Wednesday 18 September 2013

The longest day of our lives

Friday the 13th. My grandpa was born on a Friday the 13th, so I never associated most of the bad things that popular culture does with it.
So much for that.
We are living a nightmare. Yet, for some reason, we don't cry a whole heck of a lot. My theory now is that anybody confronted with such a serious situation has no choice but to buckle down and fight through it. You either do that or you break down.
After the initial diagnosis things kept happening fast. Dom couldn't sleep more than a couple hours at a time, mainly because of how he likes to sleep — both arms behind his head as though he's at a beach. Unfortunately his left arm was wrapped up with an IV line underneath it so that was out of the question.
There is a better way to get fluid and drugs in to a kid than an IV, however. It's called a broviac line. What is a broviac line? Well, it's basically this gigantic tube that hooks in to the main artery in your neck. It's like a direct line to your heart. You need surgery to get it and the line exits out through the right side of your chest.
Before Dom went in to surgery we met with one of the doctors. He could now tell us Dominic has Acute Myeloid Leukemia and exactly what that is. But first, a little biology lesson.
Your bone marrow produces blood cells among other things. In the case of AML, the white blood cells (which normally fight infection) don't develop properly and resulting cancer cells overwhelm the bone marrow. Suddenly red blood cells and platelets aren't even being produced. It's bad news.
How do you treat AML? With a lot of drugs. Hardcore drugs. Drugs they most certainly did not have in the '70s.
See, 40 years ago a leukemia diagnosis was a death sentence. Nobody survived. Now Dom's prognosis is 60 to 70 per cent for survival. There's only one outcome on our minds, of course.
We spent an hour going over all of the information about how to treat AML and whether we'd like to participate in a study that proposes to add a trial drug to the mix. Already he's going to get 10 days of chemotherapy to start, receiving medications that aim to wipe out all of the bad cells in his marrow but could also render him paralyzed and blind. That's a worst case scenario; much more likely is a bit of vomiting and mouth sores.
Now we had a timeline. Ten days of chemo, followed by a few weeks of recovery. A few days out of the hospital. That's called a cycle. Four cycles. Add in typical delays and expected complications.
Six months until Dominic can come home.
Our night wasn't over. When Dom woke up following the surgery, he had problems breathing and needed another tube down his throat. He got fluid in his lungs from it and suddenly had a whole other batch of problems to deal with. Like the kid's got enough on his plate.
But the nightmare was subsiding. Now we could start fighting back.

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