An Update on Patrick - January 2003

Patrick's bone marrow transplant from an unrelated donor was in August 1999, three years and five months ago. Patrick suffered from Severe Chronic Neutropenia and then Myelodysplasia (MDS). In one way the time has flown, but in others it has passed very slowly, going from one hurdle to another and another.

The transplant phase, six weeks in hospital, played only a part of the long road since then. When he came home and began the isolation phase until his immunity built up, was an interesting and inventive time. Having his friends come over involved playing Nintendo through glass doors, phone calls and the use of cameras attached to computers at home and his school using one in the classroom. It was important to keep him in close contact with those who meant a future to him. At times the recovery became an uphill battle mentally and physically, but we always tried to believe that there was only going to be a positive outcome. We had to keep Patrick positive. The promise of his own puppy when the doctor gave the okay, time spent with his adoring Godparents, and returning to school.

Patrick viewed going back to school with importance, to him it was a sign that he would be okay. Although earlier than normal, he returned to school with everyone at the start of the new year, five months after transplant. There were the usual precautions with this step, but that day his teachers all had tears in their eyes when he stood next to his classmates with a puffy face (from post transplant drugs) and smile that I will never forget. He began the school term going daily, even if he only lasted for a couple of hours each day, sometimes only one. He would come home and be asleep within minutes, but he was determined. The following months were filled with frequent checkups, bloods, and a multitude of complications, some serious and numerous admissions to hospital. Graft versus host disease, seizures, gastroparesis, the list goes on. But the main thing is he has made it!

Two years post transplant Patrick made the choice to contact his unknown donor. The relevant forms were completed and within a few weeks we made contact with this donor. The initial phone call was always going to be awkward, but when this man answered the phone and said that he had waited two years for this call, it was like talking to an old friend. To him he described contact with his recipient was like completing a circle. It was just as important to him as it was to Patrick. We arranged for our donor and his wife to come over on the eve of Patrick's birthday and together we shed many tears and thanked this wonderful man.

Today Patrick goes to school every day, and stays there to the end. He has neutrophils and plenty of them! He has a normal blood count.

I have noticed more and more over the past six months that as a family we have reached a point where we need to move forward. For so long we have had our lives dictated by a "condition" and now things are becoming normal, we feel the need to "be normal". Patrick passed a comment not long ago where he said, he feels like he leads two lives - the sick one and the well one. But, he doesn't want to lose the sick one, that is what he knows, the well one is new to him and alien territory. I had not thought of it in that light. He prefers to have two groups of friends and keep them separate, but he is just as devoted to both. He has just turned 14 and amazes us with the maturity he displays, again another issue. He has been around adults for such a large part of his childhood, and especially over the past few years, that he has found it hard fitting into his age group. This is an area we are working on. An illness may appear to only affect one's health, it has a domino effect and touches every part of life. Sometimes I sit back and think, will we ever be normal - I doubt it, but we are trying to get close! Without going through the transplant we would not have been given this chance.