When It All Started
I guess one could say the events leading up to diagnosis was my pregnancy with Ian. I was placed on bed rest beginning at 16 weeks pregnant. My pregnancy had many complications. Ian was finally delivered at 38 weeks after many pre-term labor scares at 20,24,28 & 32 weeks. He was healthy and weighed 7.2 pounds. My obstetrician expected him to be bigger because I had gestational diabetes. Ian was very different from my oldest and first child Hannah. He was, pretty much, always miserable and crying. Hannah was forever trying to get him to smile. At the time Ian was born Hannah was four. The next year seem to go by slowly Ian turned one and was still not walking. We were concerned because Hannah walked at 9 months and so we expected Ian to walk sometime after that. At his 12 month check up his pediatrician said Ian was right on target for all milestones and that boys tend to be later in walking and not to worry. We spent that summer camping and going to the beach. In mid August we went camping up in Bar Harbor right on the ocean. We were camping with my sister who is a pediatric ER doc. During the trip Ian began having these drooling episodes. He would stop what he was doing and start drooling with a pained expression on his face. My sister thought maybe he was getting new teeth. She suggested we make an appointment with Ian's pediatrician. When we got back home I called and made an appointment. At this time we were getting Hannah ready to begin kindergarten. Since he was not really sick, the appointment was scheduled for the Friday before Labor Day. By the time Friday came Ian was having these episodes every hour usually 3 to 5 times an hour. Ian's doctor was on vacation for the long week end so we saw the nurse practitioner. She examined Ian and was about to say everything was fine when he had an episode. She immediately said she felt it was something neurological and went to get the on-call pediatrician in the office. Ian's episode had ended by the time the doctor arrived. He examined Ian asked me a few questions and stated that Ian probably had gastric reflux disease and that we should do a stool Guayac test at home and come back on Tuesday to see Ian's pediatrician. After the doctor left the office the nurse practitioner was not comfortable with the doctors assessment. She stated she was leaving a note in Ian's file, stating here findings, for Ian's doctor. She told us to call anytime over the holiday week end if things got worse or we were concerned. She also suggested we make another appointment for Tuesday. Now the roller coaster ride begins. Saturday morning I woke up at 8:00 to a quiet house. The kids are usually up early. Hannah was up but watching TV quietly. I was puzzled why Ian was not up(he usually was up by 6:30). I went to check on Ian. There was something very strange going on. Ian was having a right focal seizure. At the time I didn't know what it was I just knew something was not right. After several phone calls to my sister and the pediatrician we were told to call 911. Ian's seizure lasted for fifteen minuets or more. Ian was taken to the Emergency room at Maine Medical Center. It didn't take long for the doctors at Maine Medical Center to figure out what was causing Ian's seizure. Ian had a CAT scan which showed a mass in his brain the size of a grapefruit. After a few agonizing days we had to make a decision as to whether Ian should have surgery at Maine Medical Center or at Children's Hospital in Boston. We finally decided to stay in Maine. We interviewed the neurosurgeon and felt we would be in good hands. The surgery was a success for many factors. Ian's tumor did not infiltrate his brain tissue it was on the outside of the brain. The Neurosurgeon was able to remove the whole tumor. Once Ian was out of ICU the doctors from Maine Children's Cancer Program(MCCP) sat down with us to explain what Ian's treatment plan would be. The pathology from the tumor was inconclusive because the tumor could be an ependymoma or a ependyblastoma. The difference between the two was prognosis. The ependymoma's prognosis was a higher percent of survival where the ependymoblastoma carries a less than 5% chance of survival. The tissue samples were sent to the expert in the field and we were told it would be two weeks before there would be a definitive answer. Everyone was praying for the results to be ependymoma but to out great sadness it was ependymoblastoma. We were in shock what now. In 1996 there were not a lot of options. The statistical data for, standard 15 months of chemo followed by radiation proved to be unsuccessful. The docs at MCCP went on a nation wide search for any new treatment studies/protocols. They also encouraged us to get a second opinion. The MCCP folks discussed a new study being done at Duke University. The study was short term(6 months) high dose chemotherapy followed by autologous bone marrow transplant. They explained that Dr.Henry Friedman was having good outcomes from this and that Ian would be a perfect candidate. This would me being away from home for 2 to 6 months. Duke was a long way from home with Hannah just starting school we were concerned about leaving home. We decided to get a second opinion. This lead us to Dana Farber/Children's Hospital in Boston. after a grueling 6 hours of interviews and examinations Boston said they were not doing the same study as Duke and that they would do standard 15 months of chemo followed by radiation. We had a real hard time at first deciding what to do. Once we really looked at the odds we realized there was no other choice but to go with the Duke study. Ian had four rounds of High dose chemo here in Maine. By December we were on our way to North Carolina. Hannah stayed in Maine with my sister and visited us at Duke several times. We spent the Christmas of 1996 at Duke and tried to have the best Christmas ever.Many of our friends sent care packages to help put us into the spirit.The treatment went very well with very few complications. There was an issue here in Maine of a technician thinking Ian's central line was a gastric tube and putting tap water and an oral sedative in his central line. We made it home to Maine by Valentines Day. had biannual then yearly This was the hardest thing we ever had to go through. We believe it was hardest on our oldest child Hannah. We had the love and support from so many people around us from neighbors to church to even strangers from the community. It is this support that helps us through challenging times. Parents need all the resources they can get so that they can remain strong for their children. These are not the times to be a martyr and try to go it on your own.