Cancer · Chemo mom · Childhood Cancer · Histiocytosis · Motherhood · Parenting

Childhood Cancer bruising your profession and finances.

I’ve spent the last 24 hours trying to figure out how to articulate this one issue in a way that is understandable, so please be patient with me.  I had a conversation with a fellow chemo mom/histio mom yesterday that drew me back a few years and I wanted to put it out there.  This is the last few days of September, so I thought I’d slide out of this Childhood Cancer Awareness Month with a note for the parents of the Cancer Warriors and Angels out there.   The message is simple:

None of this is your fault.  You are not to blame for the cancer.  You are not to blame for the relationship bumps or explosions.  You are not responsible for the fact that your professional career is not where you thought it would be or is non-existent or is just no where near what you wanted by this point in your life.  You are not responsible (TRUST ME ON THIS) for the financial hell you have found yourself in.

Here’s our story:

In 2007 the housing market was starting to slide.   The banks were hitting walls. We owned a home in North Carolina that we purchased in 2006 at the height of the prices in a town where Dan and I both had steady but low paying jobs.  In 2008, when Sophie was 5 months old, I was offered a job in Florida with nearly a 50% raise.  As an attorney, I knew certain things about my life before I finished law school.  I knew I didn’t want to work 80 hours a week for $150K a year.  Why? Because I wanted kids.  I wanted to see them grow and not miss holidays or birthdays, because I knew that time spent with your children is infinitely more valuable to your kids than anything you can buy them with all the money you earn from the high paying jobs.  So I knew I’d be in public service as an attorney.

I started off working as a criminal prosecutor in NC from 2006-2008, but it wasn’t as safe as I’d like, raising a child in a small town where everyone knew who I was, and in turn knew who my kid was.  I was 7 months pregnant when I started to apply for new jobs.  Let me tell you, criminal prosecutors get paid shit.   I was paid $36K a year.  A YEAR.  That was after 7 years of college, graduating Cum Laude TWICE, passing the bar the first time, and having accolades I had a hard time pronouncing on my resume.  I owed something like $90K for law school…  yeah… that means I was paying nearly $400 a month for student loans when I brought home only about $1600 a month.  Dan earned a little less.  To be blunt, we were tight on cash.

My husband had a degree in finance and worked at a bank as an assistant manager at a local branch.   In 2008.   Picture what was going on right then.   Banks were folding like paper and were not hiring.  He was one of the good guys.  The local guys not making much, just going in and making sure everyone got what they needed at the branch.

So, without really seeing what the housing market was like at the time because we just didn’t know, and not knowing how hard it would be for Dan to get another job if he left the one he had, I took the job offer in Florida, and we listed our NC house for sale.  We moved and for a while were able to float the house in NC and a small apartment in Florida on what little savings we had.  But then the doctors figured out something was going on with Sophie and BAM, we were screwed.   Our costs went up exponentially and our income dropped.

Some friends and family set up a COTA (Children’s Organ Transplant Association) account, where they can collect money to help pay for the costs of an organ transplant, and we knew Sophie needed a new liver at that point.  The COTA account paid for the big hospital bills and the gas to and from and her medical appointments in Gainesville.  It cannot be used for things like rent or car payments or debt.  Only medical related stuff.

ALSO, I worked for the state of Florida.  Which means I had health insurance.  It wasn’t incredible insurance, but it covered 80% of the costs and most of the prescription costs.   And yet we still were facing mounting costs.

