Whom Shall I Fear

Chris Tomlin was being interviewed Thursday morning by our local radio station. His message & story behind this song stopped me in my tracks. With so much fear & stress & worry for Brayden's tests on Monday, this brought tears to my eyes with a wonderful & much-needed reminder. Here are the lyrics....It hasn't been released yet (November). But my sweet Momma sent me a link to listen & see the lyrics here. Click CHRIS TOMLIN's WHOM SHALL I FEAR...

Verse 1: You hear me when I call You are my morning song Though darkness fills the night It cannot hide the light Whom shall I fear

Verse 2: You crush the enemy Underneath my feet You are my Sword and Shield Though trouble lingers still Whom shall I fear

Chorus: I know Who goes before me I know Who stands behind The God of angel armies Is always on my side The One who reigns forever He is a Friend of mine The God of angel armies Is always by my side

Verse 3: My strength is in Your name For You alone can save You will deliver me Yours is the victory

Chorus: I know Who goes before me I know Who stands behind The God of angel armies Is always on my side The One who reigns forever He is a Friend of mine The God of angel armies Is always by my side Whom shall I fear Whom shall I fear

Bridge: And nothing formed against me shall stand You hold the whole world in Your hands I’m holding onto Your promises You are faithful You are faithful You are faithful

Chorus: I know Who goes before me I know Who stands behind The God of angel armies Is always on my side The One who reigns forever He is a Friend of mine The God of angel armies Is always by my side

Prayers & update

We definitely felt bathed in prayers yesterday evening. It was such a different atmosphere for our little family than the night before. We're so grateful and appreciative for all the prayerful support. I've said it again and again since Brayden's diagnosis....there's no question God has held us many, many times when it seemed too difficult to make it through on our own. I can't imagine Brayden having to face all that he has without the foundation of faith and the same is true for us as parents. We each felt God's peace so strongly last night and instead of being overwhelmed by fear & uncertainty, we were able to be peacefully at rest. Being able to talk about things with my husband without breaking down was a huge step! We're trying to plan for Monday without planning for the worst and that's a challenge. There's still the worry there, no doubt. It's almost harder now because we're not as naive about it all. Before, we didn't know what we didn't know. Now, we know more than we wish we did about the awful effects and stories from other parents about relapse. We're just praying everything's okay. Honestly though...to be completely, brutally honest - it's an awful time for us. We're trying our best to be strong for Brayden but Bryan & I aren't doing so well. We're trying not to crack. The stress, fear, worry is almost overwhelming. Bryan & I are both so anxiety-ridden, it's insane. We're both trying to be positive. I'm scared for Brayden and our hearts keep breaking for him. Since his one request for this week was to see his cousins, we pulled together some fun family things that hopefully he'll be up for. We're trying to do some of his fun things at night & this weekend before Monday. Being a planner, I don't want to not plan but it's hard not to go there prepared yet planning for the worst is really what that would mean. So we're hoping with family fun & some good times for Brayden combined with a normal day tomorrow at school will help encourage him.

Please pray....

Please forgive the length of this message....I am not good with brevity! But I hoped having more details will allow each of you to know how to pray & understand Brayden's needs. I think you all know of Brayden's 3 1/2 year battle with a rare form of Leukemia. He's persevered & had so much resilience and fought with such grace & love for God being prayerful & steadfast in faith. We couldn't be prouder of him! Shortly after his last chemo in August, we were sent to a specialist for his kidneys. We've been battling that in prayer as well. Yesterday was ANOTHER trip. We were overjoyed after the 3rd round of tests this time yesterday, the Urology specialist has determined Brayden won't need surgery on his kidneys! He will still have to be monitored closely but we were praising God for his right kidney function to still be there and not to have to put Brayden through any more pain. That news was quickly overshadowed when we went to see his Oncologist. Brayden has struggled since his last treatment with the lasting effects of chemo & radiation for those 40 months with his legs & other effects he works to shield others from. But we've been growing in our concern & worry about his headaches, nosebleeds, & suddenly last week....bruising. For a family who's been toe to toe battling this monster, those are things that send fear through you no matter your strength of faith. His Oncologist shared with us his concern in some "abnormalities" in Brayden's blood work results from yesterday. He was very cautious & tentative with his words in front of Brayden and has always been positive with us. It took everything we had to hold it together in that room & be strong for Brayden. Just hearing that his Oncologist was 'concerned' knocked the wind out of us. We go back to all we know...to pray & ask for prayers. So many (more than we even know) have stood in the gap for us & for our family in prayer the last 40+ months. We know there are so many that have a special place in their hearts for Brayden. We just ask again that you join us in prayer for Brayden. We have to return next Monday to ACH for a battery of tests - the same ones that first confirmed his diagnosis 3 1/2 years ago. Brayden is keenly aware of what this could mean....we just celebrated having his last of these tests in August & didn't think we'd have to have these again so soon. Next Monday at Arkansas Children's Hospital, his Oncologist will perform a chest x-ray, sinus x-ray, bone marrow aspirate, and spinal sedation to check his spinal fluid (brain cells) to see if there are any relapsing Leukemia cells. It's hard to even type the word 'relapse.' I've been too scared to say it, much less type it, since April 2009. It's every parents nightmare for their child who has battled this. The drive home was very difficult. We were trying to hold it together & be strong & be faithful for his healing, as we've always been. I keep telling God, just about the time I think I've learned the lesson of how to put ALL my faith & trust in you, I realize I'm still a baby at this concept. I guess as a parent, I don't know how Abraham ever did it! To lay our child at the feet of Jesus is more than I'm able to do! Our love for them is so great & I know they are never ours - God's only given them to us for a time. But it's breaking this Momma's heart.... I'm not sure what the rest of the week will bring since he had a really rough night. I want him to have normalcy. But we are gathering family & trying to find a couple of special things to do before Monday. I don't want to even type out what all of this will mean but those tests all have to come back good! No trace of Leukemia blasts, all healthy & normal cells, no irregularities in his lungs, chest, brain. I've been up most of the night praying over him & we just ask others believe with us & join us in prayer for Brayden's complete & total healing! He's been through so much already...we JUST heard from Make-A-Wish a few hours ago about his wish coming true....he doesn't know it yet. We really want him to be able to just have fun & not have to worry about his health for once and just be a kid. In His Love, Lisa

