend that will give us all a boost.

Thank you all for your continued prayers for Brayden. I know it can be a discouraging time right now with having to take isolation precautions for him to keep him safe. The pain in his legs can really wear him down and just cuts Bryan and me to the core to see him in pain. Bryan said it’s almost like his body started catching up since January with what it’s been enduring the last 10 months. He’s now starting to really show the effects when you see him walk and how his mobility is a bit limited. We just pray his heart and spirit stay protected from the emotional impacts of this journey and that his happiness and joy continue to bubble over. We all enjoyed a group hug earlier and are hoping for better days again soon.

Birthday Month!

2010-03-13T14:19:00.002-06:00

Yes, in the Jones house for years we realized celebrating 1 day each year just isn’t enough. This may have began when Mom was still pregnant with Brayden and wanted more of Dad’s attention. But that’s a story for another day!! I think the birthday month celebration may also be because we were told for weeks Brayden would come early. So my initial due date of March 17th was thought to be so far off! Recently I told Brayden about that and he was bummed thinking how cool a St. Patrick’s Day birthday would have been. Ah, how your mom too wishes you had come on time and not waited another 2 weeks!! How little did we know he would barely make his entrance with only 2 days to spare before the next month of April. So I think it’s fitting we celebrate the whole month of March for Brayden’s big celebration. This year, more than any other year, will truly be a celebration!! We’ve got some fun plans in place. Brayden heard of some other kids who decided to not have birthday presents, but ask for donations for AR Children’s Hospital instead. He knows how much time we spent there and how the little things helped our visits to be more comfortable. He knows how blessed we were with so many gifts to him during that time and I’m so proud of him for unselfishly giving up his gifts to help other children who may not have such a big support system and we can bless them together! We’re also planning another Blood Drive, so all those who donated in December, it will be time to give again! We want to do this to honor Brayden’s Journey and celebrate him! Please watch for the date to be posted VERY SOON!

I was recently reading back over my first posts on this blog. Whoa. It takes you right back. It’s amazing to see how far we have come, especially Brayden. Those first few days were so uncertain, so scary. We weren’t sure if the tumor in his chest wall would shrink or if the chemo attacking it would cause it to break up and shred his liver and kidneys and cause life-threatening effects. We weren’t sure if his lung would go back to normal after having a chest tube in place for 4 days. We didn’t know if his white blood cell count would respond and drop enough. We didn’t know if his heart had suffered damage or would be strong enough to endure the coming months and years of chemo. There was more we didn’t know, but what we did know was that we were surrounded with love and support from so many, with prayers being sent up on our behalf. We knew God was with us and we KNOW he carried us during those unimaginable days I still can’t bear to go back and reflect upon. THANK YOU!!!

Well so much has continued to happen in Brayden’s progress. I’m not sure if everyone saw the last update here. The good news is Brayden hasn’t been experiencing any additional numbness in his fingers. The trip to Little Rock quickly had a scary start. You may have heard about the 3 semi trucks involved in a bad accident in Russellville early that Monday morning. We were literally less than 1 exit length behind that wreck. One of the drivers fell asleep at the wheel, hit another truck and had a very sad ending. We were stuck for an hour and a half wondering what could have happened. When we finally drove past it was surreal. The guard rail had been broken off the top and this huge semi had gone off the road and overturned and had caught fire. Apparently there were concerns for hazardous fumes burning so the interstate was shut down for a while. We were so thankful for protection and even though we were late, were glad we were arriving safe and sound. Brayden was happy to be back and see all the familiar faces after the last 2 months with weather preventing his visits. His Oncologist was so happy to see his hair coming back in! He looked closely for bald spots and was happy with how consistent his hair was. I guess that’s another thing we didn’t know was possible that it doesn’t always grow back all over. We knew it could be completely different, but didn’t realize the baldness in some areas could potentially be permanent. The thing I’ve been loving is how baby soft it is! If he thought I kissed his bald head a lot, I definitely can’t stop rubbing and kissing his soft, soft hair! He’s looking so much more healthier with his eyebrows growing back in too. What a big difference. Thankfully Brayden’s counts were high enough to receive his chemo dose and we were back on our way home. It’s amazing to me his counts haven’t dropped so low that he has had to skip chemo. Like I said before, it’s surreal to now wish for chemo. As his local Nurse told me, we’re working for a cure here and that’s the most important thing. I still get nervous about low counts but now will be more nervous if chemo has to be skipped. They did raise his dose after the first month to keep his counts in control. They don’t want to give the cells too much freedom to go crazy and produce too much on its own. He’s continued to respond well.

This past week he finished up his monthly round of steroids. The higher counts meant more freedom again. With the beautiful weekend, we visited parks 4 different times! It was an incredible gift. He was thrilled to get to spend some time with friends and enjoy a picnic too. Hershey joined us as well and we knew she was happy to be out for so many hours from the house. The fresh air and sunshine did all of us a ton of good! None of us wanted to go home. This round of steroids didn’t affect him like last time with the 15-16 hours of sleep. He’s still working on building up his endurance. Especially after the weekend at the parks, he was so sore. We’ve been doing more stretches and walking and trying to build up his endurance. I know it will take some time and he’ll have to be patient. His weekly chemo locally went well also. As we expected, after a week of steroids his counts were higher and his chemo went well. He’ll have the weekly chemo Methotrexate given for the next 2 years, and monthly he’ll continue to have Methotrexate and Vincristine. He has two more weeks before our return trip to Little Rock, where this will mark the end of 1 round of Maintenance Chemo. I calculated up he has 10 more of these rounds to complete over the next 2 years before he’ll be done and celebrate his last chemo.

This next trip to ACH brings many good things! We’re hoping upon the trip home Brayden will begin back at school! To say he’s excited is an understatement!! I think that new level of normalcy will be a blessing but I'm also so very nervous. He goes from excitement and laying out his lunchbox and backpack to being apprehensive too. It's been a long time and I know it will be good for all of us, but it will certainly be a huge transition as well. Thank you all for your continued prayers and we hope to be able to thank each one of you in person some day!! Now back to celebrating the Birthday Month!!!

Uncle Danny

2010-02-20T23:14:00.002-06:00

Brayden's sweet Uncle Danny wrote this for him. The day he sent it to me and Bryan we just lost it. It's so beautiful and was such an amazing way of sharing his special gift with Brayden in such a special way. I asked him if it was okay to post here and he agreed. I just never thought it would take me this long! We're so thankful for amazing friends in our lives who have truly brought so much more love and joy to each of us! We can't imagine this last year without you guys! You dropped everything to be with us in Little Rock when we heard the news. I'll never forget that horrible phone call to you & solid words back to tell Brayden his Uncle Danny was on his way. Oh, my heart broke into a million pieces. You stood strong with us in knowing Brayden would fight and make it through. You've laughed with us, worried with us, and we love you both so much!!

What do you think of in the morning
When the sun starts to rise
Most of us think coffee and work
And never really realize

For what is going on
Cause it’s hidden by their grins
It’s a deadly disease called cancer
Who knows when it started
Or how it might end

The journey is long and weary
And may last for years
Your faith will be tested
And your eyes full of tears

But he wears his grin
Just to show you how to be strong
For he is not afraid of the journey
Cause he knows he’s not alone

For in his eyes you can see
The power he has to win
So believe it in your hearts
As he already does with his grin

The space is now empty
Where once something was
He body is free
Of this deadly cause

It will take time
But the pace can be slow
Take this opportunity
To watch the little man grow

And I have one big wish
I would love to pass along
I wish all the other little grins
Were as strong as
BRAYDEN K. JONES

Where has the time gone?

2010-02-20T22:44:00.003-06:00

I'm so sorry to all of our devoted readers for leaving you in a lurch. I did a double-take tonight. It's been one month tomorrow since I did an update here? There's no way! I guess since we're living it day in, day out, I forget to keep everyone in the loop. My mind can't even comprehend it's been one month. I promise to try harder in the coming days and weeks to keep everyone updated. I will tell you your comments are such an encouragement to uplift our family. I think I may have started to doubt if we really still have readers or active followers, so I held back. That, in addition to a crazy several weeks with a flurry of activity have kept me from posting. But, I'm back. Please feel free to send any questions you may have. We love each of you and want to be sure we continue to share in ways that help you to see where Brayden is at in his journey and help you to know how to agree with us in prayer for his protection and healing.

Well, the biggest news is Brayden made it through the 1st month of Maintenance Chemotherapy with flying colors! His counts stayed steady and he did so well. All the crazy snow here at home and then in Little Rock held us back from making the trip. So we continued here at the local Oncology clinic. Since my last update, his bone pain from Radiation finally began to subside after the 5th week. So thankful!! Then...2 weeks ago, his counts didn't quite come up to where they had the time before with the round of steroids. I knew we had been warned this would happen. Sure enough, this last week's Monday chemo showed his counts hovering above the Neutropenic range, but still high enough to proceed with chemo. That's tough because you know it's going to drop his counts again, but we need the chemo to keep working and prevent new Leukemia cells from forming. We know skipping a dose of his weekly chemo was a likelihood and very common in this phase of treatment, but were hoping we could avoid it. I've grown from being terrified of the chemo hitting his body, watching it be pushed into the port just above his heart, to being thankful for it because it's working to save our sweet boy. So now facing a trip to the Oncology clinic on Monday and worrying his counts won't be high enough to receive that dose of chemo has me concerned. We're praying his counts rebound but stay within a good range so that he can continue with his treatment but not be too high. It's a delicate balancing act.

When he started the 2nd month of Maintenance, he kicked it off with the 5 days of steroids again. We were prepared and ready with healthy snacks, knowing he eats more. But this time was far different. At the same time, it was decided his counts were a bit high the month before, so his weekly chemo dosage was increased. He received an increased dose of the Methotrexate, another round of Vincristine, then continues the nightly chemo med at home. We don't know what was different, but it was such a shock to us. After 6 good weeks, we forgot about how bad the nausea can be. His bright eyes were dull again. Suddenly he was sleeping 16 hours a day from bedtime until 1 and 2:00 in the afternoon. It was so incredibly hard to be reminded of all those feelings and worry again. He had just been looking SO good. So the last 2 weeks have been tough. His appetite has made a SIGNIFICANT drop in the past 2 weeks as well. We're working on eating as good as possible and not drinking calories, even from V8 or OJ to try and ensure he doesn't fill up from drinking. It's ben tough to see him so vulnerable again. And even in the toughest days, I don't remember him being so weak, so exhausted, and just dragging so much. What hit my heart the hardest was hearing him say he felt like he was in the hospital again. Those days came back like a flood. I guess I try to stay present and focused on the here and now and to reflect on those days or be thrown back to them in that moment with Brayden just broke my heart.

Thankfully before all this hit, he had a couple GREAT days. We got to see a movie again. He got to eat out at 2 of his favorite restaurants, 1 with our sweet friends. He got to enjoy the Super Bowl at our friends' house and still cheer a little bit (before he crashed) even though his 'Boys weren't playing. He got to go with me to the new Neighborhood Market later one evening. You would have thought it was a toy store! He was so happy just to be out and after not being in a store for so many months, it was a thrill for him to shop a bit for some healthy snacks. He was able to visit his buddies at Mom's old office at Jack Link's and sweet talk them into some jerky and some fun stuff. He was especially thrilled to get to see his friends at school for an hour. He even got to have a sleepover at Nini's and to be able to have a night away from Mom & Dad had him more than excited and asking for another night away! Finally, his cousin celebrated his birthday at Fast Lane, the same place Brayden got to have his party at last year. It was just 3 weeks prior to his diagnosis that he had his party there and it had been at the top of his list to get to go back. We never dreamed it would be this long. So that was a really nice celebration for him. But even in that fun time, he was still a boy who, under the surface, didn't have the stamina or ability to run with the other boys. He took it all in stride and we're planning the next trip back. We've all been so thankful for those opportunities he's had to feel 'normal' again.

We're praying Brayden is able to bounce back soon. With his counts so low, we're back on guard with germs, following all the old precautions we were able to let slide for the past 6 weeks. The reminder of his Oncologist's warning to me that even the slightest cold could give him a huge setback has us praying also for his protection from any germs. He's done so great so far, so we're praying that continues.

A big celebration is quickly approaching. 10 months tomorrow will mark the time that has passed since Brayden's diagnosis. His 10th birthday coming up is followed closely by the 1 year mark. We're working on planning a special "Celebration" for him that we would love to share with you. There have been some special things for us that he's had to miss, like the Spirit Night and the Blood Drive. We're hopeful that this also marks the 12-week end of the first rotation of his Maintenance cycle. Another 12-week cycle will begin, but this will be 90 days beyond when he began Maintenance and when we're hoping he can return to school. So there are so many milestones to celebrate. We'll share more information soon, but for now, if you would like to join us, we're planning on offering the opportunity to bring donations for Arkansas Children's Hospital in lieu of gifts for Brayden. We're working to coordinate another blood drive, so that those who gave in December will be able to give again! If you would like to join us, please email us at jonesfam4877@att.net.

