Wednesday, 30 October 2013

Reality check


When the leaves were turning colour we called it pretty. When they fell around us we danced. But now they're on the ground needing to be raked, and the trees are bare.
So it is with Dominic's leukemia. After receiving the good news of remission a week ago, we've since had our joy tempered by bits of hard reality.
It turns out 90 per cent of kids achieve remission after the first round of chemotherapy, as Dom did. It's still good news but far from miraculous. A separate test known as Marginal Residue Disease turned up nothing either, which is great too.
Then we found out some additional information on exactly what kind of leukemia he has.
We've known from the start that it's Acute Myeloid Leukemia, meaning that white blood cells were developing into cancerous cells instead of the cells that help prevent disease and infection. We found out later that it's subtype M4-5, which honestly doesn't mean much to us or change much for the doctors.
This week we learned more specifics. No, this won't require a biology lesson because, frankly, it's way over my head. Apparently Dom's cancer started due to a 7/12 chromosome translocation. That may mean something if you're a doctor, but the cliff notes version is that it's extremely rare and makes the cancer more aggressive.
Aggressive. Dangerous. Deadly. Right, like normal leukemia wasn't all of those things anyhow.
What we have to remind ourselves is that our boy is still happy, his treatment is still going well and this news shouldn't change anything. He's still in the perfect place to get better, still getting scads of support. But I won't lie and say it's easy news to take.
Trish and Dom went back in to the hospital on Tuesday to begin the second round of chemotherapy. He's now hooked up to an IV for the next eight days, 24 hours a day. Plus he's got a slight runny nose which means he gets put in isolation and can't roam the halls like he used to.
Nurses were thrilled to see him. "It was like coming home almost," Trish told me. "Nurses came by to say they missed us."
Everyone's dressed up for Halloween today, including the staff. Dom? He's a dinosaur. It looks great but I can't help but think back to another child I remember who dressed as one.
My first job after leaving journalism school was in Wetaskiwin. In June 2001 I did a story on Brendan O'Callaghan, a young boy who was diagnosed with leukemia.
Brendan's family and friends were having a party to celebrate his remission. The story revolved around how he loved dinosaurs and always acted like one when nurses came to his room. It was how he coped.
Family opened up to me, some of them crying during interviews. I tried to do the story justice and am still proud of it.
That day when I visited, Brendan was dressed in green as a stegosaurus. Dominic's costume? Green. Stegosaurus. Uncanny.
Every year or two I look up the O'Callaghan's - unbeknownst to them - to see how their son is doing. They started Short Cut to the Cure, which has raised hundreds of thousands of dollars for a cancer centre in Edmonton. Judging from recent news reports Brendan appears to be in Grade 12 and is on his school's cross country team. He's doing great.
Hopefully Dom can follow in his footsteps. And this weekend we're following in the O'Callaghan's footsteps, raising money for the Alberta Children's Hospital through Extra Life, a 25-hour gaming marathon. You can visit www.extra-life.org and search for me if you're interested in sponsoring.

1 comment:

  1. Sean and Trish. One day at a time. One minute at a time. That's all you need to look at. I have a great-niece who had a rare form of leukaemia for children (CML) at the time she was diagnosed. The staff at Alberta Children's Hospital said in their lifetime they would never see another child with that kind of leukaemia (sadly, they were wrong as there more cases) Her treatment was a bone marrow transplant and even with her brother donating, and being a perfect match, there was still only a 25% chance of survival, so "they" said. That was in 2005 and this past year she graduated from Grade 12 and has no signs of the disease coming back. Stats are that, stats. I do believe in full disclosure of information. Dom is a person, not a number. He will be the one to turn the stats upside down! It's OK to cry and be scared. It's OK to not always smile and be positive. Don't borrow worry you don't need to have. Lean on others. You are already making a difference in the lives of many people. You are in the thoughts and prayers of many.

    Love, light and healing to Dom, you and Trish.

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