April 2016


The bumps seem to be spreading down my chest. They now appear on both sides of my chest down to my chest plate. Still no itch. The doctors prescribed a different cream and a gel. They don’t seem to be making a difference, but the doctors aren’t concerned. It looks really bad, but doesn’t appear to be harmful.

On the eating front, I’ve started having a little more success with chicken noodle soup. Eating is still a huge chore. It’s been muscle milk, apple sauce and soup. I’ve had a couple small bouts of nausea, mostly when taking pills, but nothing major.

I was able to get out of the house for a little bit today. My parent stopped by, and we all got in Lisa’s car and drove around downtown for a while. We went to Belle Isle. Brandon and I had a chance to fly the drone for a bit. It felt good to get out.

My face is still bumpy, and my hands are peeling a lot. Luckily they aren’t painful and sensitive anymore. I also noticed a rash starting to form. I’m noticing a bunch of small black dots in my groin area, and also on my neck and upper-right chest. They don’t itch, and they aren’t raised or bumpy. Very strange. The doctors don’t seem to think it’s GVH, but aren’t sure if it is fungal, bacterial or viral. I also have the jock itch, so I switched to boxers. The doctors prescribed an antifungal powder for the jock itch, and a steroid cream for the new rash. I also got a steroid cream for the bumps on my face, which they think is mild GVH.

Today was my birthday. My parents and cousin Robert stopped by. I was pretty run down for most of the day, so definitely not one of my favorite birthdays. The rash on my face spread down to my cheeks and chin. I’ve been trying different foods to see what I can get down. I’m able to drink more juices now, so I supplement water with Gatorade, Vitamin Water, Muscle Milk and apple juice. I haven’t had much success with soups. Even Campbell’s Chicken Noodle Soup doesn’t taste right. I’m able to eat mandarin orange cups, apple sauce and other soft foods. Oh how I would love to have a steak right now!

DAY 22. The sensitivity in my hands is diminishing, but they are starting to peel like crazy. I’ve also started having gut issues again, having to go every 2 hours or so. Not fun. It turns out that I have C Diff again, so I was put on Vancomycin for 10 days. I’ve been pretty run down lately, most likely due to the fact that I’m not getting good sleep or eating well. My taste is still off, although it seems to be getting a little better. A few tastes come through, mostly sweet and sour, but I still can’t eat meat. I can chew it, but my throat doesn’t want to swallow. I’ve also started getting a rash on my face. Right now there is a small patch in the center of my forehead, and patches on my nose and down the sides to the top of my mouth. This might be signs of Graft Versus Host Disease (GVHD). This is an expected condition where my new immune system sees my body as foreign and attacks it. Some signs of GVHD are good, because they show that my new transplanted cells are engrafting. I’ll only need to worry if I see rashes on a large percentage of my body. So far my blood counts are looking good. I’m looking forward to being able to eat again, since this is probably the most difficult part of the recovery process for me right now.

My magnesium infusions were increased to twice a day – 4g in the morning and 2g in the evening. We had issues with the first pump. We kept getting Upstream Occlusion and Air in Line errors every 10-15 minutes. The pump was switched to a smaller, more portable pump and that one works a lot better.