Yesterday’s post talked about the MEDICAL expenses. But, really that is just a part of what Childhood Cancer costs. There are so many other costs that are not covered by insurance, no matter how good it is.
First of all is Parking. For some reason, hospitals find it okay to charge their patients to park there. I understand that there is a basic cost to maintain a garage, but once it is there, is there really any need to charge beyond that? One local hospital had a very nice FREE parking lot. A few years ago, they decided to build a garage, now it is no longer free. At out hospital, there was a “discount” for patients. However, even that could add up very quickly. Thankfully, the Oncology Department at our hospital were part of a wonderful organization called The Jennifer Creed Fund. http://www.jennifercreed.org/ This is a fund that was set up by the family of a young girl that died from Stupid Cancer in 1974. This fund paid for ALL of out parking! I can not even imagine the amount of money it would have cost us, had we not been taken care of by this fund.
Another cost is food. We spent so many days in the hospital – unable to cook our own meals (although after a bit I did bring in a crock pot to cook for the families now and again!) Again, thanks to another family of a cancer Angel, we were provided with food vouchers to use within the hospital. They also provided us with Dunkin Donuts gift cards!
When Alexander got sick, I was just starting to go back to work. Of course, I could not continue with him being so sick. We were lucky that we did not have any debt outside of our mortgage. Also, our families were able to help us out financially so we didn’t have to worry about me not working. Richard had a job, where he only worked weekends, so he was able to be around during the week to stay in the hospital, come to clinic with us, etc.
Most people are not that lucky. Usually, one parent, often the Dad, has to work. That parent isn’t able to be around to help the other parent. It is a hard thing to watch. Seeing the mom alone in the hospital, while watching the dad, WANTING to be there, bust just can’t. Sometimes, both parents have to work, leaving a child alone. It is not a choice anyone wants to make, but sometimes that is the only choice. Sometimes, there is only one parent around to take care of the child. What do they do in that case? Often, people have no choice but to quit working so they can take can take care of their child.
Some people will throw themselves into their work, so they don’t have to “deal” with it. Others, will not be able to work, because they can’t focus on their job when their child is so sick. Cancer is a 24 hour a day job. One that doesn’t pay anything but heartache.
Another cost, is not one of finances, but of your own health and well being. Just a few months after Alexander got sick, I came down with Strep throat. A minor inconvenience for most, but a huge problem when you have a child with a compromised immune system! The constant going back and forth to the hospital is very draining mentally. It is hard on marriages also. Alexander was in the hospital for 250 days, That meant 250 days that we were not home as a family.
Alexander was our only child – in some ways that made us “lucky”. I say, lucky, because we did not have other children to worry about. Cancer does not just affect the child that has it, but the whole family. Mom or dad have to give special attention to the sick child, which means the well child will suffer, no matter how hard parents try to be in two places at once. The other children, also worry about their sibling – perhaps even wonder if it could happen to them. Thankfully, the Child Life Specialist try to plan special events for the “Super Sibs”, to make them feel special and not so alone in this cancer world.
We were very lucky to have a strong support system! So many family members, friends, and even strangers sent us money, gift cards, food, etc. We are very grateful to each and every one of you for helping us. No matter how big or small, it made a HUGE difference to us!
thecookiegal 
Then there are costs most of us (thankfully) never have to consider, because we’re so close to so many wonderful medical facilities. Many of my friends who do not live here near Boston are actually hours from the nearest hospital– not the BEST hospital, but the NEAREST! And these people do not live in “the sticks” but in Ohio, Michigan, and Georgia. They need to consider the enormous costs of transportation and housing (which adds up SO quickly for people with a chronic illness, never mind Stupid Cancer).
For those of us with a rare disease that can only effectively be treated out of state, the costs add up even quicker. I was lucky enough to eventually win a battle forcing insurance to pay for my surgery and hospitalization out of state. I found a charity to fly me down there. But even then, the costs that Nancy mentioned snowballed to over $9000 out-of-pocket in the 3 weeks before I was allowed to go home. Every follow-up has dug out another $500. Even then, I am among the most fortunate—most go through 4-20 of these surgery trips! Remember, we all have insurance to pay the basic medical costs!
Medical costs not covered by insurance are almost as debilitating as my illness. There are no charities for adults with rare diseases (even though 1 in 12 Americans suffer from a rare disease). Parking, doctor appointment co-pays, prescription co-pays, medical equipment not covered by insurance… it adds up. Many of us end up living with relatives. Many spend years fighting for some government assistance. Many forgo necessary meds and appointments because they cannot afford them. Most of us cannot keep a job because of needing too much time off.
Parking, food, travel, housing, co-pays, lost employment… just some of the financial costs of Stupid Cancer and SO many other chronic or acute illnesses. Even so, without insurance, most of us would not be alive to suffer the financial costs. How would you tally the price of a life? Look at a photo of Alexander, then tell me.