Our First Meeting

Today was another busy day here in Milan. I have a feeling that each successive day will become even more busy. The highlight of today was meeting with the doctor in charge of the study. We were scheduled to meet this morning at the San Raffaeli at half past nine.

We had walked by the hospital yesterday during one of our walks, so we had a good idea of where we were heading; however, the San Raffaeli is also a University so there are quite a few buildings. Regardless, the instructions that I received yesterday and the help we obtained as we neared the hospital were sufficient to get us there on time.

There is quite a bit of construction going on at the San Raffaeli as they are expanding their site quite a bit. There were at least a couple of buildings that I noticed going up. To be honest, the actual site that the hospital is located is quite nice. With the University there I guess I would expect no less.

Once we reached the ambulatorio/ematalogia unit we told the secretary who we were and who we were waiting for and within moments we met the doctor we had only spoken with over the phone and we began giving some background information about Parker. As I have mentioned before, this is an experimental study and I like to let the research team conducting the study tell the specifics of their patients and our meetings at their discretion. That is what they write medical papers for, and to be honest, I have purchased and read the medical journals based on our doctors work and I highly suggest that anyone who is in a similar situation as us and can understand the medical mumble jumble should also do the same.

As I began, before I went off on to a tangent, we did meet the doctor and for he seemed quite pleased with Parker's condition. Everyone who has been an avid reader of this site knows that my wife and I, along with the Doctors and nurses at Sick Kids in Toronto have done everything possible to make Parker the strongest possible ADA deficient SCID. To be honest, I know we all were successful. I will say that Parker is the twelfth Patient in the study and the first from North America, and there needs to be sixteen patients for the study to be completed.

My wife and I have always known that there are other centers in the world that are currently doing trials for gene therapy on ADA deficient SCIDs but we did our research quite sometime ago and we have always believed as have anyone else we have spoken to that the best center in the world for this type of SCID is here in Milan, Italy. No other center has completed as many patients or been as successful. For that reason we are so very thankful that we have been able to come here to take part in this study.

In our three hour meeting, we did get a chance to ask questions about the treatment and obtain more specific information about the tests that need to be performed on Parker so they may keep track of his progress in the future. Of course, we are looking at blood tests, CT scans, MRI, ultra sounds of the stomach, and finally several bone marrow aspirations. To be honest, it will be the tests that will most likely be the most uncomfortable for Parker. The actual gene therapy procedure should be quite painless.

Parker got to meet not only the doctor today, but also a couple nurses and the doctor's secretary. Bellisimo! They said. What a ham the little monkey is. One of the nurses actually brought another one in so that she could see the little monkey. Does he cry? He asked when it was time to give his injection. Well, we all know the answer to that. Once the needle comes out, you would have never known that he even got an injection. No crying from this little guy. Tough guy, he is.

Tomorrow he will have more tests completed on him in the morning, and in the afternoon we will return to the San Raffaeli to meet with some more members of the team and to go over the consent forms.

As for the rest of today? It went very well. We did go to Unes (the grocery close by) as well as the supermarket in the hospital. It was mortadella and cheese for lunch, and for dinner it was the rest of the salad with tomatoes and rigatoni with crushed tomatoes, wine and shallots. I also had the rest of the Italian sausage from yesterday's dinner. Can you imagine buying a bottle of wine for 1 euro? Well, they have it here. With prices like that, I am not surprised that most Italians drink wine every day.

And Parker? Well, he got a highchair delivered to us last night. So, he had a much better day eating. Of course, the day started off with Cream of Wheat, peanut butter with honey and bread with a Minigo (similar to one at least), and then grilled cheese, prunes and green beans for dinner.

I have noticed two things about Parker since we have arrived here. He loved that there are many things his height in our residence as it makes it much easier for him to get around the apartment standing up, and his favourite place in the apartment to go is his stroller. The little monkey goes over to his stroller whenever he can and tried to climb into it. Parker is absolutely fascinated with going on walks in his stroller. He went for at least a couple more walks today and Parker spent the whole time amazed at everything around him. He got to see swans today and he got a kick out of it when daddy said "Quack, Quack!" to them.

I have being trying my best at acquiring a healthier lifestyle while I am here in Milan. To be honest, I find it much easier to do so. The landscaping is so beautiful and it lends itself to walking that the three of us spend alot of time doing just that. As for eating, large bottles of water (1.5 litre) are about 0.25 euros so I find my drinking at least one each day. There are no fast food restaurants so that is also not a problem. Now, I must say that if I was a smoker I would find it very difficult to quit here because I find that everyone (men and women) always seem to have a smoke in their hand. Perhaps that today may not be the best day to quite smoking, Gaga.

I have wife looking over my shoulder and chirping in my ear to mention this next piece of information. Apparently, the Italian press have gotten a hold of Parker story and he was written about in Italian, here and here. You can check out the following links if you understand Italian.

In addition, several Italian journalists have contacted our doctor and want to do a story on either our son or his work. I think that may happen a few months from now when Parker has completed more of the study. We will see.

Lastly, while on our walk today to the Farmacia (pharmacy) we met up with the woman that Tracy had met in the grocery store. She said that next week she would take her to the mall (5 minute drive) to purchase some things for Parker. That was definitely very nice of her.

Ciao, for now!