All About the Benjamins

Aaron & Ryan

People don’t understand what a child with cancer does to a family unless they’ve gone through it. Obviously there’s the fear and anger that this is happening to your baby. You worry about the outcome and hope for the best. But one thing perhaps you might not even think about is the financial burden that falls on the family.

We’ve always been a one income family, living paycheck to paycheck.  When Aaron was an active duty Marine, we were fortunate in that his paycheck, however meager, didn’t change even if he had to take days off.  In fact, they set it up so that Aaron was ‘stationed’ to deal with Ryan’s medical issues.  The military is very generous if you understand the system.  So Aaron brought Ryan to his appointments from day one and I stayed home with Dylan, and then eventually Bacon.

When Aaron retired, my biggest concern was keeping our military medical benefits.  Luckily, that was something we were able to do, so I know that paying for his medical care is not going to be something we have to stress about at this time.  However, Aaron is still our primary bread winner and the railroad isn’t as easy to work with as the Marine Corps.

He’s able to get FMLA and able to mark off when Ryan has appointments, without fear of losing his job.  But unfortunately when he does so, we lose that day’s pay.  And with the ever-rotating schedule and the way the different assignments are often turn based, there have been several weeks where every time Aaron is about to get called into work, he has to mark off and go back to the bottom of the list… leaving us with no pay for several days in a row.

We’ve attempted arranging it so that I bring Ryan in, but the whole process really requires both of us, because one of us has to be at home with Bacon and to get Dylan off the bus.  Frequently, the days Ryan spends at the hospital go very long and bringing a toddler to tag along just isn’t feasible.  Additionally, he could be introducing germs to other cancer kids there unintentionally, not to mention his own boredom.  And if we don’t make it home on time, it would leave Dylan home alone after school and he’s only 8.  So for our family, it’s best if we’re both on hand to deal with the appointment days.

His current treatment plan calls for lots of appointments.  For example, he was seen yesterday (Monday) for some blood tests.  He went in at 10am and didn’t get home until dinner time.  He goes back at 630am Thursday for an EKG and MRI, and will require sedation, so it’s definitely going to be another long day.  Then NEXT Monday he sees the eye doctor, and next Thursday he has chemo, which is an overnight stay at the hospital through Friday.

This week, Aaron is on runs to another town an hour+ away.  He works the train, riding it to the other town.  Then he and the crew are put in a hotel for the night, and the next morning they bring a train back home.  The third day they are given off, and another crew goes.  This week, he worked Saturday/Sunday and had Monday off, so that lined up nicely with Ryan’s appointment.  He took the train again today, so he’ll be gone all night and through tomorrow, but then off on Thursday, again syncing up with Ryan’s appointment schedule.  But next week, it won’t match up correctly, and he will have to call off.

When you live paycheck to paycheck, having one that is a quarter of your normal pay hurts.  When that happens every other paycheck, you slip further and further behind.  I know many people think it’s inappropriate to discuss money, but I also think this leads to the assumption that everything is OK.  I wish our only concern was Ryan’s health, but in reality we are also stressing over rent and other necessities.  This is what cancer does to a family.

Halloween 2017

Even though Ryan had chemo last week, he was feeling well enough to Trick or Treat tonight.  He made a point to to stay inside over the past few days so he wouldn’t ‘catch any germs’.  The twins and Mia went as Stormtroopers and since Bacon seems to think he’s in charge of everyone else, we had him dress up as Darth Vader (or Dark Eater as he used to call him!).

Little random Ryan story- I know we always say he’s the sweetest kid, always thinking about others.  He’s got the kindest heart, and has always had such a positive temperament.  Anyway tonight is just another example that illustrates a typical Ryan type behavior.  One house had a guy in a coffin, and he was dressed as a zombie and was popping out to scare kids.  Well Ryan walked up to it, opened the coffin, and asked the guy if he was having a good Halloween and offered him some candy.

At a different house, we were reminding Bacon to use his manners with the typical parenting adage- ‘What do you say?’.  Instead of ‘Trick or Treat’ or ‘Thank you’ as we were going for, he says to the guy passing out candy ‘Do you have a trash can?’ and hands him a wrapper.  Only my kid… at least everyone involved laughed!

Miss Teen Witch didn’t want to participate in our family costume this year.

Yes, it’s a MLM

YES, I am aware Posh is an evil MLM. It’s a pyramid scheme. Generally only those on top make money. Yes, I’ve done a few of these before. I joined Jamberry for the discount. I still love them and wear them. I stopped being a consultant because I have more Jams than anyone can wear […]

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Ryan Lately

Ryan went back to the oncologist to check his white blood cell counts yesterday- and all is good! He’s set to get another round of chemo (and another hospital stay) next Thursday. Today though he mentioned getting a hair cut since his hair is itching him- and we reminded him that it was most likely […]

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‘Round Here

For the first couple of days after Ryan has chemo, he is wiped out.  Nauseous, sleepy, etc.  But then as the days go by, he gets back to himself and has way more energy than any kid who has to stay home every day should have!  We have teachers coming daily- two a day every […]

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Fizi Fundraiser Update

The above are the scents that will be included in the Fizi six packs that we are preselling for Ryan’s fundraiser!  These come individually wrapped and can easily be separated into smaller gifts for teachers, stocking stuffers, etc!  Here are some super cute packaging ideas if you decide to split them up.  And here’s the […]

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