Wednesday, 20 May 2015

Bruises


As part of a friend's bachelor party I played paintball for the first time Saturday.

One bruise. Giant, multicoloured, but painless. The groom-to-be wasn't so lucky.

Dominic hasn't played paintball. We get scared if he hits his head on something while standing up. Yet his body is littered with little black-and-blue marks.

That's what happens when you don't have platelets.

When he first started getting transfusions they could've come from anybody, and he only needed them once a week. Then his body started blowing through the platelets and we had to match him with specific donors. Four days. Three days. This week it's down to every two days. He'll be re-tested today with the hope we can find a better set of matches.

We came in once last week and his platelet count was two. An average person's count would be in the hundreds. So the bruises are no surprise. They're not as much a concern as what we can't see.

The lack of platelets makes the leukemia in his brain at greater risk of causing strokes or seizures. And then there's the other blood counts. The leukemia is growing exponentially now. Blasts of cancerous cells that numbered 0.04 or so a few weeks ago were 5.47 on Monday. His bone marrow is recovering and the cancer is coming with it.

All we can do now is try and slow it down. That means oral chemotherapy drugs, which thankfully we can get in Medicine Hat. These aren't drugs that will kill the cancer; it'll just slow it down.

At the same time we have to do more about the platelets than simply find better donors. So he'll get a blood product known as IVIG. He's had it before; it aims to stimulate more production.

If this push and pull seems confusing, believe us, we aren't sleeping well about it. What if the IVIG makes the leukemia worse? But that's what our doctors suggest, and we trust they're doing everything they can for Dominic.

We aren't sleeping well. The night before a trip to the hospital, Trish can't manage to turn her brain off. When I come home part-way through a shift at work to spend time with him I can barely keep my eyes open. Even he's been more grumpy this week, throwing tantrums at least twice a day. Part of that is the fact he's a two-year-old, but there's probably more to it than that.

Still, for most of the time he's still the happy, smiling boy who brings joy to everything he does.

Maybe that's all we can hope for. At this point, I'm glad for every day I can wake up and kiss every one of those tiny bruises.

7 comments:

  1. cute picture, he looks so happy and curious
    what a cruel and unfortunate hand you have all been dealt. Dom is so lucky to have you and Trish by his side each step of the way. I so badly wish you would get the miracle you deserve. thinking of you all and sending prayers.

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  2. I've read through this entry 3 times and maybe I'm feeling some anger today, but can't help but thinking how unfair this is. It makes me mad that medicine just hasn't figured it out yet, mad that it shows up in the first place and mad that Dominic has to go through this. I wish I could just turn an off button for you guys to just have an hour, day, week (or forever of course) of not going through this. However, I always smile when I see a picture of Dominic always with a big smile, and tantrums aside, I am amazed at how unphased he is with what's going on. That is a blessing. He truly is a special little man. You guys are amazing, even if it doesn't feel like it some days and if any little guy has to have this, you are the best parents there can possibly be. Thanks again for an update, it's appreciated more than you know.

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  3. I have been following little Dominics story for a while now. I am so sorry your family are going through this heartache. We were in exactly the same position in January this year- we know your pain and what it is like to watch the disease take over. Our little boy was 2 years and 10 months. AML is a horrible disease. Sending strength all the way from Ireland

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  4. Keeping Dominic & your family in my thoughts & prayers... Wishing you strength.

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  5. Your little family has somehow manged to cram a real life for Dominic into all the medical crap you've been going through, and his happiness is the payoff. You and Trish have made sure his cancer isn't what his life is about. Your journey is beyond brave, it takes way more than courage, and it's a privilege to witness. It's love, doing what it does best. Defying odds, making the most of time, and sticking it even when it's impossibly hard. That's parenting at its absolute finest, I think.

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  6. Keeping Dominic and your family in my thoughts & prayers. He's such a cute happy 2 yr old. Got to know about little Dominic and updates on his condition through Bethany Chapel in Calgary.

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  7. I think of Dominic and you guys every day and continue to wish you many days full of joy. I'm continuing to send positive energy your way.
    Kate

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