Jones Family

Jones Family
November 2009

Wednesday, December 16, 2009

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

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

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

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

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

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

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


  1. Lisa and Brayden, you are both so strong AND tomorrow is FRIDAY! TGIF!!! I'm glad you liked the pictures to help you visualize being at the blood drive. Praying for your last day to be easy to get in and out of radiation and headed back home in good time.
    Love you guys!!!