Rene and Luis came home with a huge cardboard robot/box two days ago. As we all know, cardboard boxes are the best toys. Last night Rene laid it on its side and called it his "hotel." He put a pillow in there and invited me to "stay the night." I scooted in, and he got his Tag Reader and matching books so he could read to me. The tag reader can read in the near-dark of a cardboard box. Who would have known! It was dark enough, Rene had to scoot outside of the box to see which book he had in his hands, then scoot back into the box to read to me with it.
Rene and Luis reported to the Oncology Clinic at Victoria General Monday morning for another round of chemo. Rene is handling it just fine as usual and can even eat his breakfast, though he does need to take an antiemetic. The child life specialist there is doing a great job of keeping Rene's time on the electronics to a minimum. Rene was cycling to out-of-control electronics play-time (again) and Luis had cut him off on Saturday (again) -- which was not a smooth transition, but it never is. Yesterday he came home with a hand made card to Luis and I and is reportedly making a life-sized cardboard robot that I'm hoping someone will take a picture of (hint, hint Luis). Purchase a $5 button and wear your jeans to work on Thursday April 26! Money raised from Jeans Day directly benefits the BC Children's Hospital: helping them to provide the essential services, research and advanced technology necessary to make leading paediatric care accessible to the province's one million children. http://bcchf.ca/events/events-calendar/jeans-day At 800 Johnson (and other places) people are buying their buttons already. I'm so glad we are supporting the BCCH as a community because many families from all over BC end up there once or twice in the course of rasing their children. The hospital saves lives and does so in a child and family centered way. It's a long trip for many famil We're so pleased! Rene's scans this week were negative. We can continue to do chemo because it's working. I'm so relieved. Rene is in the tub pretending to shave with a toy shaving kit he got from the Ronald McDonald House. It even has a can of real shaving cream. Chemo starts on Monday so he'll miss school next week, but he got to go today and even got to have a play date at a friend's house! We want to thank the Independent Order of Odd Fellows (http://www.ioofbc.org/who-we-are/programs/) for bringing our family a donation. One of the members checked our blog and saw that Rene had had a relapse. The lodge agreed to give a donation to our family and we are really grateful. He told us about the Rink of Dreams fundraiser (http://www.vicnews.com/sports/144979665.html) that was to begin March 31. We were very excited to go, but then Rene's blood tests came back showing very few white blood cells (he was neutropenic). That meant that he didn't have enough immunity to keep him safe in public, so we had to have a quiet weekend at home. For Easter Rene's counts had just gotten up enough to go into public. He got to go to school for a day and a half before the Easter holiday, then we were able to travel to be with family. It was our first Easter without Rene's grandma and we managed to have fun -- mostly because Rene was having a blast playing outside and preparing for the Easter egg hunt of the century with the 200 plastic eggs and various kilos of candy my father had purchased. Grandpa hosted Easters are different than Grandma hosted ones. The food is still great and there are still great family friends. The differences: Rene got to play with a bow and arrow, there was a fire pit and since there were no marshmallows, we roasted marshmallow "peeps." Peeps taste better roasted than raw. I'm sure mom would have agreed. We went to a church service with my sister's in-laws and saw Rene's name on the prayer list. I'm glad my brother-in-law's mom keeps him on the prayer list! She's got it covered. I've been meaning for months to write and request it. No wonder I kept forgetting, it was already done. I brought home some of my mom's clothes that fit and Rene said they smelled good. I was surprised that he remembered after half a year, but he did. Then he commented, "Grandma smells better than Grandpa." (Sorry Dad, I'm always looking for a chuckle.) We have the privilege to be friends with not one, but two Reiki masters! They and others in their networks of Reiki contacts have been sending Rene Reiki all throughout his treatment and we feel that it has helped him to stay so healthy while going through intensive treatment. Recently the friend who lives here in Victoria has initiated regular treatments for Rene at home (sometimes with more than one person giving him Reiki) and we are so grateful! Rene enjoys the treatments and is noticeably relaxed the following day. We