Our CelticLassie was diagnosed with a malignant teratoma in the form of an endodermal sinus tumor at the age of seven months. It had grown so large that it had to be debulked, then she started on chemotherapy. A real witches brew of chemotherapy.
By the time she was fifteen months old, it had grown back and needed to be debulked again. She had a 50-50 chance, at best, of surviving the surgery, which took hours. The photo above is our Celtic Lassie a couple of days before she had that second major surgery. Frankly, I thought it would be the last photo of her.
Following the second major surgery, she continued chemotherapy until she was two. Treatments have improved since she was a toddler, but these cancers are killers. Although it was debulked, parts of it are inoperable. As the surgeon put it, "It is stuck to everything." In order to remove it all, he would have cut the nerves at the base of her spine. She would have been paralyzed and in intractable pain for however long she had to live. I told the surgeon, and my wife agreed, that the quality of one's life is more important than the length of that life.
She still has a piece of the tumor the size of a golf ball in her lower back. The chemotherapy continued until about her second birthday.
When she was a teenager, she began having menstrual problems and our family doctor referred her to a gynecologist. The OB/GYN ordered a CT scan. When the results came back he freaked out, literally. He ended up calling her former doctors, getting the old x-rays and scans to compare to the new one. It has not grown since she was three, but is still there. The doctors believe it is all calcified scar tissue now, that the chemo killed the tumor; however, it only takes one live cell, so it is still a ticking time bomb.
When she was in grade school and high school, we got frequent cold calls from insurance companies wanting to sell us health insurance for our school age daughter. I always listened to their sales pitch, telling them we were definitely interested. You could feel the salesperson's enthusiasm at the possibility of making a commission. I answered the questions truthfully. There was always this long pause at the end, and you could hear the salesperson sigh into the phone.
Each time we got a sales call, we were told they would have to get with the supervisor and would call us back. We never got a call back. Not once.
Still waiting for that call.
As a baby when first diagnosed with the cancer, she qualified for Medicaid in Mississippi. When we moved to Tennessee that converted to TennCare, but not without a fight with the bureaucrats. This is Tennessee's version of Medicaid. However, she aged out of it, and has been uninsured. When she worked at the sheriff's department she had insurance, but has decided to go back to school. She worked for a short time in retail before going back to school, but they had no benefits. She already has a college Degree, and is now in the EMT/Paramedic certification program. Not bad for a kid who was never supposed to live long enough to start to kindergarten.
Last Sunday night, I told her we needed to go ahead and sign up for the ACA. She is in school and not working. She did not want me to pay her premiums, but I told her this needed to be done. We logged on, and signing up went off without a hitch. She got an inexpensive plan with a high deductible, but once that deductible is met, it pays 100%. She was upset with a $5,200 deductible, but I told her the idea was to protect her from something catastrophic, such as being badly injured in a car crash. One visit to the emergency room could blow through that deductible and then some.
Our congressman is a physician, Phil Roe, MD. I have been getting messages from his office apologizing for not being able to repeal Obamacare....yet. So, I sent him the following email this evening:
I just wanted to tell you how excited we are that, thanks to the Affordable Care Act, my college age daughter now has health insurance. As a childhood cancer survivor, she was uninsurable, unless on an employer's plan. However, her previous employer kept all the employees on less than fifteen to twenty hours a week, and listed them all as "temporary" help so they did not have to provide health insurance. Because the Governor preferred to send our Medicaid expansion money to other states that wanted it, she was not able to get assistance, so I am paying her premium while she is in school. Nevertheless, it is still affordable insurance. Beats being laughed at by insurance underwriters. She signed up on Sunday, and we are truly excited and pleased with the Affordable Care Act (aka Obamacare). Just thought you would like to know.
I am sure he will be pleased to read my email.
In the meantime, here she is with some of her little friends.