Happy Birthday to Parker's Battle with ADA

I just realised when I cut pasted the article into blog from notepad that I started the blog the day Parker enter isolation last year. It was 365 days ago today. I wanted to thank everyone over the past year who as visited our site. One of our major goals is to get people informed about Parker's disease and how promising gene therapy can be not only for Parker's disease but so many other. 130, 000 hits in the past year is definitely getting the word out. I hope you enjoy today's article.

It is the start of a new week here. It is hard to think that it has been almost seven days since we arrived. So far it has been very good; mostly because Parker has not had to have any major procedures done.

We did take a trip to the hospital today but only for his ADAGEN injection. Mondays and Thursdays Parker gets his injection. This will stop about three weeks before the procedure to starts. At least we won't have to worry about Parker getting injections the rest of his life if this works.

The last time I wrote was on Saturday morning and quite a lot has happened since then. Alot in the sense that over 24 hours have passed in our new surroundings and there is alot to write about as a result.

We found out on Saturday evening that everything is closed in Italy on Sundays, as a result we would have to make sure that we got all of our groceries on Saturday that we would need for Sunday. Of course that meant some salami, cheese and bread for lunch, for dinner on Sunday we decided we would have pizza.

I do apologise that I did not take any pictures of the pizza and calzone that we had but do trust me they were very good. Believe it or not we got our pizza at the Chinese restorante attached to the residence. Yes, you heard me correctly. Apparently, it is a Chinese food and pizzaria in one. I was very surprised that pizza from a Chinese restaurant could taste so good. It was of course very thin crust with very fresh ingredients. My wife ordered a pizza with pomodoro, mozzarella, and funghi, I ordered a calzone with pomodoro, mozzarella and prosciutto. In addition, we ordered a rice gnocci dish off the Chinese food menu. They consisted of thinly sliced gnocci with sliced vegetables. Absolutely incredible. Now, the only problem that occurred with the pizza is that we were unaware that the afternoon hours for the restaurant began at 7:00pm. Yes, people have dinner much later here in Italy so at 5pm we went back to the room and waited for a couple of hours to pass so we could grab our dinner and bring it home. To be honest, I did not mind eating that late. Parker on the other hand needed to be fed a little sooner than that.

For the most part, we spent the day walking around Milano Due. That is the name of the suburb that we live in. In consists of several different residences separated by parks, trees and walkways. Very beautiful. I took an image of a map of Milano Due in hopes that it would help us locate different places we needed to go. Unfortunately, it is a very general map that contains mostly the names of the different apartments. As a result, we used the day to walk through as much of Milano Due so that we could have a better understanding of where everything is located.

We of course stopped so that I could have a caffe. While I was inside get my shot of espresso Parker and mommy hung around outside. Mommy even took a few snapshots while I was inside.

Parker absolutely loves the scenery here. On our little adventure we located a soccer pitch where a games was being played. Parker, his mommy and I stopped to watch for a bit before we continued on with our trek.

Most of the residences contain stores below them. Unes, the grocery store we go to is located in one of them. Yesterday we located a store that was actually open and sold baby toys for the bath. We left Parker's bath toys at home so the poor little monkey is quite bored in the tub since mommy does not let him splash around. Parker did enjoy his bath quite a bit more yesterday.

I do have more that I could write about but I think I will save it for tomorrow. Ciao!

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.

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!

First Full Day

It is day number two here in Milan and it went much better than yesterday. We did get some sleep last night and as a result, Parker felt much better today. Currently it is just after seven in the evening here. My wife is just putting Parker down for bed while I work on today's article.

I purchased what is referred to as 100 units of WiFi service thinking that it should be quite a bit considering it cost 100 euros. Once I got everything started I found out it was only 11 hours of online time. I am sure most of you have figured out that that is not really alot of time for the amount of money it costs. To save on time, I have decided to use a text editor to write the articles and then copy and paste them into blogger once they are complete. Then all I have to do is do a spell check and add images. I think I am going to have to ask someone with a cheaper Internet connection to edit the articles on my behalf since it just costs too much money for my wife to edit after it has been placed on the web. If someone who is good at using blogger wants to edit (I don't make too many mistakes) please let me know. Of course, you have to already be a member of the blog to do so.