want to be sure that we help Rene's body to be as healthy and strong as possible and we want him to feel part of that. Rene and I had a nice day together yesterday. Luis went to work early and Rene and I lazed around. We played kitty game for a while. This is a game that he's invented where he is an adorable kitty (or puppy, or seal, depending) which I usually have to rescue by keeping him. He makes up simple dialog for the game. Yesterday I was a child who had to advocate with his parents to keep the kitty. In the afternoon we enjoyed a birthday party of a neighbour friend. I stayed at the party with Rene, originally to be sure he disinfected his hands before eating, but I was glad I was there because he had more trouble than I've ever seen him have at incorporating into the games. To his credit, he only knew the birthday boy. He eventually got into it. In retrospect I didn't do him any favours by forgetting his hearing aides. I think he had trouble figuring out what people were doing. He's been isolated for one reason or another for weeks now; it's been so long, I've lost track of exactly how long. Thank goodness he is at his best friend from day care's house today with his father. We expect he'll be able to go to school tomorrow. I'm glad spring break is over, so there is school. At the birthday party a parent asked the boys what had been their favourite part of spring vacation. Rene answered: "swimming." I wonder where he got that. He hasn't been swimming in ages. Anyway, he should be able to enjoy school for a few days before the chemo reduces his immunity again. After the birthday party we went to look at a suite for rent and then dropped Luis off to play soccer. Rene was exhausted and I expected him to fall asleep in the car on the way to the grocery store, but he stayed awake drinking water (yay!). We decided he'd ride in the stroller at the store. Sometimes he's too tired to walk and he's too big to ride where the baby's go in the carts. Sometimes he makes himself a spot in the basket with grocery bags as a cushion, but that's not that comfy either. Once we got in the store he was inspired to help me and he wrote the numbers on all of the bulk tags (a first!). He got plastic bags, picked tomatoes, got carrots, and even stayed tuned in through the packaged goods portion of the store. Standing in line was tough, though. He's so tired that if he doesn't keep moving, he'll collapse. The stroller was packed with groceries so he was walking around and playing on the railing where they store the carts. Of course other people think I have this "out of control" child, but luckily people weren't too tense this time. Also, the checker was very easy going about the pistachios he'd sneaked into the cart and I didn't want to buy. I was touched by Rene's desire to help out. It was really fun to get to take my little guy out and "be normal" at the store. Rene received an award for bravery at the end of December after radiation. I never finished getting the video rotated. This is just one of four movies his nurse practitioner took so that I could see the ceremony (I was at work, listening on the phone). We're really grateful for all of the loving care they have given our family. I'll just post this, as is, so you can see it. Rene is doing chemo this week. He's not nauseous yet and it's going smoothly. He falls asleep in the car on the way home. He really misses playing with other children! Luckily, his Grandpa has been visiting for a few days. He really enjoys that. Tonight he had trouble getting to sleep because he was so rested from his evening nap! This is a very belated thank you to Help Fill a Dream. There was an advertisement for this organization on the side of the bus I rode in to work this morning and I was thinking about how much they've helped our family. When Rene and Luis spent December in Vancouver, they covered some living costs. It helps our family so much because we can continue to live a normal life even when Luis can't work. (BUT the direct help from Oaklands Elementary, David Livingstone Elementary in Vancouver, and my colleagues was absolutely astonishing. You guys are the real support. I just wanted to let people know that if they don't know a family in need to give the support to directly, a donation to Help Fill a Dream is a valuable way to go.) In other news, Rene's hair is getting very thin. We're glad we didn't just shave it all off because he still has some, but when he has bed head you can see his entire scalp. I guess, since we are going through a cancer treatment experience right now, it'll be OK that people can "see" that. Sometimes I think people don't know how hard it really is, since Rene always acts so energetic. |  Welcome to Julia's Blog ArchivesDecember 2011  Categories |
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