Hope--it’s in our title and it’s what we deliver.  It is not found in the Magic Kingdom or at the Top of the Rock, but it is what we most want our families to find on their Legacy Retreat®.  

These 38 families were part of something big, and new for IoH!

It was a love story for the books, and although many readers know how it ends, “The Caregiver’s Companion” is still a page-turner. Not because of the suspense, but because of the sometimes heady, often poetic, and always authentic language that Bill Chionis (2011 NYC Legacy Retreat®) uses to describe his marriage through moves, job changes, children, and ultimately cancer.

We are honored to feature Kaila Hayden as a guest blogger this month in recognition of ALS awareness month.  Kaila and her family were served on the August 2014 Inheritance of Hope Legacy Retreat in Orlando.  Kaila has since volunteered on four retreats, and brings a special compassion to the families she serves.

When you lose a loved one, you find yourself clinging to that which reminds you most of them. Their belongings, their hobbies, their interests, whatever was left to you as a memory of their life. After my mom passed, I found myself surrounded by her in photos, in memories, in the gifts and cards for milestones she would miss. When faced with death, she sought intention to leave behind. 

The Hayden Family making a friend on their IoH Legacy Retreat®

Prayer--whether private or public, poetic or plain, we need it.  In times of both praise and pain, the truest prayers humble us and connect us with our creator who loves us.  Since 1952, presidents from both sides of the aisle have designated a national day of prayer to be held each spring.  Now, when we see more than ever just how deeply we are connected and how tenuously we are tethered to this life, may we pray together as people, not as members of a particular religion or political party.  It is time to pray humbly, lovingly, and hopefully, following the directive of Mahatma Gandhi that “Prayer is the key of the morning and the bolt of the evening.”

Originally published on our blog in May 2019, we are excited to repost Jordan Gersh's artwork in honor of brain cancer awareness month.  Like most college students, Jordan is currently living at home while taking online classes.  She is making the most of her time with her mom and dad, as they cook and bake together and have lots of long conversations around the dinner table. 

This collection of work was inspired by my mom for her perseverance and strong will. She has always been my role model and is the strongest woman I know. In the summer leading up to my junior year of high school, my mom was diagnosed with a stage four brain tumor called a glioblastoma. After my mom’s diagnosis, I became very involved in her treatments and doctors’ visits. I enjoyed accompanying her to appointments and often would ask the doctor and surgeon questions, so I could better understand what my mom was going through. At each appointment we would go over MRI and CT scans. First, to prepare for surgery, in which they would remove as much as they could. Secondly, to continue observing the growth or shrinkage of the tumor, post operation and treatments.

Originally posted in May 2019, we would like to share, once again, Gabe and Erin Matheny's story of hope, and the best news of all--that they are still thriving! 

“If I could, I would make people go on an Inheritance of Hope Legacy RetreatⓇ,” says Gabe Matheny, former EMT from Corinth, Texas.  Diagnosed with a glioblastoma multiforme tumor, Gabe attended an Inheritance of Hope Legacy RetreatⓇ to Orlando with his family in May 2018.  “Originally, I was hesitant to go, but IoH was probably the biggest, best experience that has happened to us, and one of the best decisions we’ve ever made.  It was a huge relief for us, and we had so much fun with our kids.” He goes on, “Plus, the resources, the memories we got out of that, and the new friendships we still have...  There would have been absolutely no way for us to do that otherwise. From the first moment we got off the plane, the welcome we were given--the staff and volunteers just did so much. You could see it in their faces.”  Gabe pauses to consult with his wife, Erin, “what is the word I’m looking for?”

Many of our families living with brain cancer contributed to this article--sharing what they hope is helpful advice for those who, most of all, just want to be helpful! 

1. “Don’t assume just because someone looks fine on the outside that they are OK.”  Variations of this comment came up in multiple interviews with our IoH families affected by brain cancer.   Wives described husbands who sleep afternoons in order to save up energy for cheering at a child’s big game that night, or the frustration of large gatherings where others may not understand that noise and questions can be too exhausting.  

2. Anxiety can accompany any activity, and sometimes only a close caregiver is able to recognize signs of an impending seizure or other complication.  

Jennifer O’Gorman’s number one piece of advice for families facing what she has faced is this: “Everyone has lots of advice for you, but you have to do what you know is best and trust your gut.  You have to do what feels right for you.”

In May 2013, Jennifer’s husband Pat was diagnosed with a glioblastoma multiforme tumor in the front of his brain.  A mere eight days after surgery, he was determined to use his experience for good. Jennifer explains, “He felt like his mission was to touch one person every day and tell his story to give them hope.”  She pauses, and with a quiet laugh remembers, “He was never shy and would talk with anyone any chance he had.”

Originally published in May 2019, Cheryl continues to climb her mountains, particularly inspiring others living with brain cancer.

If Cheryl Broyles is a little more teary-eyed than most moms at Oregon State University's graduation this spring, she has good reason.  When her son Grant receives his degree, she just might be thinking about how she never even expected to see him start kindergarten.

In July 2000, Cheryl was diagnosed with a Glioblastoma Multiforme brain tumor and told she had a year to live, more or less.  At the time, her children Grant and Clint were three and one. Miraculously, Cheryl has seen them graduate from high school and set out on their own career paths, which, not-so-coincidentally, reflect the values she and her husband Matt have pursued.  The family of wildlife biologists had plenty of experience putting their passion into practice during summer vacations when they celebrated each anniversary of Cheryl’s survival with a huge outdoor adventure.

Matt, Clint, Cheryl, and Grant on their 2010 Inheritance of Hope Legacy RetreatⓇ

One thing our IoH families all have in common is the desire to help others on this same road, and to make the path easier where possible.  Many of our families affected by brain cancer have particularly positive outlooks, and want to share that with anyone else facing this diagnosis.

Photo credit: Jordan Gersh (Orlando Legacy RetreatⓇ, Feb. 2017)

What you should know:

1. “It’s not a death sentence.  Yes, it’s terminal and I know that.  One day it will get me, but as of right now, it’s not.  Stay strong. Don’t let it get to you, be in the moment, and be there for other people.”  --Shannon Fogarty