You're in miracle territory now.
You think I’d be an expert by now. An expert at waiting that is. “It’s just a waiting game” is a phrase that I’m very familiar with. Nowadays I’d say “Sign me up for that game, I’m pretty good at it.” I’m not sure anybody actually ever really masters it, but if you were to ask me on a scale of one to ten about how good I am at waiting I’d probably say a 9.2. (Whole numbers are rookie scores)
In every difficult life circumstance we’ve journeyed through, waiting has been the main character. I think waiting might be the foundation of difficulty. It would’ve been much quicker (in some cases) to have kids naturally, right? The infertility process is a bear on a person, both physically and mentally. It only took us 5+ years of waiting, dozens of doctor appointments and 13 embryos before we had our daughter. Lots of waiting. Contested adoptions most certainly take longer than non-contested I’d imagine? It was well over a year before a judge officially stamped Roeters on Shiloh’s birth certificate. Lots of waiting.
Two weeks ago we had the “here we go again” moment. It was a difficult day. Truthfully, the last few weeks have been very tough, both physically and emotionally. It was only the second time I’ve uncontrollably cried tears of sadness over this stupid disease since the day of my diagnosis. I hate spiders, bandaids in a pool, and hair in the shower drain, but I’ve learned to handle my MS pretty well. It’s not a flex, it really is the truth. The pain is terrible, but I’ve gotten really good at waking up everyday and doing life as best as I can.
Let me preface by saying that this latest update was written over a period of a couple of weeks while navigating many changes and expectations.
It was Thursday, April 23rd and we were one day from settling on a date with our doctors to start my stem cell transplant. One day away! I had pictured the following day (Friday) in my mind. Despite my anxiousness about leaving my family for my stay in the hospital, two Fridays ago was supposed to be a day that we celebrated having a firm and fast date to get started. I’d walk out of the hospital Friday after scheduling with my doctors, maybe grab a celebratory margarita and go play one last round of golf before I tucked my clubs away for the next couple of months. I was so excited to update you all that things were moving along as planned.
So you can imagine how it would feel after having our final meeting with the finance team at the hospital only to see that they changed the estimate for the procedure from $150,000(ish) to $423,000. The day before scheduling, the cost basically went from a 3 bedroom, 1 bath house in Rochester in 2018 to, well…. A 3 bed 1 bath house in Rochester in 2026. The only difference is this price increase happened over the matter of six months. It was now almost half a million dollars and we were told “there is nothing we can do about it…there are no discounts.”
Taken-aback would be putting it lightly. It felt crushing. It still feels very confusing. How they got to that new number both didn’t matter and deeply mattered at the same time. I don’t have half a million dollars. Not even close. During our call with the finance person, I started asking a lot of questions, but kept having to stop halfway through my sentences as I couldn’t quite form my words. Any bit of energy I had left my body to make room for anger that was billowing up inside of me. Surprisingly, Amy was calmer than I was. Being quick to listen, slow to speak, and slow to become angry is something I’ve always subscribed to, but this anger came on quickly. I wanted to expose what I felt like was an unethical and grave injustice in a fiery way. How is this even possible? We did not share this unfortunate news with more than a handful of people. One of my friends told me “You’re in miracle territory now.” He was right, but it felt like we needed more than a miracle. Although, if you know our story, we’ve spent some time in miracle territory before. Admittedly, I often forget that place still exists.
We had been planning for over a year! Plans that we believed were aligned with what we thought was a proper estimate from the hospital. I’m not just talking about financial planning, but planning for work, family life, vacations, weddings, and don’t forget the emotional planning and investment our kids had done. We’ve put in some hard work on this thing.
I don’t want to go into the nitty gritty of our discussion with the hospital administration as we’re still working through all the details of that, but I do want to continue to shine a light on how broken the healthcare system is. Broken actually seems like a generous word to describe it. This feels broken beyond fixing. Shattered might be the correct word?
Two different estimates from the same hospital were light years apart. Somehow we were supposed to come up with another $300,000 just to complete the procedure, and 50% of that new number so that we could schedule anything at all.
It’s not a coincidence that the same day that I received the news of the stem cell transplant price increase, is the same day we received our new employer health insurance rates. Almost laughable! A 20% increase in premiums! In my opinion, health insurance is probably one of the biggest scams in America. The CEO of my insurance provider made $4,000,000 in base salary last year while people across the country are fighting to afford a bottle of Aspirin. Oh, but don’t worry! They’ll cover your GLP1 meds while denying your gym membership. I’m not denying that he probably has a difficult job. I couldn’t do it, nor would I want to. But something has to give.
We’re still working through the insurance piece of this, fighting to get even a fraction of the procedure covered. I wrestle with the thought that my insurance provider would rather pay $180,000 per year for the rest of my life to stay on my infusion meds than pay that amount ONE TIME to cover the cost of my stem cell transplant. Wild right? It just doesn’t add up. I will say, we’re grateful for my doctor who has been such an advocate for my battle to have this procedure done, not only with insurance, but with the hospital behind the scenes.
After the finance meeting, Amy jumped into battle mode. When she’s in this mode, you don’t want to be across the aisle from her. It’s scary. She’s scary. I had nothing left to give, but she was all in. For days, she researched NYS laws, hospital billing requirements, the differences between self-pay rates, chargemaster rates, and insurance rates and really anything else you can think of. She made phone call after phone call. We networked, crafted intentional emails questioning everything that we had been told. She tapped into every relationship we had to get answers. Neighbors, retired hospital workers, and co-workers serendipitously rallied around us, tapping into potentially influential people that could make a difference.
I had already decided in my mind that this wasn’t going to happen until next summer, and likely not in Rochester at all. I was calculating how much worse my body would feel another 12-months from now. That made me the most angry. Nonetheless, we dug up a few new names and email addresses, crafted one last email and fired it off. We received a response within a day letting us know they’d get back to us soon.
I prayed a lot.
On Thursday of last week, we received a phone call from the hospital. Amy answered. She was kind, but anxious to hear what they had to say. The lady was also kind. “We wanted to let you know that we’ve gotten the estimate down to $376,000.” There was a short pause when nobody said anything. Amy and I stared at each other mostly expressionless. The lady continued “and we’ll be discounting that down to $164,000.” We had so many questions for her. How did this happen? Why a discount now? How is this possible? At the same time, the phrase take it and run seemed to trump our desire for answers. At least in that moment. While over the original estimate, it was still in the same ballpark.
It was a huge sigh of relief mixed with some skepticism. Our doctor explained to us that not only is this new for them medically, but it's also new for the hospital administration. It is certainly new for me. With uncharted territory comes a great need for grace.
On Thursday, May 7th I walked into the hospital and made our deposit, $82,150. Exactly half of what we’ll owe at the end of this whole thing, barring any surprises. I was tempted to bring it over in duffel bags filled with singles. In all seriousness, I was relieved and filled with gratitude for all the people that have supported our family in making this possible for us. Who knew that writing a check for a medical procedure would be a relief. I’m in awe of my community and the generosity people have shown us. You all have provided serious financial relief and hope to my family.
We received the official phone call from our transplant team last night while watching my nephew’s baseball game. Thursday, June 18th is the date. The start of my new immune system. I read a quote last week that said, “Whatever you are waiting for or believing for, God will not be late.” I will be resting in that.
Thanks for checking in on me. We feel the love and prayers. I love you.