Gamma Rays Kill Hair

Let me start with some fantabulous news: we have several excellent cord blood matches for Benjamin! So that means that now we just have to wait for his counts to come back up to determine technical remission (i.e. blast cells under 5%). When the doctors know that the cancer is in check (hopefully in the next couple of weeks), the transplant process will start. That will involve visits around the hospital so that each specialist can sign off on Ben's overall good health, before a last blast of chemo followed by full body radiation to completely eradicate Ben's immune system. This is the point of no return, because at this point he will be completely defenceless until the transplant of the new immune system through the stem cells from the cord blood. And Benjamin will be living in almost total isolation, with only a handful of people allowed in his room ever - a classic case of bubble boy looking at the world through the window of his fish bowl.

But that's jumping the gun. On Wednesday afternoon last week we went back up to the General for "mapping", since it had been decided that some radiation specifically on the brain would be required before the transplant process. Basically Benjamin was knocked out (again!) so that they could do a CT scan to see exactly where to aim the radiation and a mask was made to hold his head in place during the planned radiation, with target marks on it. (Makes you wonder what they did during the emergency radiation.) This mask makes it look like all Benjamin is missing is his chainsaw - I'll see if I can get a picture of it.

Radiation therapy proper started Tuesday morning. Every morning at 7:30, Benjamin gets strapped to a stretcher and driven up the hill with a team of 4 people and either me or Roger. We know that this is just part of our routine, and there is nothing urgent or immediately life-threatening about it. But the sight of our little procession is quite startling to many people. After all, what would your reaction be to seeing a small child on a stretcher being wheeled through an adult hospital followed by people in scrubs. "How bad is it that he can't go to the Children's?" Benjamin loves the ride and is already calling out "Car? Car?" as he's being wheeled through the halls. Unfortunately, he's only awake for the ride up. But once we're there, and while we're waiting for the doctor to arrive, Ben starts flirting with the technicians. After only two treatments they are all already in love with him. And when he wakes up in recovery he's ready to go. Yesterday he tried to climb out of his bed and walk within five minutes of coming out from under. We hope that Ben will only need one week of radiation, and they are planning another MRI next week to see how things have progressed and a decision will be made then.

One very real side effect of the radiation is hair loss. In fact it looks like Benjamin has a receding hairline due to the radiation being concentrated there. I'm not ready to lose his beautiful hair again, and since the chemo didn't seem to be doing anything, I was hopeful that we would keep it. Instead I'm bringing in the trimmer again, even though I'm in denial. I guess that even though I accept the situation we're in, I just don't like the tangible proof. Last Thursday I decided to return the outfit and shoes I had bought (ironically on the same day that Ben's seizures started) for Ben to wear at my brother's wedding. I had been putting it off because of the finality of that gesture. By returning the stuff I was giving in to the reality that Benjamin would not be able to take part in this special day. But there's still a teeny part of me harboring the hope that a miracle will happen in the next week and his counts will come up high enough to get a day pass to at least make the ceremony. (Reality check - the doctors would never allow us to take him to Ottawa!) Just as well - he'd probably be completely uncontrollable and cause a scene. At least in his hospital room we can contain him - somewhat.