Max was a normal, active, happy toddler in November 2006 when he was diagnosed with Stage IV neuroblastoma at 18 months old. His symptoms, (fatigue, fever, wheezing) came on quite suddenly and took us on a journey from his pediatrician’s office to the oncology floor at Children’s Hospital Boston in a matter of hours — introducing us to a world that we had never imagined in our worst nightmare. When the shock of the diagnosis faded, we found instead hope, caring and dedication that has opened our hearts to an amazing place.
Max’s tumor began in his left adrenal gland and grew bigger than a football inside his small little abdomen. The tumor encased every organ in his abdomen and compressed his aorta and vena cava (the two main blood vessels to and from the heart), completely surrounding them and compromising the blood supply to the rest of his body. This aggressive type of cancer requires several different types of treatment. Max’s type of neuroblastoma had genetic markers that made it especially difficult to treat and resulted in an even worse prognosis. We were told that sadly of those few children that reach remission, more than half ultimately relapse. There is currently no known cure for relapsed neuroblastoma.
Max began a course of treatment that started off with the first of four surgeries to have a central line inserted in his chest, which would allow him to receive chemotherapy and life-saving blood transfusions. During this initial surgery, he had a reaction to the anesthesia, which put him on a ventilator/life support for 10 days in the Intensive Care Unit (ICU) at Children’s. Five courses of the highest-dose chemotherapy allowed for children ensued before his tumor was shrunk to the point where his surgeon could attempt to remove it.
After an incredibly intricate 14-hour surgery, surgeons Dr. Robert Shamberger and Dr. Bradley Linden were able to remove most of the tumor from his abdomen and surrounding organs. After recovering, Max received seven rounds of local radiation to the tumor bed. In April of 2007, he underwent his first of two stem cell transplants, which included a high-intensity dose of chemotherapy several times stronger than previous chemo rounds — this was designed to eliminate his immune system before receiving his new cells that would hopefully rebuild his bone marrow.
As soon as his stem cells began to engraft, he underwent a second stem cell transplant in June of 2007 preceded by more high-intensity chemotherapy and 8 rounds of total body irradiation. After his transplant, Max had to remain in isolation for several months while his immune system recovered.
During this period of isolation, Max contracted an unknown virus that attacked his lungs. Without an immune system to fight this virus, he spent nearly three months in the ICU at Children’s. He defied all odds and expectations when his lungs began to heal and he began to breathe on his own after being unconscious and on a ventilator for more than 2 months. Many doctors and nurses told us there was no medical explanation for his recovery. From November 2006 to November 2007, we spent over 225 nights in the hospital and over 120 nights in the ICU. Max has been recuperating ever since — getting stronger and trying to make up for lost time.
In June of 2010, Max joyfully celebrated his 5th birthday. He has completed all treatment and has no evidence of active disease. He continues to get regular MRIs and scans every 12 weeks to check that the cancer has not returned. We still try to walk the fine line as the parents of a child with cancer — we still worry every day that it will return, yet we spend all of our energy living every day to the fullest.
Max attends preschool and is thriving despite suffering many complications and late effects from such intense treatment. He is a happy, energetic little boy who plays T-Ball, does yoga and loves the beach. As his parents, we are thankful every day for Children’s Hospital Boston and all they have done to save the life of our precious boy.