Gene Therapy Update

I got five hours of sleep at the hospital last night so I have some energy this morning to write the first article since Parker has been at the hospital. The procedure spans five days and although we entered the hospital on Saturday morning, Parker began the actual procedure on Monday morning. I will do my best to inform every one in this article everything that has happened over the past few days.

Saturday and Sunday were more for us to get accustomed to the room then for than anything else. On Sunday, Parker did have a line placed into his central catheter to prepare him for the next day's bone marrow harvest. Parker has a very happy little boy on the weekend as he got to run around in his new crib without any cables attached to him yet. We were also allowed to remove Parker from the actual isolation room and carry him around the surrounding room. For those of you who do not recall how the room is constructed, there is an isolation area within a large hospital room.

On the weekend, my wife and I were both allowed to stay with Parker for the whole day and one of us stayed with him over night. My wife stayed with Parker the first night and I stayed with him the second. Now, that the procedure has started, we are allowed to have one person stay with him from the morning change over until 3pm. At 3pm, visiting hours begin and hence the other parent may enter the room. Visiting hours ends at 7pm, but from that time until Parker goes to sleep we are allowed to help each other through dinner and bath. By 8pm it is time for bottle and my wife puts him down to sleep. At this time, the one who is not staying the night goes home to sleep and the other stays with Parker at the hospital. In the morning, the other parent returns to the hospital and from eight until half past nine we help each other through breakfast and preparation for the upcoming day. After this, one parent goes home and the process repeats itself.

Monday morning, with the help of a nurse we prepared Parker for his harvest by making sure he had a very good bath. He was "disinfected" so that we could decrease the chances of any contamination of the bone marrow during the harvest. When we finished, we put Parker on the gurney and walked with the doctors to where Parker would undergo the harvest and have his stitches removed. The whole trip there Parker smiled and remained very cooperative. What a brave little boy, my son is.

Several hours later, Parker returned to the room and for the first time since we left the Hospital for Sick Children in Toronto we put on sterile outfits to be with our little man. From Monday at 1pm when he returned from the harvest until about a month and a half from now, Parker will remain in the isolation area and we will continue to gown.

Parker returned quite groggy and remained that way until about 6pm that evening. It was actually very similar to the last time Parker was put under and had a harvest performed. By that evening, Parker was much more energetic and was not complaining of any pain. Our doctor did come to see us to let us know how many cells (CD34+) they were able to retrieve. Although I would love to tell everyone I feel obligated to keep that between us and the Italian team conducting the trial. What I will say is that it was in the range that they wanted and it was a very good number of cells. Parker continues to do his job so that he can one day live a normal life. The number of cells that will finally be transduced and eventually reinfused into Parker on Friday may differ slightly from the number they have so far but it is expected if it does that it will not change very much.

During the administration of Busulfan (mild chemo), blood will be checked five times over six hours twice. The first set of checks began just prior to the start of the first dose of Busulfan (Monday at midnight) and the second set began midnight on Tuesday (last night). The blood that was taken from Parker on Monday night had to be done through a peripheral vein. Unfortunately, they we not successful at inserting an IV to take the blood from Parker, so as a result, he was woken up every 30-45 minutes for another needle. I felt so terrible for Parker, he was so tired and every time he fell asleep it was very short lived. What was worse was that they had alot of difficulty getting a vein so each time they tried to obtain blood it would take at least three pokes in his leg, foot or arm. I was on the brink of crying myself. I would try and hold him still while they poked him over and over. He cried and screamed because he was tired and in pain. But every time they finished, he would hold me really tight. Then when the morning came and my wife came to relieve me, Parker sat with her and when I smiled at him, he laughed at me. My son laughed at me. Over and over again. The night before I had held him down while what I would consider he must have thought was torture. I don't know why, but when it was all said and done Parker had forgiven me. I love my little boy so much and I am so proud of him. You are the strongest person that I know in the whole world and I will always think so.

Parker has currently completed six of the eight doses of Busulfan. The blood tests revealed that he has the correct amount of Bulsulfan in his blood stream. That and the fact that Parker has shown no side-effects to his chemotherapy is just one more thing that Parker has done well. Parker's next infusion begins in about an hour and his last one is at 18:00 hours Italy time.

I had said that I had gotten some sleep last night. The reason for that is not because I came home to sleep, but because the nurses working with Parker did an incredible job. We were able to use his central line to take blood and when they did do that they kept the lights off and used a small flash light so that he would not wake up. Parker slept from 12:30 until 7am.

My wife is currently at the hospital with Parker. I will go and see my family at 3pm so that she can have a bit of a break. My wife is doing the double shift today so I can come home to sleep.

I will try and write again in a few days. Parker, daddy and mommy along with EVERYONE else are very proud of you!