I had mentioned in my last article that I was hoping to make contact with the doctor here in Italy today. He did call our room this morning at half past ten and made arrangements with me to meet with us at the San Raffaelle tomorrow at 930am. It is close to our residence and we actually took a walk by the hospital this afternoon. Parker will also receive an injection tomorrow of ADAGEN. We are very anxious to meet the doctor who is performing the study, as you can imagine.

Life here in the residence is quite nice but there is some getting used to that has yet to be completed. First, we used Parker's car seat as a high chair today. We did just receive a call from the front desk saying that we should be receiving a high chair rather shortly. Secondly, we usually have a microwave that we use to sterilize most of Parker's stuff. However, there is not one in the room. We did request one and I believe it should be arriving tomorrow. I have already mentioned the difficulty with having Parker sleep with us in our room but I must say that it went much better today. Parker took an afternoon nap, as did we, and he has already fallen asleep.

Tonight for dinner we had gnocci with mushroom and tomato sauce and italian sausage. Of course we finished the wine from yesterday and had a salad with tomoatos, olive oil and balsamic. The fresh bread was definitely nice after dipping it into the dressing. Parker had honey on bread, a piece of cheese, a couple of gnocci and a little bit of the sauce. I really think he will eat better once he has his own chair.

We did take two walks today. First walk was just to the market to purchase some milk and some other necessities. Our second was later on in the day and was much longer. Parker absolutely loves going on walks. He is not used to going outside so he spent every second looking around at all the sites. I think he favourite today were the dogs he saw. Many people were walking dogs so he got to see quite a few of them. When he is outside in his stroller we do not put the shield over him as we feel quite confident that he will not catch anything. If we take him into the market that is a different story. The shield is placed over the little guy and he spends most of the time playing with that. Pulling it down so that the top of the stroller blocks his view.

My wife made her first clothing purchase in Milan today. She realised that she left her belt at home, so she needed to get one or spend every minute pulling up her pants. I must say it does look nice.

I got quite a bit of sun today and I have quite the headache right now, so I am going to upload this article so that I don't have to continue looking at a white screen.

Ciao!

We Are Here!

It is currently around midnight here in Milan and Parker has not completely decided what sleep schedule he is on so although my wife and I have accumulated a couple hours of sleep since Monday morning the three of us are up, writing the blog, cleaning the apartment and playing with our toys.

With everything that has happened the past 36 hours I am sure that there is going to be quite a bit to write in this article. I am hoping to get through it all, but to be honest, it depends on how happy Parker is.

When we woke up on Monday morning we were very happy to see that the monkey not only made the front page of the Toronto Star but his smiling face blessed everyone who picked up a copy of the Metro on their way to work or school. To be honest, when my mother and I got to the hospital on Monday so that Parker could have his injection, it was from one of his nurses that I found out that Parker had made the cover of the Metro.

Once we did complete Parker's injection and pick up enough viles of ADAGEN for four weeks in Milan before the ADAGEN injections are supposed to be discontinued and his conditioning begins we left for home so that we could meet up with mom who was finishing up at home before we left for the Airport at three o'clock.

Nonno and Nonna along with Uncle Mikey accompanied the three of us and our copious amounts of luggage to the terminal 2 at Pearson where we met up with two very nice people from Air Canada.

I must say that the service we got from Air Canada was absolutely incredible. They helped us through baggage check, and security so that we could minimize Parker's contact with people. We did eventually head to the Maple Leaf Lounge (Business/Executive Lounge) where we waited for them to come back and get us when it was time to begin boarding.

We were the first to board so that we could get everything put away and buckle Parker into his car seat on the plane. We sat in bulkhead so that we did not have anyone sitting in front of us, and Parker got his own window seat.

The flight attendants for Air Canada were all very knowledgeable of Parker and accommodated us in every way possible.

Parker's first flight was not too bad. Parker was quite the happy little boy for the majority of the flight, laughing and watching the different people on the plane. There was an eleven month old little girl sitting with hew family a few seats over from Parker and he enjoyed interacting with her. Of course, she did not understand that Parker was not able to play with her so I am sure that she was a little confused when we would not let Parker take her bunny when she tried handing it to him.

Eventually, Parker did fall asleep but woke when the little girl began crying. Of course, this made Parker sad since he was quite tired I am sure. After we consoled him for another hour or so, Parker did return to sleep for another hour until the lights in the cabin came on, this again made Parker sad. As a result, we held the little monkey for the duration of the flight.

