A Busy Day

It is Saturday morning here in Milan and I am assuming that most of my family and friends back home are still sleeping as it is only ten to five in Toronto. Yesterday was an extremely busy day as we spent most of the day at the hospital and returned home for dinner around 8pm, a little later than Parker is used to eating.

My wife has said that she would take Parker for a walk and after she finishes giving him a bottle so I have some time to write the blog. Believe me this should be a long one, so grab your coffee and relax you should be in for a long read. For this reason, and to save my Internet time this will be the only article this weekend.

I guess I should begin with what the trips to the hospital were for. We did have to make two trips yesterday, one in the morning and another in the evening. The first was to begin some testing on Parker. We met with one of the doctors who took us to the second floor of the hospital where the bone marrow transplant unit is located. He began by doing a clinical evaluation of Parker. He listened to his lungs, heart, checked his ears and throat, in addition to taking his weight (12.075 kg). He tried to obtain Parker's blood pressure but the apparatus he was using lead itself to Parker wanting to play with it. The doctor tried several times, but Parker kept banging on the box, or pulling on his stethoscopes, we thought we were going to be successful at one time but Parker yanked the stethoscope right out of his hands and ears. "He is strong", he said. Of course, my wife asked the question she always asks everyone who works with ADA deficient SCIDs, "Is he the best ADA patient they have ever seen?" We have been told on numerous occasions that Parker is definitely the best patient clinically they have ever dealt with. As I have said before, we worked very hard with the doctors and nurses at Sick Kid's in Toronto to get Parker in the best possible condition for the gene therapy trial.

Next, we waited for the nurses to come to the room to take some blood from Parker. We saw all the viles (7) that were to house Parker's blood so we knew before they started that this was going to be the most blood that Parker has ever had to have given. We lay Parker down on the bed as I held him down, my wife stood over him trying to distract him, one nurse held his arm and adjusted the rubber strap on his arm periodically and the other one pulled the blood and changed the vile after each one filled to capacity. To be honest, I figured that Parker we going to be screaming and yelling the whole time, but I was wrong. Parker was a very good boy during the procedure. He hardly said boo. Once I thought they were done, I said "finito?" and they replied Si. What a cute baby they kept saying. We all know how cute the little monkey is and everyone here lets him know it.

We were asked to wait for the doctor so that he could give us the consent forms that we would be able to look at in advance before going over them at meeting later that day. We waited just over an hour and a half for him as he was in a meeting. This gave us some time to take some images from our room of the construction that they are doing at the San Raffaeli. As you can see by these images they are doing quite a bit. Once we were done, we put Parker's shield back on and left the room to head downstairs where the bookstore and the supermercato (supermarket) is located. We needed to pick up some buns and meat for lunch.

Once we were done, I quickly ran into the book store where I grabbed a good Italian/English dictionary and an Italian cooking magazine, La Cucina Italiana. I usually buy the English version of this magazine back home but I figured it would be a great way to learn Italian. It was also a special edition, 15 recipes about rice and risotto. My wife ran into the store and grabbed what we needed while I watched Parker. Once she was done, I paid for them and then we left and headed back home. I tried to read the consent forms on the way home as Tracy pushed Parker.

Of course the first thing we did when we got home was eat. I set up the table and my wife got Parker's lunch ready. We only had a few hours until we had to go back to the hospital and during that time my wife was waiting for a call from a woman at the Peterborough Examiner who has been following the story right from the beginning. Lunch was good, and Parker was content to walk around the apartment holding on to the walls and desks, but it was obvious what he really wanted to do. Parker made his way back to his stroller and tried to jump in so I told my wife that I would take him for a stroll while she waited here for the phone call.

