I do not plan on writing too much in today's article. Yesterday was quite a long one so I will keep this one shorter.
As always we went to clinic yesterday. We had only planned on getting his ADAGEN injection in addition to having his weight taken. When we did get there we were told by the nurse who gives his injection that our staff immunologist wanted to speak with us because he had recently spoken with Dr. Aiuti. We looked at each other as we thought to ourselves that we have finally been given a date to go to Italy.
We were told that the Italian team has recently created a new batch of the virus (vector) that he uses for the gene therapy. He then proceeded to inform us that we would not be going to Italy before January and that he could not even guarantee us that we would be going in January. How did we feel? Pretty much like a truck had just run over us. That said, we were informed that the doctor in Italy has every intention for Parker to come for treatment. When? As I just said, no sooner than January. Apparently the children who have been treated to date have been less than three years old and have been on ADAGEN for approximately one year.
We of course wanted to know if we would be waiting a very long time before we were given a date for Parker. If so, then maybe we would look into one of the other centers in the world that is doing similar experiments. England, Los Angeles, Japan and Italy are all doing gene therapy for ADA deficient SCIDs. Italy has always been our number one choice as their success rate is very high and they have the most experience with the treatment. If it were to be a long time then the doctor in Italy would most likely tell us to look at a different center. He did not. For these reasons, I would be surprised if we were not going to Italy early in 2007.
How do we feel a day after being told? We feel better. We would rather know that we were not going in November or December instead of thinking about it for the next 60 days. Wondering if we would get the call. Parker will now get to spend Christmas with his family in Canada instead of in a hospital. Most likely Parker will get to have his first birthday in Canada as well. We want our little boy to get better. He has surprised everyone so far at how well he is doing. Everything that has happened since Parker's birth has happened for a reason and with that I am sure there is a good reason why Parker is not going to Italy until 2007.
Saturday, October 14, 2006
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