The breakdown of costs that no one knows about outside of chemo land:

1. First aid supplies that you actually go through.  Every time Sophie’s port was accessed or they biopsied her or she had surgery or any of a number of other things that left a wound, we’d end up going through bandages to keep a fresh clean one on her because she was immunsuppressed.
2. Formula/food costs.  Sophie couldn’t keep down anything but Nutramigen.  That’s $39 per little container.  That little container would last 4 days.  Do the math.  30 days in a month = 8.5 of those containers at nearly $40 each.   That was $340 a month… ON SOPHIE’S FORMULA ALONE.
3.  Gas to and from all the doctor’s appointments (we rarely used COTA for this because we didn’t want to deplete the COTA account since we were looking at a liver transplant and knew that would drain the COTA account).
4.  $25 copay each time she ended up at the pediatrician or for weekly lab work. And she was at the pediatricians for everything.  Any fever = an ER visit, inpatient stay, or at least a doctor visit.  She was in the doctor’s office at least twice a month.
5.  Clothing.  Sophie burned through it.  Sometimes literally.  Chemo vomit will burn things.  We had to get her new clothes like crazy.
6.  Cleaning supplies:  With an immunosuppressed kiddo, EVERYTHING had to be clean.  Everything.  So we cleaned things like mad.  And those bleach wipes aren’t free.

Dan got a job at a local credit union, and I have to say, those people are saints for what they did for us during Sophie’s illness.   After Sophie got sicker, we were told she couldn’t go to daycare, so we found a stay at home nanny for $11 an hour.  She was a crook, despite her pages of recommendations.  Legitimate honest to God crook. Long story that I’m not going into, but we caught her and were officially scared off of letting someone watch our child in our home.

Dan stopped working.  The credit union was amazing and let him become a “zero-hour employee”, so he could work on the days I had off.  (I LOVE Envision Credit Union!) I was able to change my schedule to let me stay home on Thursdays and work 4 ten-hour days a week.  Thursdays because that’s when the chemo and liver clinics were held, and that worked out great when the chemo started to flow and we had to go to Shands every Thursday, 5 hour drive…. ugh.   So Dan worked on Thursdays and Saturdays.   We applied for SSI because Daniel was officially “out of work,” being able to only work for two days a week because of our daughter’s cancer.  That’s what Disability is supposed to be for, right? And yet we were denied.  When my husband was forced to NOT WORK because of our child’s CANCER.   I can’t be any more angry about that then I am.

We had to short-sell the house in NC.  We literally had to decide between our daughter’s formula and that $400 a month student loan payment (which I just couldn’t miss if I ever wanted the fed government loan forgiveness thing to work) OR a house we were never going back to in NC.  We let the house go.  At the closing, the @$$hats who bought the house for $30K less than it was valued showed up with $6K less than they agreed to pay, leaving that on us.  They refused to go get it for the closing.  And without it, the sale would fall through and the bank was going to foreclose within 15 days.  The buyers did this to us, completely aware of the position we were in.  At closing.  Not a joke.  There’s a special place in hell for people that take advantage of people while they are down.  Talk about being kicked while down. And THOSE BUYERS are going to that place in hell.   There’s no end to horrible people in this world.   But Karma’s a bitch, people.  And I’m sure karma is taking care of it.

So we lost the house, our credit was in the mud, SSI told us “No”, and we were officially spending about $600-$1100 a month more than I made, depending on the month’s costs.  All of that just ended up on credit cards, because we needed things like gas and electricity and a car and a house and food.  Silly us.   Needing things.

COTA took care of the big medical bills for us because we have incredibly generous family and friends.  And we got Sophie through it.  At some point when we were in the short-sale process Dan and I just looked at each other and said “If we can come out of this with Sophie alive, the rest of it we will deal with on the other side.” So that was how we approached the financial situation during Sophie’s illness.

It amounted to about $24K in debt, not including house, cars, and student loans.  Granted a part of that was likely the costs of Dan going back to school for nursing, but I don’t think his entire degree was $12K, and we got more student loans for him to cover part of those costs.  But still… on this side of the cancer, we were facing down $24K in credit card bills.

