It was soon after Halloween, 1995 when Emma got sick. When we initially took her to the doctor with flu- like symptoms, we were expecting to get some medicine and some good solid advice like "keep her in bed and give her plenty of liquids". What we ended up with, after ten days of doctor's visits, hospitalization, consultation with specialists, and an incredible amount of tests and scans was a diagnosis of cancer. Specifically, Stage IV Neuroblastoma, a rare form of childhood cancer with a poor prognosis of survival. Needless to say, we were knocked off of our feet. I will never forget that first long night where we all slept on the floor of the hospital.
After we could breathe again and think again, we started developing a battle plan. We talked with Emma's doctors, a wonderful team of pediatric oncologists at Brackenridge Childrens Hospital made up of Dr. James Sharp, Dr. Sharon Lockhart, and Dr. Don Wells. They suggested that we attempt to get into an experimental treatment protocol (N7) being conducted at Memorial Sloan Kettering Cancer Clinic in New York City. This protocol had the highest 5 year survival rate (>40%) of any neuroblastoma treatment regime.
After researching the alternatives, we decided that New York was definately where Emma needed to be, the only problem was, would they accept her into this rigidly defined research program? We began to follow the N7 protocol with the hopes that she would be accepted, which she eventually was. The protocol begins with seven rounds of agressive chemotherapy, followed by radiation therapy, followed by the administration of a radioactive isotope linked (hot) cancer-seeking antibody, followed by a bone marrow transplant, followed by several doses of non-radioactive (cold) antibodies. The ultimate goal of all this is complete eradication of all existing cancer cells.
The chemotherapy was brutal. It knocked Emma down time after time. She dropped to 24 lbs because she could'nt hold down any food, even with all of the latest wonder drugs for nausea control. Her immune system dissapeared after each round of chemotherapy. It was during one of these periods when she went into septic shock due to an internal infection. She spent 10 days in ICU and amazed everyone by surviving. To see her lying on that bed, hooked up to a hundred pumps, complety mottled purple and bloated to twice her normal size, was a sight too horrifying for words. If we hadn't known it before, we knew it then, there was no stopping Emma. She was, and still is my hero.
After a dozen trips to Sloan-Kettering and hundreds of admittances to Brackenridge hospital, Emma has now finished all of her chemotherapy and radiation (including an unexpected eigth round of chemo due to an suprise late positive biopsy). On August 18, we will go to New York to begin the hot antibody treatment. This treatment, and the subsequent bone marrow transplant, will knock her down further than any other, but is key to her survival. We are viewing it with a mixture of anticipation and dread. We will be in New York for approximately two months and are looking forward to returning to Austin with a cancer-free girl.
Emma's medical treatment and the required travel to and from New York has placed a large financial burden upon our family. Even with the incredible support and love of our friends, family, and my job, we are unable to pay the bills.
Emma is registered with The Childrens Organ Transplant Association (COTA) and a 100% tax deductable fund has been established to help cover the anticipated $250,000 required for the medical expenses.
Donations may be mailed to:
Bank One Capital Plaza
5407 North IH-35
Austin, Texas 78723
Please make chekcs or money orders payable to "COTA for Emma" and write account number 1821422894 in the memo space.
|Children fighting cancer: Emma and Tiffany.||Fight absurd regulations that could shut down the net.|