Tuesday, May 18, 2010

A Bit of a Roller Coaster

Unfortunately, as the Dr's warned us before the transplant, Brandon has hit a bump in the ride. His new immune system has grafted well...so well though that it is now attacking his body and he has a bad case of graft vs host disease (GVHD). And although the Dr's do want to see a bit of this, Brandon's was getting too harsh.

Brandon has GVHD on his skin. As a result he literally looks like a burn victim. His skin is a deep red and has peeled completely on his face (after flaking for about a week). His feet blistered completely - to the point where he could not even walk, and his eyes swelled so much that he could not close them. He could not blink, and there was one point where he fell asleep on the couch with his eyes open - CREEPY!! It is quite painful and even hurts when he tries to apply his medication.

On Friday he had his regular checkup and the Dr's decided that they have to take action. Taking action means that Brandon has to start on a new medication and double the steroids that he is on. This does not seem like a big deal but the danger is very real...the medication increases his chances of coming out of remission (in yrs to come). Brandon of course asked if there was anything else that could be done, but unfortunately not.

So on Friday Brandon started the new meds. Today he is feeling (and looking) better. The Dr's saw him again today and are happier with his condition.

So the coaster continues...

In truth, as much as the Dr's warn you about these things in advance, I was convinced that Brandon would just be getting better each day and that he would soon be back to normal. I am starting to realize that the road ahead may be a lot longer than the road behind. And that sucks!


  1. Keep your spirits up. We're all pulling for you! We all know how this fairytale ends ("happily everafter"), so if the story has a few extra chapters, that doesn't matter. We're still in it for the long run.

    You're always in our thoughts.

    Jay, Alison & Kate

  2. We are so sorry to hear about this big bump that Brandon is going through. It sounds so incredibly painful. Unfortunately there is not much to stay, hopefully the meds will ease the pain and you guys will be able to go back to "normal".

    Oh and sleeping with his eyes open..... that's just because he's a super hero, don't all super hero's sleep like that? lol

    feel better and strong,
    Ryan, Naomi, & Jordyn Gerstel

  3. I am sorry to hear about the GVHD. All I know how to do is to share that our daughter went through GVHD as well (of the skin and gut) - and that through medications she was able to cope and rode it out until her immune system was content in her body.
    No GVHD now (and drug free for four years now (touching wood) I pray that with some time, and some meds to hold the GVHD at bay that Brandon too will overcome this nasty bump.