I say all this to tell you that cancer is expensive.  And not just cause of the medical costs, though those are astronomical.  To explain how expensive the medical care is, COTA has paid about $26K towards the medical bills.  That is what was left over after insurance and our copays were paid.  Those would have been our bills if it wasn’t for our family and friends and COTA.  When we get the yearly breakdown of what insurance covered, though, a bigger story plays out.  The total insurance paid over the last 7 years was about $1.2 million for Sophie’s treatment.  Yes…. $1.2 million.  For the months in the hospital.  The chemo.  The liver transplant evaluation.  All the scans.  All the endoscopies.  The helicopter ride (which was $38K on it’s own and 100% covered under insurance).  The ambulance rides.  It’s unreal.  Thank GOD we were insured.   And whether you like Obamacare or not, Thank GOD that legislation got rid of lifetime coverage caps.  Cause Sophie will hit the original cap of $2 mill if she ever gets that liver transplant.  And she’s never been uninsured.

Now here we are, standing on this side of the cancer.   I am 35.  I don’t want to sound like I’m bragging, but I’m damn smart, and a damn good lawyer.  I’m an asset to all the places I’ve worked because I work hard and try hard and if I don’t know something or how to do something, I figure it out.  I am NOT the smartest person in the building, but I will damn well sure be the hardest working if I can.  I have always worked for the state in public service, but once Sophie got sick, I wasn’t willing to risk insurance changes, so I work for the state and that is likely where I will stay.

We had a few extra obstacles dropped on us after Sophie got better that didn’t help our debt situation, but we are where we are, not by frivolous spending or extravagant living.  We are in middle class suburbia, with massive debts and little to no savings because of cancer.  I am no where near where I thought I’d be at 35 professionally, and I KNOW Dan didn’t expect to be starting his career over at 35 as a nurse.  But it is what it is.  And it’s not our fault that it is.

We can’t blame ourselves for the financial position we are in.  We can’t get angry that we aren’t higher up in positions than we are because we chose certain things for our family.  Instead of choosing to keep a nanny or risk Sophie’s health by sending her to daycare, Daniel ended up starting over from scratch with his career.  If he’d stayed in banking, he might be a branch manager right now, but we needed a medical professional in our house, and he wanted to be the one to provide that protection for our daughter.  So he is where he is because he CHOSE to give up his career and change his life goals for her.   And he doesn’t regret it.  And hes my personal hero for it.

Instead of taking a team leader position or applying for a division head position, I stayed where I was because I needed to work the 4 days a week.  I needed to be able to take off when I needed to in order to be there for Sophie.  YES Daniel could have done it.  But I’M HER MOTHER.  I wanted to be there holding her when the chemo flowed.  I was the one that needed to give the hugs and clean her up and love on her and argue with the doctors and make sure it was done right.  For all of Daniel’s incredible skill and intelligence, I am the attorney with the health law background and the backbone of steel.  I’m not saying Dan wouldn’t have been just as good at being a medical advocate.  But I was definitely the scarier of the two of us during this time, and I stand by believing that was necessary for Sophie’s treatment.

AND as her mom, I needed to be there…. as mommy.   If you don’t have kids, you might not get it, but mommy needs to be there from the vaccine shots to the chemo infusions.  I’m the mommy.   So I took the months off and moved in with Sophie into the hospital.  I went to every doctor appointment and chemo infusion and endoscopy and my work was just on hold.  And that’s how it should have been.  A career builder it was not.  But I don’t regret it.

For other moms that have to quit working to take care of their kids, this is even more of a dent to the profession.  You have to explain that gap in time on your resume to potential employers.  And it’s not like it’s your fault.  You did what you had to do.  You chose to be the good parent, and honest to God, being a good parent is SOOO much more important in life than being a good employee or lawyer or whatever you are.  In the long run, you made the right choice for you and your kids.  And you won’t regret it.

So I went into this whole blog post trying to lay it out for the moms and dads that are standing there looking at their lives and feeling horrible.  But as I said in my last post, the good doesn’t balance out with the bad.  Life is just one huge trial we all have to survive.  The Hunger Games on steroids.  BUT you guys are doing it right!  No, you are not likely to be in the place in your life that you want to be right now.  It’s okay.  You’ll get there.  OR if you don’t, you’ll find a new place to be.  Sometimes your priorities change your goals.  Just look at Dan.  Did he think, when he was 21 and getting that finance degree, that he’d spend his days giving patients chemo?  Not on your life.   Did I think, when I went into law school, that at 35, we’d be swimming in debt in a small house with three kids stuffed inside, barely making ends meet every month?  Nope.  No frickin’ way.

