Details, Details!

I think that I can honestly say that the last post was the most difficult one I've ever had to write. And not because of the situation itself, but because of a completely irrational feeling that we've disappointed people. I can hear you all screaming that I'm being an idiot, but a part of me can't help thinking that with all this massive support we've had behind us since day one, we should have done better. And we've already taken everybody on this emotional roller coaster of cancer; it's not fair to ask it of you again.

In earlier posts I wrote of the fear of relapse and how other families were dealing with it, and how I had no idea how I would handle it if it came to that. Well now I know - but I still don't really. We were so sure that Benjamin was finally out of the woods that we were planning camping and road trips for the summer. Benjamin was finally going to get his much-longed-for pool time (boy, did he love that in Florida), and many bike rides sitting high behind Daddy (another new and exciting experience). But as soon as he collapsed on the grass in our backyard, I knew there was something very wrong, bigger than just a seizure. That night as I waited for Roger to call with news from the hospital I cried, probably more in those hours than in the entire length of the previous treatment.

But life goes on, and the next day was Emily's special day at preschool. So, once again I switched to coping mode (the new default in my automatic pilot), and tried to ensure that Emily still had fun. And that's where we are right now. We're still trying to come up with a routine which will not disrupt Emily's life more than it already has. The difficulty is in getting her to understand why Benjamin can't come home again, and why we can't always be there for her. I feel so sorry for her, because she certainly doesn't deserve this. She's such a trouper, but even troupers have their limits. If I could clone myself to be in two places at once, I'd do it in a heartbeat. (Emily, if you're reading this years from now: we're sorry, it wasn't your fault or any body's & we did the best we could.) And it's only going to get worse. Once Benjamin is in transplant, the siblings will only be able to communicate through a window and phone (just like in a jail). Besides staff, only Roger and I, and one or two designated alternates will be allowed into his room.

Which bring me to the initial point of this post: details. Benjamin has already finished his chemotherapy, and his counts have already dropped. When they go back up to normal or near-normal levels (in about 2-3 weeks), the doctors will re-assess the level of remaining cancer through another bone marrow aspirate. In this time, Benjamin's HLA typing should have been completed and a search will have started through the registries to find a compatible donor. The doctors are confident that a match will be found either through the cord blood bank or the donor registry, so I'm not putting out a call to arms yet. But for anyone interested, I've posted a link to the Hema-Quebec website at left; they go into much more detail about the actual process. A decision will also have to be made with regards to the rind on Benjamin's brain if the chemo has not removed it. Radiation therapy is a part of the preparation for stem cell transplant, but some extra radiation might be required. In fact, if everything goes well from here on in and a match is found quickly, we could be in the transplant process within the next month. Here's hoping.

But in the mean time, tonight I've got to make lunches, pay bills, do the recycling, and get some sleep. In three weeks, within three days of each other, we have my brother's wedding in Ottawa, Father's Day and Emily's birthday, all of which require some sort of attention. At this rate I'll be dealing with my emotions on Ben's relapse in 2012. Life most certainly goes on.