Rene and Luis went back to spend the night in the hospital (Rene was out on a day pass), then spent one more night at the Ronald McDonald House before seeing Rene's doctor at the clinic and coming back over to Victoria on Tuesday.
Meanwhile, I went to work. Wow. I thought through each step, laying out my work clothes, calculating what time I had to get up to get there on time. It was fun to do it all by myself without the distractions of family. I enjoyed my time by myself in the house. One thing surprised me, though: there is a hill in Fernwood! I had done a week of "training" in Vancouver, walking 20 minutes every day, which probably saved my bum (literally) but still the walk from home to work is 35 minutes (who added on the extra five minutes?) and surprisingly "steep." I had to resort to taking the bus once a day. Oh well, I love the exercise I do get and I don't miss the car.
My director told me, "This is not to be a source of stress for you." She was reminding me I didn't have to remember how to do everything at my job on the first day. My supervisor has been wonderful (she always is) and work was good.
Luis and I are so grateful that I have such a wonderful work environment and so many supportive people all throughout the extended work environment (mostly the "old" MTCA, which no longer exists as such) I was received with joy and hugs.
It is amazing how much TIME work takes. Man, it's all day every day. No wonder we were so stressed before Rene got diagnosed. It's so great to have Luis home with Rene. He gets so much done and evenings are much more pleasant.
Rene was a saint for Luis the first week. One night I felt like a third wheel and called mom to have someone to talk to, "It seems like there is a competition to see who is the better stay-at-home parent," I told her.
The next day I came home to a happy Rene laying on the living room floor watching Pooh and Luis making an oven roasted chicken. Rene paused his movie to tell me he'd gone to a movie on a huge screen (IMAX) and watched airplanes. I was so glad to see Luis and Rene doing so well.
I called my mom: "There is a competition and I lost." I laughed.
The second week went well, but Rene stopped being such a saint for Luis, so I know I'm not a bad mom just because he was testing limits with me when we were home together in December.
We returned to Vancouver on Sunday afternoon. The echos of Rene's huge tantrums still reverberating around our house. Finally I asked him what was wrong with him because normally he's nice and flexible and polite and he was out of line over and over; Actually damaging something.
He said, "I don't want to be in diapers again!"
Poor guy. I glossed over it in previous blog entries because it's such a sore subject with him but his bowels got out of control on the first round of the chimeric antibody and he was in diapers for days with a painful bum. That was on top of the treatment being painful -- yes they got the pain under control but he had breakthrough pain. It was not something he wanted to go back to.
Saturday night we were with friends and left early because he had meds to take and Luis and I knew that Sunday would be a long day and we all needed sleep. He had to be carried bodily from their house!
I stayed last night (the first back) with Rene and Luis is with him tonight. I've got to get to bed. I must exercise tomorrow morning so that I don't lose the little bit of conditioning I regained walking home from work for the last two weeks.
So far so good with Rene's treatment. This week he doesn't receive any antibody, just something called Interleukin-2, which will stimulate his immune system. Today he made it a point to get out of bed as many times as possible. He also used the head rest as a slide while he enjoyed Treehouse. Two volunteers came to play with him and he asked his parents for new games from the play room every 30 minutes!