Before I go, I wanted to share another piece of BIG news that happened last week. Brayden's sweet bald head started to show some little black dots! Each day we'd see the changes and his little eyebrows are coming back in too! I'll try to post a new picture soon so everyone can see how his hair is coming back in! His nurses last week were so surprised to see this big change! It's SO soft! I guess if he thought I kissed his head a lot before, I really am now! It's a great sign of life and his recovery and a little peak at normalcy creaping back in for him. We can see so much excitement on the horizon for him and can't wait.

What's next is another weekly Oncology appt Monday then Little Rock the following week. We're praying for his protection. He started to complain of numbness in one of his fingers. My heart stopped. So far the neuropathy caused by the Vincristine was isolated to his legs. He takes a pill 3 times a day to help with this. We knew that if it spread, it can cause permanent damage to him. Many times the Vincristine will be stopped as part of the monthly chemo regimen to prevent that damage. We hope and pray that this doesn't continue because we know this Chemo is key to the success rate or Leukemia Remission. Please pray with us? Love and blesings to all of you!!!

9 months ago...

2010-01-21T11:15:00.002-06:00

We have just been soaking it all in lately. We’re soaking in our non-traveling weeks to Little Rock. We are so thankful for a wonderful Oncology Clinic with great staff close by. Brayden went Monday to receive this week’s dose of chemo (Methotrexate). He’s still taking his nightly chemo meds at home – each and every night. It’s setting in with him that 2 ½ years of all these pills is a long time. He’s being strong and getting it done. But the first week of Maintenance (1/4) that he had to take steroid pills as well was not fun. There’s an additional antibiotic each week 3 times, twice daily, that’s also not fun for him. As a Mom, I’m trying to teach him how this medicine is working to help him and we keep talking about it, encouraging him about it. He certainly is normal and reaches his frustrations about all of it sometimes. But he continues to amaze me with his positive outlook and his determination.

We travel back to Little Rock for Brayden’s monthly chemo and check-up to Children’s in 2 weeks. Our car is probably so thankful for the break from those weekly miles! We’re watching Brayden’s counts closely, as always. They are always high after steroids so last week was a bit of a shock to see them. This week’s appointment they were back down a range that we were familiar with, but one that will still allow him to not be in isolation. Seeing that drop certainly has reminded me of all that we’ve been warned about. We’re working to do what we can for now and enjoy this freedom.

We’ve kept very busy lately with visiting family, friends, and getting out of the house a bit more. Mom & Dad even got a couple hours away for our first date night in a while! Getting to go to HH (Happy Hour at Sonic) was a big treat for Brayden. He loved getting to eat out as a special treat. I tried not to be too offended at how good he kept saying the food tasted! He’s been loving the warmer weather in the afternoons. He and Dad have been getting some practice golf swings in each day and just getting to be outside more has been such a gift. The daily grind has kept us all busy between school and work activities. Brayden worked so hard over the beginning of Christmas break and got all caught up with school. It’s a good thing - since then school has really picked up! They are studying the 50 states, capitals, where they are on a map, etc. Each week is a quiz. He’s also picked back up in Bible now that 2nd Semester has started and is enjoying that. He was cheering yesterday on the webcam. He was able to participate with the class in their Latin lesson! He shared with me some of the new words he learned and was definitely enjoying that opportunity.

Brayden is continuing to have a lot of pain from Radiation, although it has lessened in the last week. His Neuropathy in his legs has been an issue since his diagnosis with the effects of Chemo that one of the meds has caused for him. Lately, however, he’s really having more trouble walking. We’re hoping now with more exercise it will help increase his stamina and hopefully help strengthen his muscles again. He gets frustrated sometimes that he can’t move as fast and it’s very common to hear his pain when he stands up or moves after being still for a bit. But you rarely hear him complain about it.

It’s so hard for me to fathom that it’s been 9 months since Brayden’s diagnosis. We have seen some awesome things in that time that has brought our family a mixture of joy, sorrow, happiness, pain, but most of all hope. There are hard times but we persevere. We’ve seen so many sad endings for other families fighting, but we’ve seen so many with endurance and faith that help push us to want to do and be better in the midst of this journey and battle for Brayden. Please remember there are so many fighting. We took a quick trip to Hobby Lobby the other night. Brayden’s getting more and more comfortable with the looks and was having a tough time staying still! After being patient with Mom looking at stickers, we went to the section with all the cool models and play sets. Another Mom was there with her son shopping for a school project. She asked if we were as well and we said no. Inside I was begging for her to stop asking and stop looking. Suddenly she said, “What are you battling there, buddy?” While staring at his bald head she was waiting for his response. I wanted to scream. Why ask? He was quick to answer back he was just looking at the ‘army guys.’ Suddenly my pain and flash of anger rising up to protect Brayden melted away when she looked at us with knowing eyes. She told us how good God is to protect our boys. She stepped aside to show us her son, also about Brayden’s age, with his full head of hair. She then shared how for 2 years he waited for his hair to grow back after battling a brain tumor. She acknowledged how they too know Little Rock like ‘the back of my hand.’ I was instantly so grateful for this meeting and for the Mom speaking up. She encouraged Brayden and the boys smiled and waved at one another. Brayden sometimes feels so alone in his battle. So happening upon another boy who has traveled this journey was such an encouragement to both of us. He looked like any other boy, just there working on a school project. Soon that will be Brayden and we’re so thankful for him to see another sign of hope and what will be and that he too can fight through to the other side.

Whirlwind Weekend...And a Miracle

2010-01-11T20:58:00.003-06:00

Wow...the days have really flown by lately. We had a BIG surprise and got to take Brayden Friday afternoon for the last hour of school to be with his friends. I was cracking up! He all of a sudden couldn't walk or stay quiet! He ran to his classroom and it was precious seeing all of his classmates' faces light up! He knocked and ran in to his class! His teacher had this look and I okayed everyone that he was alright. They took turns and ran up to give him big hugs. His buddy still did their old secret handshake/body bump! Brayden assured me later he did it with his right shoulder away from his port. Did my eyes bulge that much when he did it that he caught that look of concern in my eye? I had to smile that he thought of that and was so proud he was being careful. I felt so bad for his sweet teacher. Brayden literally had no filter and said EVERYTHING he thought! He marched straight to his desk and started unpacking. I guess right before we left when he asked me if he could take the Cowboys backpack he got this summer, he made sure to pack it up! He was settling in. He said several times, "Whew! This is so much better than the webcam!" I kept trying to sshhhh him but it was in vain. He was just overjoyed to be able to be physically with his class again for the first time in 4th grade.

Our timing was good in that he got to present a Book Report he had done for the class with some of the other children. Then they got to go to the corner for one of their curriculum books and popcorn read. As I sat back and took it all in, my heart was full. He was finally able to interact and feel normal for just a bit. I also mourned the loss of the normal days he'd missed. My heart lurched hearing another buddy mention the infrequent haircuts Brayden would be needing! Brayden took it in stride saying he'd be having more haircuts again soon. Hearing him read, seeing the sweet looks from his friends, realizing he was having this special time was so emotional. There are times when it hits me just how much things have changed and seeing him amongst his peers was another time. But hearing his comments and outbursts and seeing his smile put all of that aside. He truly loved that last hour of the day and is counting the days until he can go back full time.

We knew Brayden could go for a quick visit because his counts were so high. He's been on steroids and will begin another chemo tomorrow. So prior to that dose, we knew we had some time for him to enjoy more freedom. We met my sister, her fiancee, and my nephew at Brayden's old favorite restaurant. He soaked it all in and everything tasted so much better after missing the treat for so long and having the company of family with us to smile and laugh. We ran to Barnes & Noble, one of his old favorite places, and checked out some books. He's still very aware of looks and stares but is doing so much better with it. Sometimes he will get upset and a little mad, and other times he realizes it just comes with the territory.

The next day was finally Christmas with Bryan's side of the family. We met them halfway in Oklahoma and it was so good for him to see his sweet cousin that just turned 2. He can't hold back the kisses and hugs with her and she will giggle and laugh at just about anything he does. It was great to see some awesome family friends come out to see him as well. Seeing his Nana, Papa G, and Aunt Kimmie was so special and getting to catch up with them. The few hours we spent together just wasn't long enough. He had some trash talk going on football and I think put everyone's hearts at peace getting to see him so lively and active and incredibly energetic. We kept hearing how good he looks and how tall he's gotten. 5 feet for 9yrs old - just trying to keep up with his Daddy & Papa G!

We decided to surprise his Papaw David at work on our way home and that was SUCH a nice treat. He always will tell Brayden "UNCLEAN! UNCLEAN!" when he tries to come hug him before he's showered after work. So when Brayden ran over he had this look of panic. I reassured him it was okay and it was so sweet to see him take it all in.

We definitely made the rounds this weekend in trying to see our family. We're not sure how his bone marrow will respond. Speaking of...I have some incredible news. We made it to Little Rock and back last Wednesday for Brayden's treatment. We had to get up at 3am, so it was a very long day that took a few more to recover. Then with all our activities this weekend, I haven't stopped to post an update. So, we learned Brayden's end of treatment date will be in August 2012. Wow...that seems so far away. We got more information about what his Maintenance Treament Roadmap will look like. His awesome Oncologist is having 1 chemo med he is to get once a week done via his port. This is WAAAAAY better than the 20+ pills he would have had to take to get it down. His schedule will be:
- Week 1 - Little Rock for Vincristine Chemo via port, check counts, physical, etc. Once every 3 months, he'll also receive a Spinal Sedation (LP) with Intrathecal Chemo (Methotrexate) to treat the Leukemia cells present in his brain. With Week 1, he'll be on 5 days of Steroid dosage
- Weeks 2, 3 & 4 - He can receive Methotrexate chemo via his port locally
- Daily he is on another chemo pill each night before bed with varying doses throughout the week

This treatment plan will repeat in 12-week cycle/intervals for the 2 1/2 yrs. We had many questions about his counts and how everything will shake out. We were warned it can be another roller coaster ride. With the High-Risk aggressive treatment he's been on, his Oncologist reminded us just how much of an impact this has on his body. That along with the Radiation can take a toll. Even a cold can give him a big setback and cause his body to take a lot of time to recover. His counts may take longer to drop going forward, but they will also take longer to recover. They will adjust his chemo dosage based on his counts and how his body responds. He reassured us many times his counts may be too low to receive chemo and that this is completely normal and part of the response of his system to all he's been through. His bone marrow may be so 'burned out' it may take it a while to bounce back and recover. So, we'll have to be cautious and pay attention each week to see how he's doing and then remember to not plan too far ahead.

Are you ready for a Miracle? We certainly didn't see it coming. His Oncologist was so wonderful in coming to see Brayden and check on his progress even though it wasn't his day to be in Clinic. We're so thankful for him and his awesome nurse. Have I said before how he's always so calm? I remember when he was explaining Brayden's diagnosis, all the risk factors, and his voice was so even and calm. After seeing the Hudson special with Captain Sully on the US Airways flight, it's that same calm. "Brace for Impact." It's amazing. That's when you know they have a gift. So, he calmly explains the treatment roadmap, his chemo for the day, and that he'll also be receiving a Bone Marrow biopsy. Yikes! My breath caught. I didn't see this one coming yet. After 8 months of treatment, you hope and pray it's working. You push your faith and cling to it that his body is responding, the Leukemia cells are staying gone and not returning. But with every time Brayden has a new pain or trouble breathing or a headache, you can't push it out of your mind. It's the first thing I think of and I hate it. I long for the day when that isn't my first thought...wondering if the Leukemia is back or if it's really gone. To suddenly have a microscopic report of how he's responding was something I wanted to run from...the fear grips you again and you aren't sure if you want to know. But Dr. S keeps us so normal and even-keeled and reassures this is just part of the process and we'll have results back soon. Those 20 minutes after we kissed Brayden goodbye and his sedation process began, became one of the hardest of the many, many times we've repeated the same process. All the old, familiar feelings came back while we waited. You try to push it aside and cling to faith and it just resonates and taunts you, unrelenting. We went back to be with Brayden as he was coming out of sedation. My eyes caught the vials with his bone marrow on the tray and his nurse take them away, knowing it wouldn't be long and wondering what was in that vial that our eyes couldn't see. We had other fears and concerns sweep in with some unusual pain Brayden's been having. We were so worried he had a fractured hip or pelvis. So we sent out texts for prayers from our family while we waited for an x-ray. All the steroids he's been on make his bones so soft and breaks are so common for oncology kids. Did I forget to mention how he can't stay still when he's with his cousins and thinks he can jump off of stairs and run around? Maybe the x-ray was a welcome distraction from the looming results and we sent up many thanks that he was okay and everything looked good.

And almost as calmly as it was announced that he would have one, his Bone Marrow results were explained to be clear. CLEAR! No Leukemia blasts were found!!!!!!!!!!! IT WAS BRAYDEN'S MIRACLE! No matter how much you hope and pray it's working, the reassurance that all he's had to endure the last 8 months has worked sent such a calm and peace over us! It was truly miraculous to us. It will still be 3 yrs before his Oncologist will say the word "Remission" to us. But this was the answer we had hoped for and had been afraid to ask about. Thank you, Jesus, for your protection! Thank you for the healing! Thank you for the restoration for Brayden!

