Community Education Family Health Parenting Relationships

#34: It Is Complicated, But We Can Do Better with Erin Benson, Founder of With Purpose, An Organization That Aims To Conquer Childhood Cancer

Today’s podcast is with Erin Benson, the founder of With Purpose, a non-profit organization that helps to fight childhood cancer. Erin shares with us her very personal story of losing a child, of building again, and finding hope through the actions of neighborhood children who took on the mission of With Purpose and through their passion created phenomenal results.

Erin. Erin is a mom of three – Sam, Ada & Mae.

In 2013, her son, Sam, was diagnosed with a terminal type of brain cancer called DIPG. 10 days after the diagnosis, she gave birth to her twin daughters. That moment was what she considered a beginning and an end – a beginning to a new experience and an end to what a lot call “normal” which made her realize everybody has a story.

After giving birth to the twins, they were in and out of the hospital for the following six weeks. The twins had complications and had to stay at the NICU while Sam goes in 5 days a week for radiation, steroid, and chemotherapy. His disorder is terminal, no child with DIPG has ever survived, and that was when they decided to stop fighting.

With DIPG, often the natural thing to do after standard treatment is a clinical trial, but they didn’t go that route. Sam was two and he was not eligible, but Erin also doubt they would have done it.

When everybody was out of the hospital, they’ve decided to spend the rest of Sam’s life just trying to make him happy. Trying to plan and pack in a lifetime of experience into what they were told would likely be less than a year.

They bought a minivan and started driving around the country. They’ve been to Atlanta and had a tour of the Aquarium, a VIP trip thru their Make-A-Wish trip at Disney World, they went to New York to see skyscrapers.

They also spent time traveling around to see family who may not have even met Sam yet. That is what they consider as their sacred mission, to focus on the happiness of their kids. She feels so grateful do have done such. She also mentioned that it was difficult to celebrate when they know the end of the story – they knew what was coming.

Struggle. She just started to now wrap her head around what she felt that time. She considers the human mind as something incredible – it creates a certain level of denial even if you know what’s coming.

What they did was to not just think about the end until it was at their doorstep. That impacts everything, she didn’t see Sam as someone who’s sick even in her soul she knew he was. They didn’t treat him that way. They learned how to temper their anger and pain as they cannot show that to the kids. They couldn’t scare him of what was to come.

Journey. Most kids don’t last 9 months. They couldn’t fix it and there’s nothing they can do to change Sam’s circumstance.

Every day was different and an adventure. They saw hundreds of people whom they share their experience with. They just sort of celebrated what Sam’s life was instead of what it would be.

Sam lived for two and a half years. He lived with a terminal illness longer than he didn’t. Most of his life was characterized by the diagnosis. Erin is still shocked when he took his last breath – it’s life altering.

After the initial turmoil, they have to re-enter life. They let so much go – careers, financial management, their home. Every single choice they made when he was sick was centered on what is best for Sam and how do they continue to create that for two and a half years.

They have to figure out how to make money again. How do they tell their twins where their brother went? She has to figure out how her life would be like for herself.

As time has gone on, things are easier to accomplish and just part of your daily life. It felt like starting over, having to learn to do everything all over again.

With Purpose. They started the organization when Sam was still alive. He outlived his prognosis by like 6 months. They had a weird but a rhythm to their life.

Erin thought of doing something. She thought  “Why is there a type of cancer that we have no life-saving treatment option? How is that possible?”  She started asking those questions from people and the answers are hard to accept. As a country, she mentioned that we’re bad at treating childhood cancer.

Every year, there’s hundreds of new drugs to treat adult cancer but that’s not true for kids. Every sub-type of childhood cancer is considered rare. It has lots of problems getting funded for research and with those problems the country had a lack of advancement. Erin continued by saying that in the past 3 decades, there’s only about four new drugs developed to treat childhood cancer by the FDA compared to hundreds every year for adults.

That frustration led them to do better by raising money. Give it to initiatives that try to break down those barriers. It’s a project Erin threw herself at to doing. Her life was in disarray and it felt good to try to solve something that was going to take away their kid.

Within 3 years it turned out to something she could never have anticipated, so much better than the original vision, it’s how she gets connected to Sam – it’s his legacy.

Life after Sam. Erin didn’t think she would be able to continue With Purpose anymore. They were a year and a half by then, raised some money, etc. and Erin went to think that maybe that’s just what it is. It just felt overwhelming for her to think about it at that moment – having to think about the thing that took Sam away from them and run the organization. Right after that thought, Sam’s friends were like “We want to do an event for With Purpose” to which Erin couldn’t say no to.

The kids did everything. They designed games and the whole event around the fun run. They’ve recruited the community to come out, solicited local news team who came and did stories about the event and they were able to raise more than $10,000.

Another of Sam’s friend who lives in South Carolina got these young musicians in their community, got an amphitheater and put together this whole event around youth creating music and changing the world and Erin was like “This is what With Purpose is!”. The kids did change the world, they’ve kept With Purpose going. They were able to raise hundreds of thousands of dollars as they plan those events.

It’s so inspiring to work with kids as they have this unfettered view of the world and this pure energy and they think they can do anything.

Join Us. There’s a form on their website that anyone especially kids can fill out. Anyone can join, bring their talent to With Purpose. Erin’s open for anyone’s ideas to help them. She wanted their ideas and wildest imaginations come true.

I Am Happy.

She learned a lot so much more than she could’ve imagined. She’d trade all that knowledge for a hug from Sam, but she can’t.

Their mission was to make Sam happy. The day before he died, they were surrounded by friends and families, she knelt down at him and said “What can I do right now to make you happy?”. Sam looked at her and said, “I am happy mom”. For Sam to be able to say he was happy while he was dying, that for Erin is the secret.

Despite what’s going on in Erin’s life, she is happy because she knows what she has, she knows how valuable the people are around her and the way they love each other- everything else is secondary. The only thing that you have to protect is that love and the people around you. And she claims to have learned that from Sam.

Erin’s happy. That’s it! That’s the secret! It feels like everything for her.

How to learn more about Erin:

website:

 

 

email:

erin@withpurpose.org

 

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