This day is Heath’s birthday.

Usually, we’d mingle it with Ben’s nearby birthday and our nation’s. Pizza, near beer, backyard fireworks, “torpedo catch” in the pool with the boys, watching the valley fill with professional and personal firework shows late into the evening.

Cicadas and a cooing nighttime bird we’ve not been able to identify.
He loved so many, and I know he’d want you to simply smile today for him, and then pour your hearts into loving God and others. Happy first birthday in Heaven, Heath!

Well, crud. I forgot one of the most comforting facts until I read Cindy’s post on CaringBridge. Dr. Potter said there was nothing we could have done to combat that aggressive cancer even if we found it the day he stared coughing up blood. No chemo would have saved him, no radiation, no surgery. It hid well. And when we saw its effects, it was too late. 

That realization reinforced to me that we truly were just vainly trying to unfurl God’s fingers when He already had Heath safely in the palm of His hand. Remember how your little ones stood no chance of opening your closed fist that held a candy or some other desired object? That game we play with our children is the image under my eyelids at night. Heath was God’s while he was here, and then He scooped him up, and told us clearly that it was time for Heath to move on. 

I physically ache wanting to see him again, to hear that laugh, to enjoy his mind, to ask his advice, to have him take my hand in his. If you’ve had a beloved person move, you understand. If you haven’t yet, my hope is that some of what we’ve gone through will help you on that day.

Odd update: Heath apparently died from cancer. A very, very rare cancer that probably came from the treatment for his (just one “very”) rare Wegener’s Disease.

We were stunned. Cancer? Not at all on anyone’s radar. 

Dr. Elizabeth Potter, our medical guide through this vortex, called a few weeks ago with that “Wait. What?” piece of autopsy information. I haven’t had the motivation to write this update, so my apologies for the delay. 

You might recall that Heath had a rare disorder called GPA (Wegener’s disease) which was being controlled with periodic treatments. This metastatic angiosarcoma type of cancer was probably caused by those treatments for GPA. 

As Liz explained, this is the rheumatologist’s nightmare: the treatment we’re giving a patient causes their death. 

But have no anger; this cancer is aggressive, it hides in the body, and it’s incredibly rare. Heath had an extensive team of wicked-smart, motivated Dell-Seton doctors as well as wicked-smart, uber-motivated physician friends. He had the best.  

It “hides” because frequently, there isn’t even a central tumor to alert doctors. 

This cancer attacks the lining of your blood vessels and lymph vessels. The vessels then, in my layman’s understanding, let fluid through. Basically, Heath’s lungs, heart, kidneys, liver, etc. were filling up with fluid. (Liz, please chime in to correct my pedestrian description.)

So that makes us even more grateful and amazed that Heath was able to communicate with us for that last hour! 

Second odd piece of information from the autopsy: he had suffered a stroke at some point. So he couldn’t see (which is what he communicated to us). 

But he also most likely suffered brain damage from the stroke.  So again, I marvel at his ability to, with no pain meds, “talk” with us for an hour—with brain damage and every blood vessel in his body liquifying. God is so kind, and my husband was amazingly strong!

The autopsy is not yet complete. They sent slides to the Mayo Clinic and to MD Anderson in hopes that his case might help doctors understand these rare disorders. He’d love that: maximize impact. ;)

I’ll update again when the final report comes in. 

On a personal note, the boys and I have been ghosting so many people, and I’m sorry.  My mind is 20%, my heart is swelling at 150%, my energy is inconsistent and seemingly out of my control, and my to-do list doubled overnight. 

Please tell yourselves this truth: I know you’re there, pulling for us, praying for us. I know you miss Heath, too. Luke, Ben, and I will see you again, but we’re hibernating for a bit. 

The boys took off for a month of kayaking in Canada with NOLS, so please join me in praying God uses that time to start healing their spirits as only He can. 

I thank all of you who’ve donated to the Heath Schiesser Impact Scholarship. We have several families already filling out applications!  He would be so excited. It’s here on this EverLoved site if you care to learn more. 

And lastly, I can’t tell you what a powerful impact it had on us to see again so many beloved friends of Heath’s at the funeral, sunset cruise, celebration of life, and Heath’s Simple Desserts party. 

It was especially meaningful for Luke and Ben to hear your stories because they enlarged and enhanced their understanding of their father. What a gift for two young men about to enter adulthood. 

If you took pictures of any of those activities, would you send them to me (Megan@StudioPrep.org)? I was overwhelmed, and I didn’t capture anything. 

I miss him (for going on five minutes now, I’ve been struggling to find the adverb that fits here!! There isn’t even an *adequate* adverb to articulate how I miss him.) I’m tired, so I’ll just end with, I miss Heath.

I hope seeing “Bored During Covid Shutdown Heath” gives you a bit of a smile.
-Megan
https://www.amazon.com/photos…

In lieu of flowers, please consider a donation to the school Heath and I started, Studio Preparatory, for the Heath Schiesser Impact Scholarship.

He wanted to keep tuition low so anyone could join, but even with tuition at half of market, some families still can’t afford to attend. This scholarship will go to those families.