When we did arrive in Frankfurt, there were two more representatives from Air Canada that helped us get through security and boarding quick quickly. Once we finally arrived at the Executive Lounge for Luftansa, we had about 20 minutes to change Parker, go to the washroom and grab a drink before they returned to take us to gate so that we could begin boarding. To board the plane, the three of us had to get on a bus that would take us to where the plane was on the runway. It was a little crazy since we are not used to bringing Parker on a packed bus with us but we did it.

When we arrived at the plane, we were the last to board and within minutes of boarding we were in the air on our way to Milan. Now, Parker fell asleep on the bus and remained that way until we arrived in Milan. To be honest, the Airport in Milan was quite different. There was no real Customs that we had to walk through. Once we pulled our bags off the baggage belt a dog came over and sniffed our bags, but other than that we were free to leave. Through this, Parker remained asleep in his stroller. There was a representative from the hotel waiting for us to help us with our bags and take us to our residence once we left the airport. Parker did wake for a few minutes while we placed him in his car seat in the van but fell back asleep once we began driving.

When we did arrive at the residence we were pleasantly surprised with our room. It is a one bedroom with a kitchen but it is more spacious than we were anticipating. Now, it will take some adjusting to, but I know that we will make out just fine. In the our bedroom, there is a playpen in which Parker is able to sleep. Looking back, we wish we had packed ours as this one is not in the greatest of shape, but it will do its job.

By this time, Parker had had quite a bit more sleep than his mommy and daddy. I was absolutely comatosed. Mommy seemed to be running on adrenaline. Parker occupied himself in his playpen by bouncing around and playing with his blanky while we tried to unpack as quickly as possible.

Eventually, we decided to give Parker a bath and although he did not have his bath toys to play with he did just fine. Me, on the other hand was absolutely useless. It was so tired that I need Tracy to help me put on his sleeper after she had already cleaned him and put cream on his body.

After that, I went downstairs to the bar (espresso) to see if I could get some milk for Parker. Now, my Italian is currently atrocious and no one at the bar really spoke English. So, when I first asked for some milk for my baby I got a glass of milk. My second attempt at getting a large bottle of cold milk, go me a large bottle of steamed milk that the woman at the espresso machine took some time to make for me. By my third attempt, a woman behind me said in Italian that I wanted a new bottle of cold mild. Of course, they laughed when they realised how simple my request was and how badly I had requested it. Regardless, 1.50 euros later I had a litre of cold whole milk for Parker.

While Parker drank his bottle, I had a shower that made me feel much more refreshed. After I finished mine, my wife had one while Parker watched Backyardigans on my notebook. Once we finished getting cleaned up, we put Parker back into his stroller and went for a walk to the supermarket. I have to say the Milan is absolutely beautiful. It was 19 degrees Celsius here today so it was the perfect weather to go for a stroll. The landscaping is wonderful here with the trees and walkways.

Parker finally did go to sleep around 12:45 on Tuesday so I took advantage and went to bed then to. For that reason, everything I write now was written at 9am, Milan time.

At the supermarket, I was astonished at all of the wonderful things there were to buy. I love food. Absolutely love it. So, when I saw all the different things that I am not used to seeing I was so excited. It was a small supermarket, much like the one I worked at when I was in high school. But it had cheaply priced wines, excellent olive oils, balsamic vinegars, a wonderful cheese counter, meat that I would normally have to go to the St. Lawrence market (in Toronto) for, and 14 different kinds of honey. A little more than the usually small or large jar of Billy Bee.

We ended up picking purchasing some Gnocci for tomorrow, but decided to have a real Italian dinner tonight so we bought some nice goats milk cheese, salami, mustard (not Frenches), two baguettes and some red wine. Not to get a head of myself, but dinner was absolutely wonderful. While we were still at the supermarket, my wife met a woman who was very helpful. She pretty much walked around with her asking her questions that she was more than happy to answer. She even gave her a phone number that she can be reached at if we had any questions while we were here. I must say that the people here are very friendly.

When we got home from the market is when things started to get a little more overwhelming. Remember, we have not really eaten or slept in a while. By the time we got home, Parker had awoken from his sleep (lucky guy) and began crying. We think he must have been hungry because we had not really given him anything to eat except milk. We do not have a highchair or booster seat in our apartment so it makes feeding a little more difficult. Although he did have some apples and cereal (junior baby food) since it was easy when we arrived earlier, we figured he must be hungry. We tried feeding him but for the most part he kept swatting the food away from us and crying off and on. By this time, my wife is starting to get quite edgy as she gets anxious when things are not neat (the apartment) and Parker does not eat.

