Baby and Dad battle brain cancer, now the Senate (Full Version)
It all started in 2010. We found out that Ryan had a brain tumor so they did a biopsy. They found out he had a Grade 2 astrocytoma. In 2014, we had Nathan and then in August of 2015, I like distinctly remember sitting in the hospital and they came in and they were like your child has a very large mass in his brain. We're sitting in an emergency room being told that Nathan has this enormous tumor and it's cancerous and and watching Maggie...this is our daughter I mean this is our daughter's family that this is happening to, so it was a very very difficult for us. You know watching our grandson be ill, our son-in-law be ill, and watching our daughter suffer through trying to deal with it all..
I just I can't imagine being her. All of a sudden you're here in this place where your child's sick and there's nothing you can do. In August he had his brain tumor removed, and we did six rounds of chemotherapy so it took a total of seven months that we were at the hospital. We found out that he and Ryan both have Li-Fraumeni Syndrome, which is a gene mutation in the tp53 gene, which is your tumor blocking gene that everyone has. So my husband and son, for us they're going to need lifelong medical attention. They're going to need MRIs at the very least, they're going to need potential surgeries, potential runs of chemo, and the thought of this healthcare bills is scary.
The amount that we got billed for chemotherapy and our hospital stays and surgeries, we can never pay it out of pocket. There's no way. I work three jobs so having trouble affording, you know, medical bills, you know, its only going to get worse if this new Health Care Act passed. There's enough horror when you have a critically ill child, and then to add the fear of losing everything you've got, and eventually saying I can't afford the medicine. That's the frightening disgusting part of it. Its the middle-class that hurts.
Its the people like us that work hard. We work hard for our insurance, but if they're both in a high-risk pool, we can't afford insurance for both of them. If the maximum out of pocket's gone, I can't afford to pay the bills. I can't pay twenty percent of a million dollars. Two million dollars. It's just not feasible for us. You know, puts me in a whole different category of the.
I think they were even talking about different cancer insurance or something stupid like that. You know, in a totally different high risk type. You know, high affordability category.
I think that anyone who wants to change the bill should spend one week on the 12th floor Nationwide Children's Hospital with all those kids, and you see these little bald heads walking around the halls and it is unbelievable. Its not just about Democrats and Republicans, its not just about being wealthy or being poor, its about families, and real lives, and you're playing with with lives.
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