Jones Family

Jones Family
November 2009

Friday, June 19, 2009

4th Grade Bound!

It's getting more challenging to post frequent updates! I'm taking a quick lunch break to share the great news with everyone. We have had a great week. Brayden's had a couple of challenges with nausea, but nothing as bad as a few weeks ago. This week in Clinic in Little Rock we found out (wow) his counts are still good! His Dr. said he is doing amazing and said Brayden is doing really well. His nurse hadn't planned for him to be able to continue treatment next week thinking his counts would have dropped. We liked hearing her say, "Can he not do anything by the book?!?!" I guess that shows he is doing well! So he had some nausea before we could get his Zofran going in clinic. COE: Dad will not bring coffee into the room again before Brayden has had his iv started. Nice. ANYWAY, his spinal sedation went well again. We're glad this will be his last one for a bit after having them back to back for 7 straight weeks. His sedation nurse is truly the best, so even though we're glad he won't have to have one, we're going to miss seeing her sweet smile each week and how much she adores Brayden and how great she takes care of him. He's uncomfortable sometimes on the drive home after his procedure, but he never complains unless we hit a bump or rough patch in the road. I think by now Bryan has memorized those spots in the road since we've made this drive so many times!!! We've figured out to order his food early (didn't know we could order him food while in clinic til this past week!) and have it ready after he comes out of sedation. It gives his blood sugar a chance to normalize quicker and he did better this week. So well, in fact, we decided to surprise our family. We got to take a trip on the way home to see Grandma Sue & Papa Bob! These are truly the most special people in my life and my Grandma is my soul-twin, I swear. She has been my rock throughout my life and if I can strive to be a fraction of the person she is, I will surpass being the best person I can be. She is truly amazing and loves beyond measure or understanding. She's home to me when I get to be with her or talk to her. So to get to have even just 2 hours with them was so amazing. I think getting to see how good Brayden looks was good for them too. We had fun just sitting out in the yard under the trees I remember when I was Brayden's age. It's more than peaceful to be there. Brayden loved getting to play in the dirt and with the trees, play with the dogs, pet the horse, and mom had fun dishing out the Germ-X but trying to relax and let him have fun being a boy for a few hours. We LOVE Papa's garden (yummy cucumbers!) and hearing Brayden ask him to teach him to shoot a gun (AH!). Brayden is so blessed to have them in his life and be surrounded with their love. Thanks, Grandma for the sherbet and the time to get to see you!!
We were thankful to get to swing through and surprise Bryan's family. They are family to me too and are what I have always dreamed for a family to have the privilege of marrying into. They are the best support for Brayden and I'm so glad they are in his life. Nini Sue, Papa G, Aunt Kimmie all were so happy to see Brayden. He was too busy loving on cousin Kynnli whom he ADORES and can't get enough of! He was so excited to see extended Church family who were there and have been praying for him and sending notes of encouragement and support. It did Brayden so much good to be encouraged and uplifted with all of that love for those 4 hours. Sure, it made getting home extra late, and made mom stress a little with all the people, but we got cleaned up and changed clothes before heading home and bathed in some more Germ-X and so far, so good! We were all thankful for that special time with everyone.
We found out what the future holds for Brayden's treatment plan details. I asked his Dr. that aside from the nausea, Brayden's energy level has been so high and it seems like he's doing really well. He said this block of treatment should be the hardest and we're just praying Brayden's strength continues and that he can get through it and be ready for easier days. He told us because Brayden is so tall for his age and is a bigger kid than the average new 9-yr-old (duh) his treatment protocol and doses are as though they were treating a teenager. I'm still amazed even with that, his body is fighting so hard and he's doing so well. I just pray that continues. We start the Cytoxin and Ara-C (the ugly ones) next Monday and if his counts are good still, will be admitted overnight. He will have surgery on Monday afternoon to have his port put in. They will give it time to heal before using, then his PICC line will be removed. After that, he can swim!! We were so happy to hear that! Maybe if his counts stay high, he can enjoy a little bit of summer...with spf 70! He'll have 1 dose of radiation in 3-4 weeks (again, count dependent). He will have 1/3 of the dose in 8-day fragments. So we will have to spend 11 days in Little Rock during those treatments. We're thankful it's only one time we'll have to do this. Beyond that, barring no secondary infections or concerns with his counts, we keep trudging through the treatments each week.
We were so blessed to have a visit from Brayden's teacher on Monday afternoon. Check out her shirt! A dad of one of Brayden's classmates brought these in and all the kiddos wore them the last day of school to their Awards Assembly! Watching the dvd of the assembly had us all in tears. The support we have received is overwhelming from this school. Mrs. McCall is truly a treasure; the type of teacher you realize still exists with her and other teachers at ACA. She finds it a blessing and a joy to teach and you can see it in her. We were so excited to have her present Brayden with his award and his report card...2 percentage points from being on the A/B Honor Roll! AWESOME!! I'm so proud of how hard he worked after his diagnosis and missing 3 weeks of work in pushing to get caught up and working so hard for all the time it took. He was so happy to hear he gets to go to 4th grade! After talking Mrs. McCall's ear off, Brayden was so pumped about the Team Brayden shirts and I will post what the back of them say and share more about the Awards Assembly when I have more time.

We enjoyed celebrating Brayden's big accomplishment. I baked him a big cake and we were so happy that Nini, Aunt Stephanie, Zach, Caleb & Ally got to celebrate with us that night on Brayden's accomplishments. He certainly deserves to celebrate all that he's persevered and succeeded!!

We're taking it easy and getting ready for Father's Day weekend. Thank you again to all of you for your support. I'll work to post again this weekend with more details, but we're so thankful for all the blessings of Brayden's progress.

1 comment:

  1. I love the Team Brayden Shirts! Congrats to Brayden! 4th grade seems like such a big move!
    Good luck getting your will be so easy!