Thursday, 17 April 2014

It's not goodbye, it's see you soon

September 12 was a typical fall day, a bit of chill in the air but also plenty of sun.

We'll go see the doctor, we thought, get his problem figured out and be home in an hour.

An hour became a day when we were sent to the Alberta Children's Hospital. That night we found out Dominic had leukemia and a day became weeks.

Weeks became months when it turned out his type of disease was acute myeloid leukemia.

And when it turned out he had the rare 7-12 chromosome translocation (which came with a "poor prognosis"), months became, well, more months.

This hospital has become our second home. Yes, we've been back in Medicine Hat for a couple weeks but the far more common routine involves the room I'm sitting in now.

There's wallpaper trim with stenciled animals on it, a 30-year-old television, the remote control on a cord which turns it on and also can signal nurses to come at a moment's notice.

The couch doubles as a bed and would be awful if not for the thick foam mattress we got for it. The walls would be forgettable if not for our photo collages, a signed poster and the giant wall chart where we write his daily weight and blood counts.

The stack of medical pumps and monitors is a mainstay. His walker sits ever-ready under a chair near the door.

Staff are in and out constantly, whether delivering medicine, weighing his diapers in the bathroom or emptying the garbages. The nurses know us all by name and love to say hi even if they're not assigned to Dom for their shift.

It's hard to imagine this is the last night he may ever stay here.

We've been talking about it for weeks. First his liver problems cut those thoughts short. Even this week, when it seemed certain he'd be out by tonight, adenovirus showed back up in his bloodstream (even though he has no symptoms). Our first thought was "oh no, here we go again."

But no, they still want to discharge him. Saturday. And he'll get an overnight pass Friday to stay at Trish's parents place, so tonight should be it.

No coming back for another round of chemo in two weeks. No bone marrow transplant - he's done that.

It's not as though he's done with the hospital. Far from it. Four days a week he has to come to the unit's clinic, probably for six or seven hours a day to get medication and fluids until the adenovirus is gone again. But the other 17 hours a day he's free, with the typical myriad exceptions anyone with a low-functioning immune system has to follow.

Long days will turn into shorter ones. Then weekly visits. By June we hope to be back in Medicine Hat, but he'll still return for monthly check-ups.

He got his broviac line replaced after all, but only because he was put to sleep Wednesday for a bone marrow aspirate anyhow. He still has an NG tube, which will stay in for the time being as he's not quite eating enough on his own.

We fully expect that to change once he's out of the hospital. It's exciting, and a major milestone, but it hasn't hit us yet.

Saturday will be special. We'll say goodbye to this room, these hallways. But many of the nurses are already reminding us that we have to visit too. They'll miss us, and they have become understandably attached to Dominic.

Of course we'll be back to say hi. We'll miss them too. Just like this place became our second home, they've become our second family.

2 comments:

  1. Sooooo fantastic you guys!
    I hope you have a wonderful Easter weekend.
    Great news indeed!

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  2. Wow! More tears of joy for your family. The ACH is an incredible facility and I know that it will remain close to your hearts for years to come. The TV remotes are brutal tho eh ;)

    What an amazingly brave journey your family has been on.

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