Kate was a healthy, happy baby and toddler. But there were a few scares over the first few years. Pneumonia and lazy eye early on. Later, tonsils and adenoids had to come out. These were mostly routine concerns, and all of them were diagnosed and taken care of immediately. Then the axe fell.
In 1999, when Kate was in kindergarten, my husband was posted to Hawaii. During Thanksgiving vacation, my parents, her grandmother and grandfather, visited for the first time. Although she’d been excited to see them, she was just not herself. She was tired, lethargic and had no appetite. When there was no improvement, we took her to the doctor. He thought she had a sinus infection and put her on antibiotics. But it didn’t do any good.
By the second week of December, my parents had gone home, assuming that there was nothing seriously wrong with their granddaughter. But there was still no improvement. Kate didn’t want to see Santa at a staff party at Fort Shafter, so we went back to the doctor. While in the waiting room, sitting in my lap with her head listlessly against my shoulder, someone came out and clapped an oxygen sensor on Kate’s finger, took a reading and left abruptly. She returned with urgency and placed an oxygen mask over Kate’s face. She then had a chest x-ray, after which we were told to take her to the ER at Tripler Army Medical Center without delay. After extensive blood work, several doctors came in and the curtain was closed. Our daughter had ALL, acute lymphoblastic leukemia, and it was very bad.
A liter and a half of fluid was drained from her lungs, and a massive program of chemotherapy begun immediately. There was a laundry list of drugs, whose odd scary names I will never forget. Vincristine, doxorubicin, mercaptopurine, prednisone, methotrexate, L-asparaginase, zinecard.
Kate was transferred from Tripler to Kapiolani, a women’s and children’s hospital, so she could have immediate kidney dialysis. She was in the number one bed in the ICU, closest to the nurses’ station, which was reserved for the most critical patient in the room. We were told that she had a non-functioning immune system, and her electrolyte levels were “incompatible with life.” After forty-eight hours, she returned to Tripler.
We were terrified. Kate was dying. Her oncologist told us that she was the sickest patient he’d ever had at the point of diagnosis. Children usually just don’t walk in the door looking that bad. If we had come in even one day later, or if treatment had been delayed by twenty-four hours, her heart would’ve stopped or she’d no longer be able to breathe. Kate would’ve been dead.
There are established protocols of treatment for ALL. Very quickly, we were handed a folder; a roadmap of her expected treatments over the next two years. This began with weekly IV’s for chemotherapy and blood work, which lasted six months. The visits became monthly, and then quarterly. Kate took pills every single day for two years. At one point, I dropped an entire bottle of Zofran, prescribed to control nausea, into the toilet. Without hesitation, I called the doctor, who told me to just come in and get an immediate re-fill. I later learned that Zofran retails for $70 a tablet. At fifteen to twenty pills a bottle, this was an enormous amount of money down the drain. But the cost was neither mentioned nor an issue.
Kate spent twelve days in the hospital and then came home. She endured 105 weeks of treatment. She had cranial radiation. Her long beautiful honey blond hair fell out. She vomited after every trip to the hospital and lost weight. Her face puffed up from steroids, which also made her restless and cranky. She endured a series of spinal taps, and had an external catheter implanted in her shoulder. She missed school and suffered mild brain damage, resulting in some fuzzy and frustrating learning disabilities.
But she survived. She was cured. Childhood leukemia is the cancer you want your kid to have. It’s the one with the highest survival rate, over 80%.
As traumatic and nightmarish as all this was, we were spared one fundamental aspect of having to face a life threatening disease. We did NOT have to fight an insurance company every step of the way. We didn’t have to fill out dozens of forms, or get company approval for every medical decision. Her treatment wasn’t determined by cost or whether a doctor was in or out of a network.
Kate had the most excellent care imaginable. Her doctors were wonderful, even providing me with their home phone numbers. I can’t imagine what would have happened if we’d had to figure out where to go or how to pay for it. She was five years old and dying. I didn’t have any prior understanding of the treatments or options, and I didn’t have the time or energy to research them. I slept in a chair in the hospital for two weeks, only going home occasionally to shower and change clothes.
Our military health coverage allowed me to be a mother and her doctors to make decisions based on her immediate needs, not how much a procedure cost as compared to whether it might be effective.
I have no doubt that she’s alive now because of that health coverage. I don’t know the details of the Affordable Care Act. But I do know that everyone in this county needs, and should have, what my family had. The simple, complete, easily accessible and effective coverage that saved my daughter’s life. If this is a single payer system, and that’s the best alternative, then isn’t that what we should have?
Claire Surovell works for a bank in NYC, and is no longer entitled to military benefits. Kate retains them until age twenty-one, along with commissary privileges. After that, she can keep them only by paying an additional monthly premium.