It did not take long to give up with the eating idea before we thought of just giving him a bottle and putting him to bed. We did that around 6pm (all times will be Milan times - 1pm Toronto time) and for three hours he did sleep. During that time we ate and quickly went to bed to be woken at 9:30p when Parker began to cry.

One of the difficulties we are having is that Parker is sleeping in the same room as us. I know that many people do that but we have always had Parker in his own room whenever he was at home. Ever since he was born he slept in the room next to us. However, the layout of the residence does not lend itself to that. So, when he wakes up in the night and begins to cry it is difficult because he can see us in the bed. Regardless, we did get him to sleep a few hours later at midnight and he slept eight hours to this morning. I am hoping that he only needs a single day to get adjusted to the time change.

I am going to go and make the little monkey some cream of wheat. We brought some from home and we have some raspberry jam we bought from the market yesterday. We have to give him Septra this morning as we did not give him any yesterday. He normally gets his Septra on Tuesday, Wednesday and Thursday but decided to push it one day so that he starts it on Wednesday instead.

Today, we will meet Dr. Aiuti and find out more about when the testing will begin. Hopefully we can go purchase a booster seat today too.

It Is What We Have Waited For

It is a couple of hours until midnight and my wife has decided to stop organizing for tomorrow and finally take a break. Me, I have spent the last few hours getting the technical things ready for when we arrive in Milan.

To be honest, I am unsure of exactly how I feel right now. This time tomorrow we will be on a plane to Milan, Italy and our what we have waited so long for will finally have arrived. The past few days have been difficult. We have tried to see as many people as we could. I know that I have so many people I should be calling tomorrow to say good-bye to, and to thank for all of the support they have given us but I don't know where I am going to find the time. I guess this is the reason I started this blog almost a year ago today. With so many people to tell everything to, we thought it would be easier if we did it with this. With that, I want to thank everyone who has been with us throughout our dealings with this disease. My wife and I are so appreciative of everything that people have done for us to make the past 14 months a little bit easier.

I know that things are going to be difficult for us the next six months as Parker goes through his treatment in Italy. It will be difficult going back into isolation and watching Parker be run through a battery of tests but I know that there are going to be people here at home that are going to have a difficult time as well. Just tonight, Nana left our home in tears because she will not see us or her grandson that she has seen almost everyday since he came home from Sick Kid's in Toronto last June. I feel terrible for Nana along with my parents and our siblings, but as I was at my in-laws house today with my wife I saw a picture of Parker on his Gaga's (grand-dad) shoulders hanging on the wall and I told my wife that although he may do his best not to show it, I felt the worst for her father. "That's his buddy", I told her.

I am going to try one more time tomorrow to write before we leave for the airport but if I don't have time, I do promise to write as soon as I get my notebook setup on the Wi-Fi in our apartment. I will be taking a lot of pictures at the airport and once again when we get to Milan, so although I have not had many lately, there will be soon.

Please be sure to read the Toronto Star tomorrow as the little monkey is slotted for front page again. We would like to thank the Toronto Star for always doing such a great job!

Soon

So it has been a few days since I last wrote but with us leaving in the next few days you can imagine how busy we have been lately. We just returned from getting Parker's injection at Sick Kids in Toronto. We got there a little earlier today so it was not very busy in Clinic. Not that Friday is usually a very busy day since it is only for immunology patients and not allergy patients like Tuesday.

Parked weighed in at 12.155 kg (about 26 and 3/4 lbs), showing us that all that fish he has been eating has definitely paid off. Of course, after his weigh in mom held him for the last time while he got his injection of PEG-ADA at Sick Kid's for the last time. Parker and daddy are going to Sick Kid's on Monday for an injection, but mommy will be staying at home to finish things up there as we are leaving early next week. Once we get to Milan, Parker will be receiving his injections on Monday and Thursday as there will be no one t give him an injection until then. That is why we are giving him his injection on the Monday rather than the Tuesday.

Parker also gave blood for the last time before leaving for Italy. The immunology team at Sick Kids wants to obtain a little more information about Parker before we leave (EBV line), so for that reason, some blood was taken. At the same time a blood differential and CBC are also going to be performed. This way I will get to know Parker's neutrophil counts before he leaves for Italy. Recall that Parker was neutropenic before he began his PEG-ADA injections last year. His neutrophil count has been hovering around 2500 the past few months which is normal. If it drops below 1500 it describes mild neutropenia; however, I would be upset if dropped below 2000.