Golf for ACH

What a day!! I'm so grateful to work for companies that have always been such generous sponsors for Will Golf 4 Kids. Even before Brayden's diagnosis, it was our favorite event of the year. After his diagnosis, the reality of all that ACH does hit closer to home than I ever imagined. Suddenly the participation in the Will Golf 4 Kids golf event & Color of Hope Gala showed me first-hand all the good that comes from the generous donations of our community.

Our last visit to ACH was so impressive to see the new South Wing AND the highly anticipated Oncology Clinic! It's sad to think how much ACH had outgrown the old Oncology Clinic....and how sad it is that means more kiddos with cancer diagnosis needing their help. But the amazing volunteers and generous suppliers & donors last year contributed for the Oncology Clinic and living, breathing, seeing those donations at Brayden's last chemo treatment & procedures was inspiring. I wish everyone could see & witness this without the diagnosis that goes with it. We're so thankful for more space for the families to sit. Many times our monthly trips to ACH are more than 6 hours long (not including drive time). It breaks our hearts when sometimes walking into the old clinic there weren't any chairs. That's not good to make the correlation why it's so full. The fresh breath that the new waiting room along brought was so neat! Brayden couldn't try out the chairs before wanting to go outside & see the garden. It's beautiful and a fresh start & such a blessing for the families. We're SO grateful for this awesome facility and all the good it is doing for all the kiddos battling cancer, their families & the incredible staff! Thank you to all who helped make this possible!!

So to the golf!!!!! Today was the 19th annual Will Golf 4 Kids event. WOW! We were so thankful to get to golf as a family. Brayden just kept saying that if he gets to play next year, he'll be almost a year without chemo! We got there very early & were so blessed with a break in this awful heat & some cooler, beautiful weather to start the morning. It was so wonderful to see so many familiar faces from last year's event when Brayden was the Champion Child. There are MANY ACH workers that spend an enormous amount of time & work to make this event happen. The local volunteers & organizers never cease to amaze me to put together such an amazing event. We had such a great time getting to golf & Brayden did amazing! His stamina was still a little low & he's pretty sore tonight, but it's a good kind of sore and a good pain to have. He'll push every time to play golf because he just loves it so much & it's such a great opportunity he doesn't want to pass up!

Here are a few pictures from today! We're excited tomorrow to attend the Color of Hope gala, only this year, as participants and cheer on the new Champion Family. Brayden said this year he won't be so nervous so he'll be able to eat this time! Bless his heart! We were all so nervous last year to get up in front of that big group that none of us really ate anything! This is such a wonderful event & we can't wait to attend and again celebrate how far Brayden has come & how much we love ACH & all they've done for our family. PS - some of the wonderful volunteers there today took a pic of Brayden & uploaded it to their facebook account. Brayden's pics got more likes than any other post! How neat is that!?!?!? Check it out by clicking here! Happy 100th Birthday, ACH!

