Thursday, 20 February 2014

Bone marrow camp


Good day sir, and welcome to bone marrow transplant camp. This will be both more difficult and far simpler than you might have imagined.

First, a bit about relativity. This is not Thursday. It is Day minus-5, you started with us on Day minus-7 and we'll count time like this for the next few months. Yes, I said months. We'll get to that later.

Though you've been through four rounds of chemotherapy, you may have noticed the drugs you're getting for this one are different. That's because we're worried your cancer may start to adapt to those other drugs and we really need to get rid of it. These are more harsh but you're a trooper and had minimal side effects from the other ones.

Just in case though, we're giving you other drugs to prevent some of those side effects. And naturally, these drugs have side effects of their own, like potentially changing the colour of your skin in some areas and growing hair where there was no hair before. When you get to sex ed class in elementary school you'll be all like 'been there, done that.'

This, plus the radiation you've received (and will receive more of on Day minus-1), is designed to wipe out that nasty leukemia you've got once and for all. And to open your body up to receive bone marrow from a wonderful donor on Day 0.

That donor signed up to help, is a perfect 10-out-of-10 match for you based on the chromosomes we compare, and will start taking drugs today to prepare their blood for a six-hour-long procedure during which their blood will be collected much as if they were donating normally. The parts of it we need will be separated out and saved.

Once we transport it to you, you'll receive it in the same way you get a transfusion. It's just another bag on the IV pole, but of course this one is a bigger deal.

We hope the special bone marrow blood will eventually multiply and become your blood, as your body accepts it and replaces your old stuff (which had cancer in it anyways, yuck). If it resists, that's called host versus graft disease. A bit of it might be good in that residual cancer cells might fall victim too, but too much of it and we might wind up with a failed transplant. Nobody wants that.

Because we're setting your blood back so much to achieve this, you're even more prone to disease and infection than during your other rounds of chemo. So you'll be in isolation. I know you love roaming the halls, you did again today squealing with joy as you went. But maybe we can send in the music therapy folks with their guitars and chimes and bongo drums more often to keep you happy.

We need you to hang around the hospital until we're certain things are working as we hoped. Some kids stay in hospital afterwards for months. Even if you do get discharged in a couple weeks, you can't be more than a half-hour away from the hospital for at least 100 days. We have to be careful with this; it's your life at stake.

Through it all you're going to have a new diet. Sort of. You're not eating sushi at 16 months? No Brie, smoked salmon or raw eggs on your plate lately? You're not drinking water from a well at home? OK, this might be easier than we thought. But no deli items unless you cook the heck out of them, and no fresh foods unless they can be washed to a ridiculously high standard. If there is any chance it's been contaminated by people (bulk food bins, anything not deep-fried at a fast-food place), forget about it. And no more eating off your parents' plate. Don't even touch their utensils. They are dirty, dirty people.

A bit of good news. You're dirty, too (and adorable). So daily baths. It's more work but dirt is bugs and bugs cause illness and we need to prevent that.

We trust that you'll enjoy your time in camp. We're going to make a new boy out of you. At ease.

3 comments:

  1. Thinking of you and sending the BEST thoughts and wishes for a smooth transfer and also continued strength! We believe in all of you!

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  2. Sean - thank you for sharing some of the most personal part of your family with us. So many people are with you in mind and spirit, praying for your baby, and thinking positive thoughts. I feel very privileged that you share this journey with us. All my thoughts and prayers - your volleyball friend.

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