More Pictures as Promised

2010-01-04T22:56:00.012-06:00

Wow! 4 posts in 1 day - I'm certainly making up for lost time! I took a couple hours tonight after Brayden went to bed to catch up on some of these pictures we had been wanting to share. He has really changed, especially since Radiation. Here are some of the things we wanted to visually show you and share with his bloggie friends.

Happy New Year 2010!
Brayden managed to stay up past midnight to celebrate with some yummy food, sparkling grape juice from Nini Annette, great friends, fun games, and some yummy food. He had an AWESOME time finally getting to see some friends and Uncle Danny did an incredible job of keeping Brayden laughing all night with only the humor that Uncle Danny can bring!

Christmas Morning
This pic absolutely CRACKS me up! We usually get Hershey a little something and this time Brayden helped her open it. Even when you say the word 'treat' Hershey's ears perk up, she stands taller, and is VERY eager to hear where and when she can get said treat! Brayden's laugh is so infectious and makes me smile! He could hardly keep from laughing while Hershey sat at attention asking politely for this treat Brayden kept talking about! It was a great moment.

The magic and wonder of Christmas morning! Brayden melted our hearts when he told us this was his best Christmas ever because we were all together. I had to write down some of our favorite quotes from that day and the days leading up to it so I wouldn't forget some of the amazing things he said! Our favorite this year was on Christmas Eve when he was wondering if he was on the naughty or nice list this year. Dad asked him which one he thinks he was on. Brayden didn't miss a beat and said, "Since I've been a little of both, Santa needs to have a Maybe list to put me on!" Priceless.

White Christmas
Waking up to a white Christmas in our backyard is SO RARE! I missed how long it's been since the last one. But the magic and miraculous event wasn't lost on us. Although he could only enjoy it from the deck, Brayden wasn't missing a moment to take it all in. It was amazing to see and SO beautiful with the Christmas morning sun shining on it!

After Mom & Dad finally got to bed around midnight, we were so thankful for Brayden's agreement the night before. When trying to plan when to get up and make breakfast, I decided toask him what time he was planning on getting up. I threw out 8:00 and was stunned when he said, "DEAL!" Score one for mom! I could sleep in a bit! So imagine my surprise at 6:30 when I walk into our living room and see this! His gift from Santa had definitely been inspected and was far away from the other gifts. He had read a newspaper article about his Papa G from 15 years ago. He had his school yearbook out in the middle of the floor and a few toys. His anticipation just got the best of him! I reassured him to always wake me up next time and my heart broke a little thinking of him trying to go back to sleep after being up since 1am! But it was so precious to see him sleeping in his robe from Santa in his Christmas PJ's on the love seat while waiting beside the tree!

Reindeer Food
Since Brayden was tiny, we'd always make reindeer food on Christmas Eve to throw out on the lawn so the Reindeer could have a snack too while Santa was having cookies...or this year, candy sushi! I loved how this pic turned out since it was snowing when Brayden bundled up and went out to throw it out on our lawn!

Candy Sushi
I had heard about this neat idea and since Brayden LOVES sushi but hasn't been able to have it in a while, I thought it would be fun to make some! Well, Brayden decided after making it, this would be better to leave Santa the sushi instead of cookies this year. I told him it was completely up to him. I was in the floor hysterically laughing when he added that instead of hot chocolate, as he's always left him, he needed to leave him Miso soup since hot chocolate doesn't go with candy sushi!

Christmas Wrapping
Brayden's wrapping skills officially surpassed Dad's this year...which isn't saying much! Sorry, Dad! Brayden really got into helping to wrap this year and by the time it came for Dad to wrap Mom's presents, he realized just how much more Brayden had learned this year while helping Mom and promptly put him to work! Brayden ate it up that he got to show up his Dad on his skillz!!

Awaiting Christmas
This picture just makes my heart full. Our family finally back together again just in time for the week before Christmas. Brayden and I being away from home the 2 weeks in Little Rock for Radiation were the longest we'd been away since his initial diagnosis and time spent at ACH. It was just too long. So finally being back home and seeing my boys in their sweet robes sipping their Christmas eggnog was just too much to pass up.

Christmas Carolers

Brayden was SO happy to see them! Even though you can't see it, there were smiles abounding under his mask. Hopefully soon he'll be able to join them and hug them again and next year go with them on their Christmas carols to bring joy to others! Thank you to the ACA fam for bringing smiles and songs into our hearts for Christmas!

Cowboys Chemo Celebration

2010-01-04T22:35:00.004-06:00

- COWBOYS CHEMO CELEBRATION - 12/23/09
I had mentioned how Brayden's local Oncology Nurses take such good care of him! Going forward in his treatment, we'll be there each week and only be in Little Rock once a month. I'm so thankful for such wonderful nurses. We've come to really trust them and rely on them. Sweet Deanna has gone above and beyond. She's reassured me, offered her expertise, shared her personal cell phone with me and checked in on Brayden when she knew how incredibly frightened I was to take him to the local hospital for his blood transfusion. She's confided in me how well she preps and cleans/sterlizes the room before Brayden comes in for blood work or treatments! I guess that was to reassure me I don't have to come in and clean a second time with all the days he's been Neutropenic! She even has learned to wipe down the light pull because she knows how ancy Brayden is and will TOUCH EVERYTHING! She's learned to laugh as Brayden counts for her to access his port and puts up with him wanting to sit up to be accessed instead of laying down. She's SO patient with all of his questions each and every time. We're SO thankful for her! As if that wasn't enough, she decided to do something special for Brayden. To celebrate his finishing all the High-Risk aggressive chemo regimen the last 8 months and finishing Radiation to where he can move onto Maintenance Chemo, she knew what she wanted to do. She went so above and beyond and contacted the Dallas Cowboys to get Brayden an autographed picture of Felix Jones. Her letter moved me to tears as I read how she felt about our Brayden and how she wanted to surprise him with this reward of all that he's endured while still maintaining his smile and sweet personality. She had gone above and beyond to organize this little celebration for him, made him a Cowboys blanket (now he didn't have to fight Dad for his!) and had these two autographed pictures framed for him!

I was so glad Brayden agreed to wear his Cowboys stocking hat just for me. The nurses all loved it and when we came around the corner, they were all cheering and clapping for him! He was so amazed and kept saying lots of "WOW!"s and "COOL!"s. They definitely made his day.
Sweet Katie and Brayden have a special relationship. He instantly loved her sarcasm that he can equally share. She's discovered his love of the Cowboys and he's discovered how to tease her about her beloved Chicago Bears. She knows how much he can't stand Hannah Montana so she's used that against him oh so many times! It's gotten to where I'm sure Brayden has a little crush on Miss Katie. We've finally gotten him to where he'll at least tell her bye again. But his teasing her is relentless and he had gotten so embarrassed to where he would run out the back door when he was done to avoid her teasing back! So precious. I love that even these visits can make him smile and laugh.
These ladies have hid quiet tears while treating Brayden. They've had to give the awful Asparaginase shots in his legs twice now. They've grown to love our sweet boy and I'm so thankful for them!!

Radiation Graduation Day

2010-01-04T21:59:00.013-06:00

I had such good intentions of posting this before now. Looking back over these pictures brought back such a surge of emotions. I suddenly realized even our family has yet to see these. I hope it helps explain what Brayden has endured.

As part of Brayden's High-Risk treatment protocol (based on a study) he was to have 8 fragments of Radiation treatment. This was due to the time of diagnosis, his spinal fluid was showing with Level 2 of Leukemia cells present in his brain. We had been dreading this part of his treatment. The side effects are too numerous to mention. The main one being the likelihood of developing secondary cancers. It's so gut-wrenching as a parent and we're thankful for a wise Oncologist and his guidance to help lead us in the path of keeping Brayden the most safe and preserving his health. This wasn't optional for his treatment. In fact, this was the best chance he has of ensuring the Leukemia cells don't hide and come back later in his brain, as used to be the case 20+ years ago when the survival rate for ALL Leukemia was so much lower. Thank goodness for all the research. It's hard however to be thankful for Radiation. Nevertheless, we pressed on.

I've already posted several details in December about Radiation in general. We were so thankful Brayden didn't suffer a lot of the immediate sickness that could have been present. He did well. There certainly were side effects and those haven't dimished yet in the two weeks that have followed. Here are some more details and pictures for you from his treatments December 9-18:

This was the room as it looked when he walked in. They had a place for him where his mask was kept each day. The first time we saw that 6 inch thick door and this room it was a bit overwhelming. Brayden asked many questions. He thought the tv's were so cool! It had his information on them and he thought that was neat. He liked the beautiful picture on the ceiling and I reassured him about the camera on the wall in front of the table that showed him to me while I waited on the other side of the door. He chose to have music playing the last few days of treatment. He was sure to ask the Treatment Team lots of questions about all the machines and they were so patient to explain everything to him to help make him more comfortable.

Each day the nurses would have their masks on so that he could take his off when he came into the room since he was Neutropenic all during treatment. He was glad he didn't have to change into a gown. The table he had to lay on was SO uncomfortable. They had a neck piece sized for him that was ready for him each day we came in. They would also place a lumbar support under his knees and velcro his feet together. He insisted on keeping his shoes on. All of this was in an effort to minimize any movement. I gave him a tip to put his hands under his hips so he would have a place for them. In an effort to be perfectly still, his arms seemed to not know exactly where to go so that seemed to help.

These lasers had to line up with the exact places on his mask. The treatment teams did x-rays twice to confirm the Radiation was being concentrated on the exact right places in his brain.

This is a close-up of Brayden's mask he was eager to show. Once it was made the first day, it held the exact shape of his face, nose, chin. The team had to ensure the placement was exact and precise before it would snap into the table to confine him in place and not allow any movement.

Saying goodbye right before Radiation started once he was all in place. The team would slide his table into position. After we left, everything was controlled by the team on computers. I was amazed at everything they watch on 3 different screens. Then the big machine would rotate. You could hear the clicking sound the Radiation would make coming out of the machine. Then it would rotate again completely to the other side to treat the other side of his brain.

Each day he was complete with another treatment day down, his sweet team had this calendar made up for him and waiting with stickers. It was such a great visual to see how far he was coming and how soon he'd be done. SO THOUGHTFUL!

This sweet smile is what greeted me after his team came in and unsecured everything from the table. He was known to say "Get this thing off!" He was SO happy to finally be done and not have to come back again.

Placing his final sticker was such a tangible way of being finally done!

These sweet girls made his day! I remember the first day him telling me how cute the girlies were!! Sweet Jennifer & Tara were so vibrant and eager to visit with him and help make him more comfortable. He loved chatting it up with them.

His Treatment Team presented him with his Diploma on Friday, December 18th. Along with Jennifer & Tara again is Michael. I was so reassured with their expertise of Brayden and so thankful for the wonderful care they gave him. They seemed to go the extra mile and we are so thankful for them!

Hiding Out

2010-01-04T17:46:00.002-06:00

It’s been so good to be at home together. We apologize for not keeping the blog more updated. It’s fallen on our priority list lately with just spending time together. Last Monday’s plans to Little Rock were cancelled late Sunday night after I had already posted the last update. Brayden’s counts were just on the border of qualifying to start the Maintenance phase of chemo. Since there was another indicator that they may not be on the rise, his Nurse thought it best to give him one more week to recover, so we had another week at home last week. We were happy to learn Thursday Brayden’s counts had climbed a bit more. Saturday, for the first time in 3 months, we got to be with some of our family. It was our family Christmas with them and so nice to see everyone. It warmed up my heart to see Brayden hug his cousins and to see all their little faces light up to be reunited. Being around family again was such a good feeling. It was hard to sit back and relax and not be over-protective of Brayden. He ended up playing way too hard, hurt his back and got an ugly scratch on his cute, bald head. Every day is another test to see if I can let go and let God take care of him and putting him in His hands and not mine. As a Mom, I don’t know how long – if ever – we fully learn that lesson. Nevertheless, the smiles abounded and our hearts were filled up again with love that surrounded us. It was nice to feel missed and I know it was SO good for Brayden to finally see everyone.

