The all familiar reality of being on a children’s cancer ward has just hit me once again. A family has been told that their child will get their angel wings tonight. You can always tell because the hallways are filled with pacing aunts and uncles in the wee hours of the morning. They have tears in their eyes and they are just waiting to go in, one by one to say their last goodbyes. Before Dylan was diagnosed, I always knew that there were sick children, but I had no idea of the horrible trauma that the family goes through. I was one of these people who could not even step foot in a hospital of sick children because I would just fall apart. But here I am, witnessing it first hand and living with the very same nightmare and fear. I commend the people who give up their time and volunteer at that hospital to try and make the lives of the children and their families that little bit easier. It takes a very special kind of person to have the strength to see what goes on here. On Xmas eve 2004, I attended my first child funeral, that memory will stay with me forever. As horrific as this life is, I have had the pleasure of meeting these children and making friends with them. Children living with cancer have this very special, and unexplainable spark to their personalities. I don’t know if it’s because of the bravery that they have or if it is because they appreciate life so much, but each and everyone that I meet has an amazing spirit. One that I have become very close to and think about all the time is Donna (see link below). Donna is a 14 year old girl fighting bone cancer. When I think about what I was doing at the age of 14, it just breaks my heart to see that she cannot have a life that I took so much for granted.
Dylan is doing much better today. I think that the IV feeding has provided him with the nutrition he was lacking, and it has made him feel so much better. His rash is still there, but it has improved quite a bit. We are using his G-tube and his feeds are at 20ml an hour. If we increase it more, he starts to feel sick. The G-tube is also looking much better, no more leaks, it just is very tender. Dylan is still on the 3 antibiotics for the neutropenia, and as soon as his counts come up, we should get to go back to McDonald house. They started GCSF today, which will help in raising his counts quicker. GCSF will be given for the next 5 days via a butterfly that has been put into his left leg. Dylan still is very worried about the G-tube and as a result he hunches over when he attempts to walk. In fact, he really does not want to walk at all, so the physiotherapy staff will visit us tomorrow and assist me to encourage Dylan to walk. I think he just has to get over the fear that standing up straight is not going to hurt (which it shouldn’t). They may give him a frame to use for a few days to boost his confidence. Dylan still has a bit of nausea as an after effect from the chemo, but it is well controlled with anti-nausea medication. He only has bouts of pain a few times a day in his stomach which is controlled by Codine. He has developed mucus in his mouth (thick saliva) which causes him to spit all the time, again this is a chemo/neutropenia side effect. His fever is low grade and only comes up in the evening to about 38.2. Dylan’s platelets are so effected by this chemo, he has had many nose bleeds and he is up to his 4th platelets transfusion. He will most likely have another one tomorrow too. I asked Dylan today, if he remembers his time in ICU and when the nasal gastric tube and ventilator was in his throat and he said he didn’t remember, I am so glad. I can’t believe he is so well already, boy he is a tough kid!
I have put a photo taken of Dylan last November, feeding a kangaroo. I thought our USA supporters would like to see this picture! If you look closely, you can see the baby joey in the kangaroos pouch...there are two legs hanging out.
