Two Parties and The Talk

June has just been packed! This has been the first time in the last couple of weeks that I've actually had the energy to want to blog. One of the reasons is that we are suddenly the parents of two children again. Last Thursday, as I was on my way home from work, my cell phone rang. It was the 8D receptionist advising me that Benjamin was ready to be discharged! Well! Since we were meeting Ben's primary doctor Friday morning for "The Talk" (more on that later), we asked that we only be discharged Friday. That bought us enough time to tidy the house and start emptying Ben's hospital room of the flotsam and jetsam which invariably accumulates over a 4 week stay. But all this to say that Ben has been home since last Friday, and will be readmitted to the hospital on July 2nd, when his "conditioning" starts. We are restricted in what we can do at home however. Even Emily has had to be isolated to a certain extent, and missed her first week of swimming lessons, to avoid bringing home any unwanted "guests".

We were able to get in a birthday party for her this past Saturday. We shipped Benjamin off to Nonna's house for the duration and welcomed 12 children and their families into our backyard. We set up the "big" pool, barbecued, and had a Disney Princess piñata. Emily had a blast, and she deserved it since last year her birthday celebrations were also curtailed by Benjamin's (then unknown) medical condition. We weren't going to let that happen two years in a row.

The week before (Father's Day weekend) we were in Ottawa for my brother's wedding to his long-time girlfriend. Emily took her role of flower girl very seriously - until about 1/2 way through the ceremony. But it was a beautiful weekend, and even though Benjamin wasn't with us, it was still nice to get away and take part in such a happy occasion. The bonus was that instead of a traditional reception they decided to treat their nearest and dearest to a night at the Chateau Montebello, including a swank dinner in the fabulous dining room. Since dinner was late and Emily had already partied hard the night before at the party after the rehearsal, we arranged through the hotel for a babysitter to stay with Emily after we put her to bed. This allowed Roger and I to relax and enjoy the evening.

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"Yeah, yeah", you're all saying, "get on with it. What's up with Benjamin?" On Friday we had a two hour meeting with the doctor in which he spent the first minute expressing his optimism about the upcoming procedure, and then the next 119 minutes detailing the actual procedure and everything that could possibly go wrong with it, both short-term and long. Even knowing what we were getting into, I walked out of there shell-shocked and discouraged. It didn't help that after all this talk of potential relapse even after the transplant, one of the new patients on the floor was actually an old one. A boy who had undergone a bone marrow transplant this time last year (and who we know well), was admitted with fever and an infection, and wonky blood counts. As far as we now know everything is fine, but it was still a shock to see him on the floor again, a confirmation of future uncertainty.

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The procedure starts with conditioning, which is a countdown to transplant day. On July 2nd (T -7) we are admitted and immediately start total body irradiation (TBI) twice a day for three days. On day T -4, Ben starts 3 days of chemo. On T -3, he also starts three days of antithymocyte globulin (ATG) to help with the suppression of his immune system. And on T -0 (July 9th), Ben gets stem cells pushed in by IV over about 10 minutes and it's done - except for the fun part! All we know about the donor cord is that it is from a girl in the southern US who was born on Oct. 30, 2002. Her blood type is B positive, which means that Benjamin's blood type will change from A pos to B pos. And Ben might grow up to really like shopping. No biggie - long term effects of all the radiation and chemo include almost certain sterility and possible stunted physical and mental development.

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So on that note, we will enjoy this last weekend as a family together before the transplant, even in our semi-isolation. We will probably also have a family gathering to celebrate Ben's birthday in advance, since he will be behind glass when he turns two later in July. And if I don't post before we go in, Happy Canada Day everybody!

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.