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What people with brain cancer want you to know

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.  

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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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IoH Family Spotlight Lex and Brooke Berthelsen: Telling their story

Lex Berthelsen was shocked in December 2017 upon being diagnosed with grade 3a stage IV follicular lymphoma.  The father of three, along with his wife Brooke, immediately sought out cancer survivors and cancer thrivers, relationships that led them to Inheritance of Hope. 

 

“We weren’t sure,” Brooke remembered, “but we printed out the application for an IoH Legacy Retreat® anyway, and did it.  I’m so grateful we did.”

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Inheritance of Hope serves seven families at C.A.R.E. Retreat

“It was like a giant hug, just wrapped up in a fancy bow,” described Laura Scampoli of the recent Inheritance of Hope C.A.R.E. Retreat that she attended with her children.  Originally, Laura, her husband Rich, and their four daughters were scheduled to attend an Inheritance of Hope Legacy Retreat® in April 2019. Rich passed away from pancreatic cancer a little over a month before the planned trip to Orlando.

 


Laura Scampoli and her children enjoyed time together in Orlando on the IoH C.A.R.E. retreat

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How to thrive while social distancing--from those who know!

While the rest of the world learns to social distance, it’s business as usual for many of our Inheritance of Hope families.  There’s nothing quite like a terminal diagnosis or deadly virus to quickly scrap plans and teach necessary health saving measures.  For our IoH families, uncertainty is the only certainty, and they understand the disappointment, anxiety, and adaptations that have become routine over these last few weeks.  Because we are all in this together, these unwilling experts offer their tips for coping with fear, near-constant change, and the need to quarantine. 

 

IoH Vision

 

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18 ways to start building your legacy today

On March 18th, Inheritance of Hope (IoH) recognizes the birthday of our Co-Founder Kristen Grady Milligan.  Kristen may have been the best legacy-builder ever--while living with cancer, she prepared cedar chests full of notes, gifts, and videos for each of her three children.  Although young when their mom passed away, Kristen’s son and two daughters continue to feel her presence through the tangible ways she left a part of herself with them.  

 

Kristen Grady Milligan, March 18, 1973 - October 26, 2012
Kristen Grady Milligan, March 18, 1973 - October 26, 2012
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Meet the newest Inheritance of Hope volunteers: 16 join our ranks at the Orlando Legacy RetreatⓇ sponsored by Kendra Scott!

Out of our record-breaking 16 new volunteers, five are former family members served--and you know what that meant--lots of hugs and smiles as we welcomed them back!  Get to know a few of them here!

 

Our newest Inheritance of Hope volunteers along with our “first-timers” from Kendra Scott and Dillard’s
Our newest Inheritance of Hope volunteers along with our “first-timers” from Kendra Scott and Dillard’s

 

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IoH Welcomes 11 new volunteers in New York City!

11 new volunteers joined the IoH family to take a bite out of the Big Apple during our recent Inheritance of Hope Legacy RetreatⓇ in NYC.  Meet a few of them here!

 

Front row (l to r): Libby Storm, Anneli Shaw, Baylie McClafferty, Katie Atwater Middle row (l to r): Jensi Shaw, Jennifer Weitz, Claire Weitz, Jane Augur Back row (l to r): Nick Ranieri, Charlie Garrison, Roger Lykins
Front row (l to r): Libby Storm, Anneli Shaw, Baylie McClafferty, Katie Atwater
Middle row (l to r): Jensi Shaw, Jennifer Weitz, Claire Weitz, Jane Augur
Back row (l to r): Nick Ranieri, Charlie Garrison, Roger Lykins
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