A Break in Como

It has been some time since I last wrote and even more time since I specified how Parker's cells are reacting to the gene therapy. In addition, there are many other things happening here unrelated to Parker's therapy that I would have normally written about but have not had time. For that reason, I will write another article as I did a few weeks ago where I break the topics into chunks so it is easier to write and to read. Shortly, I will add an article with only images and captions and upload the newest video.

Parker's Treatment
I had mentioned in an earlier article that Parker was given a red blood cell transfusion in response to his rapidly increasing toxins. Parker's toxic metabolites increased more rapidly then any other patient they had seen in the study and for a while the thought that Parker was not going to be able to produce enough ADA by himself to begin decreasing the amount of toxic metabolites in his blood.

Prior to the red blood cell transfusion we did see Parker begin to take control of the metabolites. For three consecutive blood tests we saw the number of metabolites decrease. However, it was decided that with the high level of metabolites in his system it would be a good idea to decrease their number by giving Parker a low infusion of red blood cells. The recent test result displayed a much lower number of metabolites in Parker's peripheral blood. They are still existent but this is what is wanted as it will give the new cells a selective advantage over the old cells in the peripheral blood.

In addition to Parker's unusual number of high metabolites, Parker also had antibodies to neutrophils. The antibodies were present before the gene therapy and may even have been present during the spurt when Parker was neutropenic over a year ago. Regardless, no one knew the antibodies were present and as a result it hindered the progress of the gene therapy. Neutrophils that went out into the peripheral blood after being created in the bone marrow dies rather quickly. This is why Parker's neutrophil level was stuck at just over 1000 neutrophils for quite some time.

The neutrophils are normally the first cell to return to normal level after gene therapy. Since a portion of the neutrophils would have been been gene corrected if they were in the peripheral blood they would have produced ADA and removed the toxic metabolites. However, the antibodies did not allow this and for this reason, I believe that it also lead to Parker's metabolites rising at a quicker rate than any of the other patients.

To combat this problem Parker was given a high dosage of IVIG a few weeks ago. The last two blood tests have shown that Parker's neutrophils have increased on both occasions. This could be because the metabolites have decreased or because the antibodies have been diluted by the IVIG. It will take more tests to find out why and what is going to happen to Parker's immune system.

As for Parker's face? It has gotten much better since stopping the Norvasc. It should be a couple more weeks before it is gone completely.

Nonna and Nonno
It has almost been four weeks since Nonna and Nonno arrived and I cannot believe how quickly the time has passed. I have to say that we are really going to miss them when they leave tomorrow. They have done so much for us in the four weeks that they have been here that we cannot thank them enough.

Parker always sleeps with them at night so that we can sleep in a little bit in the morning. Nonna always takes Parker for a walk when he gets up in the morning so that he can say good morning to the ducks and turtles. Then at night it is the same so that he can say good night ducks, good night turtles.

My mother has taken over half of the cooking duties which to be honest, I was a little hesitant of at the beginning since I love to cook so much. However, it gave me more time to relax and learn from her experiences in the kitchen. We definitely have eaten much better since my mother came to Italy; as has Parker. My mother has made Parker lots of things he never had before and he loved them all. Just the other day Parker had cinnamon toast with his breakfast and he absolutely loved it.

But to be honest, although I will miss my parents a lot when they are gone Parker will definitely miss them the most. Parker loves playing with them. “Nonna”, he says when he wakes up in the morning or he sees her come into the room.

Since they have been here, Parker has learned about stickers, had bubbles blown at him to distract him during his medication, learned how to give a “high five” when asked, pucker his lips when asked for his funny face, what the word Bravo means, how to take off Nonna's earrings, and he rode his first roller coaster to name just a few.

We are really going to miss Nonna and Nonno when they are gone and we look forward to seeing them when we do arrive back to Canada some time in the next months.

Lake Como and Bellagio
With Nonna and Nonno leaving on Tuesday for Ceprano they told us to take a couple of days to relax and recuperate. We decided to take them up on it since we knew the next month was going to be very hard with them gone.

We have heard so much from everyone about Lake Como so we decided to take a travel book on Northern Italy and head up to the Lake. We first took the metro (subway) to the a station that is just below the main train station in Milan. We purchased two tickets for the town of Como, which resides at the base of Lake Como and figured by the time we got off the train we should be able to figure where we would stay.

Although Como looked nice and was very similar but larger to the little town we went with Parker and my parents in Cernusco we decided to choose one of the cities where Lake Como intersects with itself. Think of Lake Como as an upside down Y with the town of Como at the inverted base. Where the three portions of the lake connect are three beautiful small towns on each side of the lake. Since the mountains surround Lake Como there are numerous steps through each town and up the mountain where the hotels, stores and restaurants reside.

We took a bus through the mountains to the beautiful town of Bellagio. From there we could take a ferry to one of the other two towns but after first glance of what Bellagio had to offer we decided to stay put and see if we could find some where to stay.

Remember that most places in Italy shut down in the month of August and everyone goes up to the mountains for vacation. For that reason, and the fact that Bellagio seemed to have quite a few tourists from Germany, France, Italy, the UK and the United States we found it very difficult to find a place to stay. We would go from one hotel to the next to hear that there were no vacancies. When we finally go the what we thought was the last hotel in Bellagio the were nice enough to mention the Belvedere to the right of them and up 183 steps.

The woman at the desk of the hotel called the Belvedere and with some luck we obtained the last room at what I believe to be the nicest hotel in Bellagio. Our room had a view of the other side of Lake Como compared to the other hotels we had previously looked at on the main strip. We had a beautiful view of the mountains and a little patio where we could have a couple of glasses of wine before going for dinner.

It is really hard to describe Bellagio unless you have been there but I hope that the images I have included in the article help to do it justice. The tourist book we had on Northern Italy described Bellagio as being the most beautiful place in Italy and I can truly say that it is not a far fetched opinion.

There is so much to write about Bellagio and Lake Como and I would love to write about it all but time and space limits me. However, I do feel compelled to mention a very wonderful couple that we met at dinner our second night in Bellagio. They were from New Jersey and they sat at the table behind us at La Punta.

Early on during dinner we began talking and very shortly the topic turned to Parker and why we were here in Italy. We spent most of dinner with our chairs turned so that the conversation the four of us were having took priority over our dinners. We learned that our new friends frequent Bellagio each year and as a result they told asked us to join them at there favourite place to go for wine in the evening. We made our way to BellagioPoint.com, a little pub not too far from the restaurant we had just eaten at. From there we continued the conversation with some great homemade wine and cheese.

My wife and I were very lucky to have met such a wonderful and generous couple in Bellagio and look forward to continuing our friendship when we both return to North America.

The next morning we decided to take the hydrofoil boat to Como instead of the bus since it was definitely quicker and probably easier on the stomach too. When we arrived in Como on Sunday we walked through the town in search of the train station we had arrived at a couple of days earlier. It took some time but we did make our way back to it where we purchased our tickets for Milan. It was quite obvious from there that our vacation in the mountains had ended but we were both very thankful that we had the opportunity to do it. The next time we go we will definitely bring our little guy with us.