"Hello?"
"Good evening, Mr. Sloan. This is Dr. ____ calling with the results of your tests."
"Hey, Dr ____.! What's the good news?"
"Well, I don't have any. I'm afraid you have Primary Amyloidosis."
"Alright... Well is it fatal?"
"Yes, it is."
"Well how long have I got?"
"Maybe 13 to 18 months. Could be less depending upon severity and organ involvement."
My mom and dad's Friday night at home, chatting and enjoying a glass of wine, had come to a shocking end.
After another doctor confirmed that, without agressive treatment, there was "no prognosis", they took action right away. Amyloidosis is rare and, 10 years ago, treatments were pretty much experimental. Doctors refer to it as the disease from hell. Once a treatment plan was in place, another battle arose. Insurance wouldn't cover it unless he went to an out of state medical university for the duration. This was not an option for my dad. He refused to accept this and fought the insurance company, who eventually agreed to allow him to stay at home for the treatment.
Within about a month of the diagnosis, they harvest his stem cells, administered high dose chemotherapy and began his stem cell transplant. For three months, he was quarantined in their home, only leaving for his daily visits to the cancer center with a mask on for protection. The high dose chemo brought his immune system to that less than a new born baby. Their home was sterilized (new sheets, clean like you can't believe, no contact with anyone other than my mother, no food from outside the home (my grandmother would leave bags of groceries at the end of the driveway), the list goes on.) My mom was taught to give him his daily shots at home. She was his caregiver and companion.
Last Saturday marked 10 years since his stem cell transplant. It is nothing short of a miracle that he is alive and healthy 10 years and 8 grandchildren later! Deb put together a little 10th birthday party and he was so surprised!
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| Surprise!!!! |
Happy birthday, Daddy!
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