When I did return with the little monkey we had about 15 minutes until we needed to leave for our 5pm meeting back at the San Raffaeli. So, I quickly ran downstairs to grab an espresso at the bar. First, I must say that there are places all around us that you can get an espresso and fresh baked goods, in addition to alcoholic drinks. But for the most part people go for an espresso. It is so nice to see these absolutely beautiful espresso machines. Much nicer than the ones they have at Starbucks back home. Of course, I asked for an espresso in my best Italian accent. A few moment later, I was presented the best espresso I had ever had. There a couple things you need to know about getting coffee here in Italy. First, coffee is espresso. If you ask for a caffe you get an espresso. If it is too strong for you, you can get some hot water to add to it, but for the most part it seems as if people do not generally do that. Secondly, they bring you the caffe and you drink it there at the bar or off to the side (remember, a shot of espresso is not a lot of coffee so it does not take a long time to drink) and once you are done, you go to the cash where you can pay. An espresso here at the hotel bar is 0.70 euros (70 cents) but when I had one on a walk the other day it costs 0.80 euros. Regardless, I still have not had my caffe for today so I want to try and get this article done so I can get my caffeine burst for the day.

It takes about 20 minutes to get from our door to the hematology unit so we left our residence just after 4:30pm. When we got there, the hospital was much quieter, so we waited patiently for the team to finish with their work so we could go over the consent forms. By half past five we entered the room and began going over the forms with the doctor. We were told that it should go much quicker because we i) spoke English and did not need a translator and ii) had a strong understanding of our son's disease and what is involved with gene therapy. He was right we did go through the information quite quickly. We also had a chance to meet with the doctor in charge of the BMT unit and the other doctor involved with the clinical trial. She was extremely pleasant and positive about Parker. We told her how much we have done to get ready for our time in Italy and how impressed and thankful we are for their work. I told them that I try and let other ADA deficient SCID families in North America know about their work so they know that this is the best place and the place with the most experience dealing with gene therapy for ADA deficient SCIDs.

We were told exactly what the procedure entailed and what we should expect at the different stages during the procedure. By the end of the meeting I felt even more comfortable and confident that we would be bring home Parker with a much improved and self sustaining immune system. They also felt confident that Parker should do well in the study. Parker is the strongest patient they have ever had. His lymphocyte count (1900 yesterday) is almost twice that of their next healthy patient. What does this mean? It means to us that Parker is capable of creating the stem cells he needs that are going to be modified in his bone marrow. Parker's neutrophil count was up from before we left Toronto. The blood work from yesterday revealed it to be 2800, up from 2100. Also, at our meeting, we were told that we could see the other family who is just finishing the treatment and is currently in the bone marrow transplant unit. Of course, we will not be able to bring Parker with us, but one of us can stay with Parker and the other could go on a tour of the BMT unit.

By the time we left the hospital it was after seven. Unes closes at half past seven so we quickly made our way there to pick up something for dinner. We had the salad and some pasta left over from yesterday but I picked up some more wine, canned tomatoes and a whole chicken that had already been split through the breast bone and pressed and packed with whole thyme.

It was eight when we finally got home and with that Tracy tried to give Parker a bottle and I began dinner. For those of you who have been a member of the blog for some time now you would know that I do all the cooking in the family and I quite enjoy it. I have all the tools needed in my kitchen that you could possibly want, three chef knives a cleaver, in addition to several other excellent knives and a wonderful Dacor stove. Here, I work in a kitchen that 2 ft x 5ft in area with two small electric burners, no oven, two dull knives, a very small cutting board, and limited pots and pans. I mention this, not because I am complaining but I want to make a point. You do not need any more than this to make good food. I have never made food that tastes as good as the food that I have made here.

I have always wondered why my Nonna's food tasted so much better than my attempts at Italian food. Italian cooking does not have to be complex. It does not have to use tonnes of ingredients. You just need a few good ingredients and that is what I have at my disposal here. Everything tastes so much better here. The canned tomatoes, olive oil, balsamic, cheeses and meats all seem so much fresher and tastier. I have learned so much about cooking here and for the first time in my life, my food actually tastes like my Nonna's.

I apologise that the images are not up yet, but I promise that they will be sometime this afternoon (Toronto time - they are up now!). It is just that I have been writing for the past two hours as I watch Parker. Taking Parker to the store did not pan our exactly how I had hoped. Mommy tried doing laundry this morning. That is a story for another day.

Thank-you to Stacy who has taken over editing duties for the blog.