But I wouldn’t change my decisions.  My goals have changed.  I no longer care to be that career-driven, glass-ceiling-shattering, powerhouse woman.  Now I want my kids happy and healthy.  I would like to be out of debt.  I would like to be able to pay for new clothes whenever I want to.  Or not have to wait until my shoes are embarrassing before I get a new pair.  I would LOVE to have a savings account with extra cushion and fun money.  But let’s be honest… in this economy?  I’ve got a job and my kids are alive and happy.  I’ll count that as a win.

If you are in my shoes, or even if you haven’t had to face down cancer, look at your life and don’t be so quick to judge yourself.  It might not have been cancer, but life has happened to you, and there is ABSOLUTELY NOTHING you could have done to prevent it.  You’ve had car problems compounded by unexpected house fixes.  You’ve needed new clothes for the kids cause, for some stinkin’ reason, they keep growing!  And the middle one just eats SO FRICKIN MUCH you can’t keep the fridge full.  You thought you’d be a somewhere else, doing something bigger right now, but let’s face it, the world isn’t what our parents had.  In fact, our parents are still in the higher positions they were in at 38, so that slot has yet to be vacated, and there are people in line in front of you for that job, so just sit tight.  You can’t exactly become the CEO on a bachelor’s degree anymore.  Hell, a law degree isn’t even enough anymore.  The majority of the people I know are under employed and severely underpaid.

At this point, if you are unhappy where you are, all you can do is try to figure out what you can do right now to buy you the time to get to what you really WANT to do.  I’m all about following dreams.  That’s not to say you should quit your job to write the great American novel.  I’m all about you doing something you love that feeds you too.  But if you want to write that novel at night and send it off to publishers on your weekends, please do.  I’ll read it when it’s published.   And until then, stop beating yourself up.  Life happens and it’s not your fault that it happened to you.

There is a light at the end of the tunnel…. and it’s not the train.  It might not be the Macy’s Day Parade, either, but it’s not the stupid train!  I promise.

5 thoughts on “Childhood Cancer bruising your profession and finances.

  1. Seriously? Did you write this for me?
    At the risk of sounding like a crazed stalker weirdo (which I totally am not I promise) I think we should be best friends.
    Writing that book… I’ll send you a copy. And I laughed out loud for real at the train… I say that all the time!!!!

    Liked by 1 person

  2. God, am I so grateful to have the NHS here in the UK. It is far from perfect but the thought of having to worry about paying for medical bills on top of the stress of having a child with cancer is horrible!
    Thanks for sharing this, I so feel like I should be much further in my career but have realised that being there for my kids is so much more important.


    1. If anything, I learned from Sophie that what matters is being there and experiencing what life we have with them. The rest of it will figure itself out in the end.


  3. I have just read this post and your blog – thanks for sharing your life with people living with having kids with chronic diseases. I am in Australia and it isn’t cancer but heart disease and an autoimmune disease (with no actual definite name!) we deal with. My husband was re-trenched and he re-trained too and I felt guilty for working. We didn’t have massive medical bills to pay though as Medicare pays most of it for us (something we are so grateful for and wish you had), but my wage didn’t cover our living costs. And we are both professionals as you two are. It isn’t fair! Life is slowly getting easier and I hope yours will too. My son is on an immunosuppressant and has to have a trial off them starting tomorrow which is scary. I admire the fight in you and wish you the best – you have been to hell and back! Kirsty x

    Liked by 1 person

    1. Good luck on the trial! Life with an immunosuppressed kid is terrifying. And Thank you for reading! I love writing, and it makes me feel good when people like what I write. When it does some good more than just getting the fuzz out of my head. ❤


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