Looking Forward to Home

I do apologise, as I normally do when I do not write an article in a long time. We have run out of Internet time so we have to purchase a card for every 30 minutes of Internet we use now. So, we try not to use up the card too quickly. In addition, I have tried to use as much of my free time to review for my exam that I have to write a couple weeks from returning to Canada. That said, I am writing now and we do have some good news.

I had mentioned that there was a good possibility that we would be returning home with Parker very soon. I am happy to say that we have gotten confirmation from Parker's team of doctors in Italy that we may return to Canada. Thus, in the next several days we will once again get to sleep in our own bed and Parker in his own room.

My wife mentioned last night at dinner that we have spent a lot of time in our battle against Parker's immunodeficiency. Now, that we are going home I can say that the first half of the battle is complete.

Parker still remains immunodeficient. Actually, he is much more immunodeficient leaving Italy than he was coming. Without giving away too much information about the team's work I will give you a couple of numbers to ponder. Eight months ago Parker had about 2500 neutrophils per unit of blood and the results of some tests in the months prior to then Parker had over 3000. Since completing the gene therapy and after giving his bone marrow some time to recuperate from chemotherapy Parker's most recent blood results have his neutrophils just beginning to reach 2000. And even still, there will definitely be some fluctuations in these level over the next several weeks.

If you have been reading the blog for a while now you may remember how well Parker responded to PEG-ADA (the injections of ADA he received twice a week to give him the enzyme he was unable to produce himself). The greatest number of lymphocytes that I have recored for Parker are 2600 cells/unit of blood. Now, this is a relatively high number of cells for a child on PEG-ADA but as I had mentioned Parker did respond well on enzyme replacement therapy. Now, before I mention the number of lymphocytes that Parker has three months post gene-therapy I have to mention a couple things about PEG-ADA.

First, PEG-ADA is not a long term solution. Although Parker had normal levels of lymphocytes (low but relatively still normal) while on PEG-ADA the effectiveness of the drug after only a few years of being on it decreases significantly. It decreases enough after three years that Parker would have very little few lymphocytes left by the time he was to enter kindergarten.

Secondly, Parker would have to have the twice weekly injection of PEG-ADA for the rest of his life. With each injection costing $2500US it becomes very expensive and there is no guarentee that the government would pay for the drug indefinitely.

It was for those reasons we chose to take part in the gene therapy trial rather than having Parker stay on enzyme replacement therapy for his lifetime.

As I was saying, Parker had quite a few lymphocytes while on PEG-ADA (2600 in August 2006). Shortly, when we leave Italy, Parker's lymphocyte level will be somewhere in the range of 100 to 200 cells/unit. Yes, this is significantly less that what he had on PEG-ADA but we knew right from the start that it would take quite a bit of time for Parker's lymphocyte level to increase after gene therapy. They may never reach the level they were while Parker was on PEG-ADA but at least a portion of his cells produce ADA by themselves. For that reason these modified cells will be able to rid Parker's body of the metabolites that cause serious damage to his organs in addition to putting his immune system into a state where it is unable to fight infection.

We are still unsure how well the therapy will work for Parker since there was some difficulty with the therapy over the past months. Remember, there was a time that we thought we were going to have to repeat the therapy because it did not work. Now, only a couple of months later we are happy to know that although Parker may not be their most successful patient to date the therapy does seem to be working.

What do these numbers mean for us and Parker? We must continue to keep him protected so that he does not catch a serious infection. My wife will remain at home for at least another year before returning to work and we both will do everything possible to keep ourselves from bringing anything that can harm him inside the walls of our home.

We are extremely excited about returning home to see our family and friends. There are so many people that we want to thank and I know that I am going to miss a bunch of people but I want to try anyways.

Thank you to Nonna and Nonno. You have always been there for me when I have really needed you. I was so happy when you told me you were coming to Italy. The month you spent here with us was definitely the best month I have ever spent with the two of you in my life. Parker had such a wonderful time with you when you were here and I know he will be so excited to see you when he comes home.

Thank you Nana and Gaga. The two and a half months that you were here meant the world to us. The hours that you spent with Parker while he was in isolation were invaluable. Parker loved it and it gave Tracy and I some well needed rest. We also want to thank you for everything you have done while you have been in Canada and we have been in Italy. I know that our home will be in pristine condition when we see it very shortly. A special thank you to Roy for his daily trips to the house. Parker is just itching to get up on your shoulders.

Thank you Auntie Natalie. We really appreciate that you came to visit us in Italy. You came during a very difficult time for us but you always made sure to be positive. You are a great friend not only to my wife but also to me. We look forward to spending time with you and Uncle David when we return.

Thank you to my Nonna (Parker's Nonni). You called us almost every single day since we arrived in Italy. You have not only been a great grandmother to me but also to Parker. We promise to bring Parker to your home regularly so he can see his Nonni. We will never worry about the cleanliness of your home since next to ours there isn't a home that is cleaner. You better stretch your legs so that you can chase Parker every where.

Thank you to Parker's God Parents. Your thoughts and prayers have always given us and Parker strength. You have done so much to let other people know about Parker and we are extremely appreciative of that. We look forward to having the two of you over when we return so that Parker can see how lucky he is to have the two of you as God Parents.

Thank you to Uncle Michael, Auntie Kate, Auntie Christine, Uncle Mikey, Auntie Frannie and Uncle Pete. You have been wonderful aunts and uncles to Parker. Although it has been and will be difficult at times for our children to play together you have always been understanding of why. I look forward to the days that Parker will be able to play with his cousins without having to watch him under a microscope. Thank you for your emails and phone calls here in Italy. It has definitely made our time easier knowing who we have waiting for us at home.

I want to thank Dr. Aiuti and his team of doctors here at the San Raffaelle. His dedication to finding a cure for ADA deficient SCID is incredible. Although our battle with Parker's disease is not yet over we are very thankful to know that there are doctors like you who are willing to fight there hardest when the battle seems to be at its darkest moment. We will be forever grateful to you.

Thank you to our team at Sick Kids in Toronto. You diagnosed Parker early enough that he did not have any side-effects due to the build up of metabolites in his system. You helped us protect him and gave us guidance when needed. We look forward to seeing you when we return to Canada. You will not believe how much Parker has grown in the past six and a half months.

Thank you to Air Canada and Luftansa for getting us to Italy and back to Canada problem free. Air Canada is definitely a world class airline.

Thank you to everyone who has said a prayer on Parker or our behalf. You have given us strength during times that it could have been easier to have just given up. I believe that science can only do so much and you need faith to do what science cannot.