Thursday, March 15, 2007

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!

8 comments:

coolauntiekatie said...

Hiya Parkerbear!!

Or should I say Ciao!! I'm so impressed that you didn't cry when you got your injection! Jett's getting his first shots on Monday, and I told him how brave you were with your injection, so he's going to try his best to brave like his cousin. Wine for a $1???? Sweet! Anyway, I hope your tests go okay tomorrow. I'm glad that your meeting went well today. We miss you tons. The weather tricked us yesterday with a nice 14 degree high. Today we're back to.........well, cold. It's nice seeing all the green grass in your pictures. Hopefully our weather will get better soon, 'cause it just means that we'll be that much closer to having you come home!!!!

Lots of love,
Auntie Kate, Uncle Michael, and Jett xo

Nana said...

Hi our little man:

How beautiful it looks and how happy you look. Did you like Dr. Aiuti or were you oblivious to the whole thing. After all, you are an old hand at this hospital thing.Perhaps you thought it's not all it's cracked up to be.

Enjoy the fine weather and perhaps you could send some of it our way.

Our love to Mommy and Daddy.
Enjoy the fantastic Italian food.

We miss you (it has been 4 days since I saw you)

All our love,
Nana and Gaga (those people)
xoxo

Uncle Mikey said...

Hey Parker,

What an adventure you are having! I don't doubt you love your long walks and looking at all the beautiful things around you. I'm glad to hear your first visit to meet the doctor went well. You are such a brave and strong big boy. Thank your dad for the great articles the last three days and all the nice pics...even though we can't be there with you it's nice to read about your days in Italy so we can feel a little closer. Keep up all the great work, you seem to have adapted to the new surroundings quite well which is also nice to hear. Take care of your mommy and daddy for us.

Love Uncle Mikey, Auntie Christini and Jacob.

Bree said...

Wow! I can't beleive you are all the way over in Italy! I am currently writing a paper on the Communist Manifesto and I must say it was a nice break for me to come and read the blog and see how well you are all doing! I havent heard from you guys in a while and I hope you haven't forgotten about me!!! It's nice to see you are all doing well, and that this Gene Therapy is well on it's way!!

Talk to you guys soon and enjoy yourselves!

Hugs,
Bree

nonna said...

Ciao Parker

Nonni is standing behind me as I write this to you. She wanted me to tell you that she loves you sooo much and that she prays for you night and day.
She also wants you to know that on one of your returns to Italy she to will be coming so that she can take you to her birth place Ceprano.
She misses you very much.

Stay strong big guy!

love you tons

Arriveterci tanti baci

Nonni, Nonna & Nonno

p.s. from Nonna

Parker I hope you are starting to enjoy yourself in Milano, I know that you are missing your crib but it will all be worth while in the end. I loved the first dinner your guys had with the cheese, salami and bread my mouth was watering as I looked at the picture.
I hope you are having fun on all your great walks.

talk to you soon.

Nonna

funnyface said...

Parker,

I am so glad you are getting settled in your new apartment. It looks fantastic there. I am not surprised at all that your mom has made a new friend who is being so kind to you all, that is great!
Enjoy all the great walks and food Parker and make sure you give your parents great big hugs from all of us!

Miss you guys and lot of love!

Laura, Craig and Elizabeth

Franni said...

Parker!

You look like you are doing just fine there in Italy!
I hope all of your tests have gone well! I am looking forward to reading your daddy's next blog... I keep checking. I am sure that you have all been kept quite busy these past few days.
Hopefully you have had the chance to explore some more while going for walks in your stroller. It sounds fascinating all of the cool sights you have taken in already.
We miss you here and are rooting for ya!

Keep Smiling!
Love Auntie Franni, Uncle Pete, Patrick, Jonathan and Wiilliam

Kari said...

Hello Explorer Parker!!!

You are definitely starting to explore around your new home-away-from-home!! Just be careful all the time!! What a big boy you are to not even cry when you got your injection!! Mackenzie definitely does not like needles & cries very much whenever she gets one. Bravo for you, Parker!!

Have lots & lots of fun meeting all of the bella nurses there at the hospital. They are all going to love you, Handsome.

Love Auntie Kari

PS - I just love your smile in your new highchair!!