thecookiegal

I have been having a hard time being thankful for anything this year.   But, then I read a blog of another mom whose daughter is also fighting neuroblastoma (and this mom fought her own battle against cancer this year too!)

http://newmomnewcancer.blogspot.com/2011/11/thankful.html?spref=fb

and I did find some things to be thankful for.

I am thankful for:

1.  For all of our Family and Friends that supported us this year.  We are grateful to everything everyone did.  Small or large it meant a lot to us.

2.  For all the strangers that prayed for us, and those that support us in many ways.  We received gifts from people we have never met before.  That was amazing to me.

3.  For all of the Nurses.  The nurses that took care of Alexander were wonderful.  They loved him very much – and even fought over him sometimes!!  These nurses also took care of US!  They gave us the care we needed during this difficult time.

4.  For the doctors that spent countless hours caring for Alexander, trying to cure him.  For the doctors that performed that final surgery.  They spent 16 hours trying to save him.  Both the surgeon and the anesthesiologist from that day, have reached out to us several times.

5.  For the X-ray, MRI, and Ultrasound techs.  They cared for Alexander so very much.

6.  For the cleaning crew at the hospital – John, Agnes, and Ana.  Not only did they take care of his room, to keep him safe from germs,  they would check in on him and make him smile.

7.  For Shawn – the young man that delivered the food trays.  He always checked in on Alexander and brought a smile to his face.

8.  That we had wonderful health insurance.

9.  Thankful to the state of Massachusetts and its tax payers for providing us with MassHealth to help us with co-pays not covered by insurance.

10.  That Richard had a job, that he only worked weekends, so he was able to be with Alexander during the week.

11.  That I did not have to work while Alexander was sick.

12.  For the Child Life Specialists.  They introduced Alexander to the Bubbles he would love so much, and gave him much joy.

Finally, while I wish I had never had to meet them, I am thankful to all the wonderful friends I have made through this journey.  They have helped me through in so many ways.

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!

This picture was taken the day we found out Alexander had cancer. We were still in the ER at that point, and I think we were waiting for results.

Alexander spent 250 days as in inpatient during his 389 days of fighting cancer.  Many more days were spent as an outpatient for long days at the clinic.  On the days we were home, he almost always had a nurse visiting him to check his blood pressure.

Just before Alexander got sick, Richard’s insurance company had their “open enrollment” time.  We had the top plan. However, at this time, that plan price was going to go up significantly.  Since I was not working yet, we looked into the next plan down as it was the same price we were currently paying.  Everything was the same, except that the co-pays were slightly higher.  We figured that even if Alexander went to the doctors every month, had a few trips to the ER, and if I had another baby that year, we would be saving money.  Just about 6 weeks later, the “C” word entered our lives.

For some odd reason I have been getting “this is not a bill” statements from our insurance company. What is particularly odd, is that I have only been getting them since he died!  He is still listed on our insurance web site, so I have been able to find out how much was “Billed” for the services he received.   The total amount that was billed by the hospital was:   $1,997,290.88   This number does NOT include pharmacy bills!!!!  One of his medications was $2,400 for 10 doses!!! (our co-pay was $50) He needed this medication after every round of chemo (however many were in the hospital, so we didn’t need to get it every 3 weeks as many others do)

The actual amount PAID by the insurance company was:  $761,036.90

How the whole billed vs paid thing works is beyond me!  Some charges were paid in full, for some less than half were paid.  One thing that is very interesting however, is how much MORE it cost for him to be treated at Children’s hospital for the few days he was there vs how much it was at the Floating Hospital.  For 2 full days, 2 half days, a they billed the insurance company, $128,537.98 (this does NOT include the charges for the doctors in the surgery).  In November 2010, Alexander had another big surgery, one that was half as long as the last one.  However, he then spent 45 days in the hospital, 18.5 of those days were in the PICU.  The Billed amount for that stay $376,542.26 (again it does not include the doctors for the surgery bill) 

Why the difference you ask?? Good question.  Recently we went to an event for the hospital, and learned that because of the “deals” made with the insurance company, Children’s hospital is actually able to receive twice as much money as the Floating Hospital.  Sure, Children’s is a good hospital, and they have kids coming in from all over the world to go there.  Yes, they have good doctors.  But, Floating has wonderful Doctors too, doctors that came from excellent hospitals, and choose to come to a little somewhat unknown Children’s Hospital.

One of the wonderful things about Floating is the fact that it is so small!  We really felt that we got wonderful care, and that all of the staff from the housekeepers, to the Department heads really cared about us and Alexander.

But, I digress from the topic I started out to talk about, and that is Health Insurance.   Here, in Massachusetts it is required that everyone has some sort of health insurance.  Many do not like this, but I think it is a wonderful idea.  I can’t not imagine why anyone would NOT what to have health insurance.  I understand that for many people Health Insurance is very expensive, and it is hard to afford. But I ask those people to look again at the numbers I posted, and think about how expensive THAT is.  As I wrote, there was the “billed vs paid” amount.  That is great when you have insurance, but when you DON’T then hospitals and doctors want the WHOLE amount!  It is a messed up system!!!   Some people go with a plan that covers 80%.  Again, do some math, and see just how much 20% of almost 2 million dollars is.

I heard someone once say “But I am young and healthy so I don’t NEED health insurance”.  Well, Alexander was YOUNG and healthy too!  No one PLANS on getting cancer!  Or, what happens if you are like a friend of mine, driving along minding your own business and get hit by a drunk driver!?!  Then what will you do?  You aren’t young and healthy anymore!  And if you didn’t have good car insurance, and if the drunk didn’t have car insurance, who will pay the bills?

In Massachusetts we have MassHealth for those that can’t afford Insurance because of their financial situation   Sure, there are people that take advantage of the system, and stay on it long after they need to be.  But for us, and many other cancer families it is a saving grace.  We were apply and receive MassHealth which covered all of our co-pays.  In addition it also offered a premium reimbursement to us.  If for some reason Richard lost his job, and we had to switch to COBRA, it would have helped with that as well.   I am grateful to the State of Massachusetts and its tax payers for this program! It helped us, and many others we know a great deal.

Not all of those in the Cancer word are so lucky.  As I mentioned, one of his medications would have cost us $2,400 if we didn’t have insurance.  I read one story, of a family in California that did have insurance, but didn’t have a prescription plan, and that medication wasn’t being covered.  If that child had to go through 8 cycles of chemo, it would have cost them $18,400!!!

I know there is a lot of controversy regarding “Obmacare”.  I will admit, I have not read the 8,000 page document (have you??) so I am sure there are many flaws to it.  But after having lived through Childhood cancer, I can tell you that something HAS TO BE DONE to help people!!  Healthcare should not be a PRIVILEGE, it should be a right!  Not just as citizens, but as HUMAN BEINGS!  I think it is our responsiblity as a society to take care of each other.  No one gets ahead in this world alone.  At some point in time, everyone gets help, even if in some small way.

(a final picture of Alexander)