Thursday, 5 December 2013

To marrow

We saw this one coming. Both for him and for me.

As soon as the news came that Dominic has the incredibly rare form of Acute Myeloid Leukemia caused by a 7-12 chromosome translocation, more aggressive treatment seemed like an obvious course of action.

Today we got the official word that they want to do a bone marrow transplant. It's invasive, dangerous, and means we'll be spending at least another six months here at the hospital.

I suppose we technically had the option of saying no and pushing ahead with the last half of his chemotherapy on its own. But when you read a study that has 10 kids in it and the only one who survives had a transplant, it's tough to ignore.

There is a new study that had three of seven kids survive, but even then two of them had the bone marrow transplant.

The first question we had was if he's in remission, why should we worry? Our doctor compared this leukemia to an iceberg, where the tests that give a diagnosis of remission can only look at the visible iceberg. There's inevitably a lot more below the surface that can't be detected.

OK, so we need to be more aggressive if the cancer is. Trish got her blood tested this week to see if she'd be a donor match, and I went today to do the same.

One little problem with that. I have a long, sordid history with needles and fainting. It's been a big deal to get my flu shots the past two years without passing out. And it's purely psychological.

I knew I was going to faint today. What I didn't expect was that I'd have a seizure and stop breathing for 30 seconds. Not so fun for anyone involved. The worst part is they didn't get the blood.

Truth is there isn't a high probability of either parent to be a match. One doctor jokingly mentioned that we'd have a great chance if we were related. As in, cousins. Um, no.

We immediately had friends and family asking how they can be a donor. While that's amazing, we have to caution anyone who wants to do it that you can't just walk in to the hospital and say you want to donate your bone marrow for Dominic.

After immediate family are tested - Trish and I - everything goes through a bone marrow registry. You can't get pegged to donate for a specific person. So if you decide to sign up, you'd better be signing up to be a donor for whoever winds up matching you. Imagine being a parent who gets news of a match, only to later have it fall through because the donor only wanted to help someone else.

It involves plenty of screening and blood testing, then surgery and a painful recovery.

Still in? Maybe you are his match. But it would be just as special if you could save another child's life too. Here's the website where you should visit to get started: https://www.blood.ca/CentreApps/Internet/UW_V502_MainEngine.nsf/page/E_ubmdrPKG-intro?opendocument&CloseMenu&p=OMSplashJoin

4 comments:

  1. Sean, Trish and Dom,

    I am inspired by your courage, persistence and humility. Each step is a step closer to Dom beating this. The bone marrow transplant evidence you talk about is encouraging. It sounds like it will be a long road, and one, years from now, that will become a blip in time when you, and Dom, look back at it.

    One day at a time, one step at a time, one minute at a time. Stand tall and firm.

    May you find peace, joy and hope in each day.

    Take care,
    Lorna

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  2. Step by step you guys.
    I'm sorry to hear of your incident Sean, yikes!
    Thank you for posting the bone marrow site (& the seriousness of the commitment of it).
    Stay strong Dom!!

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  3. I have been on the registery since 2006 and I would love to be a match for Dominic! Fingers crossed. Praying for your little man.

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