Lastly, we took a trip upstairs to the immunology department to visit one of the nurses. While we were there, we also saw Parker's immunologist and the chief of the immunology department. He had never seen Parker in person before so it was nice that he got to see the little monkey before hie left for Italy. It was a nice visit for everyone. Although we are going to Milan for treatment, we will always remember that Parker is a patient of the immunology team at the Hospital for Sick Children in Toronto, first and foremost. Parker will always know who his friends are, as will we.

We are home now and are waiting for a visit from a photographer from the Toronto Star. They are doing an article on Parker for the day that we leave for Milan and want to get a couple of shots of Parker before he goes. For that reason, I better help my wife with lunch cleanup so we are ready for them when they get here.

Mmm... Good Food.

So, I decided to take the weekend off from writing. But, I am back this morning with another article.

With the numbers of days decreasing before we fly off to Milan, Italy so does the time we have to get everything done. Up to a couple of days ago, my wife was worried that we would never get everything done before we go. How are we going to pack everything in time? Well, yesterday, after my shower I took 20 minutes, went through my closet and dresser and pulled enough clothes to fill a single large suitcase for myself. I think that calmed my wife down a little bit. Last night she went through her closet and dresser to locate enough clothes to pack a single large suitcase. See, we are both allocating a large suitcase for all of the clothes that we will need while in Italy.

I did do a once over of what she had placed on her bed for the trip. I had noticed quite a few pairs of shorts and then decided to mention to her that someone had once told me that woman do not normally where shorts in Italy. I think they where skirts and pants most of the time. With that, my wife cut the number of shorts she was planning on bringing in half.

Today, we have to go and pick up some black socks from Winners for her. Ahhh, Winners. For those of you living outside Canada, Winners is a store that sells brand name clothes for much less. I know that there are quite a few places like that in the States. We also have to go to an electrical store to get a few gadgets that will allow my 110A electronics work in the Italian 220A sockets. In Europe their inside wiring is different than ours so I need to make sure that our stuff does not blow up and that it fits into the different outlet configuration.
We once again decided to let Parker try fish since he loved it so much the last time. Last night I made roasted garlic mini-potatoes, brussel sprouts sauteed in butter and garlic and then topped with Panko bread crumbs and lemon juice, and cod for myself and Gaga and Salmon for Nana, Mommy and Parker. We all had pretty much the same dinner last night. The result, Parker ate three mini potatoes, one and a half brussel sprouts, some whole wheat bread and two servings of salmon. I am so glad that the monkey likes daddy's cooking. That will make life so much easier when he is older. I won't have to make two different meals all of the time.

This morning, Parker was playing upstairs in the loft where he normally does each day. There is a magazine rack that use to house my cooking magazines that Parker enjoyed tearing apart. Now, it is empty and acts as a ladder for Parker to climb whenever mommy and daddy turn their head. Today, the little monkey pulled it over so that it bonked him on the head. Now, Parker has a great tolerance for pain but even this made him cry for more than 30 seconds. The poor little monkey was not done yet because once I had settled him and we were looking at the "lights" which he enjoys pointing at with his head back he through his head forward so that his chin came in contact with daddy's top two teeth. At least this time he was done expressing his discomfort rather quickly.

I do not have any images to share with anyone at the moment but if I do accumulate any over the day, I promise to add them.

Fonzy would be Proud!

We had quite the snow storm here in Toronto the past day. Actually, it is much better now but we did have a lot of snow last night and then some freezing rain to deal with this morning. We had to head down to Sick Kids this morning so that Parker could receive his ADAGEN injection and a topping up of IgG.

Of course, we park the car in the garage this time of year so that it does not take so long to heat up but wanted to make sure that we did not have to deal with shoveling this morning. To take care of the latter we did two shovelings last night during the storm. My wife has a
fascination for shoveling snow and I went after the snow had finished to deal with a few more centimeters. This morning, I went out at six to shovel the ice off the driveway. Mommy was worried that the roads were going to be terrible and that we maybe should not go. I assured her that the roads would be cleared and that my super driving would get us to the hospital.

We gave ourselves an extra an hour this morning thinking that with the weather the way it was that the roads would be packed. To be honest, the roads were great. Most people had stayed home for the day and the plows had already done a number on the roads. As well, the weather had started to warm up and any ice that had accumulated had begun to melt.

