NOTE FROM THE MACS STAFF

Mark's story was written before he passed away. We will update his story as soon as we receive more information from his family.

My wife Pam and I met in the late 80s. Married in 1991 and moved to Florida in 1992 for the warmer weather. She did not use contraceptives but yet we had to consult a fertility doctor. Pam received shots, took medicine to stimulate her eggs. Not until late 1996 did she conceive. On July 2nd, 1997 her water broke. She was due, there were no complications. Delivery wasn’t for over 20hours. Mark was born with a fever. Pam was fine. Three days later we were allowed to take Mark home. It was wonderful. He was and still is beautiful.

His first years were healthy, no hospitalizations, nothing more than colds. He started K4 in August 2001 at The Cambridge School in Tampa, close to St. Josephs’ Hospital where both Pam and I worked. On his first day, within an hour, his class was playing outside. He stepped in front of a child swinging on a swing. His left collar bone was broken. After a trip to the ER and immobilization recovery was un-eventful. We had taken him to Orlando for a vacation, and were there during 9-11. That vacation was cut short, a hurricane was off the Gulf coast, we had to get home and board up.

His sling was off in October and he lost his appetite. He developed a fever. We took him to his pediatrician and were sent home with the belief that it was the ear infection. He started antibiotics. The fever never went away. We were back at the doctors. Blood tests and a different anti-biotic was started. The fever never went away. We’re both in health care. We now had his lab results. The doctor wanted to start iron pills for a low hemoglobin. Children don’t need iron with good diets. We took him to St. Josephs’ where we worked. Dr. Posey, a wonderful woman, gave him a check up, she felt a lump in his abdomen. Off for a ultra-sound. Within a half hour, she told us what was found. Next to her was a pediatric oncologist. Mark, weighing 36 pounds, had a tumor sitting on his left kidney. A surgeon was being consulted. It was several days, scans, MRI, more labs. We were taken aside and told that he was a grade 4, Wilm's Tumor. A solid tumor that started on his left kidney. But, we caught it too late, it had already spread to both lungs. We were broken, but held together with the help of family and friends, many friends.

They removed a five pound tumor and his left kidney. He was also given a medi port over his right shoulder, because of the recent break of the left. Chemo was started after surgery. Radiation and chemo, over and over. The radiation stopped, chemo went on until May 2002. They arranged for Mark to have a wish. We did not feel good about that, because we thought wishes were for terminal patients. He wanted a Disney cruise. We had a great time. He was followed at the cancer clinic, and all of the scans, x-rays and lab work that went with it. In November, six months after his last dose of chemo, they found a large tumor on a chest x-ray in his left lung. Again he had surgery to remove the tumor and part of his lung. The chemo treatments that started were more aggressive. He spent more time as an in-patient then at home or school. A teacher at the hospital helped us with his homework. The Cambridge Academy was and is still very supportive. He spent almost every day of the summer of 2005 in the hospital, the fevers, infections, blood and platelet transfusions were numerous. Infectious disease doctors couldn’t find the problem.

He was on IV medications at home, one day we let him go to school. His port was accessed with a needle that day. He bumped it, playing with others. The site became infected, and was necrotic before he went to surgery a third time now for removal of the port and placement of another on his left side.

It wasn’t until January of 2005 the oncologist decided on another bone marrow biopsy, only one had been done initially in October of 2001. They found genetic changes in his bone marrow. Chemo had to be stopped. He now has MDS (Myelodysplastic Syndrome), a precursor to AML (Acute Myeloid Leukemia).

Every two months he has been scanned, x-rayed, monthly blood tested. The MDS is still there. The doctors told us during his last hospitalization that we needed to consider starting another chemo drug. Currently only approved for adults, as Marks’ chance of avoiding AML. Then a bone marrow transplant would be his last option. We have a meeting on March 15th with the doctors to discuss his future treatments.

(..... to be continued .....)