Archive for category: Patient Stories

Our daughter Marta Helena is a cancer survivor. Like her grandmother Barbara, she had been diagnosed with this heinous disease. At twenty-three months old Marta had to undergo aggressive chemotherapy and radiation therapy to shrink a malignant brain tumor that was inoperable. The treatment was successful and now, at twenty-one years old, she has lived a basically normal, healthy life.  What is different about Marta’s situation is that she beat the odds against her to survive.

In effect, she was born with a malignant brain tumor, that went undetected as there was no reason to suspect anything. Then as various symptoms slowly presented, we found out the worst. A neurologist diagnosed a fast spreading form of cancer in the central nervous system. There was a tumor that had begun in the brain and then lodged into other parts of the nervous system. It was called ‘medulloblastoma’ and the prognosis was dismal. This was beyond frightening, it was paralyzing.

Perhaps the disease was caught sufficiently early, maybe divine spirits took control from the other side or just possibly, science had advanced enough to make the difference between life and death in our child’s fragile life. When I read the ‘failure to thrive’ diagnosis that her pediatrician wrote in the space for the reason for the MRI, it was like a knife through my heart. What about all of the prenatal care during my pregnancy? Yes, I was approaching forty and I took those huge prenatal vitamins, and radically changed my diet to include mostly veggies and fruits. [Yes I had those strange cravings as well. I wanted coffee ice cream ALL OF THE TIME and some bizarre combinations of food.] Yet for all of my healthy eating and careful food choices, I gained sixty pounds instead of the typical fifteen.  Looking back, I suppose at some deep level, I was ensuring to eat enough so that no doctor could ever accuse me of causing my child to ‘fail to thrive’…

To appreciate how far Marta has come, in terms of how she has flourished, advanced, maintained health and an excellent level of quality of life, you must understand the progression of events. Finding out what plagued Marta, at the tender age of two years old was a long and painful process for everyone in our family.

Our little girl achieved all of the early childhood milestones, and on time. For example, she crawled, babbled, sat up, drank from a cup, stood-up, took first steps, and glided through rooms while holding on to various objects. Eventually early speech emerged, with simple syllables, da, da dada. Alright, the ‘d’ sound is easier to pronounce than the ‘m.’ So no ‘mama’ just yet…

However, several months into her second year, her physical and mental skills seemed to completely shut down. No amount of encouragement could motivate her to talk, walk, speak or eat in the way she had learned. She only wanted to drink a juice bottle and rock in her infant seat. It was at this point we sought professional advice.

This began with a many appointments with different physicians to relate Marta’s health history. Our personal pediatrician is a wonderful, helpful and astute professional. He realized though a more specialized opinion would be needed to investigate her ‘failure to thrive.’ He led us to our local university hospital to begin with an MRI study, and it was there we were told the diagnosis every parent dreads. The radiologist said “your child has a large, malignant tumor” and “she will need to stay here until a more exact diagnosis and treatment plan can be made.”  My husband and I decided to take Marta out of that hospital and brought her to one that was better known to diagnose and treat this particular type of childhood cancer, called ‘medulloblastoma.’

October of 1995 was an eventful month for our family in that many life altering decisions had to be made, and quickly. My husband and I whisked Marta out of that facility. We brought her to a hospital that was better known to diagnose and treat her particular type of cancer: New York University Hospital, with a superb pediatric neurological unit. The well-known team of surgeon Fred Epstein and oncologist Jeffrey Allen took charge of our daughter’s health care. It was beyond difficult to turn our child over to them, however essential.

Her journey to wellness was arduous. There were so many details to be mindful about that it felt as though I was leading an orchestra. The doctors, the specialized nurses, the social workers and aides all did their parts to help heal her but it was I who kept track of the correct medications given day and night and the wheel well greased so that we could continue on. Finally in March of 1997, two years after initial diagnosis, my husband and I made a huge decision. Our Marta had been through so much, enough was enough, and it was time to get her home. No more treatments, no more MRIs, no middle of the night temperature checks and no people in white jackets and stethoscopes around the neck. Come what may, our daughter needed to be at home, full time. We had her discharged ‘ama’ (against medical advice) and never looked back on the long ride home.

During that year and the next, we happily and completely over-protected her, keeping her safe, warm and well fed. She healed, she began to eat better and was very happy to be home. She was home-schooled by a special education teacher and speech therapist for almost two years before we felt confident about her entering public school kindergarten. Her hair began to grow back and that summer we had the best and happiest birthday party a four year old ever had…A New Beginning