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.