It’s incredibly hard to realize and fathom it’s 2010. Brayden is making lists of things he is so eager to do...normal things he’s missed out on now for far too long over the last 8 months since his diagnosis. My mind can’t comprehend how much has changed. We’ve had a lot of good days, but the reminders are always there. I woke up the other morning and my heart lurched. When he’s sleeping, those bright eyes aren’t shining...and I can’t deny that he’s enduring the effects of cancer: his sweet bald head, his pale skin, his eyebrows gone, and the dark circles that form around his eyes. Ugh...how did we get here? Then, later, when his excitement is there about Christmas and snow and all things 9-yr-old boys get excited about and those big blue eyes are shining, I focus back on the present and remember what a gift Brayden is to us and pray we soak it all in. He’s starting to grasp how long 2 ½ more years really is...and it’s gut-wrenching to explain it and hear the sadness in his voice when he talks about it. So I guess these last two weeks I’ve been hiding out a bit from sharing my feelings on here. It’s been incredibly wonderful and yet so hard at the same time. We’ve missed a lot of special traditions started just when Brayden was 8 months old his first Christmas. It’s been sad to look at the ornaments and special reminders of things in past years. He was so scared and so hesitant to see our family because of how different he looks. I guess these are challenges all families struck with a diagnosis go through. It’s just been so tough to have these conversations and have more realization from Brayden of all that he’s internalizing. I’m glad he’s talking about it but what my heart wouldn’t give that he wouldn’t have those feelings in the first place or to take it all from him.
For now, we’re continuing to focus on the good things. We’re trying to reassure Brayden with all the increased pills he’ll be taking at home for the next 2 ½ years, at least that means less frequent trips to Little Rock. It means no more overnight stays in the hospital for the High-Risk chemo. He’ll get more time at home and hopefully a chance to see his friends at school soon. Hopefully he’ll get to start knocking things off his list of wishes to do and feel a little more carefree.

Please join us in praying for relief for Brayden. He’s been in a lot of pain over the last week in his lower back, his ribs. He has a lot of trouble walking at times. We’re also praying for safe travels to Little Rock Wednesday and that the weather will hold out for us to make it there and back. We’re praying his bone marrow is able to kick in and keep new, baby, healthy cells growing. We pray for peace for Brayden's heart and his resiliency he's exhibited to keep propelling him forward. We pray for happier times for Brayden to renew his sweet spirit so he can continue this journey.

Merry Christmas!

2009-12-27T17:56:00.003-06:00

We've been so happy to be home. The time has flown and I've had SO much last-minute things to do since last Friday, an update has been lower on my priority list. I hadn't checked email or anything in a looooong time. But I wanted to wish everyone a very Merry Christmas and hope that love and peace fill your hearts and homes this season.

Brayden has had a BIG time since being home and prepping for Christmas. I've jotted down some notes to share later. Highlights have definitely included his friends from school swinging by on Christmas Eve afternoon to sing Christmas carols from the driveway. So sweet! The nurses at the local clinic went ABOVE and beyond to celebrate Brayden's move from the High-Risk aggressive chemo to his Maintenance regimen for 2 1/2 yrs. He had an awesome Cowboys' blanket made for him by his sweet nurse that takes such good care of him. He LOVES it! She also put together a HUGE surprise for him to get an autographed photo to him from Felix Jones! He's liked Felix since his days at AR playing for the Razorbacks! He was so overwhelmed. Waking up Christmas morning at home was SUCH a blessing for us all to be together. AND, we had a WHITE CHRISTMAS which for us is incredibly rare!! But such a neat way to wake up!

We were stunned to get his counts last Wednesday and after strict isolation for so long, he was no longer Neutropenic! His counts were at 799! He was so happy. The bummer is it looks like we'll be going to Little Rock tomorrow. Please pray for safe travels, his protection from chemo and its nasty effects. He'll be having a spinal sedation and intrathecal chemo as well as IV chemo, and will now begin a marathon of pills at home. We're praying he responds well and now that we're moving into this phase of chemo, the Leukemia cells to stay gone and Brayden to be forever healed. He's still recovering from Radiation with more pain and some side effects, but we're so thankful he didn't have the nausea like we had been warned was possible.

I'll try to post more in the coming days. Happy New Year!!

So good to be home

2009-12-21T11:24:00.001-06:00

Friday was such a rush of activity. We had done a lot of packing and prep work Thursday night. We were crossing our fingers for good blood results and hopes that Brayden could do more. Friday morning he was so excited to be going to his last Radiation appt. We got there pretty early and got some pictures with the wonderful staff. They gave him his countdown calendar and he thought it was so cool he got to take his mask/helmet with him. He got a hat and a diploma to show his ‘graduation’ from Radiation. It was great getting to say goodbye to everyone and Merry Christmas wishes. We headed to Children’s. We needed to get another check of Brayden’s counts since his ANC was in the low 200’s the prior Monday. After his port access and blood draw was complete, we took a walk to the floor to check on some friends while waiting for the results to come back. It was a welcome relief to hear that they both had gotten to go home recently. After visiting with all the nurses, Brayden let out a cheer when he heard his ANC’s…although Mom wasn’t cheering. If Brayden’s counts had been high enough, he’d have to come back for chemo today in Little Rock and start the Maintenance phase of his treatments. He was just pumped to hear he wouldn’t have to come back this week! Me, on the other hand, not so much. Hearing he was Neutropenic and his counts had dropped to the low 100’s has me again on high alert. We’re hoping and praying his counts are high enough next week to see all of our family for the first time since early October. The yucky Ara-C is doing its job in the long-lasting effects we were warned about. This is week 5 since and he’s still Neutropenic. Nevertheless, at least his red blood cells and platelets didn’t require transfusions, so on the bright side, we were heading home!

We quickly loaded up the last of our things and headed out of town! Thankfully, we didn’t have to stop. I warned Brayden ahead of time with his counts that dangerously low, we needed to try to get straight home. We couldn’t have been happier to be back. Seeing Dad & Hershey a few hours later was so wonderful! Brayden had so much fun showing him all the Radiation stuff. This weekend has flown by with all the Christmas prep to complete and me getting out VERY late Friday to re-stock groceries and get ready for the 10 days to come. We had a few scares with Brayden having a sore throat, but so thankful nothing developed. I was physically ill with worry and I don’t know how I will ever learn to let go of that concern or if as a Mom, that’s even possible. I was so happy to see his bright shining eyes the next morning after he finally ate a better breakfast. Brayden and I were busy on Saturday wrapping presents. He did SUCH a good job on Dad’s presents! We were definitely enjoying the Christmas activities at home – baking, looking through Christmas cards, reading through school stuff and cards & gifts from his friends! Thank you!!!

We go back to check his counts Wednesday locally and I’m just praying they’re above Neutropenic level so we can breathe a small sigh of relief for now. Regardless, I think we’ve learned to still have fun and enjoy all the moments we have together. I’ll try to post some pics soon. Brayden definitely can’t hide what he’s going through anymore and I noticed how different he looks even after Radiation. We’re so thankful for how strong he was and how well he did in enduring those 8 treatments. Even though he’s Neutropenic and has been so tired, weak, & in some pain, we’re thankful he’s fighting and not having to spend this time in Little Rock or in the hospital from a fever with being Neutropenic. We’re so thankful we’re together at home and pray for him to regain his strength, for all the Leukemia cells to be killed in his brain after the Radiation and especially in his body after the long 8 months he’s endured of High-Risk aggressive chemotherapy. We pray that everyone remember the true reason for this special season and be filled with peace and love for one another. Merry Christmas!

Radiation Days 5 & 6...100's of Thank You's!

2009-12-16T20:14:00.005-06:00

WOW! I just noticed this is my one-hundredth entry. Unreal, since 8 months ago I never could have imagined we would be sharing so many things with all of you here about Brayden's unexpected journey. I hope we've said thank you enough for sharing with us in this journey with prayers and encouragement.

We wanted to send a BIG thank you out to everyone who donated blood today! 64 units were able to be banked to help so many others who need it. I hear the Red Cross staff traveled EARLY from Springfield today and were so happy to be working on behalf of Brayden's drive. We're thankful for them being here and making that drive. Thank you to Paula of the Bentonville Plaza for use of the great location! Thank you to Korey from the Red Cross for organizing the event and allowing us a way in which to give back. Thanks to my mom, aka Brayden's Nini Annette for representing us today when we couldn't be there. We hope everyone liked seeing Brayden's beads on his buddy, Champ and a visual representation of all that he's been through so far. More than once today Brayden said he wished he could be there...we both do, to thank each of you in person. We hope each of you liked the Team Brayden bracelets as a small token of our appreciation for your time and special gift today. We also couldn't have made this happen without Nini Annette pulling together volunteers to give of your time off to come and help make this happen. Thank you to Hannah, Amber, Phil, Denise & Tiffany.

Thank you for the encouraging calls, emails, and pictures that have come our way from today's Blood Drive. It was the next best thing since we weren't able to be there in person. I didn't want to post certain pictures without permission, but Brayden and I have really enjoyed getting to look at them and hope you enjoy this one. Brayden was thinking how neat it was to see a couple giving platelets! It truly is amazing how differently we look at things like this now.

Yesterday was a rough day. I just couldn't muster up the courage to post. Brayden had wanted to go for a short walk after we got back from Radiation. I reluctantly agreed and hoped the fresh air would do him some good but the cold air wouldn't hurt him. The old Brayden couldn't just walk...he wanted to run. After running some sprints with me begging him to take it easy, I finally coaxed him into going back to our hotel room. Within minutes, he told me he didn't feel well. He crashed. He had just worn himself out and didn't want to eat. I blamed myself and hate not knowing what to do and how to balance letting him be a boy and yet trying to protect him. I was run-down myself and this time being here in isolation is beginning to be longer than what we thought. All of it was beginning to be too much and take its toll on both of us. Thankfully, after a long rest, Brayden finally ate a bit and was more like himself. That helped a little...until he wanted to watch a St. Judes special on tv. It was good for him to identify with other kids. But their stories hit too close to home. Again, I found myself in denial suddenly realizing the kids we were watching with the same diagnosis were just like Brayden. How did that become our life, and something I'd never wish for my sweet boy and want to protect him from? It was a very hard night. Today's fresh day and perspective was a blessing. So was how much better he did. He wasn't as tired and didn't get the yucky taste. His stickers are filling up on his calendar. Just 2 days left! He had more x-rays today to be sure everything is still on track. Thank goodness there were no issues. We were shocked to see how much weight he's lost in the week since he started Radiation. It's a good thing he had the steroids before the last month to have some extra to give!

When we came back to the hotel, he had a good lunch and was able to get some schoolwork done. Since he's been in rare form with some lovely comments. "You used to write in cursive when you were in school, mom? They had cursive back then? Was that before the Titanic? What about the Civil War?" I guess I'll be making him a timeline of my life and these important historical events during Christmas break to give him a better visual that his mom is NOT that old! He decided to - on the fly - plan his 10th birthday coming in March. He has said he wants to go back to the Sam Walton museum. Nice. I think we can make that happen...of all the things he would want to do! Tonight it's been fun hearing all the good stories and positive comments from today's Blood Drive. It's pepped us both up and it's been a great gift that each of you have given!!

Tomorrow we hope time starts to go by quicker as we pack and get ready to leave Friday. He'll have his final doses of Radiation tomorrow & Friday. We'll also get an update on his counts to determine if they're high enough to start the Maintenance phase of his chemo the following Monday. We're not sure to hope that his counts are low enough to have a break or high enough so he can continue. Of course we pray they aren't Neutropenic levels though. We're still praying for his protection from the ugly effects of Radiation and his immune system can keep fighting and not have any germs that he can't fight off that effect his system. Until we're home, just a few days to go and we can't wait to stop and breathe and focus on the beauty of the Christmas season without Dr.'s appts or chemo for a little bit!

Radiation Day 4

2009-12-14T19:26:00.002-06:00

Brayden announced this morning he's halfway through Radiation! Thank goodness...it's been a bit of a rougher day. We started out early at ACH to get an update on Brayden's blood work and check his counts. We had been crossing our fingers they were high enough so he could get out and get a change of scenery. Remember he's been in isolation since October. Poor guy...He had a great time seeing his Nurse buddies again. We were SOOOOO happy to see his Oncologist's Head Nurse back! Whew, did we miss her! Brayden was pumped that he only had to get blood work and the port access didn't have to stay in there long. After being accessed quite a bit the last several weeks, he told me this weekend his port was feeling good after almost a week-long break. He had a check-up from another Oncologist and we talked about the impact of Radiation. After waiting a bit, we saw his results. The good news is his hemoglobin and platelets are high enough to not have to worry about transfusions right now. The negative is that he's certainly Neutropenic...not what we had hoped. But that's okay. We're all set up at the hotel and at least we were prepared with Dad being back home.

We headed over to Radiation for Day 4 and he again did great. Thankfully no sick taste this time. I guess the Zofran has helped. But it wasn't long before he was getting nauseated once we got back. Thankfully he had a good breakfast and lunch before he crashed. He took a looong nap. The thing that we saw the most last week is how tired the Radiation makes him. I was glad he was at least able to nap since last week he wouldn't or couldn't. He was peppier after he woke up and I was so thrilled. He had been hurting and not feeling well when he went to take the nap so seeing him more himself just did my heart good.

We're praying Brayden's body stays strong and free from infection. With him not having much infection fighting ability, it makes me extra nervous and makes fever so much more likely. He's done great so far and we pray it continues. We pray his counts recover, he stays strong and these last 4 days of Radiation go by quickly!

Running On!

