Jones Family

Jones Family
November 2009

Friday, May 22, 2009

Brayden's Best News So Far

Brayden's helping me with the title because, I have no words. Bryan and I are overwhelmed. Not hearing from the Dr. yesterday was nearly driving us nuts. But I kept going back to my new favorite word: Surrender. Remember it's not an easy one for me who white knuckles every situation and makes the word "control freak" look minor. But I kept going back to that word and just tried to let it go (that's for you, Danny). It wasn't easy; I'm not saying it was. But it was certainly another lesson for me; for us. We gave in and emailed his nurse today and were told our calm during the storm Dr. was NOT happy about the delay in receiving the test results from the MRD measurement. This test isn't standard. I guess I didn't do a good job explaining that before. In Brayden's case, he requested a favor from one of the Dr.'s who is advancing the field of MRD testing to do Brayden's test. This was to ensure with Brayden's aggressive form, that he took the accurate treatment protocol and didn't rely on old standards of measurement with testing thousands of cells and counting. This method tested, counted, and grouped together Brayden's cells in groupings of millions to accurately classify which percent of cells were still leukemia blasts in his bone marrow. In his words, we only had 'one shot' at getting the treatment protocol right. He didn't want to throw in the experimental drug and aggressive treatment if Brayden's counts were low enough and did require it and increase his toxicity. And for the adverse, he didn't want to NOT be aggressive enough and increase Brayden's chances for relapse. So we're thankful to have been able to have this test performed and FINALLY get a call back this afternoon. Brayden and I screamed and jumped up and down after his Dr. called. They did the MRD test two different ways just to be sure and Brayden's counts are in fact less than 0.1%, which is the magical number we were hoping for!!!!! This officially declares Brayden in COMPLETE AND TOTAL REMISSION!! Yes, it's still dormant and again, we pray it stays that way. But this is the best news we could EVER hope to receive! Our hearts are overflowing with thanksgiving and we have been again giving praise to where it's due!
So Brayden will still have to be treated with the High-Risk Aggressive Treatment, but NOT with the experimental drug that would have required weekly 3-4 day hospital visits as well as a long-term catheter and 48 pages of side effects. This would have been so toxic and taxing on his system during a treatment that will be difficult enough on his little body.
Next week we go back Tuesday for the full body CT scan and then treatment begins Wednesday. From there, we'll know more about the timing of this next block of treatment. We know the drugs and treatment protocol, we just don't know specific timing and duration of the first block yet. Please keep Brayden in your prayers. This is when the hill gets steeper in this phase of his journey. We've been warned his energy levels (that have been amazing!) will diminish. The poundages the steroid clones helped him pack on will come in handy as his appetite diminishes. He will lose his hair in this phase as the drugs they introduced to his body in Phase 1 Induction are elevated drastically now that they've proven his body could handle it and the Leukemia cells diminished...almost disappearing! Radiation will be forthcoming for his brain and leukemia cells found in his spinal fluid and we know that will be so hard for him. His spinal fluid has been clear since Day 15, but because it was found at all in that Stage 2 Intermediate phase at Day 1, then they have to treat it in this manner, as is the protocol. The cells have a tendency to hide and reappear after treatment in the brain in leukemia patients and this treatment protocol is standard and proven to help reduce his risk of relapse of those cells in his brain. They treat his body separately for those cells than they do in the brain. Additionally, we're praying again that his good cells stay strong, his body stays strong, no secondary infections, and he can get through this phase still being his sweet self and strong to fight.
The last 48 hours have been amazing. This little reprieve for us before the next phase begins is such a blessing. With the steroids almost out of his system, my old sweet boy is showering me with affection and reassurance and I'm soaking it all in to sustain me through the next rough phase that I don't know how will change him. Our prayer is that it won't. This is such a gift to a mom that I'm treasuring. His calm spirit is back, his humor is in full force! We've laughed more today than we have in the past 4 weeks. And we continue to be thankful for those blessings we have...focusing on the blessings and remembering to surrender, soaking in each second together.
From Brayden: "Everybody, thanks for praying for me. My favorite part of today was getting to know that I was in recovery. We had a big ol' barbecue tonight because we were celebrating my remission. It was really great; we enjoyed having my favorites of turkey dogs, turkey burgers, Cheetos and some potato salad. I'm really liking school here at the house and I know my friends from school are missing me, but I'll see 'em soon. I'm loving that I'm not having to take 24 pills now. The trip to Little Rock was fun; I really enjoyed it. Um, I'll see you guys soon."


  1. I am jumping for joy too. I can't say enough how thrilled I am that you got good news. Brayden - you are so strong and I had NO DOUBTS but it was great to have the doctor tell us what we already knew.

    I hope you have a good weekend!

  2. Oh Brayden,
    I am so excited! God is sooooooooooooo Good! I LOVE to see prayers work! As we say at ACA, "Go God, Go!"
    Luv, Mrs. Golaway

  3. My grandparents in St. Louis have been praying for you!We've been praying too!We miss you here at school! I enjoyed talking talking to you on the phone. It makes me very happy that you are in remission. I hope that you come back to school soon. Love, Erin

  4. Hey Bray papa is so happy about this news!!!

  5. Yay Brayden! I just happened upon your blog and wanted to let you know that I am praying for you from Washington State. Stay strong little man! I know that God has great things in store for you! Keep the faith!

  6. Brayden what a wonderful son you are! I love reading your post and seeing the great progress that you are making.
    Your recent news is so very awesome and it comes from love and the wonderful attitude you have had on your journey.
    Your a hero and I can't wait to met you!
    God bless -- Robin S.