Wednesday, 21 May 2014

Exhausted

I'm not the one with cancer. Neither is my wife.

But of course our lives were also turned upside down eight months ago.

Instead of going back to work following maternity leave she applied for extended employment insurance for parents of critically ill children - a benefit we're grateful for but is about to run out.

I modified my work schedule to be four days a week, but realized recently I'd actually been working a couple hours of overtime every week. After finishing my shift at 11 p.m. every Wednesday I drive the 300 kilometres to Calgary, then back to Medicine Hat Saturday.

Some days are easier than others. When Dom was in the ICU we took turns staying in the room with him. You don't sleep too well in that situation, so inevitably we'd also need a nap the day after.

Thanks to family we do manage to get out for a 'date night' every week, which basically means dinner out. Maybe a movie. Trish goes swimming at the YMCA when she can.

When he's sleeping a lot and low on energy - or energetic and happy enough to wear himself out quickly - the days are easier. But it's still far from ideal spending your days in a hospital, constantly on edge about what's going on and what could be next.

After nearly nine months, it's flat-out exhausting.

It's been a week since Dom started the protocol to drop his morphine addiction. They've slowly reduced the dosage and it should end today. Meanwhile he's mid-way through another 36-hour dose of rituximab (which put him in ICU a couple weeks earlier).

It's been a good week, for the most part. He needs little oxygen anymore, has finished most of the antibiotics he was on and even gets to have daily baths because so many of his tubes can be disconnected.

On the other hand he's still not eating and recently had some symptoms which worry us.

A fever meant more precautionary drugs and an X-ray. Low blood counts - which are common following chemotherapy but not three months after a bone marrow transplant - require a blood booster known as GCSF. The problem with GCSF is it could instigate the growth of cancer cells as well.

We deal with every new hurdle as it comes, trying not to think too far ahead. But with his bone marrow transplant it was hard not to have the date of June 6 circled. That was Day 100 - the time at which a transplant failure becomes far less likely. Typically once you get to Day 100 you no longer have to stay within a half-hour of the hospital (or in Dom's case, in the hospital due to other infections and emergencies).

It was the day Trish and Dom could return to Medicine Hat. They haven't been here since February.

I started talking about having a welcome home celebration. I called a carpet cleaning company and an idea was floated about a cleaning bee. With an immuno-compromised child you can't be too careful to avoid the house being dirty.

The latest ICU visit ensured they will not be home June 6. Maybe not even July 6. And even once they are, the 36-hour rituximab treatments will require a stay in the Alberta Children's Hospital every three weeks until September.

Seeing the light at the end of the tunnel get further away is incredibly depressing. It may not seem like much at this point, but it's like being at the end of a marathon only to have the finish line moved another five kilometres down the road.

Some people ask us "How do you do it?" My answer is always "If you're in our position, you just do. It is what it is." It's sort of a non-answer.

The truth is, I don't know how we do it. We're stronger for it, certainly, but at what cost?

3 comments:

  1. Thoughts and prayers are with you. It's been such a long journey for all of you. I can't imagine the gamut of emotions that you feel on a daily basis. Sending positive and healthy thoughts to Dom. He's such a brave and strong little boy

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  2. Don't be too alarmed at the drop in blood counts as it is quite common. After my stem cell transplant for aml, I got these shots for a long time. Four years after the transplant, the counts are always consistently a little low.

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  3. The cost is oh so worth it as you know, Sean. Our children are precious bits of ourselves and we will do what it takes, sleep-deprived and all, to protect them. I'm sorry to hear of the setbacks but there is still a light at the end of the tunnel. The marathon has gone from a normal to an iron-man but there is still a light and hope and Dom to guide you to the finish line. As I read this blog, I wonder too at how you guys do it but I could never ask the question. I know that it's what any of us would do for our children. You find a way.

    Our thoughts and prayers are with you, Trish and especially Dom. May that light grow bigger, stronger and day-by-day get closer to the end.

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