My mother decided that she would join us at the hospital today, so we made sure to pick her up. Whenever Parker has to get an infusion of IVIG (IgG through IV) we do it on 4C. We let the desk know that we are there and after signing a sheet we head down to our room to get comfortable for the morning.

I had brought a portable DVD player so that Parker could watch The Backyardigans and Brainy Baby during the infusion so we quickly set that up for him. We were just through the first five minutes when the nurse came for Parker and I to go to the IV room where they would attempt to place an IV into his hand or foot. Parker in his daddy's arms happily went through the hall, past reception to a room where there was another nurse waiting for us. She rolled out a chair for me thinking that I might be able to hold him in my arms while they attempted to obtain a vein. I quickly rolled the chair away and said that we would have to lie him down as I would hold him with the help of a second nurse.

We first attempted a vein in his right hand but after the attempt failed on the first vein they found I suggested they use his foot since they were successful with that the last time it was done. This time, the nurses switched positions. It took two of us to keep Parker still as the nurse found a suitable vein and inserted the IV. A soccer player this kid will be they said. What strong legs. All four of us were sweating by the time it was over. As quickly as Parker started to cry, the tears vanished when I picked him and let him look around.

As I walked past reception back to our room, there was an attractive woman standing by reception waiting for one of the nurses. With his hair all sweaty and his face all red from crying, Parker turned to her and with his very best and biggest Parker smile he said hello. What a player.

The rest of our trip was quite uneventful. In just under 90 minutes of having his IV inserted the IgG was administered without a hitch. Let's hope that this is the last time that Parker has to have IgG administered at Sick Kids.

Post 250!

It really bugs me when I complete an article and Windows decides it wants to crash on me and I lose the work. I always thought that blogger had an automatic save but I guess the one time I needed it, it decided not to work. Oh well, there are worse things that can happen to someone.

I do apologize for not writing yesterday, but since I am writing my second article for today it seems to have worked itself out.

When I did log into Blogger today I noticed that this would be our 250th article. With over 120,000 hits to the site since I began it almost a year ago we are extremely pleased at how many people now know about ADA deficient SCID and gene therapy. Thank- you to everyone who has populated this site since its conception last March.

We confirmed our flight information with Air Canada yesterday and promptly sent the information off to the team in Italy so they know when we are arriving in Milan. I must say that I am extremely impressed with the service we have obtained from Air Canada. My wife has been able to liaison with someone on a constant basis and as a result they are extremely aware and accommodating of our situation. It does look like we will be flying in the bulkhead seats so that there is no one sitting in front of us. In addition, they will have someone waiting for us when we arrive at the airport so that we may be assured that Parker will be around as few people as possible and the chance of catching anything at the airport is decreased. Of course, Parker will remain in his "Bubble" while at the airport.

For the longest time I have been checking the "TV Guide" to find out when the Seinfeld, Bubble Boy episode would be playing on television so I could tape it. Finally, a couple of nights ago I noticed that it was playing so I now have a copy of it. I had mentioned in my first article that this is my only knowledge that this disease existed before Parker was diagnosed with it. So, I am extremely glad to finally have a copy of it. The right sidebar has a copy of the script if anyone is interested in reading about it.

As I had mentioned in an earlier post, we have been trying to get Parker to eat more meat at his meals. Two nights ago, I made Red Thai Curry after being inspired by a friend who had made it for me and my wife a week earlier. My wife had requested that I sautee a couple of pieces of chicken for Parker before beginning dinner. As a result, Parker had minced chicken and applesauce for dinner and lunch. There was quite a bit of chicken in each of the two meals and Parker ate every last drop. Then, last night we decided to have Parker try fish for the first time. I cooked up a battered haddock for Parker, then removed most of the batter to reveal enough white flaky haddock to fill a palm and a half of Parker's hand. I was very surprised to see that Parker gobbled the fish faster than I had seen him eat any form of meat.

During Parker's feedings we do try to let him interact with his food whenever possible. That said, it is difficult at times since we want to make sure that he is getting enough nutrients at each meal and that we don't have a complete disaster in the kitchen. With the amount of cleaning we (my wife) do we don't want to be cleaning the kitchen floors three times a day. You can see by the images that we do let Parker have some fun with his food once in a while.

Lastly, I decided to get working on getting us Visas for our trip. If you are from Canada among some other countries you may stay in Italy for 90 days without a Visa. I called the Italian consolidate yesterday to get information about obtaining a Visa for six months but they were closed. I will call today so that we may try and obtain the Visas tomorrow when we are downtown at Sick Kids.

