Volkslaufe honoring Amy Sain

The 4th of July has always been an interesting day for Aaron and myself. We moved him out of his house in Traverse City, MI on the 4th (thanks to a ton of help from our parents) and were so exhausted we went to bed without any fireworks. 2008 and 2009 were pretty fun. We watched fireworks on the View in Mt Washington overlooking the city of Pittsburgh on year though I can't remember which year it was. Aaron was in charge of remembering things like that. In 2010 we spent the 4th in the ER still trying to figure out what was causing his excruciating pain and he was prepping for surgery the following year, which meant no food! 2012 we were able to make a trip to Grand Rapids to visit our old stomping grounds and his family only 4 weeks post-surgery.

7/4/11 - Aaron was feeling well enough to go to a parade despite prepping for surgery

On July 4th I will be running the Volkslaufe (10K) in Frankenmuth, MI to raise money for the Remi Savioz Glut1 Foundation ("RSG1") in honor of Amy Sain. My brother, now an avid and very talented runner, told me that it was such a fun race and it had to make my 13 in 2013 list of races. As we were talking only a month ago, he informed me that it is imperative that I am in peak running conditions. Apparently this is one of those races that is fun because it is so hilly and difficult...hmmmm, not really what I had in mind. I plan to spend my run sweating, and praying for my clinical rotations mentor and friend. I think the hills of this race will parallel Amy's story:

Amy and her husband, Jerry, on New Year's Eve 2013, only 3 weeks before her second neuro surgery

"'It's cancer.' I've heard those words several times in the 35 years of my life. The first time was when I was eight years old. It was Hodgkin's lymphoma. After a year and a half of chemo, I was cancer-free. And every year I had a simple chest X-ray and bloodwork to monitor my lymph nodes. I was always told that the one question they couldn't answer was regarding my fertility. Could I have kids?? My husband and I were blessed to welcome two children into our lives. Riley arrived in June 2005 and Ryan in September 2007. We were a "normal" family until April 9, 2009. That is when our whole world changed.

First family Pittsburgh Penguins' hockey game in April 2013!

While folding laundry at night, I had an immediate, excruciating headache that quickly progressed to stroke symptoms. An ambulance got me to the hospital, and then a quick helicopter ride got me to the neuro ICU. It was a terrifying experience that didn't end there. The downward spiral crashed down with a craniotomy that provided a diagnosis of a gliosarcoma. Not only did I have to recover from a brain hemorrhage with speech pathology and occupational therapy-I had to endure radiation, gamma knife radiation, and chemotherapy. In August 2010, I was clear of cancer. 

Riley's communion in April 2013

That lasted 2 years. This ugly cancer reappeared in November 2012. Another craniotomy confirmed the recurrence. Surgery removed the tumor and I was feeling amazing, given just having neurosurgery. So, I was placed on an oral chemo agent that was able to hold off the tumor growth for a few months. My MRI in May 2013 just confirmed its back. So we switched up chemo, and my most recent scan on June 3rd again showed growth of the tumor. So we are back at the drawing board...using Avastin until a more concrete plan is defined. I have also sought out the use of the ketogenic diet. The goal of this diet is to lower the amount of glucose in the body because glucose is fuel to cancer. However, research has shown that cancer cells cannot use ketones for energy.

Riley and Ryan

I have been fortunate to be working with Samra Savoiz, founder of the Remi Savioz Glut1 Foundation ("RSG1"). This foundation has worked with families affected with metabolic conditions, epilepsy, and cancer. This foundation has provided me with instruction and supplies, and most of all, support. While my future is not clear, none of us know what's around the corner, we can love those around us endlessly and never forget to say “I love you.” I have survived the past 4 years thanks to endless support of families and friends. And by the following quote:

~Life isn't about waiting for the storm to pass; it's about learning to dance in the rain". ~Anonymous"

Ryan's preschool graduation in May 2013 just as she found out the second chemo was not working

How can you help Amy and the Remi Savioz Glut1 Foundation ("RSG1")?
1. Donate: There are 2 different ways to donate to the Remi Savioz Glut1 Foundation ("RSG1"), the foundation Amy has asked all funds raised in her honor be directed. 1. Online - To donate, please go HERE and then send me an e-mail letting me know you have done so that I may keep track of our total donations. 2. By Check - You may also send a check made to the "Aaron R. Moeller Memorial Fund" and indicate "Amy Sain" or "RSG1" in the notes section.  I will be taking donations for Amy and the RSG1 Foundation through the month of July even after "her race" is completed!

2. Run: Come check out Frankenmuth and all of its hills with me! You can register online. Be sure to let me know so I can look for you!

3. Spread the word: Please tell your friends and family by sharing the link to this post on your Facebook or in an e-mail, or directing them to the Remi Savioz Glut1 Foundation ("RSG1") website.

4. Pray:
* Pray for Amy as she seeks treatment for another tumor, pray for peace and joy in the midst of uncertainty

* Praise for God's strength and love shining through Amy as she gracefully perservers
* Pray for her husband, Jerry, who has walked through these storms with his bride
* Pray for Riley and Ryan as they must be flexible and understanding through surgeries and treatments, pray that they will pour out their love on their mother, pray that her example of courage will sink deeply into their hearts

* Pray for Amy's parents and siblings as they have ridden this rollercoaster with her. I learned from Aaron's parents that it does not matter how old your child is, they are still your baby and you still ache for their suffering wishing to make it all better
* Please also pray for the runners of this race and the fundraising of this race initiative