The biggest toll
The biggest toll was the fact that I had to not work. Work was very, very accommodating, but I really took about four months off. I worked as much as I could, but that was the biggest toll, the financial toll, not being able to have a steady income. But again, we made it work as best we could.
My family is all from New York, so we all kind of came together, and my parents basically packed up and moved out here to help us, so that when Hannah wasn’t getting treatment on a day, my mom or dad could watch Hannah and I could go to work. So we were very fortunate in that we all just pulled together and made it work the best we could.
Mother of Hannah, 4
We didn’t have to stress about the money
Dad: One thing that helped big time was our church. For us anyways, money would’ve been a big deal, but it wasn’t: we had all the money we needed through friends and church. Different churches we didn’t even know gave us money! So we didn’t have to stress about the money part of it – that was a huge help.
Mom: Because I was here, eating out all of the time, spending money on toiletries that I needed, and just whatever came up. And he was working still to pay the mortgage and our electric bill and all that at home…
Dad: And mostly you work because you need insurance! I mean, that’s really why. You would probably drop everything in a second and come here and be with your family if you didn’t need that insurance.
Parents of Sophia, 4
An issue with insurance
Mom: We had an issue with insurance. In the middle of the hospitalization the insurance company decided that they wouldn’t approve her transplant here, that she would be need to be at a local hospital. She was really sick: I didn’t even want her to make the trip and start over with all new doctors! I mean, they had seen her once, but they didn’t know how she was at this point.
Dad: We had a teleconference is what we did, with the insurance and our doctors and our lawyer.
Mom: And once we had the teleconference and appeal, the insurance called back within five minutes and said, “You’re approved there.” But that was a very stressful time on top of everything! She’s so sick, now they’re trying to move us…and we had even formed relationships here, with the doctors and nurses and people helping us out here…
Parents of Sophia, 4
You can’t remember everything
We had trouble with insurance. It was hard making appointments because I was pregnant and had a baby at the same time. I was missing appointments, and then he was sick so I was missing more appointments…then I didn’t send papers in fast enough, so our coverage would stop. So there was a small period where Austin did not have some of his things, but it was just, like, the milk he was getting over night, little things like that. If he really needed something – like his oxygen tanks, his medication – it would go through the clinic. The clinic would get it for him, and then they would get reimbursed, so he would have it.
That whole thing, that first year we moved up there, was really hard. But after we got Austin enrolled on some type of care for Medicaid, he’s been set. I never had to renew after that.
Mother of Austin, 9
We’ve had funny little things, like they’ll deny the Itraconazole , because she’s on such an unusual dose for so long. Like, most people take two weeks, I think. I know one time I went to pay for it and instead of it being $10 it was $1100! And I was like, “Is that a mistake?” I thought the girl had made a mistake, and she’s like, “No, that’s the cost!” I was like, “Is the insurance not paying for it?” She’s like, “Oh! They denied it!” And the pharmacy was awesome and called up, and once insurance knows it’s fine…but the standard thing is “Denied.”
Mother of Eva, 13
We took a transplant helicopter down when we got the transplant call— have that lined up.
I began to do research and studied the disease, and later, transplantation. I searched the Internet, though I was very selective about what I found there. My brother is a doctor and he did medical article searches for me. I got a medical dictionary so that I could look up what I could not understand. I started a three-ring notebook with dividers in it for Nick. I had any lab or test results faxed to me and kept them filed in the notebook, and I kept a log of when I talked with the doctors, insurance, nurses etc., and any instructions or changes for his care. I also kept my articles there for easy reference. I kept a list of his current meds there and anything else that I could need at a moment’s notice. I grabbed the notebook anytime we went to an appointment, procedure or hospital stay. Also, keep business cards there and lists of important phone numbers and addresses.