Jones Family

Jones Family
November 2009

Thursday, August 26, 2010

2 year Countdown

Well, we're 1 week in to 5th grade and things are going great! Brayden has been SO responsible for his work, we've really been proud of him. He's been a little tired at night. The first night he crashed in the floor while watching some football, so you know he had to be tuckered out to miss seeing a pre-season game. We definitely can tell he's been playing his heart out at recess and is so glad to be back with his friends. Each day he wakes up eager to get going and has been reading on his own at night, laying out his clothes - wow. He's really growing up!

Monday's chemo & bloodwork this week at the local clinic yielded amazing results! Brayden's counts were super high for the first time in SOOOO long! We knew they would be after a week of steroids, but we didn't think that high. Let's hope this is an indication his system has rebounded. His sweet nurse in Little Rock at Children's showed me his chart and how he's had a good 5-week trend of counts in the 'safe' zone. But until they come up into a higher zone for 6 straight weeks, we can't increase his chemo. His chemo should have been increased in June, but his system was too low to handle it. Our little man is growing and has grown since the 3 months prior and it causes his chemo dosage to have to be adjusted to compensate for his 1 inch taller and couple of pounds bigger. Did I mention he's wearing size 11 shoes & is 5'1" plus some!?!? So once we see his system becoming stronger, his steroid & weekly antibiotic (to prevent pneumonia) has already been increased and then his nightly chemo, weekly chemo, and monthly chemo dosages will also be increased. We were all concerned however if we had done this sooner, it would have sent his counts bottoming out again and in the Neutropenic range. We didn't want another hospitalization. It's hard to grasp that even though his counts are safe right now, they are still DRASTICALLY lower than the average child. I was reading about more recalls this week. Of course these all say the average person would be fine, but in people with compromised immune systems, it can be lethal. Well, Brayden has been and will continue to live with a compromised immune system for 2 more years. It's a good reminder for us to continue to be vigilant with his health and not let up for a second. I think some people probably tease or think we're crazy. But the fear you feel when his weak immune system is in danger because of a cut or small virus, or flu, it can be so scary that it ignites that protection for him during the times when it appears all is well. Hopefully he'll continue with a good trend the next 5 weeks and we can bump up his chemo. Again, strange to be hoping for a stronger chemo dose, but we want to be sure he's receiving all he can so that it can do the work it needs to in order to ensure the Leukemia NEVER returns again.

This visit to Little Rock was more fun for us. We laughed a lot with his awesome Oncologist and hearing his stories. We FINALLY remembered to ask for a picture with him. We also remembered to take some pictures of him outside of the hospital like he's been asking to for a while. We're always eager to get inside once we arrive at the hospital and then so eager to leave after being there usually 5 hrs that we never remember to stop and take some pics. They turned out so well and I'm so thankful for those memories of Brayden in front of the ACH logo. He truly is resilient with this battle and we're so proud of him.

August 2010 marks a big countdown. Brayden's end of treatment will be in August 2012. He'll be 12 and be about to enter 7th grade. Wow. We did some calculations recently and he's exceeded 5,000 pills taken since his diagnosis. He LOVED hearing that feat! He's such a pro now with his pills! He can down all 3 of his morning pills in one gulp and is pretty proud of his accomplishment! His nightly 5-12 pills (depending on the day of week) take him seconds now. He's come so far since first learning how to swallow pills at all!

We've got a couple of follow-ups coming for him in his treatment that we need your prayers for. He's going to see an Orthopedic Specialist about the ligaments in his foot. He made need a corrective shoe insert to help his walk which the Neuropathy in his legs isn't helping. His leg pain was better in July but the last 2 weeks he's been hurting more again. I bet being more active at school is helping in some ways but bringing more pain too. He wants to keep up with the other kids so badly. He also will be seeing a Urologist for some other things that we were worried about earlier on in his treatment. Secreting so many toxins with all the chemo drugs can really wear down his system. Thankfully his liver enzymes have still been better, but his bladder and other things we want to be sure is doing okay. He's on some preventative daily meds just to be sure it doesn't cause other infections, but his Oncologist wants to be sure he's doing okay internally. I'm so glad Brayden's an awesome water drinker as that has to help somehow.

We've got something BIG coming tomorrow! I can't wait to post & share pictures on an amazing opportunity for Brayden. We've been so excited for this and we're thankful for cooler weather today to hopefully help make an awesome day even better. Thank you all for your love, prayers, & support!!

1 comment:

  1. I love the update and am glad you all seem so positive right now. We think of what you are going through often. Brayden- I'm so glad you are enjoying school!