Jones Family

Jones Family
November 2009

Friday, July 10, 2009


Well, I guess he's normal. We went in for the last dose of the yucky Ara-C and found out his counts had REALLY dropped. The nurses at the local clinic are super sweet and meant well, but scared us all. I was sick with worry, anxiety, fear last night. We're already trying to do so much to protect him. Facing the realization that he's now officially neutropenic threw us into another world of fear again. Are we doing enough at home to protect him? I know Our sweet Oncology Nurse was so reassuring in our call this morning and did a lot to help me feel better. Yes, we knew this would happen. Yes, he's in strict isolation. Yes, somehow he's still running around! I've been amazed today begging him to take a 3-day break and relax. Not happening. I swear his energy level is super-human. Even when Bry got home from work (and going to the grocery store for me!) he was more than amazed. We thought, okay, he practically has no white blood cells. He'll be dragging. He'll finally slow down. Maybe we'll get caught up on sleep! Nope. He's still going strong. Thankfully, he still hasn't been nauseated at all. YEAH! That's definitely an answer to prayer. I'm still checking him for fever more times a day than is normal. But he's doing a lot to keep going in drinking lots of water and eating healthy.

What's next? He'll have chemo locally the next two Monday's only: Vincristine & Asaparaginase (we call it asparagus) and then Vincristine again. We're re-checking his CBC's each Monday and Tuesday to stay close to how he's doing. My biggest concern is the last round of Ara-C took a full week to see the effects on his counts. So I'm praying they don't go lower than they are with this round that we just finished yesterday. Thankfully, the next two weeks' chemo doesn't make his counts go lower.

We're watching his counts carefully because his levels are starting to dip into the range of needing another blood transfusion. We're praying we can hold off on this until we're back in Little Rock. If we have to transfuse locally, it requires an overnite stay at the hospital. With low counts, the last place I want him to have to be is a local hospital! Thankfully his platelettes are still good and not in the range where he'll require more, although we know that's a possibility in the future as treatment continues.

He was jumping up and down and cheering like he'd made a touchdown a few hours ago. We'd all been playing in the office (ok, mom was paying bills) and I saw out of the corner of my eye his steri-strip in the floor! It finally came off on it's own from his Port placement surgery! I've gotta say, you can feel it through his skin and he's all about how cool the scar is and everything. Poor Bry almost couldn't touch it while Brayden is excitedly encouraging him, "touch it, dad! Isn't it cool?!" I thought Bryan was going to lose his dinner. It's still hard to imagine all the invasive things he has to go through, but he's so strong and so resilient and we couldn't be prouder of how he's doing. I can't imagine what we did to help him. I am so grateful and thankful for all the prayers, because we want to give credit where it's due and we know God's hand has definitely been on Brayden. To see him up and about and not laying around all day still amazes me. Bryan and I are having trouble keeping up with him!

We're planning a big Game Day tomorrow...dragging out all those fun board games you never have time to play. Yes, Monopoly. And those Cranium games are AWESOME! We've gotten a few over the years and those people are brilliant! We got some fun foods to have and are trying to make isolation more fun for him. We're also planning another list of things he wants to do when his counts go back up. On the top of his list are HH and seeing the new Ice Age movie. HH? Yeah, that's Brayden's code word for his favorite thing: Happy Hour at Sonic. Those people are marketing geniuses. You can't pass up half price gallons of soda or slushies! So it's a fun way to get him a treat. But when his counts are lower, I can't bring myself to let that come in, even with clorox-wiping down the cups!

A big thanks to my sweet circle of friends for all the towels, book for Brayden, more Clorox supplies I never thought I'd use up the first time, paper towels. Thanks to the Tyner & Holloway families! We've never even met, but I'm so thankful to you for the mail lottery you sent to Brayden! He was so excited to get a stack of fun cards from all of you! Thank you so much for caring enough for our sweet boy to send these! Thanks to Miss Cindy for the YUMMY brittle!! MMMMmmmmm.....Thanks to Grandma Sue & Papa Bob for never missing a week with an encouraging card for Brayden. He LOVES the stamps!

Please pray that his counts quickly rebound and come back up. We're praying he doesn't need the transfusion for several weeks until we are back in Little Rock. We're praying no fevers or secondary infections show up and he stays healthy enough to make it without incident to the next round of treatment. Thank you all again for everything.


  1. Their resilience is amazing. I'm always shocked by how much enery they still have when they're sick.

    We'll continue to pray for all of you, for good health, for strength, and for energy to keep up with him.

    Love you guys!

  2. I remember when Dane was sick with a fever five months or so ago and I was checking his temp every couple hours and calling the doctors office and that illness lasted less than a week....I cannot imagine knowing his counts were so bad how you deal. I think I would strap the thermometer to him. You need one that reads it back to you like a talking caller id. Or like the bank will email you when your account goes below a designated amount, it should beep when it goes above 100. I see a potential money maker in the works….

    I hope the CBC test went okay today.

    Love to you all!

  3. Well, Nini is missing you oodles & oodles today! I sure hate not being able to see you when my heart aches for playtime with you! So, I get out my scrapbooks & look at how much you've grown & laugh about all the wonderfully silly things you've said & done. But, then I put those aside & sign onto here for my Brayden-fix! lol! Nini hates you being in isolation probably almost as much as you, Mommy & Daddy do. It's so hard to not see you. Although, I'm thrilled that we get to visit with you on the web-cam,'s just not the same as seeing you & hugging you, tossing around the football, light-saber fights, & snuggling on the couch with you, Brayden. I sure do love you buddy! Just wanted you to see Nini's comment on your bloggie & know that I was missing you today! I luv ya bunches, Bray! - Nini Nett