Monday, 8 December 2014

What goes up

Of course we'd get terrible news the day after our unforgettable experience.

I'm back in Medicine Hat tonight, because we're not doing a brain biopsy Wednesday. We're not doing a biopsy because the hospital's top neurosurgeon is convinced he knows what's going on in Dominic's head.

He thinks it's a tumour.

My initial reaction to that news was that this is it. Cancel the drugs, because the leukemia's going to win.

But the doctors explained it's not that cut and dry. It's not good, and his prognosis is still poor, but it doesn't mean our last attempt at treatment failed.

The T-cells that caused graft versus host disease that have Dominic in a sort of remission only targeted his bone marrow. Unlike traditional chemotherapy, however, they don't do anything for his brain and spine. The body is set up to keep the circulatory system apart from the central nervous system, so it's possible the leukemia causing problems in his head can be wiped out separately from the stuff in the rest of his body.

Most people's first thought is OK, he'll still need brain surgery to remove the tumour. Not so fast. Because Dominic's blood counts remain low - he's received 21 platelet transfusions in the last month - you can't just cut open his head without a major risk of a fatal hemorrhage. Even if you bump up his platelets, they keep falling off and as soon as they do, the risk is too great.

The neurologist also thinks there are smaller, hard-to-see tumours on the other side of his brain. Ones you couldn't exactly cut out anyhow.

So he's going to need radiation. Lots of it.

Instead of trying to figure out for sure with a biopsy, this week will now be spent preparing for how to treat it. He'll have another MRI, and we'll find out the ugly details of what we can expect and when.

If he does survive, his future with the effects of radiation will include stunted growth, cognitive issues, and lots of therapy.

But he's a fighter. We're still fighting, at least until the doctors tell us there's no point. And they made sure to say that while this is all uncharted territory from a medical standpoint, they're not ready to call it quits either.

There's still a chance. There's still hope. It's all we've got.

5 comments:

  1. Sean, what ever happens from here just remember that your little boy is a shinning light. He lit up the room last night with his smiles, giggles, high fives and hugs. He has such an amazing spirit. If anyone can come through and surprise us all it will be him. Keep your hope..and we'll do the same for you.

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  2. Keep fighting. Know that you have a giant community around you fighting along side of you however we can. We will continue to hope, pray and walk with you in this journey. Those Dr's are amazing. I have watched them spend countless hours with my family and working with my kids to provide them with a better quality of life and they really do care about Dom and your entire family. Trust their plan.

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  3. I so admire and honour your decision to fight this with everything you have. You are making sure wee Dominic has every possible chance at a cure, and he deserves nothing less. Based on what he's already overcome, and his heroic character, I suspect he won't let stunted growth and cognitive issues stop him. What a team you all are. Fingers crossed that the radiation stops those damn tumours cold.

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  4. Our prayers for all of you continue.

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  5. When we get down to Unit 1 there I think Bellas just gona brighten Dominic's days and they are gona party and have fun while they grow strong and eventually get better, enough to go home! I know it in my heart. - Kyla Thomson (Bellas mom)

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