Today is the 8th Remission Anniversary for Sophie defeating Langerhans Cell Histiocytosis, a rare form of cancer. Eight years ago today, we were told that Sophie’s cancer was gone. Eight years ago today, we had hope that Sophie would grow up ,she’d grow old, she’d have a wedding and a job and children and a future where she was healthy and happy. We knew she’d have a long road in front of her with the liver issues and such, but I could finally see her future. I could finally picture her as an awkward tween, a cranky teen, a beautiful college student, a blushing bride, a boastful mother. I could SEE her growing up healthy and happy.
Eight years ago, the sun rose in the world where I felt like we had fallen into perpetual darkness. I can’t be more thankful than I am for the doctors and researchers and nurses that kept her here and helped her fight back to being the incredible,healthy 9 year old that she is today.
This day is glorious and beautiful and such a joyful day to celebrate. But this year it is tarnished by the future that may be looming over us. Why? Because she is likely near her lifetime cap for the insurance policy pay out due to all the chemo and scans and surgeries and endoscopies and helicopter rides and….. the list goes on. All before the age of 5.
Because she was a sick baby, she may be uninsurable for most of her adulthood. One car accident or badly broken leg or pregnancy, and she’s likely to hit that lifetime cap. And then she will be unable to access affordable healthcare. So as an adult she will forego going to the doctor when she’s sick until it gets dangerous. As an adult, she may forego getting a the prenatal care she needs to protect herself and her child, possibly causing permanent damage to herself or her child. She won’t get preventative check ups or immunizations that keep her healthy.
Why? Because the Affordable Care Act (ACA), Obamacare, is looking like it’s going the way of the dodo. The ACA prohibits insurance companies from having lifetime caps, which are maximum amounts that insurance companies will pay out for an individual on an insurance plan. Prior to the ACA, some plans had a $1 million cap. Ours had a $2 million cap. Which sounds like a lot, but when you factor in that an outpatient procedure like gall bladder surgery can cost up to $16,000, you can imagine that 4 years of chemo and surgeries and nearly 3 months straight of inpatient hospital stays and a helicopter ride and a 2 and a half hour ambulance ride, well all that added up to a pretty penny. That lifetime cap is looking like it’s going to be something we need to worry about in the foreseeable future.
So where are we today, on this day where we are going to be celebrating my baby girl kicking cancer’s ass 8 years ago? We are hiding our fear from her, though she knows about the lifetime caps and understands the implications… she’s a bright child. We are smiling, though we are juggling calls to insurance companies to ask about long term implications and trying to get the information regarding the pay out so far. We are singing songs and hugging and truly rejoicing in having her still… and her daddy and I are trying to figure out how to make sure she has access to healthcare as an adult so she can stay healthy.
And I am scared for her future. My healthy, 9 year old cancer survivor is now facing an uncertain future again. And that’s not fair. She’s already kicked cancer’s ass. Why does she have to fight this battle too?
One thought on “Eight years and It Doesn’t End”
I’ve been calling my members of Congress multiple times a week. We have to tell our kids’ stories – they deserve better, they deserve to live.