September 3rd

Today is September 3rd and the twentieth anniversary of my son's diagnosis with leukemia. I remember the day, what I was wearing, the phsyical pain in my body immediately after being told. At the time they told us he was double high risk. His age was a huge factor against him. IF you are under five or an adolescent you are at much higher risk for survival. That was the day I met my friend Paula Grandin.Her son was in the next room having been diagnosed earlier that week. It would later turn out that my son Tom was "lucky" to have ALL or childhood leukemia. Danny had AML which was harder to treat. I am still in contact with Paula who moved away to the South.

My world changed so much that day. I would never again see it as the place that had previously felt so much safer.

We are so very fortunate. Tom survived. I do believe that my research in the medical library, contacting doctors at both Memorial Sloane Kettering and NIH had something to do with it. Ihad to make a serious decision as to the protocol he would be given. The doctor felt the standard would not be enough for him. There was no sibling for a bone marrow transplant. I had already had cancer myself so I couldn't be considered for a donor. There was new protocol which was much stronger. It could cause many other problems. I had to go for it. My son had ONE chance and I wanted him to have all the artillery he could. One side effect of that protocol was he got an infection in his leg. It was very serious and he went septic and ended up in ICU for several days. He was in so much pain. At that time I began to question my decision but reassured myself it would be okay.

At the tiime I was still married to his father. His father couldn't handle it at all. He ran from the hospital the day they told us he was not in remission and things looked bleak. He didn't come back for over a month. (The first four months Tom had to be inpatient due to many reactions and complications.) I slept in a recliner by his bed the entire time. He was afraid for me to leave him and frankly I just couldn't.

The outcome is good. Tom is still here. Honestly, he underwent some changes both physically and mentally. He has never been the same in some ways. He is here though. Still with us. I have to believe I made the right choice. Still, September 3rd is a very rough day for me. Going to work now and hoping it's a good distraction.