Thursday, 12 June 2014

Baby steps

How was the weekend? It's a question I've been asked a few times since Dominic came home.

I struggle with how to answer it. It's been equal parts exhiliration, relief, fear, love... and complete boredom.

How was your weekend? Did you go shopping? Visit with friends? Walk the dog? Water the plants? Do laundry? If so it wasn't much different than ours.

On the other hand did you hook up the feeding tube every night? Cover your son's chest in plastic wrap and use waterproof tape around it so the line into his neck artery doesn't get wet during his bath? Safeguard the playground you visited with antibacterial wipes and nearly have a panic attack because there were so many people at Wal-Mart?

All of those things are fairly typical to our new existence as the transition away from Dominic's treatment and bone marrow transplant enters the home stretch.

We didn't think he'd be allowed in any kind of public situation for another couple months, but our doctors gently encouraged us to venture out a bit. Maybe not another kid's birthday party, but lunch out at a restaurant at 2 p.m. on some idle Tuesday? Perfect.

I walked him around the house. He chased after our dog Megan. Thanks to the gift of a shopping cart cover from my work, Trish took him shopping. Then we did a visit to a playground with other toddlers and friends.

Each milestone felt exciting, but uneventful too.

He got more comfortable with each passing day. Food remains a challenge but he started to eat better Tuesday.

Problem is he had to go back to Calgary and the hospital Wednesday for his second-last dose of rituximab. We hope his interest in food doesn't take a downturn again; his weight has fallen below 10 kilograms despite nighttime feeds through his NG tube.

Really though, his weight and lack of speech are the only notable challenges at this point. We got the results back from his latest bone marrow biopsy and they are simply stunning; no sign of leukemia and 100 per cent donor cells from the bone marrow transplant.

That bears repeating. Ever since his first round of chemotherapy way back in September, every test for the cancer he was admitted with has come back negative. This for a subset of acute myeloid leukemia (7:12 chromosome translocation) that had only a few documented survivors and a poor prognosis in any medical literature we found.

We know other children whose stories haven't been as happy. And we know the possibility of recurrence is omnipresent, especially in the next three years.

But darned if it isn't hard to feel like we're victorious right now.

1 comment:

  1. I pray the rest of your lives are filled with normal, routine things like shopping and errands. You've had enough adrenaline-fueled drama to last three lifetimes. I'm so glad you are all at home together.

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