Jones Family

Jones Family
November 2009

Thursday, May 21, 2009

Praise report!

I know...I know. We got home not long ago and it was either get dinner done and keep the steroid clones satisfied or suffer the consequences of a dinnertime delay. We wouldn't want that...So now that they are satisfied, I can pass along the good news!

Brayden's bone marrow showed less than 1% blast under the first glance, which means Remission. This is what we were so hoping and praying to hear! Brayden had a long, rough day of not getting to eat, so we were up bright and early at 5:30 for breakfast. I'm not even going to repeat what those clones put away for breakfast. Let's say we are SO HAPPY the last steroid dose was Tuesday night and should be clear of his system in a few more days. WOOHOO!! They cause crazy mood swings and irritability. Although, I don't think I've ever bothered to elaborate on that. We know it's an effect of the medicine, but having the old Brayden back the last 24 hrs is a gift in itself!

He's been in a lot of pain the last few days, that's why I hadn't posted an update. It's been emotionally draining for me and for Bryan. Seeing your baby in pain is more than we could take at times and his pain medicine wasn't cutting it. Finally we found out this is a side effect of the treatment called Peripheral Neuropathy. Basically it's hurting his extremeties and causing a lot of pain as a side effect of the chemo. It was so bad at one point, 2 pain pills didn't touch it and none of us got any sleep that night. It was starting to affect his walking. We're praying the new medicine will help counter those effects and it seems to be already helping him with the pain of feeling the nerve endings in his legs.

Regarding his spinal, (lumbar puncture), it came back clear again. It was actually kind of surreal because they took him back to the PICU for the procedures because of how busy they were yesterday in just having a room. Walking back there where we had been just 4 short weeks ago brought it all flooding back again. He's had to endure so much in such a short time. So, he had another round of chemo. His blood was still clear of the leukemia blasts and we were happy to hear he's producing healthy little red blood cells and his own platelettes which is a good sign! WOW! We know this is a short-term thing, but very exciting as it helped raise him out of the Neutronpenic stage. He's still in isolation, but we're not as nervous as we were. We have to keep him healthy for Phase 2 treatment which starts next week.

We did learn Brayden is definitely high-risk due to the response time of the chemo to lower the blasts in his bone marrow. We were amazed to learn there is only 1 other patient his Dr. is currently treating for the same diagnosis and only 10 kiddos in AR have this...only 3,000 worldwide anually are diagnosed. So it's rare, we just didn't grasp how rare. Since he's high risk, his occurrence for relapse is high, so his Dr. said we've really got one shot to get this with the treatment plan. As of now, we still haven't heard from the Dr. on the MRD (minimal residual disease) count to know how aggressive his treatment protocol will be. This test will measure and count millions of his cells and indicate if Brayden has to have the higher toxic experimental drug added to the chemo treatment protocol. This is the one I mentioned has side effects 40 pages long. Still praying on this one...

The other piece of good news is pretty amazing. They did another Chest X-Ray. His Dr. came in with two copies for Brayden (see pictures below). He said, "Here's one, 4 weeks ago, not compatible with life. Here's one that's normal." Wow...we were speechless hearing "not compatible with life." That was heavy...and miraculous. And it reminds us how big the miracle is that his lungs suffered no damage and his internal organs were fine after being pushed and moved around to make room for the massive death star (tumor). Seeing those before shots reminded me that night in the ER when I saw the same pic and the technician's face and knew something bad was wrong. Why couldn't we see his ribs? Well, the 6 in tumor is in the front and the right side of the pic is his left side that's filled with fluid and a picture of a boy 4 days away from another journey and filled with cancer cells. How amazing the change! We learned he will have a full body CT Scan next Tuesday to double-check that it's totally gone and get a read on his other organs before we start the aggressive chemo. We'll have to watch for impacts of it and other side effects so this will be another before picture we hope doesn't decline.

Before on 4/21/09

Brayden's named "Death Star" aka the Mediastinal Mass Tumor

After on 5/20/09

Back to Remission...we've learned this is a word that he'll never fully have like other types of cancers. Leukemia really never goes away and it's something he'll carry with him for the rest of his life. We just pray it stays dormant. So even though this is good news, it's not the end of the journey yet. We're glad he's gained some weight to help sustain him through the next phase where we've been told he'll sleep more, have less energy, and be less likely to eat. We think this phase of treatment will be 6 months, so we've still got a long road ahead. Treatment will continue for another 2-3 yrs but we're thankful again for the early miracles and progress.

The highlight of the day was certainly getting to stay in a hotel! Isolation isn't easy on the warm days on a 9-yr old boy! He was also pumped to get to eat outside food! Then...American Idol! Brayden was a fan of both finalists but told me he hoped Kris would win.

We're still praying for Sam. I need to get permission to post more details for his family, but just keep holding him up in prayer. He did come through surgery and they're still learning more about the road ahead for him. We're hoping we can help support them somehow, even though all this is still very raw for us as well.

Today was a beautiful day. We've got a breather for a few days with no steroids (bye, bye clones!) and no 24 pills to take. Still some maintenance things, but we can handle that! We'll know more about his surgery to place his port and eventually remove his PICC line. For today, we just enjoyed the day and (minus the mask and Germ-X and concern from mom) it almost felt like a pre-Memorial Day vacation mini getaway today with being in a hotel. We haven't forgotten how far the journey is in front of us. We are so thankful for the miracles we've seen so far. We're so thankful for ALL of the prayers and support each of you have given. This is another big hurdle he's gotten across and even though there are more, it's a big one he's passed. We want to give all the praise and thanks to the One we know all the credit is due.

Brayden's Quote of the Day: "I'm so glad I'm out of the hospital. I feel like the luckiest boy in the world."


  1. Brayden, you ARE the luckiest boy in the world for SO very many reasons! The biggest & best are your parents and their love for you! We'll keep you in our thoughts & prayers ~The McClane Family

  2. That is amazing how quickly things have changed. We just need to pray that the next phase of treatment goes as well for you. Brayden, you are a trooper. Keep your spirits high. We are praying for you.

    The Hill Family