Michael Charles Napoleone was born May 13, 1998 to Mark and Laurie Napoleone.
He was the youngest of 4 children and was loved and spoiled by all. His siblings Mark, Ashley and Christen all enjoyed his spirit and wit as he kept everyone laughing. Besides being the baby of the family, he was just a fun loving little boy… mischievous at times, but loved playing games and sports, building forts or jumping in mud puddles. He also loved to draw and created some amazing artwork.
In September of 2005, Michael entered second grade at St.Joseph’s School in Batavia, NY. He was happy and healthy and though he didn’t love homework, he liked everything else about school especially his friends. However, in November of 2005, he started to complain about a toothache. As parents, we thought that was typical considering his age. A trip to the dentist revealed nothing unusual, but at times this “toothache” was causing Michael a lot of pain. He then developed a low grade fever and had a very small bruise on his hip. Still believing this was a virus and the bruise was from one of his many activities, we weren’t too concerned. We took him to the doctor for the fever and it was considered a virus but gave him a course of antibiotics in case the toothache was related to an underlying abscess or infection. That was about the third week of November.
Still no improvement, complaining of toothache pain… and now feeling more concerned… took him back to the dentist… he extracted the tooth thinking that might have been the problem. That was the Monday of Thanksgiving week. By Wednesday, Michael seems more fatigued, lying on the couch, definitely not his usual activity level… we took him back to his primary doctor for another look- this time a panel of blood work. The call came late in the afternoon that his blood work showed that his platelet were very low indicating some sort of bone marrow failure and the need to get him to the nearest Children’s Hospital. We chose to take him Golisano Children’s Hospital in Rochester, NY where he was admitted not long after bringing him there. Thanksgiving was not meant to be for our family that year and the news on that day was even worse than we would have everexpected. “Your son has cancer”…After a battery of more tests, it was determined that Michael had Burkitt’s Lymphoma, an aggressive form of blood cancer. The tooth pain was actually the cancer growing in the lymph in the jaw area.
That is how Michael ’s story started.
The next 27 days, we spent inpatient as he began chemotherapy. He came home for Christmas and was back the following day for the next round of treatment. He was responding well to his treatment but then relapsed in April. This was bad news as this changed the prognosis and would require a bone marrow transplant. A difficult decision was made to go for a consult at Boston Children’s Hospital and have an autologous transplant as long as we could get him back into remission. We moved into the Ronald McDonald House a few blocks from Boston Children’s Hospital in the Summer of 2006 where he underwent a bone marrow transplant. This is a difficult procedure as it requires wiping out the immune system with chemo therapy, the insertion of the bone marrow and the waiting to see how the body responds. Michael was pretty sick during this time from the chemotherapy but he stayed happy as we were at his side - my husband and I stayed with him almost every night using the Ronald McDonald house for showers and rest. He continued to play video games and sketched (he did not like to color- just draw). He had a room full of toys and gifts from friends, family and even strangers who new his story. This all kept his spirits up through a long hospital stay. We were in Boston for six weeks that summer.
Unfortunately, remission was not meant to be, and we were back at Golisano Childrens’ Hospital in September where it was found that his cancer was back. Again, each relapse means poorer prognosis. We found a donor in Boston, but they would not consent to a bone marrow aspiration, but would give peripheral cells- this was not recommended by our physician as it was very risky for a young child.
So we went back to the drawing board and a new plan. We then decided to take him to Duke University Hospital for a cord blood transplant. Again, we needed to get him into remission. His team of doctors worked together to come up with a plan. This transplant was not to happen, the cancer cells had spread to the lining of his brain. We tried some experimental drugs but they did not work.
During this time, Michael maintained his witty and loving spirit…just wanting to be a kid… making us laugh until we cried and crying because there was little we could do to change the circumstances.
We were told there was no more we could do and we planned on bringing him home on December 31st, but that never happened.
After a long and heartbreaking journey, Michael passed away on December 30, 2006 at Duke University Hospital surrounded by family and friends.
The Celebration of his life was held on January 4, 2007, the same year the Michael Napoleone Memorial Foundation was created.