Jones Family

Jones Family
November 2009

Tuesday, October 13, 2009

On Empty

It was a very long day yesterday that was kicked off with only a couple hours of sleep. Poor Dad got to drive in the torrential rains all the way south. Brayden had to not eat or drink and by 12:00 for his sedation, he was getting pretty nauseated. Thankfully his nausea meds kicked in and the sedation went well. Everything stats wise looked good. They checked for all the liver function tests so that was good to hear. We were stunned that Brayden slept 3 hours after coming out of sedation with intrathecal chemo (spinal). That NEVER happens. He was administered 2 chemo meds via his port and had to post-hydrate for an hour. The ride home seemed to never end. After not eating since the night before, he realized he was hungry. We had bathroom stops and pharmacy stops. Multiple times. Long story...

We were all exhausted by the time we got home. This morning came way too soon. Brayden was not feeling well at all. He pushed on, insisted on breakfast but I knew we were in trouble when he couldn't eat it. He wanted to do the webcam for school but within minutes, he was sick. It's been a very hard day. By late morning after the 3rd anti-nausea medicine, he finally started getting some relief. I was thankful he was sleeping but petrified how we were going to get all his meds down to stay. I was so happy when he got some sleep and finally seemed interested in some carnation instant breakfast. I was worried when he said his mouth was burning. We were sad to learn he can develop mouth sores from this round of chemo as well. So more mouth watching and maintenance for him. I was so happy when Nini Annette showed up and came to our rescue. I don't know what either of us would have done without her today while I tried to keep pressing on and getting work done after he started feeling better. We've had some hot green tea, ramen noodles, and later some easy mac. So hopefully tomorrrow will be a better day.

We found out yesterday that Brayden's Oncologist has put him on Strict Isolation for this month. His counts will appear safe, however, this chemo regimen of meds is intented to kill his t-cells to ensure all the Leukemia remains gone. The bad thing is it again kills the good cells, therefore his ability to fight off infection is greatly diminished. The good news is unlike being Neutropenic, he shouldn't develop a fever as a symptom, unless he truly has caught something. So we're praying he remains healthy. Our plans for Halloween have been de-railed. We're not sure now about our annual tradition of the Pumpkin Patch. We're still trying to figure it all out. We're thankful all this means to keep him safe and healthy.

Thursday Brayden will have chemo locally: 2 shots in his legs that we call asparagus. Next Monday we return back to Little Rock for another round of chemo. And the best news of all? We found out he has to start back on steroids. The emotional impact of steroids is the worst thing for me as a mom to see in my sweet boy. It's truly a roller coaster of emotions that we already have seen a glimpse of this evening.

I think we're all truly on empty today. Yesterday was a long trip. We were glad to be back home in our own beds. Today was so hard to see him like this and I can't imagine how hard it was for him. I'm so hoping it's short-term. He has 2 more rounds of this regimen then the ugly round of the med that made him the sickest last time. We can see a glimmer of light and we're trying to stay focused on that for now. Thank you so much for all your prayers...


  1. What a long day! We're thinking of you and will say extra prayers that today is better. Give him a hug for us. We'll have to make sure he gets some halloween goodies if he can't go out and celebrate.

    Please call if you need anything.


  2. Thank you for sharing the difficulty of your week (two days in) so we can get a more real picture of what this illness has brought into your home. I'm praying for the comfort He can bring you to carry you all through this. I am so sorry you are walking this journey.

  3. Ok now I feel bad that I was whining about my 27 hour trip to Springdale last weekend. At least I didn't have chemo while I was on that trip! Nothing like Brayden to put things in perspective! Thank you Brayden.