September 20, 2016

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Maintenance Day 530: Finances

I’ve purposely avoided this topic for two years because it’s an uncomfortable thing to talk about. No one likes to talk about money and there are people in much worse situations than we are. But since September is childhood cancer awareness month, here is another thing to be aware of. I can’t speak for other families specifically but in the general sense it’s all the same.

We are used to financial situations. When Scarlett was diagnosed, we had already nearly met her deductible with all of her specialist appointments, X-rays, ER visits…She spent five days at Children’s Hospital. They were pretty uneventful. Nothing too out of the ordinary for a new leukemia diagnosis. We got the bill about a month later. It was over $77,000. Thank goodness for insurance! For the rest of 2014, I kept really good track of what we paid for every appointment. My goal was to keep track of how much leukemia treatment cost and how much we actually paid. At the end of the year, less than four months into her treatment, I called the billing department to get a printout of her bills. They kindly told me that they didn’t have enough ink or paper to print a complete bill. They would have printed a book.

We have spoken to social workers about programs to help pay for medical expenses. Unfortunately, we make too much to qualify for Medicaid. Our family is in that unfortunate bubble where you make too much to qualify for help but you don’t make enough to pay your bills. We are extraordinary grateful for insurance to help us pay but we still have a deductible to meet. So far this year, Scarlett has had nine monthly appointments and, for each one, we have had to pay $1000. There are so many other ways that we could spend $1000 a month. That doesn’t include medications, supplies, or gas to get to the hospital.

On top of the actual monetary cost, families also have to worry about work time lost. When Scarlett was diagnosed, I took FMLA. But we quickly realized that it was just more logical for Brock to be the primary caregiver. He stopped traveling for work, cut his hours and stayed home with her when she was sick. This was absolutely necessary for the first year. Now that we are in maintenance and time is less demanding, it has been difficult for Brock to get back to work. The opportunities just aren’t there. So on top of spending more money to pay for medical bills, we are also earning about 75% less of his salary.

From the very beginning, we sat down and talked about finances. We knew it was going to be a tough few years. We were going to have to give up a lot of luxuries and cut costs. We had already been doing that so we didn’t have much to cut. We don’t have “toys”, we don’t go out, we still wear clothes that we bought nine years ago. But we wanted to be sure to keep a little bit set aside for ourselves. When we were approached about having a benefit for Scarlett, we refused for a long time. We didn’t want to feel guilty if we went on a vacation and have people think that that’s what we used the money for. We didn’t want to be judged every time we bought something. It is a very difficult situation to be put in. We finally gave in and are so grateful to everyone that contributed. It allowed us to have that extra “cushion” of savings for an emergency – which we needed later last year for our flooded basement. And it allowed us to continue to put aside that little extra money to take a vacation this year.

I guess the thing that I want everyone to know is that cancer is not cheap. It can destroy families for many years. When you see benefits for people, it’s just as difficult for them to accept money as for you to give. Even as treatment gets less intensive, the bills don’t. We are struggling more this year than we did in 2014 or 2015. Stressing about money just adds more stress to an already stressful situation. If money and illness are leading causes of divorce, it’s no wonder that divorce rate is so high in parents of children with cancer. The cost of treatment is a lot more than hospital bills.

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