Friday, 7 November 2014

Together again

Well, that was a crappy couple weeks.

Minus, of course, the amazing time I had doing Extra Life Oct. 25 (see the link above for how we did), it's been a trying time for all of us.

Trish has been stressed out being in the hospital for so long. Every once in a while she needs a break, and that's usually me for two or three nights a week.

But I committed to doing Extra Life, which meant one more weekend not in Calgary. And then I got sick, so sick I wound up at a walk-in clinic getting a prescription for antibiotics. That meant a second weekend stuck in Medicine Hat. No way would I chance getting him ill. But it wasn't easy being away for so long.

Today I am better and finally got to return to Calgary. I brought an amazing basket of gifts courtesy the folks at Random Acts of Kindness in Medicine Hat. The timing was perfect as Dom was getting a bit tired of his existing toys and we had just about run out of gift cards for gas, which has been a godsend.

As for our beautiful boy? Well, he's definitely got graft versus host disease, and they've started him on steroids to keep it in check. Suddenly his hair is growing like weeds, which is shocking given all the chemotherapy he's had in the past year that prevented it. Also, he's got some roid rage, which means - gasp - he's not happy all of the time. That said, whenever we take a photo he manages to stop crying and remove his soother, smile, then go back to being grumpy. Even on steroids, he manages to be cute. Ridiculous.

GVHD was what we wanted in this last gasp treatment, so that's good. What's not good is that further tests on his brain suggest it's not leukemia, but probably a fungal infection up there. And the absolute worst thing you can do with a fungal infection is to add steroids to the mix.

But there's no choice. Fighting the leukemia (through GVHD) is far more important than the infection, even if it is in his brain. So we forge ahead and just hope it doesn't get too much worse.

Trish asked the doctor of on a scale of this sucks to this will kill Dominic, how bad is the fungal infection? The answer was not good. So he's basically now fighting leukemia, GVHD and the fungal infection. It's a trifecta of awful.

He even needed extra oxygen to deal with his cold, but that's gone now. So too is his NG tube, because GVHD happens in the gut and you can't feed him normally anymore. He gets his nutrition through his bloodstream now.

But we're together again. So as bad as everything sounds, today's actually pretty good. Take that for what it's worth.

1 comment:

  1. So, so, so, happy to see a photo of 3 of you together! :-) Your strength is amazing and being together will make it 100x or more stronger! Dom is in the best place in the best hands, doing everything possible for him. I hope for your that the worst thing to deal with is roid rage. It will all be worth it.

    Keep smiling!