It’s been an incredible and busy few week for us (hence the lack of weekly posts) and believe it or not, it was all good (don’t worry, we won’t get used to it). There are several topics I’ll be going into more detail on in later posts, but I thought I would share our good news first.


Young woman in blue cap and gown holding diploma
Kayleigh just after graduation

Our oldest daughter, Kayleigh, graduated from high school at the beginning of June! This is huge for anyone, but it is really special for us. We’ve moved a lot over the years so Kayleigh has attended 6 schools over the course of her elementary and high school education. She had her own health scare and spent most of her freshman and sophomore years at home in cyber school. Thankfully we were able put the last couple of years and she graduated with a great group of friends that I know will part of our lives for years to come.

Seeing her graduate was kind of surreal. She was in the front row so we could watch all of the emotions play across her face. She’s said repeatedly that she was more excited about starting college than she was sad was about leaving high school. She has good friends, but she doesn’t have the attachment to high school like a lot of kids do. Sitting in the auditorium I could see when her thoughts drifted to the grandmother she never met and a friend from junior high who left us far too soon as she touched the necklace that once belonged to my mother.

We have so many reasons to be proud of Kayleigh.

Ken Lantzy All-Star Band

Young woman playing piccolo with tall trombone players playing over her head.
Kayleigh’s picture from Johnstown’s Tribune-Democrat!

Another reason to be proud was Kayleigh’s performance with the 1st Ken Lantzy All-Star Band. I first mentioned the event earlier this year when Kayleigh was notified that she was selected to be part of the honor band. The game was held last week and despite a heavy downpour and flash flooding, was a really great time for everyone. The game was really close and came down to one point with a possible go-ahead touchdown at the goal line with seconds to go.

The band was amazing, especially considering they only had one day of practice. They were to go back over the show before the game but the aforementioned storm forced them inside without having a run through of half-time. Kayleigh had a great time and was featured in a picture accompanying an article about the band in the local newspaper.

A Few Days Away

20170607_102258Thanks to some tax return money and some great folks we were able to get away for a few days. We took the girls to Hershey, PA and stayed at Hershey Lodge for a couple days so that we could go to the park without having to worry too much about Keith’s treatments or getting him over-tired. This was the first time we tried going anywhere overnight since our lives took a dramatic turn last year.

Man in a scotter at amusement park
This is how we roll at Hershey Park

Things went surprisingly smoothly. I’m working on a post now about the experience. We learned a few things and came up with a few clever ideas before we left that other PD patients might find helpful before they hit the road this summer. Look for that soon.

The important part was that we got to take the girls away and celebrate Kayleigh’s graduation and the fact that we’ve made it through the last year. We had the opportunity to be together without having to focus on the day-to-day medical drama that our lives have become. We complained about the weather (it was rainy, windy and cold when we got to the park but the sky cleared by the end of the day), we rode some rides, ate stuff we didn’t normally eat, and basically acted like any other family for the day. It was a pretty special day for all of us.

Remains of Hershey Hot Fudge Sundae
Hershey Hot Fudge Sundae for the win

What’s Next?

Now that the fun is over it’s back to the grind, and paperwork, and advocating to get what we need. We’re waiting to hear on some things, trying to straighten out a few others and generally trying to make the most of the situation we’re in.

Let’s hope that there are more good times ahead.