Thursday 20 November 2014

Head case

I thought about writing when, less than 24 hours after posting that Dom was off of isolation, he was put back on it again. They mistakenly acted on
a preliminary test; the official one was positive for a cold virus.

I didn't want to share more bad news, but sometimes you've got no choice.

This is another of those times.

After a largely uneventful week of gut rest (crackers and diet ginger ale by the caseload), Monday was time for another MRI to see what was going on in his head.

Problem was, nobody communicated that there was no anesthesiologist available that day - or any Monday, for that matter - to do the procedure.

So on Tuesday, he was put to sleep, scanned, had a lumbar puncture done and got his NG tube back. And while his gut seems to be doing well, his head isn't nearly as hopeful.

The problem with the diagnosis of his brain problem is that they've never known for sure what is wrong. Initially they suspected leukemia. Then they were convinced it's a fungal infection. So they've been giving him drugs that should wipe out the infection.

Except that Tuesday's MRI showed whatever's up there is now bigger than it was before.

Now they're back to not being sure about anything. So now, it looks like Dominic may be headed for a brain biopsy.

They're going to cut open his head and take a sample. Even then there's no guarantee they'll figure out what's wrong for sure, and the potential problems it could cause are many, but it's worth a shot.

In the meantime we await word of whether the DLI procedure (the one that gave him graft versus host disease to combat the relapsed leukemia in his blood) is having any effect. If it's not the brain biopsy might be pointless.

Already the issue in his head is causing problems. He still isn't using his right hand properly, and now has issues with his right leg. Both are believed to be caused by what's in his brain, which is on the left side near where motor skills are controlled. The hospital is sending therapists to try and help him, but it's a moot point if the brain issue isn't fixed.

We try to stay positive, but it's been more than a year and it only gets harder. And then I happen to run in to another person I know from Medicine Hat at the hospital while we're headed out for a break.

"Well this certainly isn't a place I'd ever want to see you," I remarked.

The parents looked like they'd been crying.

"I hope there's some positive news ahead for you," I said.

No. No there's not. Their child is gone. I don't know why, or how, and they certainly didn't want to talk about it.

"You of all people would understand," the father said.

No, I wouldn't. My son is still alive. I dread ever being in his shoes.


  1. Oh Sean. What a journey. The good news is Dom is still in the game. Amazing things can happen when treatment is directed at the right culprit. Once they get confirmation of what's happening in the brain and can treat it, a lot of other things might get better, too.

    It's kind of funny to see Dom with hair - he is so cute! And he keeps on smiling. What a kid. :-)

    You and Trish have had incredible strength and courage during this past year and more. I don't know how you have done it. I do know you will continue to have the strength you need for the future. There are people around to help on the days you might not feel strong, or need a rest.

    Sending best wishes, healing energy and positive thoughts for this to be the start of the treatment and recovery for a cure!

  2. How I wish I could take the burden of the past and the future off you and Trish and Dom. I think I understand how depleted you are from the prolonged, exhausting year behind you, and now you are having to gear up for whatever is coming next. All I can do, as a complete stranger, is hope that it's good news. Which I do as hard and as often as I can.

  3. Awww. That's too bad about the isolation. And I hope they figure out the brain problem, and solve it soon. But whatever happens, please continue to share news if you can. I've been following your blog from the beginning, and I've vicariously shared and enjoyed all the happy moments. As much as I never want to hear bad news, hearing nothing would be so much worse. Thinking of you three and wishing you health.