The Bubble Boy Cometh, or the Sweet Smell of Success

Benjamin reeks. He is at this very moment exuding from his every pore an odor which I can only describe as a sickly sweet mix between rotting orange peels and formaldehyde. This is a common byproduct of stem cell transplant and comes from the preservatives which were used to store the cord blood. Apparently it is worse in bone marrow transplants because more preservatives are needed. But it will dissipate in 24 hours. Yes, faithful readers, the deed is done. At 11:44 this morning the stem cells were pushed into Benjamin's blood stream (that's them in the jumbo syringe in the picture). The entire process took all of 8 minutes, and by 12:15, as Roger and I were getting Ben ready for his nap, I was already wrinkling my nose in confusion. So far so good, as Ben is doing really well.

It will take 2-3 weeks for the stem cells to take. In that time Ben will be getting regular transfusions and shots of G-CSF, which stimulates the production of neutrophils, and he is supposed to start showing signs of fatigue. That hasn't happened yet - in fact Monday night he was up until 3AM! I gave up trying to deal with him at 12:30 and went to go sleep on the leather love seat in the parent's lounge - very comfortable! During the day, we have to spend most of the time chasing Ben with his IV pole as he travels around the room. The worst was this past weekend, because not was he trailing several IV lines, but he also had a catheter inserted Friday evening. And the line from diaper to collection bag is a lot shorter than his IV lines, and a lot less forgiving. Imagine running past the end of the leash when the leash isn't around your neck but stuck up your ... you get the picture.

Other than the catheter the conditioning process went well. We arrived at the hospital on July 2nd, and Benjamin officially became a bubble boy. He was not allowed out of his room except for the radiation trips and his daily bath, carefully timed for when housekeeping comes to clean his room. Only 5 people other than staff are authorized to enter his room, and only under strict sanitary conditions. He and Emily can now bang on the window separating them (which they do with great glee). The major incident during Ben's radiation treatments involved technical difficulties with a sticky stretcher outside the Montreal General. Luckily we were able to quickly commandeer an Urgences Sante ambulance to take us back down the hill. But otherwise, I got a couple of hours a day to work on the communal jig-saw puzzles set up in the radiation waiting room. In fact I developed a reputation with the regulars for having a very good eye for matching pieces. I was disappointed on the last day because I left after the morning treatment with only about 50 pieces to go, and by the time I returned 6 hours later the puzzle I had been working on the whole time was finished. Oh well, I started a new one for them.

I guess other than the transplant, the other "big" news is my hair. Yes, it's gone. Actually it's in a zip-lock bag in the mail. Some of you might know that I've been growing it out to donate it to Locks of Love, an organization which makes wigs for disadvantaged children with permanent "bad hair days". It's the 2nd time I've done it and it takes about 2 years for me to grow it long enough, but the timing was absolutely perfect, and I love it. It might not seem like much, but my hairdresser told me that each head of hair donated can make up to 3 wigs, and if you're cutting it anyways... For anyone interested I've added the link to the others already listed.