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Creative Absence

Being at Legacy Retreats is a blessing.  This is the visible and tangible culmination of many months of less visible work: fundraising, event planning, family coordinating, all sorts of communications, technology, office work and supplies, big-picture visioning and strategy.

 

All of that work takes a lot of people, and many of them cannot be at every retreat.  In fact most of them aren’t on site at any given Legacy Retreat.  Our staff and coordinators alone now are more than 30 people, and there are more than 300 people among our board, volunteers, and group facilitators.  Plus there are thousands of donors.

 

To get to be at a Legacy Retreat, then, is to be at the highlight, the fun payoff of so much other vital but less visible work.  The flip side is that being away from a retreat is hard!  I can speak from very personal experience; I was not at the California retreat at the end of last summer, and that frankly was not easy for me.  I knew I was missing a great team, I knew I was missing IoH history, I knew I was missing the face-to-face impact of months of work.  Others who also missed that retreat described it like experiencing withdrawal, and that is how it felt.  It’s hard to miss this!

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What people with brain cancer want you to know

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.  

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Finding art in unexpected places

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

“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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Lighting a Candle for Hope

“Scents of Hope,” Marti Ogren’s candle business, is aptly named.  The preschool teacher, who also spent 35 years in a first grade classroom, has found her second calling, and her purpose is bigger than filling your home with pleasant fragrances.  Lest you get the wrong idea, Marti is passionate about the process of developing, testing, and making her soy-based candles. She embraces every step, from brainstorming new products to pouring the warm clear liquid and watching it cool to a creamy solid.  But, she is even more passionate about inspiring hope.

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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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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 seems contradictory, “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

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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The Hope of Heaven

I am so excited that Kendra Scott has partnered with Inheritance of Hope to sponsor Legacy Retreats. She sponsors Legacy Retreats to honor her friend Holley's legacy, and the reason that I am involved with Inheritance of Hope is because I am carrying on my friend Kristen's legacy. I can definitely relate to Kendra's heart in this mission, and it is such a pleasure to team up with her to honor our friends together.

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Jenna Maier Cooks Up Cash for Inheritance of Hope Families!

Jenna Maier, 14, wants to “ show that no matter your age, you can make a difference.”  The Willow Creek Middle School eighth grader from Rochester, Minnesota, has done just that.  In November, Jenna cooked up a fundraising campaign for Inheritance of Hope. By February, she had raised $500 selling homemade cookies.  

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