Five

Bacon is turning five, and I don’t remember ever being so sentimental about any of my others moving out of toddler-hood to actual KID size. Maybe it is because there always was another nipping at their heels and he’s the last.

He actually asked for a new baby for his birthday. He said we need one because he’s going to start school and if we don’t get him a baby brother, for ME to play with, I will sit home and cry all day without him. He’s wrong, right?

His brother request includes a baby with ‘black hair like Ethan’ and blue eyes like the rest of us. This child will be named Alfred or Slush. He hasn’t decided between the two yet.

We’ve been talking a lot about his birthday lately, since it’s coming soon. He’s requested grilled cheese and ‘motato’ soup for dinner. He wants us to sing the song with the lights out, and to say Bacon not Logan. But if we say Logan by mistake, it’s ok- we can still have some cake. He’ll know we mean him. But if someone says another name like Lili, then he’ll get mad and they don’t get cake.

I asked him why he decided to be born on our anniversary, and not pick his own day. He says he knew we’d share with him.

Some of his other desires for celebrating his birthday include putting up the Christmas tree and hanging the lights outside the house so Santa knows to come here. His requests seem quite reasonable so we’ll probably go with it. I asked if he wanted to invite anyone over to share his cake and he said just his family and Mary- and her ‘lady Miss Arika. That to me makes Mary sound like Royalty, don’t you think?

Last night as he was sleeping all smushed up against me I was thinking he smelled like a boy and not a baby. I wonder just how old is a kid before he’s too old to cuddle every night…. because even if I’m breathing in his sour boy sweaty smell and choking on his hair, I don’t think I’m ready for him to be big yet.

*Ugh my formatting is all off on this post but thanks to my lovely headache (if you aren’t on my FB, I’ve been having a complex migraine for over a week) I can’t see straight enough to mess with any coding.  I’ll fix it later because it’s going to bug me.

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, […]

[Continue reading...]

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 […]

[Continue reading...]

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 […]

[Continue reading...]

‘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 […]

[Continue reading...]