2009-12-13T17:50:00.006-06:00

One of Brayden's friends' Mom sent me an incredible email. Her phone call left me stunned at this idea. SO neat! Her brother-in-law, Brad Quinn (link to his bio), is running a marathon. Not just ANY marathon...a 100k! Hello!!!! And, not just anywhere. They are running for shoes and medicine for under-privileged children in 3rd world countries. This link gives more details about this race and here are some comments from their website:

Ultramaratón Fuego y Agua is an extremely challenging foot race on Isla Ometepe in Nicaragua. The race is composed of four different event options, the 25k, 50k, 100k and a 2/3-person 4-stage 100k relay. The 100k and Relay course is a single loop encompassing most of the island and involves the ascent and descent of both volcanoes. The 25k and 50k courses cover part of the 100k course.

Because of the volcanoes, the island holds several micro-climates of jungle, dry tropics, tropical beach, and cloud forest. The race course winds through singletrack, dirt road and sand as it passes towns, villages, coffee, cacao and banana plantations, cloud forest, volcanic trail and white sand beaches.

Brad does this frequently for other causes like the American Cancer Society. Well, Miss Susan (her daughter is in Brayden's class and such a sweetie) put together a flag with their class motto and had everyone sign it. How cool that Brad heard about Brayden's story and wanted to do something! So he carried this flag for Brayden and planted it on the side of a volcano! SO COOL! Thank you to Susan and ACA's awesome 4th grade class for such an incredible showing of support for Brayden. You all are each amazing! Thank you so Susan for pulling this together and giving me goosebumps when telling me about Brad's run. And Brad, just another dad from Texas, run on! You are an inspiration!

It's a Wonderful Life!

2009-12-13T09:42:00.003-06:00

Radiation Days 2 & 3 went well for Brayden. We played Hangman in the waiting room since they were running 30 minutes behind schedule. I finally remembered to bring my camera and got some good shots...but I can't hook up my camera until I get back home to share them with you :-( Did I mention on here how they made him an adorable calendar? It has his name across the top and the month of December on it. It's filled with Christmas stickers and colors. For each day he's done with treatment, he gets a sticker to help count-down his days. SO NICE!! He said he got the yucky taste again but not for as long. He's been SO tired...wanting to go to bed at 7:30 tired. His appetite has diminished but he's still getting some healthy things. Other than that, no sickness!

Friday afternoon we were counting down - literally! - the hours until Dad got here. It perked both of us up again getting to see him. I didn't realize how we might have been dragging a bit until he got here and we were both pumped up! I haven't seen Brayden that clingy with his Dad in forever! It was great to see them playing, wrestling, but mostly hugging on each other.

Yesterday I got to sneak out and re-stock groceries before Bryan leaves. While out, I surprised Brayden and got a mini Christmas tree on clearance! We're talking the 1 1/2 ft kind. It's so cute! So I found a couple of clearance ornaments to throw on there to help spruce up our hotel room. He was so excited to see them! We had a lot of fun decorating it. Sure, there weren't that many branches to decorate. But it was still fun! I was proud of myself for being creative and using our little ice chest with a hand towel over the top as a tree stand and skirt to put the mini tree on!! Simplicity definitely helps you appreciate the little things.

Last night we had a fun time. After the tree was decorated and we had dinner, we played some games and got to watch "It's a Wonderful Life!" Bryan and I were both saying we've never seen it all the way through from beginning to end. It seems like I always catch the last 30 minutes. We were both saying "Oh!" Now it makes sense! What a neat story. Brayden enjoyed watching it too while we colored and played. It was such a nice family time. Now today we're trying NOT to count down the hours until Dad goes back home. It's going to be a long 5 days before we get to go back. Brayden's missing Hershey and we're just ready to be home.

Monday we'll get an update on Brayden's counts and possibly Friday as well. If his counts are high enough, he'll return on Monday the 21st to begin Maintenance. Wow...it's amazing to think how far he's come. The 21st will mark 8 months since that dreadful night in the ER and life flight to Children's. So in other ways it's been so long already. But we keep focused on how he's finally past all the high-risk aggressive chemo regimen! Even though he has 2 1/2 yrs left, it's not like what he's been through! We're praying his counts rebound, he stays strong through Radiation with no sickness and secondary effects. We pray for protection for him from all the other effects of Radiation. We pray safe travels for Dad and protection for us this week. We continue to pray for Hannah's sweet family in the coming days and weeks. Our hearts break with them...

Don't forget to Donate Blood!

2009-12-09T20:24:00.006-06:00

The blood drive in Brayden's name is just 1 week away! If you haven't signed up yet, there are more slots opening up! You can sign up for an appointment to fit into your schedule. Drop-ins are still welcome! Please help us spread the word. We were so excited to make our goal, but there's still room for more donors. After Brayden's blood transfusion this past weekend, we were again thankful for donors in our area that helped keep his body fighting. Seeing my sweet boy so pale and his lips so gray, heart rate working over time to keep his blood pumping while his levels are so low is just such a scary experience. Watching those 2 units of blood have such a profound effect on him and turn those cheeks & lips back to pink, watching his stats come back into normal range and seeing his energy levels increase is an answer to prayer and thankfulness for a donor who helped make that possible. Each of you can help give that gift of life to others this Christmas!

Brayden and I are sad we are in Little Rock and will miss the Blood Drive. We'll have generous family and friends there donating their time as well to help make this possible. Brayden has a special thank you to each of you after you give that gift! I kept reminding him of that while he was getting his transfusion. Your gift does not go unnoticed or unappreciated. Thank you to all of those who are stepping up to be first-time donors! If you aren't local or able to attend this blood drive, please give blood in your local area and you can mention Brayden's Blood Drive (if you want) so the donation will be given in his name.

We aren't doing this for any other reason than to use Brayden's Journey to help others and allow each of you to realize what a difference you can make by donating. It's our way to try and give back and ensure when other children need blood, there isn't a question of whether or not it's available. Thank you so much for your help in making this possible!!!

www.givelife.org - code 72712. Location: Bentonville Plaza Suite 120, December 16th. Once you logon, there are directions for the Bentonville Plaza and appointment times to choose from 9-3. PLEASE SIGN UP TODAY!

Radiation Day 1

2009-12-09T19:25:00.002-06:00

Whew...driving to Little Rock Tuesday was more of an adventure than I could have imagined. We were so thankful for safe travels after seeing so many cars off on the side of the road from, we assume, hydroplaning. There were too many wrecks and even a truck on fire. The rain was SO heavy we had to go slow and play it really safe. The long drive seemed so much longer. Brayden was not his normal self and slept the whole way. That hasn't happened in a while.

Brayden was SO nervous when we got to Carti. I hope the cute nurses helped. They were so nice. They were giggling at his chatty nature...and were quick to tell me the grown men do it too, but it's not quite as cute! He was positioned on a lovely, plush, comfortable...okay, a rock-hard, solid table. The big machines were a little bit intimidating. The making of his mask was unique. It looked like a flat strainer with screws on the outside edges. The flat strainer part was like a pliable plastic. They put it in hot water and then after positioning over Brayden's face, it was really tight and began to take the shape of his face. You have to position it just right while screwing it into the table and allow it to dry while it conforms to the shape of his face. He was excited to know he gets to keep the mask after he's done. Who knows...next Friday he may never want to see it again! Anyway, they told him how the mask feels like wet noodles until it dries. Then the lasers are lined up just right and the mask is marked. We were glad to hear that since the material we read originally indicated he would have tattoo marks in order to properly position the machines. This is MUCH easier! After the CT-scans, Brayden had many more questions. It was painful to him to have to lay still and not speak! He made up for it after the mask was unscrewed from the table and he was free again. After seeing his mask off his face, he had to comment about "My head is HUGE!" He wanted to go back and see the computer images of his CT-scan. They were so patient with him showing him where his brain was, his ears, his eyes. We even got to see his port on the image!

We had to brave the rain again to make it to our hotel and get checked in. We were really missing Daddy after carrying in 11 days worth of medicine, clothes, all his books and schoolwork, and the list goes on. After an hour of cleaning, the un-packing had to start and we finally got settled in...just in time for dinner. Last night was definitely a blur. Our hearts were broken to read about Hannah Grace and her homecoming into Heaven...our prayers for them have continued today.

This morning came way too early. Brayden wouldn't eat breakfast. I know he was really nervous. The cold this morning was brutal! My poor car was NOT happy not being in the garage like at home! Radiation today got off to a good start. Everyone was so nice and friendly with Brayden. I forgot my camera but will try to remember tomorrow. He had to get back on the comfy table and re-position, then screw in the mask again. It's a little nerve-bending hearing them talk about the critical placement of the mask. This room had cameras on him and the Radiation machine was behind him and over him. They use a band to velcro his legs together to help him stay still. It took a little longer than it should going forward because they had to get more x-rays. Walking out of that room knowing what the machine would be doing to both sides of his head and brain was some hard steps. My legs felt like 100lb weights had been bolted on my ankles. Watching him on the monitor with the technicians and all the computers was at least a little more comforting. The huge machine rotates from side to side and just was massive. The red lasers were positioned and re-positioned to ensure it was on just the right spots. Finally...it was over. I ran in to see him and he couldn't WAIT to be free again of the mask. He said the sound it made was scary and it made a bad taste in his mouth and almost made him get sick. Yikes. I'll definitely be giving him a Zofran before we leave tomorrow.

We had to see the Dr. before leaving and Brayden was happy to get to head back out into the cold. He had to wear a super-warm hat to keep him warm. His head just looks so vulnerable in this cold! This afternoon we both worked, but were working against our heavy eyes. He didn't give in...he hasn't eaten much today. I keep watching for things, but we've been told twice symptoms don't usually show up in the first day anyway. Tomorrow's appt will be a little later, so I'm hoping he'll get some extra sleep and hopefully eat at least some fruit & yogurt. He's loving those low-sodium V8 snack drinks lately. We loaded up on Acai berry juice and some blueberries and almonds. Hopefully he's getting enough good nutrition to help fuel his body to keep up the fight.

He should have to get blood work at Children's this week...we're just waiting to hear when so his Oncologist can also check in on his progress. I reminded him again today why he has radiation and it made me wonder if I had said it clearly enough on here. His type of Leukemia is highly treatable with a 76% success rate. In children where there are Leukemia blasts present in their spinal fluid at the time of diagnosis is treated with additional procedures. There are 3 levels of measurement of the blasts: 1-3, 3 being the most severe. Brayden's were at Level 2 when he was diagnosed. All of the spinal taps he has had, (lumbar punctures) have been injecting chemo in his spinal fluid to treat the cells that were present in his brain. The blood in the brain is separate and treated separately from that in his body. So the other chemo treats his body and the LP's and Radiation is to treat the cells in his brain. Years ago when the success rate wasn't so high, research had shown that children would look like they were in remission then the Leukemia blasts that had been hiding in the brain would overtake and the children wouldn't make it. So with all the side effects of Radiation, it's proven effective to ensure after Remission, those children don't relapse with those blasts that hide in the deep recesses of the brain while the body is under-going chemo. We just want to ensure it doesn't come back.

Tonight he's having some leg pain that could either be attributed to the chemo shots in his leg last week or his peripheral neuropathy. I'm hoping it's not from Radiation this quickly. He isn't liking any food this evening so I'm hoping his taste buds aren't effected already either. Please join us in praying for a restful night of sleep, peace for him for his Day 2 of Radiation tomorrow, and again protection for him from the nasty effects that Radiation can bring. Stay warm tonight!!

Checking it twice

2009-12-07T23:29:00.004-06:00

So much has happened so fast. Here's a quick update - okay, as quick & brief as I'm able to do while being my detailed self:
Friday when we went to get Brayden's blood work and counts checked, we found out his ANC's were at zero. He was severely Neutropenic, no immune fighting ability at all. It's so scary when this happens. A fever is usually so common, followed by a rush of antibiotics and 3 days in the hospital. But we didn't have much time to let that sink in. His platelets had bottomed out to 40 (at 20 they usually transfuse) and his hemoglobin was at 7.4. If it's below 8, usually a transfusion is done. In the past, Brayden hasn't needed blood or shown as many symptoms and I immediately became concerned. How would I know if something went wrong? We waited in the secure isolation room at the Clinic for what to do next. The nurse could see the panic in my eyes. 4 hours later, we had orders from AR Children's Hospital to admit him to our local hospital and have 2 units of blood transfused. Ugh...being at the hospital with Bray being Neutropenic is the last thing I'd want to do for fear of him getting something else while there and his system was so susceptible. Brayden was NOT happy. Even though we talked about this possibility, he wasn't thrilled at all when he thought he was done with overnight hospital stays.

