Dr. Mark Mozer, a local pediatrician, knows from his own
personal experience the effects of a neuroblastoma diagnosis. It was May 12, 1998 when Dr. Mozer and his
wife learned that their 16-month-old son, Jacob, had a rare childhood
cancer. Jacob was diagnosed with stage
IV neuroblastoma. During our interview Dr.
Mozer was candid when answering questions and straight forward about his
concerns before and after the diagnosis.
At times he was reflective, revealing his feelings regarding his fears
and hopes for Jacob and his family.
Looking back 2-3 months before Jacob’s diagnosis, Dr. Mozer attributed his son’s fussiness for what seemed to be a normal symptom of teething. He recalled Jacob running low-grade fevers and would vomit sometimes. Mozer went on to say, “Then one night while Cheryl, his wife, was giving Jacob a bath (she) noticed his belly being big.” He silently worried that Jacob might have hepatoblastoma. In a slow soft tone, Mozer added, “That was a Monday night,” as he recalled the night before Jacob’s diagnosis. They took Jacob to one of his colleagues who happened to be working that evening. Jacob was scheduled for an ultrasound the next day at Children’s Mercy Hospital (CMH) Kansas City, Missouri.
“Once the ultrasound was done, Jacob was taken in for a CT scan. And that is when he got the diagnosis.” Dr. Mozer went on to say, “It hits you like a ton of bricks and your life is immediately turned upside down. At the time I knew very little about neuroblastoma. I knew the survival rate was about 40%.”
Jacob was admitted the same day as his CT scan and started on the CCG (Children’s Cancer Group) chemotherapy protocol which included biopsies in the following day. Two to three weeks subsequent to his first round of chemo, Jacob’s tumor continued to increase in size. “It was obvious that he (Jacob) needed a much more aggressive treatment,” Mozer stated. He was then changed to the Sloan-Kettering protocol for treatment of his tumor. The tumor had wrapped itself around vital organs. It needed to be surgically removed. Mozer and his wife researched medical literature to see who was publishing work on neuroblastoma, which led him to call the top 7 or 8 surgeons in the country. A doctor in New York, Dr. Michael P. La Quaglia (at Memorial Sloan-Kettering Cancer Center) said he could get 100% of the tumor out in comparison to others who said they could only remove 70-80%. “That made the decision real easy,” according to Mozer with a smile and then as if thinking out loud stated, “He (Dr. La Quaglia) has a history of taking out neuroblastomas that nobody else will touch.”
Jacob was taken to New York for surgery at Memorial Sloan-Kettering and came back Kansas City CMH to finish his chemo, bone marrow transplant and radiation therapies. Jacob’s tumor did not respond to the antibodies used locally (CH13.18); however, did respond to monoclonal antibodies (3F8) developed by Dr. Nai-Kong V. Cheung and his medical team at Sloan-Kettering in the mid 1980s. Once again, Jacob was taken back to Sloan-Kettering for monoclonal antibody treatment. The antibodies were and still are in Phase II clinical trials.
Between hospitals, treatments and juggling the normal routine with the new routine, life was stressful on several levels. “There were times when you wondered (about hope), but if you don’t have hope, you don’t have anything. When they say your kid has a 10% survival rate, it is still a 10% chance to survive and as a parent you are going to do whatever you need to do to give him the best opportunity”
Jacob’s older brother, Nick, was only four years at the time of his brother’s diagnosis. He is now 17 years old. When asked how this has changed Nick, Dr. Mozer responded saying, “Nick was four at the time, and that’s the time when you are developing all of your psychological personality. My comment has always been that Jacob was too young. I say that Jacob bears all the physical scares and Nick bears all the emotional scares.” He hesitated briefly as if in thought and then continued, “I think it certainly affected him, my own personal opinion is, I think there were abandonment issues. Nick would go to sleep, Jacob would spike a fever, we’d run down to CMH, Nick would wake up with us gone, (he) in the care of grandma and grandpa. His whole life was turned upside down because of that. On the flip side, he has taken the advocacy that I took to and has gone full steam, he has been a huge factor with Alex’s lemonade stands*, and we couldn’t have done that without him. He is really into community service, so there have been some positives from it as well.”
Dr. Mozer continued working his full-time occupation as a pediatrician throughout Jacob’s illness. Cheryl left her job to be with Jacob and try to keep some normalcy in the home. Their schedules were hectic and upon remembering the constant shuffle Mozer said, “I remember going (to CMH), they have the parents’ rooms, I’d go down take a shower, put on fresh clothing and exchange places with Cheryl.” The next day they would do the same. According to Mozer, the key was to stay positive and hopeful; they didn’t have time to think otherwise. They never gave up hope. This way of thinking and approaching the illness helped keep their family unit closer together. Unfortunately not all marriages survive an illness like this. Mozer stated, “When kids get cancer, a lot of families end up in huge financial trouble and most of them end up on Medicaid, and because of that the divorce rate is over 50%. That’s just because of the stress.”
When asked, if you had a patient today with a similar diagnosis, what would you tell the parents is the key to fighting this illness. Dr. Mozer replied, “You have to be your child’s advocate, even if you have the best doctor in the world you have to advocate for your child. Nobody knows your child better than you do, especially when he is given the chemo regimen, you know how he responds to this medicine and that medicine, doctors are only human and your child can’t always speak for themselves so as the parent you need to be there for them.”
Jacob’s response to the treatment was positive. He was officially in remission one year after his initial diagnosis. He is doing well at the age of 14. Dr. Mozer has written an article A doctor’s worst nightmare: My own child has cancer, published in Medical Economics (June 5, 2000)**. His reason, “I wrote it mainly for doctors to kind of see what it’s like to be on the other side.”
*Alex’s Lemonade Stand Foundation was founded by Alexandra Scott, who was diagnosed with neuroblastoma shortly before she was one year old. The organization raises money to help fight childhood cancer. Please go to the website and read the story. http://www.alexslemonade.org/?gclid=CIq0q4eupK4CFQReTAodIRTbPw
