Jones Family

Jones Family
November 2009

Wednesday, July 15, 2009


I figured it out. i jinxed us. After living out of a suitcase for the last 12 weeks, we finally decided about 9 days ago to unpack. Going week to week back and forth to Little Rock, most weeks for 2 days at a time staying there, we got to where we'd leave the basics, wash the dirty stuff, and re-pack leaving the majority of the suitcase in tact. After not having some basic things that you need while in the hospital the first 10 days, we learned quickly to always be prepared! Anyway, I guess finally deciding since we got a 4-week break from Little Rock we could un-pack and put the suitcases away jinxed us. So that was it!

All kidding aside, we had a very long 10-hr day at Children's yesterday. Brayden was so nervous and upset...I've never seen him like that. First the drive down was so stressful. He got a nosebleed and I was really worried. Bryan and I both looked at the speedometer. How fast could we get there? Once there, we were all surprised to hear they would be accessing his port for the first time. Brayden's always been the type if you can prep him for it ahead of time, he's fine. He thought he had 2 more weeks to prepare. This last-minute news really jolted all of us but especially him. He was so scared. We didn't know about it ahead of time so there wasn't time for the Emla or numbing cream to take effect. They did a freeze spray on it that I think hurt more b/c it was so cold trying to numb it. Once it was over, he was fine. We were glad it worked and understood they needed to go ahead and do it to ensure it was working and stayed working. But it was a really traumatic day for the poor guy.

They started the prep meds for the transfusion and began with the first unit. It becomes a waiting game while praying for no adverse reactions and watching his stats be monitored very frequently. I started asking about his counts and we realized they had drawn blood to do the type & cross for his blood transfusion but not for CBC's. I guess since they had been done the day before, they weren't ordered. I asked later to be sure and we saw someone coming in to draw blood for counts. I was almost scared to see them but very curious to get a true ANC read since the local clinic doesn't measure all the differentials the same way to get a true count. So the nurses come in to administer chemo. The PEG Asparaginase is 3 shots given in the muscle in his legs. Even with the numbing cream put on his legs, he was more than a little nervous. He's had it before, but he didn't remember the first time when he was in the hospital right after diagnosis. Then the other times it was done while he was sedated while doing the spinals. So this was new for him. So the nurses are literally about to give the shots and 2 other nurses run in to stop them. His platelets had dropped from 45 the day before to 12 - AAAHHH!! We were trying to figure out what that meant. I guess with them being that low, the concern was if he started to bleed, would it clot and stop on it's own? Scary. They stopped chemo and went to order platelets to be transfused. This was definitely a first for us. We were so thankful they had them there that matched what he needed and to get those going without incident or reaction. Again, another realization to thank all those who donate. You don't realize how thankful you are until you're staring at your sick child with those bags hanging next to them so grateful they are going to help him get stronger to keep fighting through this horrific treatment.

The chemo then was another scary time. Just very traumatic for him. I felt awful. I'm hoping he's past the fear b/c he's going to have those many more times. Anyway, he has to be monitored an hour after receiving that chemo for anaphylactic symptoms (scary) and while waiting, they began the other unit of blood. Soon after, he started perking back up. He didn't even remember the nose bleed in the car. He's been having more trouble with short-term memory loss, so we're being careful not to stress him about forgetting things. We know this is a side-effect and are praying it stays minimal.

We were glad to see his cheeks start pinking up and thankful we were there to even see the counts that his platelets had dropped so much in one day before heading back home. He's still neutropenic. But we go to the local clinic to get CBC's again tomorrow and we're hoping they're at least coming back in the right direction and not still falling. He rested well last night and was better today than yesterday but definitely not back to 100%. I was thankful he ate better and drank more. It's so impossible to get him to do those things while in clinic.

We were so glad to be back home and thankful Brayden didn't spike a temp and have to be admitted. After running on 4 hours of sleep, we couldn't be happier to see our own beds. We're glad the 24 hours are past to see if there was any reaction to all the transfusions and chemo meds. Yesterday was certainly harder than the other visits. It was our first glimpse of seeing low counts EVERYWHERE for him. We've known and been prepared this would happen but it gives you a new low to become adjusted to emotionally when you get there. Just when you think you've taken it all in and prepared yourself, you get swiped down again and remember to keep picking yourself back up, try to keep having faith, and pray he stays strong enough to rebound quickly. We're so glad there's only 1 week left in this 2-month course of treatment. We know the next 2-month round is high-dose methotrexate and aren't sure what all to expect from new drugs. He's had it previously but it was different when given via the Lumbar Puncture aka Spinal for the brain treatment of the cancer cells that were found in his spinal fluid at diagnosis. We'll know a week from tomorrow if we go back to Little Rock the 27th or the 3rd depending on his counts. I don't know to hope for low counts which means a break or high counts so we can move yet again to the unknown.

Wanted to say a quick thank-you to sweet Mary for the 'awesome' t-shirt you sent Brayden! Yes, he's certainly a baseball fan and mom couldn't wash it fast enough for him to wear. He had it on today and would have sooner if we weren't in Little Rock! He loved the card and loved knowing that you follow the blog. By the way, yes, his injury time-out toe cut took a week to heal and with almost no white blood cells, but we're thankful at least it healed. We've been having fun playing with the web cam. If you have one and want to chat with him, please email us at "". Take care!!

PS - yes, it is safe to assume I will no longer be UNPACKING our suitcase again!! :-)

1 comment:

  1. Hi Brayden,

    I am in Iowa right now and I wanted to say hi. I am going to go to Mount Rushmore tomorrow. We might go to a corn maze tomorrow before we leave Iowa. Talk to you later.

    From Lauren Lembke