Jones Family

Jones Family
November 2009

Monday, September 26, 2011

September...Childhood Cancer Awareness Month

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.

Friday, September 16, 2011

My little golfer

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!

Thursday, September 15, 2011

6th Grade

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!

Tuesday, September 13, 2011

Brayden's Video

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

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.

Thursday, August 11, 2011

843 days in...366 days to go

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 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

Sunday, June 19, 2011

Brayden & Relay for Life

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!!

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

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!

Monday, June 13, 2011

Brayden's Relay for Life & Survivor Dinner

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!

Friday, June 10, 2011

The Power Team!

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!

Thursday, June 9, 2011

Radio Rockstar Brayden

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!

Wednesday, June 8, 2011

Relay for Life for Brayden

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!!!

Wednesday, March 30, 2011

Birthday Celebration Continued

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!

Monday, March 28, 2011

Happy 11th Birthday, Brayden!

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!

Friday, March 25, 2011

Good News!

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!

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...

Monday, March 21, 2011

Birthday Month!

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.

Tuesday, February 1, 2011

Spring or Winter?

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. 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!!

Wednesday, January 19, 2011

Steroid Week = Stare-a-DROID week

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...

Wednesday, January 12, 2011

No Snow Days for Chemo

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!!!!!!!!!!