1 Week to Go!

It doesn't seem possible Brayden is SO CLOSE to being done with chemo after nearly 40 months!!! We weren't counting down so much in the early days to end of treatment. But since 2012 rolled around, it's seemed so much more tangible! He's been planning his last night of chemo for a while. He wants to stay up all night & have all his favorite foods & do crazy experiments with his pills. We've since had to be sure it's safe to do said experiments! But it's so hard to fathom we're really at the finish line. Brayden has been counting down all his 'lasts' in treatment & Dad started a countdown calendar a while back and we're just in disbelief it's here. Friday, August 17th will be his last nightly dose of chemo. No more counting pills, setting the alarm, stopping eating at a certain time & being sure we give him his chemo at the right time, not touching the pills & waking up with worry of "Did we forget to give him his chemo?" That's almost 1200 nights of that worry....now behind us. Isn't that crazy to wrap your head around? Or is it just me?

It's going to be so hard to say goodbye to Highland's, the local Oncology clinic. The staff has become our family & has taken such good care of Brayden. After the first year of treatment, we saw them more than the staff at ACH! Each Monday we were there with him excited to see the nurses and that diminishing the reality he was there to have his chemo treatments & the impact it always brought Monday nights & Tuesday's. ACH trips were every 4th week....Highland's every week. We're not going to know what to do with ourselves those Monday afternoons. We're going to miss all those sweet, smiling faces knowing Brayden's name & he couldn't wait to visit with & update them on the latest activities in the Jones family. All those hugs & teasing with his favorite nurses....it's bittersweet now to be at the end. We'll obviously have to find reasons to go up & say hi & keep in touch to the amazing Nurses & staff that have done so much to keep Brayden safe & healthy (no port infections!) and paving the way to his battle against Leukemia with all the chemo treatments & blood checks & holding our breath on counts each Monday. We are SO going to miss all of them!!

Brayden's had a rough 10 days battling some serious congestion & Mom & Dad praying it didn't turn into pneumonia. We sure are hoping he can kick this last bit & his counts rebound strong so his immune system can return to normal. There's so much more to pray for in the coming days & weeks that I'll share soon. For now....only 6 more days!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

We're Baaaaaack!

I'm heartsick I've gotten so behind in posting Brayden's journey updates. We've had some tougher times and it began to be so difficult to be honest with our fears and concerns for Brayden. That's melting away a bit as we're counting down!! 2 weeks from yesterday marks his last chemo! It's so surreal for all of us! In the beginning, it was too hard & painful to think about August 2012 when he would be done that we had to stay focused on the present back in April 2009. Now, somehow, we're here. God's had His hand of protection all the way over Brayden, as he again and again has overcome so much adversity with such a daunting diagnosis.

As we've gotten closer, we've started making more plans & talking more about the last chemo! We're planning an End of Treatment Celebration for him coming up to reflect on all that he has endured & appreciating all of you for all the prayers, love & support! It's incredible to imagine being able to celebrate such a remarkable journey & yet, it's almost here!

We've had some major milestones lately. 2 weeks ago today, Brayden had his LAST vincristine (his monthly chemo), his last spinal sedation (intrathecal chemo to treat the cells in his brain) AND his last bone marrow!! Brayden did SO well! Even with the additional procedure of the bone marrow, the sedation went better than the last few for him! He came out of the sedation well & needed less medicine! We had been holding our breath for this last bone marrow for a while. This would tell us if the Maintenance Phase of chemo had been successful. We were full of disbelief in this anti-climactic moment when we were told his bone marrow was CLEAR! I was wanting to laugh & cry all at the same time & yet kept waiting for balloons to drop from the ceiling! We just looked at each other & did some high-fives & kept repeating the news to each other all the way to the car...trying to make it more real for each of us. This is really it! What we've been hoping & praying for!!!!!!!

So we're in the final days. Brayden's scaring me lately with a nasty cough & hoping it dries up quickly. But we're down to 13 days! Brayden doesn't want to do anything but stay up all night & celebrate his last night of chemo! He's been making a lot of plans for that big night.

As a family, we're extremely nervous about the unknowns that come after chemo. Brayden's neuropathy in his legs will begin to change as his nerve endings damaged by the chemo will begin to regrow & can be very painful. Then his blood work will continue at Children's every 4 weeks. That weekly bloodwork won't be any longer. I can't imagine holding my breath for 4 weeks in between tests! We've heard from other families this can be extremely challenging. Every bruise, every cough, every headache will bring up fears for every family that's been through what Brayden's diagnosis has brought. We'll continue to be challenged with not being led by fear & putting our trust in the One who can continue to carry us through so much uncertainty.

BUT FOR NOW----celebrating the fun & bringing you up to date!

Brayden's Last Spinal, Last Bone Marrow - LAST ACH CHEMO!! July 23, 2012

Brayden's 12th Birthday - March 2012

Brayden's 3-year Celebration since diagnosis with Golf! - April 22, 2012

Brayden Making His Wish! May 7, 2012

American Cancer Society Relay for Life - 3 more Birthday's! June 15, 2012

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.

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!

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!

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.

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 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

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 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

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!

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

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

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

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!

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!