So it has been a couple of days since I have written. I don't normally like having a couple of days without an article but I thought it was really important to keep the article up about Parker's Journey for a few days. If you have not read it, I really hope you take the time to do so. It is the article from Friday, July 21st.
So where do I begin? I guess, I should start by talking about Parker's clinic day. It was quite uneventful. He started by getting his weight taken, 8.155 kg. For those of you that work in pounds, that is 17.98 lbs, just shy of 18 pounds. Then it was off to get his ADAGEN injection. Parker is held in his mother's arms while the clinical nurse gives him the injection in the muscle of his thigh. We had to wait quite a bit this Friday to see the fellow and the staff immunologist as they were very busy with some out of town patients. Once they did get to see him, it was pretty much in and out. Parker is so healthy at the moment that there really is not much for them to do or say about the little guy. They did realise this by letting us know that starting this week, Parker only needs to be seen by the doctors every other Friday. We will still get him weighed on Friday, and he will still get his injection of ADAGEN on the Friday, but he will not have to wait for a doctor to see him every Friday. Tuesdays will remain the same by him giving some blood so we can see how his numbers are later that day. We are definitely very pleased that the staff immunologists think that Parker is doing so well right now that his clinic time is being cut in half.
On Saturday, he had the SCID picnic. This afternoon is dedicated to all of the children and their families who have gone through the ordeal of having a Primary Immunodeficiency. It was held in Markham at a camp ground. Parker was the only ADA deficient SCID there among the 15 or so families. He was also the youngest and the only one who has not completed their treatment. The oldest person there was a SCID who had a Bone Marrow Transplant 18 years ago.
It was really nice going to the picnic, as we are not accustomed to taking Parker out in public, especially around children. The comforting thing about it was that everyone knew the severity of the disease and as a result, we were assured that no one was sick that was there and everyone was making sure to stay germ free by using sanitizer whenever possible. At one time, they took a picture of all the SCIDs together. There were no parents, and no doctors, only the children who had gone through this terrible ordeal. Parker enjoyed the picture and was held by the oldest SCID there for the picture. We are looking forward to going to the picnic next year when Parker is a year and a half and has completed his treatment.
My wife has become friends with a very special person the past couple of days. She is the oldest ADA deficient SCID that we know about. She received her Bone Marrow Transplant over twenty years ago and has shown us that you can live a good life after being diagnosed with this disease. She had seen the article in the newspaper back in May and has been trying to get a hold of us ever since. She finally did a couple of days ago and we are very happy that she did.
I finally received my Immunobiology text the other day. I must say that it is extremely informative and I am very glad that I have it. Once I had read a bit more, I promise to write another article amount Parker's immune system. It is interesting going back to read what I have written about the immune system and Parker's disease. I like seeing how my knowledge of immunology has evolved since March when I started writing about his disease.
I had mentioned in the last article that I was going to be going on CHINTV today. My wife and I headed down to Little Italy, where the CHIN Radio building is located so that I could do my interview. I must say that the people at CHIN are among the nicest people around. They were so friendly and I felt completely at ease the whole time. I watched the interview when I got home and I was very pleased at how it went. The fact that they made me feel so comfortable really made the difference. Thank-you so much for letting us tell our story. We look forward to seeing you at the dinner on August 18th.
For those of you who want more information about the dinner please read the following article from Friday. It is going to be a wonderful event with great prizes. Here is a picture of Parker with a hockey stick that was donated for the auction by Maple Leaf Sports and Entertainment. The stick contains all of the players' autographs. We would love to have as many people come out to support our cause as possible. So check out the next article and use the link at the bottom to get your ticket today.
Sunday, July 23, 2006
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