Every person’s story is different with paying for medical expenses, but no matter what, medical care is expensive and is never a fun thing to pay for. Finances are also awkward and often secretive, but a question I thought some people may wonder about, especially since so many people have generously helped us out. I feel like there is a lot I could add to this – and maybe I’m even sharing too much? I’m not sure, but I wanted to at least try sharing about it. By God’s grace we have been able (so far) to avoid medical debt, but it was a really close call. This is the story of how we could have been in a WAY worse financial situation due to the insurance (or lack of insurance) we were on right before the kids were diagnosed!

EOB from ONE of Eliza’s chemo visits

We moved back from Nebraska in 2016 and started looking at health insurance options. Health insurance isn’t cheap! Seth’s insurance was covered through his employer but to add me and Eliza it would be around $800 a month. We looked around for cheaper alternatives and found Medishare, a Christian health-sharing company that is not officially “insurance” but qualifies as insurance for tax purposes. We only had to pay $316 a month for Medishare! (There are several other companies like this including Liberty and Samaritan’s Purse, but I’m not as familiar with these.)

Medishare does not allow pre-existing conditions, only will pay for 6 months of new prescriptions, does not pay for preventive annual appointments (except for kids), and has a lot of other strict requirements. I thought we were a very low-risk family since we had no family history of significant medical problems so it seemed like a great choice for our family. Things were going fine with Medishare and they paid exactly what they said they were going to pay for Oliver’s birth and care after he was born.

Fast forward to April, 2017. Our pediatrician recommended that Eliza go to a couple sessions of physical therapy to help her learn to walk. I got prior authorization from Medishare saying they would cover 10 sessions of PT. Eliza went to 3 sessions of physical therapy before I got a bill saying they would pay nothing. I thought for sure it was a mistake, so I called Medishare and they said “oh, gross motor delay is a psychological problem, not a medical problem so actually we will not be paying.” I explained how we got a letter in the mail saying it would be approved, etc., etc., and over and over again they said, “We are not insurance, we are not going to pay, there is no way you can appeal it.”

Eliza will have 4 MRIs per year under anesthesia for the next 2 years.

I was SO frustrated with the whole situation. We ended up paying several hundred dollars cash for Eliza’s physical therapy but I started to get very nervous about what they would and would not cover, ESPECIALLY after getting a letter in the mail saying something would be covered when it was not.

When open enrollment started, Seth and I made the decision to switch our family all on to his work plan. This meant paying over $1,000 a month for insurance instead of just $350. What a HUGE blessing this turned out to be!

Eliza was diagnosed just 8 months later, and Oliver only weeks after that. Our medical bills skyrocketed. I attached a photo above of an explanation of benefits for ONE of Eliza’s chemo visits: $11,600. Eliza gets chemo every week for a year. She also had 6 ER visits this year for fevers. I’m still not entirely sure what Oliver’s whole transplant cost, but it is in the MILLIONS of dollars. This is a picture of a bill from Oliver’s first inpatient hospital stay.

If we had been on Medishare for the cancer diagnosis, I know I would have spent hours and hours on the phone fighting bills, fighting for pre-authorization, and fighting for things to be covered. It would have added more stress to an already incredibly stressful situation. I really think God used that denial of the physical therapy (which looking back seems like such a minor thing) to direct us to switch insurance.

We also had very kind friends who started a Gofundme for us once Oliver was diagnosed. This was a huge blessing and helped us pay our $7,000 deductible for our insurance which became due very quickly. It will also help us pay our deductible this coming January. We will most likely max out our insurance deductibles every year with the long-term follow up for our kids for the rest of them growing up. The Gofundme money also helped so much with gas for 100+ trips to Seattle, meals at the hospital, getting new carpet for Oliver’s bedroom that did not have pet dander in it, and helping adjust to me suddenly not working for 6 months. It also helped us pay for SPF 50 long-sleeve swimsuits, some over-the-counter medications, SCCA parking garage fees, and so many other treatment-related things. We are forever thankful and grateful for every single person that so generously supported us. Thankfully Seth was able to miss minimal work, but this is not the case for many families going through pediatric cancer treatment.

We also bought big quantities of Clorox wipes, hand sanitizer, and other cleaning supplies

I know people (including my parents!) that are still on Medishare and are very happy with it. I’m not trying to bash them, I know for some people it is great…I just 100% believe it was God’s grace that pushed us to switch. We are hoping and praying that they never change the rules about pre-existing conditions for our kids. Our healthcare system is so expensive and at times can be so complicated but we are SO incredibly thankful for Seattle Children’s Hospital and the extraordinary care they have provided for our children. They have been so kind and compassionate towards our family and have helped us out in so many ways. We have also been extremely blessed that we have not had to fight for medications or services to be covered by our insurance (so far).

I never thought our family would actually really truly need to rely on insurance, but I am forever thankful we have it!