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Lake Oswego, Oregon
At age 5 ½, Madeleine was a clever, sweet, beautiful little girl who had a zest for life. She loved ballet, art, school, riding her bike, swimming, playing with her brother and friends. She loved to participate in everything – never passing up any opportunity. She still believed in Santa Clause, the Easter Bunny and the Tooth Fairy. Life for her was easy, fun and full of promise. Then one day in late December 2004, without warning, everything changed.
On Dec. 29, 2004, Madeleine went in for a routine eye exam. The Ophthalmologist saw “pressure” behind her eye and ordered an emergency MRI which was done the next day at Emanuel Hospital in Portland, Oregon. A brain tumor the size a lemon and a cyst the size of an orange were identified. The doctors could not believe a little girl could have such a large “collection” in her head and not be symptomatic. She was in imminent danger of strokes, seizures or death. Emergency brain surgery was performed that night. This is a parent’s worst nightmare.
The surgery, a “Craniotomy for Tumor Resection,” lasted more than five hours. The neurosurgeon said it was a total gross resection – they got it all. After surgery, Madeleine showed no neurological deficit. The tumor was identified as a “Supratentorial Primitive Neuroectodermal Tumor (PNET) at the right temporal Lobe.” This type of cancer at this location is quite rare. To obtain a sample of a hundred children with the same diagnosis, the physicians had to look back twenty years. This type of cancer is not staged -- it is simply termed “very aggressive.”
Despite “getting it all,” with surgery alone, the physicians gave the chance of recurrence to be 99%. Madeleine was left to fight cells you could only see under a microscope. With both chemotherapy and radiation, the chance of recurrence was stated at “about 50%.” Survival rates for recurrence are dismal – somewhere is the single digits.
We sought treatment opinions from five pediatric oncology teams around the country. Each institution gave us a different treatment recommendation. Because the cancer is so aggressive, treatment had to start immediately. After great debate and anguish, we decided on COG protocol 99701 which is a phase II protocol still under study. It was administered at Emanuel.
Protocol 99701 has two phases. Phase I entails six weeks of daily full brain and spine radiation. This was done under general anesthesia each day. Prior to radiation, Madeleine received chemo agents to sensitize the cancer cells. Each day, Madeleine arrived at Radiation Oncology at 5:30 AM. She received chemotherapy until 6:30 AM when she would go under general anesthesia to receive radiation. After phase I, Madeleine had a six week “rest” period.
Phase II consisted of six monthly courses of high dose chemotherapy administered in-patient (four days monthly) at the hospital. She was often re-admitted for “emergency visits” with fever and neutropenia. This is treated with IV antibiotics through her central line port. Also Madeleine needed scores of blood transfusions. Each transfusion involves day-long hospital visits. She also had many issues with feeding and needed supplements to fight malnutrition including food additives and steroids. Ultimately she needed feeding tubes and IV food therapy.
After phase II of her therapy, Madeleine goes into a “watch and wait” period where she will receive frequent MRI’s. The watch and wait period will last at least ten years; however, the physicians have said 90% of recurrences with this cancer happen in the first couple years following treatment. Each subsequent scan will cause great anxiety.
Assuming Madeleine survives her brain cancer, she faces many, long- term, permanent side effect. Side effects include kidney damage, permanent hair loss, hearing loss, stunted growth, visual field cuts, memory loss, multiple endocrine issues, sterility and multiple cognitive issues including IQ loss, learning issues and social functioning. The treatments she has received are also known to cause subsequent cancers. Many of these side effects have high probabilities of occurrence and some are currently presenting themselves. Others take decades to manifest. Upon completion of her therapy, Madeleine will have a twenty year “roadmap” to track her cancer treatment side effects and will be fighting these side effects for the rest of her life.
Madeleine is a brave, beautiful, spirited little girl who is facing a killer she cannot see. She is bearing more indignities than anyone should ever face, with a grace and courage that is amazing. This is Madeleine’s journey. We can only hope and pray, while difficult, it ultimately is a long and happy one. Come cry with us, come laugh with us, come pray with us, but most of all, go home and hug your own children for they are precious. Enjoy and appreciate each moment you have with them and never take anything for granted.