We drove straight to the hospital to get things going until Dad could join us after work and bring some things from home for our night stay. I was a wreck and insisted he wear 2 masks. Thankfully we got him to a room pretty quick. The nurses probably thought I was crazy. I grabbed the first container of industrial strength alcohol wipes in the hallway and got busy. These things you can't even touch with your bare hands! The bed rails, the light switches, the door knobs, you name it...it got wiped down. I had Brayden laying in his bed like a mummy with his DS not moving until I tried to feel a little better about this foreign room and hospital. I tried to swallow down the panic when the tech walked in the room without gloves or mask to take Brayden's vitals. But I did what we were taught in the early days after diagnosis at ACH and asked politely. And so we waited. 4 hours later, Brayden and I had visited with dad, got a little more settled in, knocked out some schoolwork, and finally his first unit of blood showed up. There were some concerns at first when orders were first written because of some extra steps that have to be done before he can receive a transfusion. Needless to say, we were praying extra prayers to prevent so many of the side effects that can develop and I was SO happy to see the bag finish 4 hours later and his stats still looking good while they prepped the second bag. About 6 the next morning, his nurse was removing the second empty bag and told me we were free to go, or were welcome to stay. We were breathing a huge sigh of relief! Brayden was stirring and I told him the news. Sleep? Uh - NO! He was up and getting his shoes!

After the cold drive home, I couldn't stop smiling. Brayden was definitely juiced up. He didn't stop talking once all the way home! Within a few more hours, his pale skin and gray lips were bright & rosy again! It's amazing how much more energy he had and again reminds me if he remembers what it was like to really feel good. We were trying to recover while still catching up on sleep and the crazy week prior. The night away made me realize we were so tight on time before Christmas and we needed to get some things done! After re-cleaning our house again since Brayden was Neutropenic, we enjoyed some time at home before today's visit back to the local clinic.

I had warned Brayden if his platelets were low, we might have to repeat Friday's trip for a different infusion. Meanwhile, this morning we heard some incredible news. His Oncologist really wanted Brayden to get finished with Radiation before Christmas. Thanks to some prodding from his awesome Nurse, the dates were pushed back. Only we thought we had one more weekend. NOPE! We leave in a few hours for Little Rock! AAAHHH!!! However, if Brayden was still Neutropenic and needed platelets, things might again change. I don't know if anyone knows how it's minute by minute sometimes. Again, I have to relinquish control and have that uncomfortable feeling of not being able to plan everything out. After calls with ACH, Carti for Radiation, my work, Bryan, my mom (since sometimes she's the last to know!), Brayden's teacher...we left for Clinic. After Brayden's normal sarcastic humor with the nurses, he received his last round of aggressive chemo before he starts Maintenance chemo for 2 1/2 yrs! YEAH!! While we were celebrating, the nurse at the local clinic comes in and asks if it's really Brayden in that bed or his twin. I saw the yellow paper in her hand and knew she was holding Brayden's lab results from his blood work. WHOA! His platelets JUMPED to over 300! He had ANC's! Not a ton but enough to keep going and help him not be Neutropenic! And, of course, after 2 units of blood, his hemoglobin was looking good! Everyone was so stunned, they did another blood draw and checked his labs twice...just to be sure! It was confirmed...they were accurate. I started making phone calls to confirm with everyone again, we would in fact be leaving for Radiation.

Brayden was student of the week this week and I was so sad to realize he wouldn't get to finish. We won't be home again until the night of the 18th. Dad will stay back and work and I'm so thankful for Marriott reward points donated from gracious co-workers at my awesome company so we have a place to stay. So we'll get this knocked out and be home to enjoy a week before Christmas.

PS - someone stopped by tonight who was also checking things twice! I wish I had gotten a picture of Brayden's reaction when Dad opened the front door to show who was standing there! It was very last-minute...Dad arranging with a sweet friend now that his counts had rebounded knowing he can't get out. He brought such a nice gift by and was telling Brayden how brave and strong he has been and to keep on fighting! Brayden didn't stop smiling for a while.

These are the things we are certainly praying for...after hearing from Brayden's Oncologist some children can get 'violently ill' and have other reactions to Radiation, we're praying Brayden has minimal impact from this final aggressive round to eliminate all the Leukemia cells found in his brain at the time of his diagnosis. There are too many side effects of Radiation to list here. We certainly pray Brayden be protected from the cognitive impact, from the risk of secondary cancers. We pray the CT-scan and head piece fitting go well. We pray Brayden be emotionally at peace with this uncertain and scary treatment. For protection for us traveling, Dad here at home, and us in Little Rock alone.

Until next time...Brayden says he'll soon be tan like mom after his radiation is done!

Please Pray for Hannah Grace

2009-12-05T17:14:00.004-06:00

We've had a roller coaster 18 hours with Brayden and are home from the hospital. But as thankful as I am he's home, my heart is heavy. We heard about sweet Hannah Grace from a dear friend of ours while Brayden was in-patient at ACH getting chemo in early October. Since then, we've asked for prayer before for her, our family has tried to do small things to reach out to her and her family. But tonight our hearts are so heavy. I've been behind on updates on how she's doing. Please see this link from a friend of hers who did a summary on what is happening and why tomorrow is so critical that this family be lifted up in prayer. You can follow Hannah's updates on Caring Bridge to the right of Brayden's blog - her name has a link for it.

There has barely been a day that goes by Brayden doesn't ask about his friends (both those he's met and those he only reads about) who are also fighting. He asks about Hannah nearly every day. "Hey, mom. How's Hannah doing? Have you heard any updates?" The last few weeks it's literally hurt my heart to hear him ask. I want to protect him from as much as I can as a mom. I know, however, I want to be honest with him. I've tried to gingerly give him more information in preparing his heart for what is coming. Even though we are not giving up and are praying for a miracle, his friend who also has Leukemia who he's only seen pictures of, that also lives in this area, and also goes to ACH, is fighting so hard and is up against so many obstacles.

Our hearts will be with Hannah Grace's family tomorrow as a fellow mom, dad, and sweet child fighting. We pray for their peace, God's Hand to be upon their family and carry them, and for so much more my heart can only speak to Him. Please join with us in prayer for them and we pray their family be surrounded with love from so many in God's family.

Is it really December?

2009-12-03T17:23:00.002-06:00

I can't believe it's been a week since Thanksgiving. I just didn't have the heart to update since we were at Children's Thanksgiving Day or since. Brayden's Oncologist was wonderful to come by and talk to us, spending so much of his holiday time doing all he could to make Brayden laugh with his stories of his cats, football (even though he doesn't like football but knows Brayden does) and the list goes on. Meanwhile, we were reinforced of how bad this past round should have been for Brayden. He was so surprised Brayden hadn't been sick since these chemo meds had been in his body before and wreaked so much havoc, this round should have been all the more intense. Sometimes I wonder if the chemo is really working when he doesn't have the intense responses that are expected, like with his hair taking so long to fall out and his minimal sickness with this round and so on. On the one hand I am so grateful he hasn't had to endure more than he already has, but it's honestly left some looming questions hanging over me. We were SO thankful to hear his eyes made it past the impact from this round. He could have had bleeding conjuntivitis from this. Ugh. We were warned how bad that could have been and I'm so glad the drops worked and that was one more thing he as able to avoid. We were assured the timing of Radiation wouldn't change. Since then, there have been some changes sent to me, but they aren't locked in stone yet. We haven't heard from the Radiation people yet so we're not getting our hopes up just yet.

Thanksgiving the ride home wasn't so great. Brayden rode with Daddy this time and the silence with me in the car alone with my thoughts was deafening. I kept reaching for the phone to call someone and kept reminding myself everyone else had plans and was busy celebrating with their families. I think that's what made the weekend so hard was that there wasn't anywhere for me to run for those 3 1/2 hrs or anything to do to keep my thoughts somewhere else. It was just me, the road, and all the possibilities and re-living the past 7 months in my head and heart. I kept focusing on that we were lucky we got to walk out that day with Brayden and come home. I never want to rejoice in someone else's sorrow. I do want to remind myself how much more Brayden could be enduring with not even getting to be at home. I guess that comfort keeps me going.

We celebrated our Thanksgiving Monday night. Sweet Bryan picked up a turkey breast for me and groceries when we got home since we'd been gone and hadn't shopped for a week. The frozen turkey breast had to wait a few days to thaw in the refrigerator, but it honestly seemed to work out better that way. We truly acknowledged all the things we have to be thankful for this year and it certainly had a profound effect on all of us. The weekend flew by in a blink with so much to do in catching up on cleaning, laundry and more cleaning after being gone. His Oncologist was so sweet to check Brayden's counts for us before we left ACH on Thanksgiving. I almost wished we hadn't...he was Neutropenic. So we've spent the week being extra careful of germs since anything could cause his system to react with a fever (then hospitalization).

Tuesday Brayden had a round of 2 chemo meds, Vincristine and Asparaginase which is the two shots in his legs. It was so rough watching him endure that burning acid feeling in his muscles and his legs have still been sore. But we kept trying to focus on this being his last time to get this one. One more down! The staff at Highland's does such a great job. It just breaks me in two to see him in pain like that though. After getting the results of his bloodwork, I'm on high alert watching him for reactions. His hemoglobin and platelets were lower and near transfusion level. We go again Friday for another update on his bloodwork and we're just praying they've come up on their own so he doesn't have to endure a transfusion with all its many risks. After this much chemo, their bodies just can't make more cells on its own without help from the transfusions. He's been more nauseated this week. Wednesday was a really bad day and he really had me worried. Even with the nausea meds, he still wasn't himself. Thankfully Thursday he was improved, but has still been in pain, nauseated, and not 100%.

I'm thankful for 1 week nearly down without a Little Rock trip. Those drives are so hard on all of us. Next week we should be able to have a break as well, but still getting chemo locally and checking his blood counts frequently to ensure the last round of Ara-C doesn't have him in the danger zones for transfusions.

We're very close to our goal for the Red Cross Blood Drive. Most likely, we'll be in Little Rock, but there are a few pieces to confirm. Thank you to all of you who have signed up. If you aren't in our local area, you can certainly go to your local Red Cross and donate on behalf of Brayden. We all are so thankful for your generosity and your time to give of something that can help so many. Thank you all for your prayers as he draws closer to the Maintenance phase of chemo and can put the aggressive rounds behind him.

We need YOU!!

2009-11-24T22:15:00.008-06:00

So many have asked us how they can help or what they can do...here's what we're asking. So many of you can give us and others an amazing gift - the gift of life in donating blood. It wasn't until we were sitting next to Brayden's bed hearing that he'd need to have a blood transfusion and the words that the nurse would 'check to see' if there was blood to match to give him that we realized how critical this can be. Check to see? That is so scary! SO many Oncology kids rely on blood transfusions after the effects of chemotherapy has wreaked havoc on their bone marrow and burned it out from beginning to make it's own blood. They rely on blood from donors just like you to get them through****Please sign up and encourage others to as well! We'd love to help spread the word to encourage others to give back this season!**** If you aren't local to participate in this drive, please give blood in your area. You can still give on behalf of Brayden's drive when mentioning his name. Read more to hear about Brayden's Blood Drive and the goal we have to help others this Christmas!

In this season of thanks, we have recognized how much we have to be thankful for this year. We want to find a way to give back and help so many other families this holiday season. What better way than giving the gift of life? As a way to help so many other Oncology kiddos and parents fighting, we have set up a Blood Drive in Brayden's name December 16th. What's great is this only takes a minute to visit the link and sign up to make an appointment! Simply make the appointment to give back in giving life to donate blood to help in times where there simply isn't enough supply to help these critical patients that can literally make the difference in their fight. www.givelife.org - code 72712. Location: Bentonville Plaza, December 16th. Once you logon, there are directions for the Bentonville Plaza and appointment times to choose from. PLEASE SIGN UP TODAY! We have a goal of 50 donors, but we'd love to have more!! I know you can help us come together for a great turnout to support Brayden's fight and help so many other children. Thank you all in advance for giving so freely of something that each of you have that can save a life!
Bryan, Lisa & Brayden Jones
jonesfam4877@att.net

~ To read more about Brayden's Journey, see the attachment and read below ~

Brayden's T-Cell ALL diagnosis on April 22 this year stunned all of us in a boy who rarely got sick and was so healthy and energetic. This rare form of Leukemia has had him on an aggressive High-Risk Chemo regimen for nearly 7 months now. It's kept Brayden from school, getting to go out to eat or to a store, playing football or soccer again, and even from contact with his family due to the havoc it wreaks on his system to break down all the bad cells and begin re-building again. We've been so grateful for encouraging emails and cards of support from friends and community members. There have certainly been some dark days: grieving the loss of innocence in our sweet 9-yr old boy, the loss of normalcy, the loss of Brayden's hair and his involvement with his friends, celebrating too many holidays in strict isolation at home without family,and the realization that for the past 7 months and next 3 years, trips to Children's Hospital, isolation for his health and being immune-compromised, Chemo, blood transfusions, and weekly blood checks are our new way of life to help him kick Leukemia and get him back to playing football again! He's done so well on this aggressive protocol and we're thankful for a 78% success rate where so many childhood cancer treatment plans aren't so successful. There are many risks he faces for the rest of his life, including developing secondary cancers as a result of treating the Leukemia. We continue to hold strong to our foundation of faith and continue pressing on in this Journey we are now on as a family. In the meantime, Brayden is so strong and truly resilient. We're so thankful he's kept his sense of humor and his beautiful outlook on life. Thank you for coming here and joining us to hear more about how Brayden's doing and read more recent (detailed!) updates.

