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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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My Yoke Is Light

I would like to share perhaps a familiar verse, but one that I love that I want to encourage us all with!

 

Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light. -- Matthew 11:28-30

 

Basically, a yoke is a piece of wood that is used to hold two animals together in order to plow fields for a new season of crop planting. Jesus’ audience would have recognized and completely understood exactly what a yoke is and what a yoke does. They would know that a yoke is not a light and easy thing to bear. It bears weight...a lot of weight! They also would know that stronger oxen were matched with weaker or younger oxen in order to help it become stronger without overwhelming it. The stronger ox bears most of the weight, yet the two oxen are in step together sharing the load, doing the work together.

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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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First-ever Inheritance of Hope Family Reunion

What do families do? They laugh together. They cry together. They celebrate together. They make memories together. And, they have family reunions!



We look forward to opening registration once our vendors resume normal operations. In the meantime, mark your calendars: Sept. 5-7, 2020 (note slight date change from our previous announcement) at Renaissance Orlando at SeaWorld.

 

We invite you to make more family memories, re-connect with other families/volunteers, and form new relationships with our larger IoH family.

 

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Being Content, in Every Circumstance

Is it apparent to you what the common theme of most advertisements is? How about the messages we receive on social media? The goal of most advertising is to convince you that “you need this” or “your life could be better if…” and in social media, we often receive the message that we’re not doing enough in life, because it seems like everyone else is doing so much better and more.

 

How can we be content, when we always feel like we’re lacking in something? This is the question I’ve been wrestling with lately, and I’m grateful that God has been revealing the secret of contentment to me!

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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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What Can be Done with ALS

In these days of uncertainty and limited social interaction, you might find yourself frustrated by the way your life has changed over the past few weeks (or even days).  Those of us with ALS or other debilitating diseases get it. But if we can adapt, you can too! 

 

The Douglas family making lifelong memories on their Inheritance of Hope Legacy Retreat®
The Douglas family made lifelong memories on their Inheritance of Hope Legacy Retreat® in May 2017
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