I promised.

See. I promised. Two articles in two days. To be honest, I actually miss studying. However, I did promise my wife that I would not pick up a computer book for a week, even for recreation. I have been caught a couple of times reading a book on EJBs but I put it back as soon as I was told.

We took our regular Tuesday trip to Sick Kids today for Parker's ADAGEN injection. Our immunologist came to see us today in clinic to give us some letters for Dr. Auiti and ourselves. We also discussed some recent discussions that he had with the Italian team about Parker. Everyone at Sick Kids is extremely happy with how well Parker is doing and if I may quote our immunologist, "Parker is the Poster Child for ADA Deficient SCID".

My wife and I, along with our families are getting quite anxious and just want to get Parker to Italy so that we may start the tests and then his actual treatment. Unfortunately, we will just have to wait until our flight leaves in the next couple of weeks.

My wife did speak with the health reporter from the Toronto Star and they will continue to cover our story. There will most likely be a story in the Star prior to our departure in addition to a couple while we are still in Italy. Of course, I will let everyone know when they may look for the stories in the Star. They are always very informative and we appreciate their efforts and work very much.

I had mentioned that yesterday Parker started using a sippy-cup for water. I thought that I would let him try using a cup for toddler that contained a straw. I did and Parker loved it. He enjoyed chewing on the straw and in between chews he would take a sip of the water. We are definitely quite pleased with his new found skill.

In the past couple of weeks, Parker has become interested in the blinds on the window adjacent to the television. He grabs at them and tries to rip them apart. Since this is not something we want, I decided to pull the blinds up, wash the window and sill with antibacterial soap and let him play at the window without having to worry about him wrecking the blinds or getting anything on his hands that may make him sick.

I apologize that there are no images for you to look at today but I promise to have some for tomorrow's article. And yes, there will be one.

Parker Uses Sippy-Cup and Dad Passes Exam

I know that it has been quite a few days since I posted an article on the blog and I apologise for that. I had mentioned that my studying had consumed most of my free time and that as soon as I had written my exam I would once again post articles regularly. Well. I am done my exam. I wrote it this morning and scored 92.7% on it. With that I now have my Sun Certified Web Component Developer certification. What does that mean? That I can code Java for web container.

I have been studying for this exam for quite some time and I have to thank My wife so much for letting me study instead of clean or give her a break from her grueling day. I am not sure who is more happy that I have completed this exam, my wife or myself. Regardless, it is done and I can take a break from studying for a few weeks.

Enough about me. We are still waiting to hear back from Air Canada so that we may know which day we are flying out of Toronto. They have been extremely accommodating toward us and we are so very thankful for everything they have done for us. The date is narrowed down to a couple of adjacent days so we have a very good idea of when we will finally be in Italy.

As for Parker, he finally started using a sippy-cup yesterday. He usually gets a regular cup of water during his meals that he uses with help from dad or mom so that he does not spill its contents everywhere. Yesterday, while he was using it I could hear him making a sucking noise as he tried to get the water that had not yet reached his lips. It was then that I realised that he would probably be successful at sucking on the sippy-cup to get the water to come out. So, with that, I grabbed a toddler sippy-cup (it had no handles), poured water into it, placed the lid on the cup and gave it to Parker. Instantly, Parker took the cup to his lips and sucked on the end piece as he tilted it toward him. It worked. Parker had water in his mouth. He has not used it today but I think I will give him another try at it once he wakes up from his nap.

We have started giving Parker more meat lately since we were told by his dietician that he he needs meat to supply him with iron. Of course when we got home and looked at the labels of all the different foods that he eats we noticed that many of them had iron in them. His pablum is fortified with 100% of the iron that he needs so when we saw that we were not nearly as stressed as we were when we thought the only method for obtaining iron is red meat. Although we still make sure to give him some meat each day. For the very least I want him to get used to the texture.

I am not sure how many of follow Parker's growth on the right sidebar but we got updated numbers on Friday and Parker is now between the 85th and 90th percentiles for all three categories, weight, length and head circumference. We were told that most ADA deficient SCIDs are usually a little shorter than other children their age. I guess the PEG-ADA is doing its job at removing those toxins.

I suggest that everyone come back tomorrow read about the little monkey. Now that I am done my studying you can expect their to be regular postings.