2 days to go...change of plans

2009-11-24T21:14:00.003-06:00

What a day! We are all still catching our breath after an exhausting day. Brayden had a nice sleep-in until 10:30! We kept checking on him to be sure he was okay and there was no fever or anything going on. We were so happy to see Dad make it in safely last night FINALLY after a late start. Dad and Mom were up early - Mom was working...Dad was working on catching up on the paper! Seriously, Brayden still was feeling good this morning and woke up and had a great, late breakfast. I'm in such amazement what a stark contrast this round has been from the last time he had it. I so hope he can get by without going through that again. We're so close! Just 2 days to go with the yucky Ara-C.

Around noon it was time to head to Children's to the Oncology Clinic. Whoa...we knew it was bad when we walked in and there wasn't any chairs. We've never seen it so busy. After an hour and a half, we realized there was no way we were going to get chemo in time. We had to go to the Radiation center for Brayden's first appointment to get things set up and us acclimated with the facility and the process. A nurse came out and advised us to go ahead and then come back. Yikes. We left ACH and headed over. Brayden was in rare form - practicing his golf swing in the waiting room for Dad while I recapped his hospital stays, his diagnosis, his medical history, his prescriptions. I don't think it's set in for me as much as having to check that cancer box for the first time. Oh, that was hard. It's like that box is reserved for other people, not our Brayden. How can it be that after 7 months now this week, that still hasn't set in? I was so thankful for Brayden's humor and bright smile to distract me from the emotional impact of that paperwork.

We went back and got to speak to the Radiation Oncologist and his Nurse about the process. Within 30 minutes, our worlds were tossed upside down again. We were alarmed to hear his Radiation would be more than we thought all along and glad we questioned him. Thankfully, Brayden's Oncologist confirmed what we had been told - 8 fragments. The bad news? His Radiation Oncologist announced he'd start treatment in 4 weeks. I asked him - "4 weeks? No later?" His look said it all. He didn't get it. I said a little clearer, "Isn't that the week of Christmas?" His reply sunk me - "Oh. Is it?" WHAT?!!?! I know he's busy and this is our first meeting, but this time of year, I thought everyone knew the holidays were coming and the Christmas countdown. So that was the verdict. He'll have Radiation over Christmas - the 4 days the week of (including Christmas Eve) and the 4 days after (including New Year's Eve). We all looked like we had been kicked in the stomach. I begged...could we not wait 2 more weeks? Nope. The timing was critical. And, above all, we'll have to come back to Little Rock again for an appt to make the mold of his head gear that we thought they'd do today. Yuck. Poor Brayden's questions came a mile a minute the second the door shut. We were trying to keep him calm. None of us wanted to hear this. First Halloween then Thanksgiving and Christmas was just too much. Sure we'll be at home, Christmas Day, but we just didn't want to have him go through this at Christmas. The silver lining we were encouraging him to see? 2010 truly will be a new start for him - all the yucky, rough, hardest part of the treatment will be behind him and all maintenance in front of him. It wasn't enough to shake any of us out that stark realization. We're still trying to remain positive and slowly let this sink in and move forward.

We were all more than a little deflated and on edge. Plus it was 3 1/2 hrs past lunch. We rushed back to the Oncology Clinic and finally got to leave 3 hours later. I felt awful for the nurses. They work so hard and this had been one awful day for them too. We did a little something nice to cheer one of them up that has done just that for Brayden in the past. We hadn't gotten to see her in a long time because she's usually off on Monday's when we're there. Her tears and hug after a long, hard day cut into me. I forget how much they see. Right now Brayden's Oncologist is on the floor and ICU and will be working Thanksgiving Day and is dealing with so much himself. Another sweet little girl from our area whose future is so uncertain and hangs in the balance. It was a good reality check that even though this has been a bad day, we aren't alone and still have so much to be thankful for. Although my heart still breaks for them. We were lucky tonight. We didn't have far to drive this time. We were able to grab some food in the cafeteria and at least Brayden was still eating. We made the most of it by watching National Treasure after finally getting a treatment bed to start Brayden's chemo.

We're here snuggling down for the night. This is the first time Brayden's port has stayed access and he's a little weirded out by it. I am too. Especially after reading another mom's story how her son's was bleeding everywhere in the middle of the night. Hello. It's not likely I'll sleep well tonight without thinking about that and getting up a million times to check. We're so close and hoping he can still continue to get through it well without fever, without his counts plummeting, without impact to his system. Thank you all for the comments! Brayden had some smiles and laughs tonight reading them with me. Here's hoping tomorrow is a better day, and Brayden continues to stay strong!

The wonder of sheets

2009-11-23T19:48:00.004-06:00

I was SO proud of myself. After cleaning the hotel room from top to bottom last night, I was still so anxious when we got back from Children's this afternoon. After work this evening, I had a brilliant idea! I promptly called for a sheet set from the front desk. SCORE! The flat sheet made a PERFECT cover for the sofa and the fitted sheet over the chair - yea! That way Brayden wasn't isolated to the bed or the chair at the table. SO much better!

Brayden was bummed to learn last night he had a spinal sedation with chemo this morning along with the Ara-C. We were so glad it went well. Seeing him come out of sedation is still so unnerving. It's so much better to see his bright, blue eyes and his funny chatter. Thankfully, he'll have a break from spinal LP's for a bit.

Tomorrow Brayden will have another dose of Ara-C, then we'll go to meet with the group who will administer his 8 fractions of Radiation. We've been thankful to hear some details from another mom. It can be a little scary, so we're hoping and praying we can stay calm for Brayden and this won't be traumatic for him. Basically we've been told he'll be fitted for a plaster mask to make a mold of his head. This will be used when he gets radiation to screw the head piece (once on him) onto the table to ensure the radiation stays pin-pointed to the right spot in his brain to treat those Leukemia cells present at diagnosis. Yikes. Just the process of making the plaster mold and the screwing in of the head piece is almost more than I can bear at this point. I know tomorrow is a big first step to acclimating Brayden and I hope it goes well.

Thankfully, I've been so amazed at how Brayden is continuing to do well. He was a little pale, but thankfully his bloodwork looked okay. His counts have dropped again, but he's got a little room still. We were warned next week won't be fun. After not eating due to his procedure, he was eager to have breakfast when we returned to the hotel. I'm just stunned he's eating healthfully and not having the nausea like last time. Smells would send him over the edge before and it was so hard to see him go through all that he endured. We're just praying this trend continues. One more day down - one more day closer to completion of this nasty round!

Settling In

2009-11-22T22:46:00.004-06:00

Brayden and I had a busy day getting prepped for leaving for Little Rock. Dad was awesome to help make sure the car was ready and do some errands as well. All my lists and planning worked okay. We were sad to leave Dad but he has to work tomorrow and will join us later. A sweet friend brought some goodies for us from my sweet Circle of Friends for our trip! Everything from snacks, fruit, water, cheese, magazines, yuumy lotion and on! Even Hershey got some yummy treats! We are so thankful for that bright point of the day and some things to help our week here be a little better. It didn't take long for us to dig in to the goodies!!

In the meantime, we told Dad & Hershey bye before heading down the road. We had an AWESOME time of singing Christmas carols and watching one of our favorite Christmas movies, Elf. Well, Brayden watched...I listened to his giggles and reciting of lines from the movie!

I was super nervous about being in a hotel while his counts are lower. I can only hope tomorrow's update will show that they're still decent. I did a full cleaning when we got here and implemented some rules to keep Brayden as safe as possible from germs. It's so tough! I don't want to talk about how many Clorox wipes I went through or what they looked like after cleaning surface areas, light switches, door knobs, remotes, phones, and the list goes on! Thankfully Dad was able to keep Brayden preoccupied via phone while I cleaned away in the bathroom! I'm so thankful to my work for donating reward points that we can use for this visit this week. If we're going to have to be here this long, it really is a nice location and surrounding. It's a good test-run for what we'll be doing when Brayden's back for 10 days for radiation soon.

We've been a little bummed this evening. I was looking over Brayden's treatment protocol and hadn't realized he would be having another sedation with spinal lumbar puncture and chemo injection. Last week's was kind of rough for him. He's been so sore from them. We're definitely praying tomorrow's goes smoothly for him. He'll have another chemo dose of Cytarabine (Ara-C), but our bright side is hopefully he'll be done soon and we can come back here to the hotel and he can rest. Tuesday, Wednesday, and Thursday we'll be back in the Oncology Clinic at Children's getting the last doses of Ara-C and kiss this chemo med goodbye! One more down!!

My friend Linda put a great challenge out there: Remember to be thankful always, but especially this week. I've really been thankful for laughter today. A good laugh is amazing. Hearing Brayden's laugh? It's truly miraculous and I don't want to ever take that for granted.

Still chuggin'

2009-11-19T03:44:00.002-06:00

I've been SO amazed at Brayden this week. He has worked SO hard and thankfully has not had the amount of nausea as last time. We go again later today for chemo and we're still praying for protection from the harmful effects of chemo, nausea, and that his counts will hold. Sunday night we'll have to head back to Little Rock and will be there for the week. Each day, Monday thru Thursday, he'll get the final 4 doses of this nasty chemo that we'll be happy to be past - Ara-C. We're trying not to focus on not getting to spend Thanksgiving with our families or having to be traveling and in isolation. We definitely know we have so much to be thankful for in how Brayden continues to fight and respond to treatment.

He's been working so hard to keep up with his school work and not fall behind. He was such a trooper yesterday still joining in on the webcam for school. I know he loves getting to interract with his friends and can't wait to see them again in person. He worked hard last night to make up for what he missed while getting chemo and missing the afternoon session of school. We had so many concerns at the start of the year with cognitive effects from chemo and we're so glad to not see those increase or worsen as he continues with treatment.

The local clinic where he gets chemo does such a good job with him. The staff is incredible and so patient and goes out of their way to be sure he's safe and protected in a time where he has close to zero white blood cells to fight off any foreign germs or infections. I'm thankful for a place where he's able to get chemo when we would otherwise have to be in Little Rock for a while. Plus I know he loves getting to visit with all the nurses who always make him smile!

We thank each of you for your continued prayers for Brayden's protection from the effects of chemo. I've been working hard at home to ensure everything is as clean and sterile as it can be for him. There will definitely be challenges next week with being away from home, so we appreciate prayers for his protection during that time as well as travels. Remember to appreciate all that we have to be thankful for in this season of thanks!

Last Admit to Children's!

2009-11-17T08:51:00.003-06:00

We'll still be here every week (later monthly) at Children's in the Oncology Clinic for Brayden to get chemo for 3 years to come. But today marks a major milestone in his nearly 7 months of treatment. Last night was Brayden's last admission for Chemo, and we pray, the last time he'll have to stay in the hospital here! He got to go back to the dungeon (or the cave - Behave in the Cave?) and had the same room again. His sedation yesterday went well. Everyone noticed his lack of hair since last time, but JUST enough to do a tiny mohawk! He wasn't looking forward to yesterday. There were some tears that ripped my heart out. I just kept trying to help him focus on how this would be the last time he'd stay overnight, and he'll have a break from the spinals for a while that have really been causing a lot of back pain. He pushed through and did well.

The sedation dizzy medicine always gives Brayden a different type of reaction. Yesterday, it was a British accent while telling a knock-knock joke sweet Sedation Team Member Shannon had told him. You know the one - the old banana, banana, orange you glad I didn't say banana? He had a GOOD time of giggling with that one...and re-telling it over and over. Silly man. Thankfully, while sedated, they gave him the seasonal flu shot and H1N1 so he didn't have to feel them. His arm is sore, but that's to be expected. I was so glad they finally got enough in to give him his vaccination and will be a little less nervous.

Coming over to the unit to be admitted was an odd comfort. The sweet nurses and techs gave him hugs and hellos all around. He had a good dinner and we watched some cartoons after work was over. After the 2nd try, his kidneys were ready for the Cytoxin. But before, he jumped into my couch bed with me and celebrated with some popcorn he requested. Before I knew it, we were both snoozing so snuggly! He finally got his chemo at 10 and Ara-C with it as well. Thankfully, his stats through the night looked good. No fevers, thank goodness. The nurse just came in and told us he'll have Ara-C again at 11 and we should go home within a couple hours after that. I was glad he slept through all the interruptions through the night. I had to wake him up at 4 to use the restroom and he told me he was 'sleeping so peacefully.' Thank goodness.

He's very sore this morning from his procedure and, of course, could care less about food. I'm hoping and praying he'll have an uneventful ride home and the sickness won't be bad and he can continue to rest without fever. Dad's back at home waiting for us. Yesterday, after getting up at 3:30, we got stuck less than 5 miles from home in a wreck for over an hour with no way to pass. We were so thankful that we had just missed the wreck and that no one had been hurt in the one in front of us. We always pray for safe travels and we were definitely under protection yesterday and prayerfully, again today.

