Jones Family

Jones Family
November 2009

Monday, August 17, 2009

Little Rock Update - Day 1

Mr. Brayden has been in rare form today! This was such a stark contrast from how we both felt 3 weeks ago before when we tried this round of treatment. It really made me realize how sick he was at the time. I started the day off at 4am (yikes!) and Brayden wasn't far behind at 4:45. Even from the time I woke him up, he was ready to get the show on the road - literally! We had lots of laughs on the long drive south to Arkansas Children's Hospital. When we arrived in clinic, he was happy to see the nurses with whom he makes a regular habit of giving a hard time. The sarcasm ensued quickly! He did SO great with the port access - 3rd time was a charm! I was quietly happy to see I wasn't the only one who gained some poundage over the past 3 weeks in strict isolation with comfort food!! Our jaws dropped open when we learned his counts are at 2761! WHOA! Another new record!!

Brayden did great during the sedation procedure with his spinal (LP) where chemo is injected into his spinal fluid to help fight off those leukemia cells. During sedation, he finally was able to say goodbye to his PICC-line. He was quick to show me when I returned that they let him keep it, just as he requested weeks ago. Don't worry; I'm sure you'll get to see it soon. He's very proud of it and it was certainly interesting to see it outside of his arm. It's amazing to think he's had it just a few days shy of 4 months! WOW! Even more impressive is that it's continued to function properly and help exepdite Brayden's meds all without infection. We said goodbye today to the daily shower ritual of wrapping his arm in press-n-seal before every shower, to the daily flushes and prep we had to do in order to ensure it continued to work properly, to the nasty tape (Brayden's nemesis) and to the weekly dressing changes that in the last few weeks at home in isolation became mom's nemesis! He couldn't stop telling me how free he felt! His poor arm will hopefully return to normal after all the trauma it has endured with all the tape and alcohol.

Today I definitely missed Bryan being here. Not even 3 hours in to his admission to his room on the unit floor, and I've gone through my entire bag of tricks. Games, books, cards, coloring books, joke books, Star Wars guys, a cool new Read & Find from his buddy Andrew, DS games, and the list goes on! We've taken 2 walks already, started 2 movies, played on the internet... Oh, dear. How are we going to stay creative & busy the next few days?!?! What a difference it makes when his counts are higher!!

Brayden has been hydrated all day to try and aide the chemo in processing quickly and minimize the toxicity on his body. We've been warned this med causes bad mouth sores that also can occur all throughout his GI tract - ouch. They're very painful and if they occur, will require some hefty pain meds. While we're admitted and his body processes the chemo, they will keep him on iv fluids, the wonderous anti-nausea iv drug, as well as iv preventative meds to try to reduce the likelihood of mouth sores or at least their impact. We've been told this round will cause his counts to drop, but not as severe as the others he has had. And hopefully since they are higher to start with, we've got some breathing room before we are in the danger zone again. Our prayer focus definitely centers around mouth sores, as not only is it painful to endure, but it also causes him not to want to eat or drink, which can be dangerous.

We'll see how tonight goes. I'll keep trying to be creative and smiling in disbelief at the wonder that is Brayden and all that he continues to endure with astonishing resiliency. If things continue to go well, I'll do more frequent updates this week since it will be easier to post. There's still so much to talk about, especially our weekend of escape!!

1 comment:

  1. "The wonder that is Brayden"! Wow, how true those words are! I love that you put it that way! This whole time, I kept waiting for him to take naps, rest, thought he'd be lethargic, tired, weary???? rofl! Not Brayden! I thought Nini might actually be able to out-run him & out-play him, until the water-balloons & water-gun battle! He still out-gunned me! Argh! lol! How do you do it, Brayden? Nini loves you and am in absolute awe of your fighting spirit, your sweet nature & outlook, & your amazing resiliency! God must'a meant for you to be born with it to get you through all the tough stuff in life! Nini is so proud of the young man you are, Brayden! And, I love you with all my heart! - Missing you.....Nini Nett