Friday, 23 May 2014

Knowing is half the battle

The plan, we thought, involved a 36-hour drug treatment every three weeks until September and an undefined time to go back to Medicine Hat.

Then the doctors told us Dominic had to come back next week for his next dose of rituximab.

Well that's odd, we thought. What happened to every three weeks?

At the start of his chemotherapy way back in September our main doctor sat down with us and walked us through it. Four cycles, weeks between each for recovery. The stack of papers detailed every drug he'd get and what the likely, possible and rare side effects were for each. It was clear, honest, and also pretty daunting.

But as the treatments went on we at least had a road map. There was no guessing.

When he was diagnosed with PTLD earlier this month, we never got a road map. His reaction to rituximab and subsequent trip to the ICU was chaotic, and each doctor seemed to think the other had shown us the plan.

So here's a lesson: If they don't show you the plan, ask to see it. There's always a plan, and it's always on paper. Yay beaurocracy.

Dominic finished his second dose of rituximab like a champ this week. His energy levels are on the rise (even though his blood counts aren't) and a lack of any other symptoms led to us getting a night pass to stay at Trish's parents house Thursday.

Before we left the hospital Thursday we sat down to figure out the plan. As it turns out, it's better than we thought. He gets drugs until September, sure, but only rituximab for the next four weeks. After that the only time Dom needs to come to the hospital is for a low dose of chemotherapy once every three weeks — he'd have to come back that often for routine check-ups anyways.

The best news is that the PTLD doesn't have any impact on his bone marrow transplant prognosis, which means Day 100 — the day after which he can presumably be more than a half-hour away from the hospital — still stands. They really might be home in June after all.

This morning we returned for a last checkup and to be discharged once again. For this entire stay Dom's been confined to his room on isolation, which wasn't a big deal until he started feeling better last week. Well, wouldn't you know it a doctor comes into our room sans mask and gown and says "Do you know what this means?!"

We literally got discharged and off isolation at the same time. Just to make it worth it we let him roam the hallways and play with the nurses before heading out.

I packed the car; he giggled as I lifted him into his car seat. I pulled out of the parking spot. The phone rang.

"We need you to come back in. His blood cultures showed low levels of potassium. We need to re-draw the blood sample and might need to give him fluids."

It wound up being a false alarm — the next blood sample showed no problem. Sometimes all you can do is laugh.

3 comments:

  1. You are all so amazing.
    I'm hoping you can sleep in your own beds very very soon!

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  2. So encouraging to read about Dominic's progress! Thank you for sharing YOUR story; it's given us the opportunity to feel as if we are going into our daughter's transplant with our eyes wide open... Enjoy your time away from the hospital with your MVP! ~ Jade's Mom

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  3. Your post has made my weekend! I have no son of my own and I have never been so emotionally invested in a little boy. Looking forward to hearing his white cell count has stabilized and that you are heading home!

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