We've been praying for Hannah Grace for almost 2 months now since we first heard her story from a dear friend. She's also being treated her at ACH and needs your prayers. I have her link to her Caring Bridge site posted to the right. There are so many side effects to all of the chemo. What she's enduring is so scary. Brayden asks about her daily and has her on his prayer list on his school planner. Some days, I'm honestly scared for him to ask. We're hoping and praying for a miracle for her recovery. This morning, I was glad I had tissues close by after reading a poem her mom posted after seeing it from another site. So many families have shared this beautiful poem. I wish I knew who the author was...but we wanted to share with you. So poignant of what our real focus needs to be.

Once upon a special day in Heaven up above , the tiniest souls sat at God's feet, surrounded by His love. ‘The time is coming, very soon’, God said, ‘Do not be scared. Your family awaits your arrival, now let us get prepared’.

And so God looked upon these souls, in mute consideration. He knew the life each one would live, He weighed each situation.

The souls chatted amongst themselves, and wondered who they'd be. They knew the day grew closer; soon, they'd meet their family.

‘How would you like to change the world?’ God asked each soul in fun. The chance to change a soul, a heart, is held by only one.

‘I'm going to make the world laugh’, one soul said with a smile, ‘for laughter heals a broken heart, and helps us through each trial’.

‘Then take with you the brightest smile, and share your laughter well’. The soul thanked God immensely, and down to earth he fell.

‘And I'll remind the world to sing’, a sweet little soul told the Lord. ‘I have the gift of a beautiful voice; I can hit every note and every chord’.

‘You’ll have the gift of music then, a voice, lovely and strong. Share your gift with others, and let them hear your song’.

‘I will show compassion’, the next little soul raised her hand. ‘Some people only need a friend, someone to understand’.

‘Compassion is a good thing’, God said with much delight. ‘To you, I will give mercy. You'll perceive wrong from right’.

And so each soul shared every thought, their plans, their hopes, their dreams. And God explained that life, it is, much harder than it seems.

And as each soul began to leave in a scurry of laughter and fun, Heaven became quiet and still, for left was only one.

‘Come sit with me my little child’, God said with just a sigh. ‘Do you know how many you will touch, in a world left wondering why? Before your life comes to an end, you will know much strife, but you'll teach those who know you, to cherish the smallest things in life.

'And some may only know you through a simple photograph, they'll never hold you in their arms, or memorize your laugh. Some may only know you through the words they read each day, but you'll do something wonderful, you'll make them stop and pray’.

The tiniest soul raised her head up, to touch God's firm, strong hand. ‘Father, I am ready for the life that you have planned. And I will do the best I can without a word or deed. For you Lord, are the planter, and I will be your seed’.

She could already hear many praying, and although they had not seen her face, they were praying for her safe arrival, they were asking for mercy and grace.

‘What talent do I leave with Lord? What gift do you impart?’

‘All that you will need’, God said, ‘I've placed within your heart’. And so God kissed this tiny child, knowing all that she would be, and whispered as he watched her go...'You'll teach them . . . to love Me.'

Priceless Memories

2009-11-15T13:41:00.003-06:00

We had shared before how a dear friend had given us an incredible gift of a photo session to have our family pictures made. Even though I'm a crazy scrapbooker who's always taken up to hundreds of pics a month, we hadn't had family pictures professionally done since before Brayden was 2. I know...but when you have a tripod, I thought I'd do them myself! Little did I know what we were missing out on. We were very excited to meet Mindy and she went out of her way to work with us in a safe environment for Brayden. Even though Brayden was Neutropenic and losing his hair fast, it was that day or it would have to wait until January. We just felt such an urgency to get this done. So with masks, alcohol spray and distance between us and everyone else, we went to the local walking trail for a beautiful Saturday morning to get our pictures done. Mindy really captured some beautiful moments of us just being a family together.

After seeing some initial sneak peeks on her blog, we were overwhelmed. Then after seeing the final gallery Friday night, I was overcome with emotion. We may not always be able to afford to do this, but I'll be sure we do it as often as we can in the years to come. What an amazing opportunity and now we have no idea how we'll decide which pictures to get. For now, I can't stop looking at them. She's captured Brayden's innocence and his love, his caring heart for us and for Hershey and how he hugs with all that he has, his determination, (especially when throwing a football!) his love of nature, and our love for him. Truly amazing.

We wanted to share a few of those with you - thank you, Mindy! Be sure and check out her beautiful work! For now, I'll go back for another look and more tears of these priceless memories that you've created for our family!

And it continues

2009-11-14T00:03:00.002-06:00

The good news is Brayden's blood work results today shows he's not Neutropenic. I'm glad his counts are at least above 1,000 - but just barely. Once he starts this month of treatment, he can't stop. So the higher the better. We had been fretting the risk of not getting to celebrate Thanksgiving with our families. I was still hoping there might be a way. It turns out that it will be very unlikely we'll get to celebrate as planned this year.

Brayden and I will leave at 5am Monday morning for Little Rock. He'll be admitted for an aggressive round of chemo and we're hoping to go home Tuesday afternoon. He'll then get chemo locally Wed & Thurs. This is the round I've been dreading - the last aggressive round. This one makes him the sickest and is the one that's been the culprit of his previous blood and platelet transfusions. It's also the one that's caused him to be Neutropenic the longest, so it has long-term impacts. The following Monday the 23rd, we'll be back in Little Rock again for the last half of this chemo (Ara-C). He'll have it again locally Tues & Wed, then since the local clinic is closed, I'm guessing we'll be back in Little Rock on Thursday (Thanksgiving Day) for the final dose of it. Last time this one made him very sick for the entire 2 weeks.

We know the most important thing is getting Brayden complete with only healthy cells remaining and we'll be focused on that. Yes, we're so sad and disappointed but we'll try to make it as little of a deal for Brayden as we can. We'll just do something here maybe that weekend once he's feeling better to eat again. On the days we'll get chemo locally, it can be ugly. It's taken hours before to get him enough iv fluids and anti-nausea meds to help him tolerate and get the next dose of chemo. We can't get through these 2 weeks fast enough.

The next 2 weeks after all this we will be back in Little Rock for those Monday's. He'll get Vincristine (=IV push) and then his LAST and final Asparaginase shots in his legs. Radiation is after that. So again it becomes tricky for Christmas. I don't want to even think about that but my hope is his counts improve to where we can see everyone - but somehow not enough for him to get Radiation. I can dream, right? His counts will drop again after Radiation, which will be 2 weeks spent in Little Rock.

I hope all the details help to put it all in perspective and easier to understand for everyone what we're up against. Just like Halloween, we'll do what we can from home to celebrate with Brayden. We'll miss everyone at Thanksgiving and can't wait to get together again soon. For Christmas, I'll still be hoping for a miracle. We love everyone and are thankful for all the support and love and encouragement. We're getting closer in some ways and in others, it still seems like we're not to base camp yet on Mt. Everest. I'm clinging to the good stuff that the most aggressive chemo he's endured in this High-Risk protocol is ALMOST over!! So we'll keep finding the little steps to celebrate so keep moving us forward.

Bye, Bye bologna

2009-11-06T19:46:00.003-06:00

Nope. Remember I don't give bologna the spell check recognition it's insisting with the capital letter? We couldn't have just completed another month of steroids without talking about Brayden's beloved bologna again. Yes, he again had an affinity to bologna for this round. And 3am feedings, not sleeping through the night. We woke up yesterday morning so rested...then completely panicked! Was he okay? Why didn't he wake me up for the first time in over a week? It was so good to see him resting peacefully and find out later, yes, he really had slept through the night. He didn't have to take a pain pill the last 2 nights. And the final sign that we knew he was finally feeling better? He was playing football in the house again, diving in the floor, tackling, and laughing. It was the best kind of gift. It had been an incredibly tough week on everyone and so hard to see him in so much pain. It's been a complete 180 the past 2 days and we're so thankful. Hearing his laugh today has been...music to our ears.

We got Brayden's bloodwork done today and found out his counts are too low to have chemo on Monday. He's in the Neutropenic stage, so we'll have to be really careful and continue into the 5th week of Strict Isolation. Dad was great to rent a move for us tonight to enjoy. We have loved getting some fresh air and sunshine in this beautiful weather the past couple of days. And, with football again this weekend to enjoy between the Hogs and Cowboys, we'll keep busy.

We are SO excited about tomorrow. A dear friend gave us an incredible gift and paid to have family pictures taken for us. It's so special and something we've put off for far too long. We've had to reschedule once due to Brayden being so sick from chemo. I'm so glad we scheduled them for tomorrow. His sweet head is going to be bald (I'm guessing) by Monday. It's been falling out SO fast in the past few days. I'm nervous to touch it with gel tomorrow! It might all come out on the gel on my hands!! He's still taking it all in stride and I love that. He knows he's been grateful to have it for the past 6 months. It's still going to take some getting used to for all of us and each day he's looking different as it falls out. I've realized how much better his eyes shine! His sweet, blue eyes that are so full of joy today. It's been a great day.

So we'll try again next Friday to see if his counts are high enough to proceed. He's SUPER happy to have another week off. And, I'm a little thankful too because of starting the next round. Of course we're still nervous about germs and none of us having the flu vaccine yet. But we've done well so far! Brayden's focused on Christmas plans. Thanksgiving is looking very tricky for us, as he'll most likely still be in isolation. Meanwhile, he's looking at every catalog and commercial with big eyes while planning his Christmas list. I guess he's still 9 and a normal boy afterall!

Let's see...

2009-11-02T11:58:00.005-06:00

A lot has been going on since my last update. We've been busy with sleeplessness, waking up at 3am almost every night, lots of steroids thus lots of snacks, and pain. Unfortunately, Brayden has been in a lot of pain the last 10 days but the worst of it since last Wednesday. He finally gave in and took a pain pill 2 nights in a row at bed time and it really helped him to get some rest. He's still hurting all day in random places. His spine is hurting a lot and he's pointing exactly to the area where his Spinal LP chemo is done. Poor guy. It's been so hard seeing him like this. I was so thankful he gave in to the pain pill, but I know how bad it must have been if he relented. He's not taken them many times before. It was literally making me nauseated to see him hurting so much and be so powerless to help him. He told me today he "feels like an old man inside a young person". Ugh...what do I say to that? It is such a helpless feeling to know what to do to help him.

Remember his streak about no naps in the 6 months? It's broken. He's napped every day from Friday on. It's been so unlike him. I know it's good for him to rest and get good sleep and the steroids side effects aren't helping that. But it's been tough not seeing his energetic self lately. He's dragging a lot has very small spurts of energy that dissipate way too quickly.

The last two days he's told me he's lost handfuls of hair in the shower. Sure enough, his towel after his shower this morning was just full of hair. We're wondering if he'll still have his hair before he gets to radiation. He knows he's been so lucky to have it this long and commented again this morning how long he's had it. It still rips at my heart to see those clumps and wonder how hard it's going to be to see him without hair. With his hair, you can almost 'get by' without seeing the effects of cancer on him 24/7. Without his hair, there's no hiding it. The emotions of it, the effects of it and the constant reminder of this awful disease is staring at you. There's also no hiding it when we're out in public either in the future. So we're preparing him for that since that's been so hard on him in the past to worry about.

Halloween went okay. I had planned a mini carnvial here at home since he was still in strict isolation from his Dr. We baked some crazy cookies and decorated some monster cupcakes, which is a tradition. The highlight of the night was definitely getting to see his cousins on the webcam and show off his Captain Rex Star Wars costume. He was not himself all day. I tried convincing him to wear his costume more, but he just wasn't into it. Thankfully he had fun doing the carnival and we did a little craft. He was sad not to get to hand out candy and sad that he couldn't be with his cousins like we do every year. So we tried...it just wasn't the same.

I had a big mix-up with his treatment schedule and we were all so relieved to hear from his Nurse C Friday afternoon that this week is an off week! To not have to make that trip this morning was a big relief but most of all, relieved to know Brayden can have a small break. We'll get his counts locally this Friday and find out for sure if we return Monday the 9th for the 2 weeks of chemo I've been the most nervous about. For now, we had a BIG celebration last night that he took his last dose of steroids that he'll have to take for about a month. The effects will still be in place this week for his system, but just knowing we were 1 step closer was very exciting and reason to celebrate.

This week, please join us in praying for relief for Brayden from all the pain he's been having. He's having a lot of trouble walking this week, pain in his upper legs (most likely from the chemo shots,) pain in his spine, and was scaring me yesterday hearing him complain of pain in his hands. The Neuropathy he's been taking medication for since Month 2 can effect other parts of his body and this has concerned me for a while. This is an effect from the chemo med he gets most often. We pray it won't worsen or spread to other areas of his body and the medicine would continue to work. We're praying for peace. He's had a lot more emotional ups and downs this week but hearing his fears about the diagnosis in some very negative views for the first time was so heart-wrenching! I'm glad he's talking about it. It just pushes my heart past the breaking point sometimes hearing your baby in so much heartbreak and pain and calming in him the same fears we have daily. We're praying for rest for his body this week and recovery and strength before heading into the next phase of treatment. Thank you all for the support you provide our family in persevering through this journey...