Jones Family

Jones Family
November 2009

Tuesday, June 30, 2009

Brayden's Popcorn Visit

Brayden picked out the title. One of the sweet nurses that we have when admitted to ACH, likes to remind Brayden it's just a "Popcorn Visit. We pop in and pop out." It was a cute reminder for me to be thankful for others that were having to stay longer. So yesterday was another popcorn visit.
We got back from Little Rock a couple of hours ago. We found out late Saturday for sure Brayden's counts had rebounded enough to begin the last 2 weeks of this block of treatment called Consolidation. This is the two weeks we've been dreading. We know from last time, the Cytoxin he got on Monday (that requires him to be admitted to monitor output and kidney function overnight) can be ugly. The Ara-C he has started is the one that caused Brayden to see his first glimpse of nausea during chemo. He didn't have to have a sedation for a spinal or LP, so he got to eat breakfast and we had a good trip down. We're perfecting pit stops when in the beginning, just the thought of it would bring paralyzing fear. Think about it: you're bringing a little one home (yes, he's still little to me) who needs to be isolated from germs, yet we have to stop to use the bathroom - where, exactly on the 4-hr drive home? I'm thankful he's a boy, so we can make things, how should I say, easier logistically? Us girls aren't so lucky in that department. Thanks to another mom's advice who's been through this, I just pack up gloves, clorox wipes, and include them with the trip. We found a nice little mom & pop stop about mid-way we've used several times. The catch is you have to make a purchase. Oh, and a minimum purchase to use a debit card. Inevitably, we don't leave with cash. It's work enough remembering to gas up before we leave! I'm getting off track...
So, unfortunately Brayden's been having a lot of nausea lately. We've thought it's related to acid reflux based on how he's described it. It's unfortunate because he had a week break from chemo, so I was hoping he wouldn't be sick. He was...15 min into our clinic visit. Poor guy. They got his Zofran going (the miracle anti-nausea drug that usually works) and we headed over to be admitted. Each time we cross our fingers and hold our breath for a private room so we can both stay with him at the hospital. The last time we didn't get so lucky; poor Bryan slept in the waiting room while I slept in the chair in the room. This time, there was a fold-out couch, but only one parent could stay in the room. We used points generously donated from my work family to allow him a bed to sleep in. I was jealous of his nice hotel room's a long story.
While in Clinic, we had a great visit with Brayden's Dr. and getting caught up with him. Brayden is still doing great with a few things: the Peripheral Neuropathy has brought on a couple of episodes. Imagine restless leg syndrome exponentially multiplied. He had trouble standing or holding things and it was really scary last week when it happened. Luckily a pain pill helped him to finally relax and give him some relief until it passed. It was hard for me to see him like that. Thankfully his Dr. says this is a good sign of healing with the nerve signals. So the healing brings with it a not-so-great side effect. His port site is healing great! It was nice to see so many of the people we are growing fond of with all that they do to help our sweet boy. We're trying a new med to help with the acid and hopefully ease that issue. He's got some bumps on his legs as a side-effect of the Ara-C. All in all, he's doing good.
So, we got him to his room and ready to prep him with pre-chemo meds when he got sick again. They tried another med to ease the nausea and for the first time, Brayden had a dystonic reaction to it. We were thankful if it was going to happen, it happened there. The staff was great and responded immediately. If Brayden hadn't woken up agitated (which he NEVER is) we may not have noticed anything right away. He was having involuntary muscle spasms in his upper body and in his legs. He was telling us how he didn't feel right. The Dr. was there within seconds to check him out and, of course, Brayden tells him he's fine! AAAHHH!!! Anyway, after his exam, Benadryl to the rescue and he was good to go. His nurse was SO sweet to come down and check on him later after hearing of his reaction. She had to see for herself the non-by-the-book patient that had this reaction! She's awesome...and I'm not just saying that because we found out last week she's reading the bloggie!
It's amazing how when he's sick and sleeping and you WANT him to drink and eat you miss the crazy days of the steroids! I was over-joyed when he finally kept a little sprite down, water, and a popsicle before dozing back off after the 2nd anti-nausea med.
We were so blessed to have a visit from our friends Brian and Kathie who were also in town. They were so sweet to come by and visit with Brayden and then bring us back a YUMMY lunch from PF Chang's! What a treat and nice break from the hospital cafeteria! We snuck some food while Brayden was napping. Later that evening, he woke up a little more peppy and I was telling him how Kathie and Brian had brought him some fortune cookies! He wanted one and I thought, yeah, that's bland and safe. Nope...10 minutes later, it returned. So we went to nausea medicine #3. When Brayden's admitted for chemo, they keep him on continuous Zofran iv thru his PICC line, so poor guy was really not feeling well. With nausea medicine #3, he got CRAZY loopy!! His nurse came in to give him his meds and he kept nodding off while taking them! Suddenly he looked down at the pill cup and said, "Why are there 4 pills?" We both couldn't hold back our giggles. I reassured him, "There's only 2 pills, sweetie. Let's take these quickly and go back to sleep!" He was quite the entertainer for both of us.
Through the night, they kept checking Brayden's output for toxicity. I got a little nervous when they came in to increase his fluids because of some results that came back. Thankfully, by mid-day today, he was good to go. But it made for an interesting night. The funniest was after his loopiness from anit-nausea med #3, he popped up from sleeping and announced he was hungry around 10. I was never so happy that he kept a banana down and some more water. He rested the rest of the night (minus bathroom breaks!)
This morning he finally rebounded and enjoyed sleeping in, a nice, late breakfast, and thankfully no nausea. It was a long trip home. I felt awful for him. The anti-nausea med #3 brought out some serious emotional side effects. But riding in the backseat with him and just giving him love and support and a shoulder seemed to help. We got distracted with a movie. But I think the endurance is going to be tough for him this week and next. Please say a prayer for him.
We were excited to learn that after Brayden is done with this two weeks of treatment, we might get a 3-4 week break from trips to Little Rock and can do chemo locally. From the start of the next block of treatment (called Interim Maintenance or Re-Induction) 3 years from that date is when he finishes treatment. Again this doesn't account for delays in treatment due to low counts or infections, etc. But we've got the roadmap now for everything and the 4 sheets of paper really look less initimidating than we thought! It was harder to hear Brayden say, "So treatment will be done in 2012?" Wow...putting it that way, though, reminds us how long that really is. We'll have 2 1/2 or more months before radiation. He has many more Spinals or LP's in his future where they inject Methotrexate for the brain cell treatment separate from the rest of his blood treatment. He was happy to hear that because, he's addicted to the dizzy medicine. In a good way! Again, I'm thankful he's not anxious about having it done!
We've got chemo locally for the yucky Ara-C Wednesday & Thursday. They'll give him fluids if he's been nauseated, and do an iv push of the chemo. If he's not been sick, it usually takes 30 min. He's got chemo pills to take by month for the next two weeks. He goes back Monday thru Thursday to have the same chemo push locally. Then the break. So here's praying he can enjoy the 4th and we can speed past this Ara-C and keep moving on!!

1 comment:

  1. OMG, I don't know how you keep up with it all. Glad you are back home save and seem to be getting into a routine. I sat at the beach tonight looking over the beautiful ocean thinking of Brayden, my friend Heather, my Aunt, my friend Laurie, and Declan and it just seems so overwhelming all the struggles we have to overcome.