Tom's Story Part V

After Tom's reaction to the drug they decided they would make it from Tom's own DNA. They flew some of his blood to NIH in Bethesda Maryland and actually made the drug just for him. He never had another reaction. I was overwhelmed at all that was being done for my son.

If you have never known anyone who has had leukemia, it is a very difficult disease. The blood counts are constantly monitored because if too low (platelets) you can hemmorage. Often after chemo when Tom threw up it would lead to blood loss. The white counts are also very low from chemo and prohibit you from fighting infection. It's a constant balance of chemo and blood counts. At times your immune system is too weak and you are neutropenic. That means no fresh fruits or vegetables. Special precautions. No brushing of the teeth. When you get hit hard with chemo your hair will fall out. Just as it is coming back and you get hit again, you lose it again. For teenagers who are self conscious, this is especially upsetting. There are also bone marrow aspirations which are needed to monitor/diagnose. They are very painful. To see your child go through this is so difficult. You pray and you beg God to let it happen to you and not your child. You so desperately want to do something that will help but there is nothing you can do except hope, pray, believe and let your child know that you will be there with them no matter what. Throughout this ordeal we watched many children lose their battles. When a child younger than Tom died, he was always devastated. I tried to go to the funerals to support the other mothers but Tom didn't go. There were a few teens whose funerals he did want to attend. One of those was for George.
George was eighteen. He was so lovable and had a sister who bought her twins to the hospital. That always thrilled him. When we first met George he was doing so well. One day he was out of remission and we were so concerned. His mother had to leave the hospital and I volunteered to sit with him. He was vomitting blood and I was so concerned for him. He suddenly became confused and thought I was his mother. This was one of the most difficult moments for me. I had to comfort him and he kept telling me how scared he was. I called the nurse who ordered some transfusions of platelets for him. His Mom returned and we lost him the following week. I still miss him and so many of the other patients we came to know and love. I worry that they will be forgotten. Somedays I make a list and write their names down. Somedays I dream of them in heaven all together. George is always watching out for the younger ones. It is my great hope when I die to be with these special people again. To know them enriched me and I could never forget them, especially Danny, Richard, Michael and George. No matter how rough they had it, they always had a word of encouragement for Tom. I like to think of them now as guardian angels.