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!