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Family Spotlight: Adam and Whitney Hayden on the legacy right here

For Adam Hayden, “Storytelling is a pathway toward a meaningful life.”  This nugget of wisdom, shared in his speech at the 2019 End Well Symposium, drives the narrative of Adam’s every day.  Most people only think of death in the broadest of terms, but Adam, who holds a Master of Arts in philosophy, knows it is much more than an existential question.  As a four-year glioblastoma multiforme brain tumor patient, one thing Adam claims to be most proud of is what he calls his relationship with the end of life.  

 

.Adam shares his story at the End Well Symposuim in December 2019   (Photo - Katie Ravas for Drew Altizer Photography) Adam shares his story at the End Well Symposuim in December 2019 
(Photo - Katie Ravas for Drew Altizer Photography) 

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A Marathon of a Friendship: The Loerzel and Douglas Families are in it together for the long haul

It’s a friendship from the era of floppy discs and homemade scrapbooks.  Chris Douglas and Greg Loerzel met in the computer lab of North Dakota State University as aspiring engineers, and Greg’s wife Maria has proof of the many adventures they have had ever since. 

 

Chris (left) and Greg have been friends for over two decades
Chris (left) and Greg have been friends for over two decades
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Family Spotlight: Amanda Coleman on her husband Mike’s Legacy

Family Spotlight: Amanda Coleman on her husband Mike’s Legacy
This story was originally posted in 2019, and we are honored to repost as we acknowledge brain cancer awareness month.  A year later, the Coleman family has continued to grow, adding two dogs, three cats, and activities for both kids, who stay busy w...
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Family Spotlight: The Crawford and Loner Families maintain hope in the face of ALS

This blog post was originally published in 2016, and these families have both had many changes since then--happy changes!  The Loners now have two healthy grandchildren they enjoy spending time with, and are proud to report that their three grown children are thriving as well.  Niece Abigale has volunteered on three Inheritance of Hope Legacy RetreatsⓇ, and collaborated with Craig in making this video: https://youtu.be/hnDAtDqcHKE last May for ALS awareness month in 2019.

 

Heather Crawford Dodd, now on staff at IoH, began volunteering on retreats in October 2016, not too long after this article was written.  In May 2017, she met Tom Dodd, also a former family member served-turned volunteer.  They married the following December and live in South Carolina with their four boys.  

 

When we first ran this story, little did we know it was just the beginning.  Heather, Dana, and Craig are in touch weekly--by text and often in person.  Before the coronavirus pandemic, Dana and Craig would drive over an hour to Heather's home every few months and help prepare materials for upcoming IoH retreats.  Even now, they frequently check on each other, and provide love and support both ways--as Heather looks to Dana for advice on how to be a good stepmom, "She is an incredibly patient, strong, and selfless woman and a huge inspiration and encouragement to me," remarked Heather. Dana calls Heather an angel sent just when she needed her most, and describes Heather in just the same way as Heather describes Dana, “she continues to be a source of inspiration and encouragement to me.”

 

We are honored to call these folks family and celebrate the hope they maintain and give to others. 

 

 

“Two are better than one, because they have a good return for their labor. If they stumble, the first will lift up his friend—but woe to anyone who is alone when he falls and there is no one to help him get up.”  Ecclesiastes 4:9-10

 

One of the goals of Inheritance of Hope (IoH) is to connect families. Families who are grieving a life-changing diagnosis, struggling with fears, and facing new realities draw strength from each other as they share experiences and burdens.  Through IoH, new friendships are often formed that offer a depth of understanding many families can’t find elsewhere.

 

The support that is shared is sometimes intangible and immeasurable, yet always tremendous. Sometimes, the support may be tangible yet also tremendously immeasurable, as was the case when Heather Crawford donated a wheelchair van to fellow IoH family Craig and Dana Loner.

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Inheritance of Hope Family member Bill Chionis finds the “Caregiver’s Companion”

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.

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Finding art in unexpected places

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.

 

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Family Spotlight: Gabe and Erin Matheny’s survivor story

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?”

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The O’Gorman Family: What it means to keep hope in the face of cancer

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.”

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From Black and White to Color. Cheryl and Matt Broyles describe their faith in the midst of brain cancer

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

 

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Finding our way while helping others: longtime brain cancer survivors and caregivers share their experiences

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.

 

Brain cancer Painting
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 

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