Sunday, August 18, 2013

Days -6 and -5: Chemo Sets In

We made it through the weekend of baths and dressing changes, but barely. Things went well yesterday, but today Ezra started bleeding from his central line after the first dressing change. There wasn't much we could do at first because of the skin issues from this chemo drug. After the second dressing change, we put on a dressing to help with the bleeding and will watch it over night. He is going to need another dressing change tomorrow no matter what. Hoping the bleeding resolves overnight. It is likely due to all the dressing changes and the line not having a chance to heal. That's always the vicious cycle with transplant - everything you do causes another problem.

Aside from this issue, Ezra made progress in dealing with the process by deciding on the way he wanted dressing changes done: Three Stooges playing on the iPad, Mama takes off the bandage, a wet paper towel is patted on the other side of his chest while the nurse does the sterile cleaning (the worst part according to Ezra b/c it burns). He still screamed his head off, but he stayed still and gained a little control over the process.

No sigh of relief though now that this particular drug is done. Tomorrow starts the scariest of the drugs. This drug can cause very serious allergic reactions. It will be slowly given over most of the day. Ezra will be heavily pre-medicated and will likely sleep most of the day. He had a less potent form of the drug last year and did fine. This time it is the more powerful form and he will get it for 3 days. It will be a very anxiety filled 3 days.

The vomiting and nausea are still going strong. He has lost most his appetite. His energy is low and we can see him fading. It is so heartbreaking when he cries "why is this happening?" In between all the hard stuff, he is still playing plenty and enjoying his rewards for being a good boy like his new handheld rocket launcher. We have been busy anticipating and fulfilling Ezra's needs. Like "I need food coloring for my 'experiment.'" Solution? Drop some M&M's in there and see what happens. Or "I can't drink unless I have my Buzz Lightyear rocket cup." Oh yeah? Well, give me that paper cup; here are some construction paper fins; slap on some Buzz stickers and voila! A Buzz Lightyear rocket cup. Now drink.

Ezra's CBC today showed that his lymphocytes have drastically dropped. As scary as this whole process is, this is a good thing. For those of you who followed Ezra's blog last year, the problems started when the chemo failed to kill off his lymphocytes. The numbers may still bounce around a bit, but this is a good sign that the chemo is doing its job this time and the doctors are pleased. Hoping this is the beginning of the end of Ezra's old immune system and a sign that his body will be ready to welcome the new healthy system.