Monday, 7 July 2014

It came in a rash

Virus? No big deal.

Not allowed in public? We can handle that.

Rash that comes from nowhere and is a sign his body is fighting his bone marrow transplant from four months ago? I don't even know what to say. I'm in shock. I want to go hide in a corner.

In my last post I wrote that hey, it could be worse! Well, now it is. On Saturday Dominic started developing a rash on his head; by Sunday morning it had spread exponentially and Trish wound up taking him all the way back to Calgary to be evaluated.

As always, he happily opened his mouth wide on command for the doctors, laughed when we tickled him and smiled through it all. The rash doesn't seem itchy and he got an eventful day out of the deal.

The oncologist at the Alberta Children's Hospital almost immediately decided it was graft versus host disease. Back to the chalkboard for this one.

GVHD happens when the donor cells from a bone marrow transplant (the graft) get in a fight with the original blood cells (the host). Even though his prior tests have shown 100 per cent donor cells, the chemotherapy he's currently getting once every three weeks until September has knocked back all of his cells. Even at 100 per cent, there could always be a chance the transplant could suddenly fail and his original cells could re-grow again.

A bit of GVHD is actually considered good in the long run. If the donor cells are now strong enough to easily fight away the old host cells, they're stronger for it and the chance of a complete failure of the transplant is far less likely.

However - and this is a big however - a bad case of GVHD could cause a failure and put us right back to square one. Or worse, as we know happened to one of the little girls on the unit when Dominic was in intensive care a few months ago.

There are other possibilities to explain the rash, like the measles or an allergic reaction of some sort. Who knew the measles would ever be preferable. But the doctor is pretty sure it's GVHD.

Tests are in but not back to confirm it, so in the meantime they're starting a steroid cream. If the cream works on the rash there's a good chance it's a mild case of GVHD, which is the best-case scenario here. Either way he's still got the virus from last week and he's been spiking a fever, so it's back to Unit 1 for a while.

We were foolish enough to think things were starting to get back to normal for our son. He had 10 whole days at home and even though he wasn't eating great, we were at least finding some semblance of routine.

Now it's back to me driving in after my last night of work in the week and driving back to Medicine Hat. I'll have to bring extra clothes and medical equipment because Trish only packed to be in for a couple days.

I woke up today to read a bunch of whining complaints on social media. I wanted to hit all of them over the head with the stark reality that it could be worse, and not in a 'my socks don't match' kind of way.

Then I thought back to Dom sitting in his diaper, a rash all over his body with a tube coming out of his chest and another down his nose. Smiling. Laughing. And here I was lashing out at people because they could have it much worse. Why?

That's the thing about perspective; just because you don't have mine doesn't mean your reality is any less of a pain in the moment. I think what I've noticed in all of this is that when I do get mad at something frivolous now, it fades a lot faster than it used to. It still boils up as always, and I can still be an idiot, but maybe fewer people get impacted than before. It's one of the many lessons my son is teaching me.

3 comments:

  1. Praying up a storm that it's a mild GVHD. You three deserve a break for heaven's sake.

    ReplyDelete
  2. Sending all of the good thoughts your way for the best possible outcome. You're all amazing. I can't say I would be able to handle a situation like this with the bravery you are. And Dominic is such a little trooper! Hoping for the best for you all!

    ReplyDelete
  3. Perspective. You are as amazing as your son. You have every right to be angry and have contempt for the trivial nonsense we can get caught up in. I know one day your son will benefit from the wisdom that his journey has taught you.

    ReplyDelete