Jones Family

Jones Family
November 2009

Wednesday, July 21, 2010

Sighs of Relief & Answers to Prayer

Wow - Monday started off again SO early, as the Little Rock days always do. We were thankful to have safe travels & a Daddy to drive so Momma could get some winks of sleep & a stubborn boy who did NOT go back to sleep! We got to ACH 30 min before our appt time - and sat for EVER. It's sobering how busy they seem to get each time we're there as we hear about new diagnosis cases & how many MORE children they continue to see day after day. The statistics about childhood cancer, while much better than years prior, are still so scary to hear. It's hard for me to be so brutally honest sometimes. I try to cushion it on here or stay away from it altogther. But the numbers are something I couldn't shake this time: 1 in 5 will not make it. So this time, while looking around the room at so many other children fighting, it was almost more than I could take. We've continued to see the same children in our 15 months since diagnosis, as of today. This time we saw one get to cross their fingers and hope this is their last chemo treatment. We met an adorable 4-yr old little boy who decided to be best buds with Brayden. He came trotting over (after saying, "I love you, Mother.") to check out Brayden's DS. Brayden was so unselfish in handing it over and helping him along. It was SO precious!! I talked with his mom who is expecting another one and couldn't imagine how she was juggling it all. Her son's diagnosis was ALL - but the lesser aggressive form. Thankfully he didn't have to endure Radiation or the aggressive chemo drugs or the longer treatment plan. I think it was neat for Brayden to hear they shared a similar Leukemia diagnosis, yet confusing to hear of his path being a little different. More realizations...Bryan said later it just broke his heart to see that little boy knowing he was about to receive the Asparaginase shots in his legs like Brayden had. Those feel like acid burning from how we've heard it described and knowing what he was about to go through after seeing Brayden endure that multiple times first-hand was heart-wrenching.

We tend to keep to ourselves. Sometimes it's scary to become attached to other families as you see them struggle. Plus I know sometimes you don't want to talk & share and know how long it took me to finally start looking around the waiting room at the many faces. Even after being there for 5 hours, we are so thankful for the ability to have ACH. It's easy to get bogged down with the 500-mile drive and the wait and the frustrations...but I can't imagine doing this without their expertise, encouragement, and overall support. The staff is truly amazing.

After Brayden's port access & blood draws, the waiting game was excruciating. He's 5'1" 10 years old. There's no doubting he's a Jones man. It's been a really unsettling 8-10 weeks. The last 2 months of results in Little Rock and Brayden's system responses in the weeks that have followed have really thrown us for a loop. I don't know that I effectively articulated on here how deeply this had effected us. Suddenly having 2 blood transfusions only to see his red cells continue to decline afterward was so alarming. We had been on worry-alert with his liver enzymes being so high and not seeing them decline much worrying that the chemo toxicity was really doing irreversible damage which would have his chemo reduced. Then that leads to worry about the chance for relapse knowing he has to have this FULL protocol with all chemo drugs to help limit the chances of that. Being Neutropenic lately and having to skip weeks of chemo had us so scared. Thankfully he hasn't developed a fever as a result. But we kept wondering when his bone marrow was going to kick back in. THANKFULLY - after waiting and waiting we finally received the best blood work results in months! Brayden had good results across the board! His liver enzymes were down to 1/3 of what they had been - no longer in the danger zone! His bone marrow woke back up and has been producing little baby red cells! For the first time in months, his body did it on his own in increasing his hemoglobin WITHOUT the blood transfusion to do it for him!! AND - after a week of being back on chemo, his ANC showed that his counts were high enough to continue chemo & he wasn't Neutropenic!!! We were ecstatic! This was SUCH good news after a very difficult couple of months. Brayden was cheering knowing this meant getting to golf, getting to swim in the indoor pool, seeing a movie and just getting to be a kid for a bit! Less worry for Mom & Dad too is always a good thing!!

The only point of worry is some problems with the tendons in Brayden's right foot. He's struggled with the Neuropathy in his legs since starting one of the chemo drugs, Vincristine, that he receives monthly. He's been having more and more trouble with that right foot & ankle, so we're hoping there is another solution to help & it isn't related to the neuropathy worsening & needing to increase the dosage of that medicine that helps him. We just had to increase it a couple of months ago, so we're praying for relief for him. Since Monday, he's been more sore but we know he's been running hard! He didn't sleep on the way back from Little Rock either and has been so exhuberant about the awesome results.

As usual when we get a rare opportunity with good blood work, we're going to try to make the most of it. We're hoping to see some family this weekend and he's been begging to go school supply shopping. Remember last year even though he had to be at home, we let him pick out what he wanted over the internet. We're thinking if his counts are high with his steroids this week, maybe we can go later one night when there is less traffic in the stores?

We're so thankful for all of the prayers that continue for Brayden. His journey still has a long way to go. Next month will mark 2 more years for chemo - end date goal of August 2012. It still daunting to try to wrap our minds around that. Many times for us and for him it's literally week to week without really knowing what's going on under the surface. For the liver function it's month to month. You can get certainly obsessive over the numbers and relying on them. I guess again I'm reminded of trusting Him to hold Brayden and know that God has Brayden in His hands. Thank you all for walking this journey with us in your encouragement & prayers!

1 comment:

  1. Lisa, continuing to send up prayers for Brayden and for you & Brian. Brayden is an amazing young man & I honestly don't think I could handle something such as ALL as well as he has. Glad that you got better results this week and a little hint--I'm working on a nice (Hog) surprise for him for sometime this fall. You can talk to Annette about that. :-) God bless and be with you all each day.......