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Episode 60: Dana Pepper Bouton Endowment Fund

Years ago when I lost my mom, someone said to me, “The greatest gift you can give the world is a life well lived.” Today’s guest is a fantastic example of just that.  In full disclosure, I have known our guest Dana Bouton for probably twenty years. We have raised our children in the same community. Dana sent me an email explaining that her cancer had returned and was now terminal. She was determined to use the time she had left to leave a lifetime legacy to the City of Hope. The Dana Pepper Bouton Endowment Fund will help families financially devastated by cancer.

Join Dana and June Penrod from City of Hope to learn how one person can make a difference for so many living with cancer. Dana’s humor and insight will inspire you and make you think about how you live. She is a true example of the quote above and what really matters. During our conversation I made Dana a promise that I would re-publish her podcast on her birthday each year as a reminder and a legacy of her work, so Happy Birthday Dana! Cheers to another amazing lap around the sun. Thank you for reminding us all how to live.

 

 

Here are a few highlights from our conversation:

 

Charity Matters: Tell us a little about what The Dana Pepper Bouton Endowment Fund will do?

Dana Pepper Bouton: The idea of the fund was set up to help families who are navigating the difficult diagnosis of cancer to have resources for support.  They want world class care in hospitals and need to get transportation, gas,  child care, groceries, and a multitude of other things. So this fund is set up to kick out money in the form of gift cards, to help these families get to City of Hope. More than having the best possible care but receiving some supportive care on the side of having to deal with their loved one being a patient. 

June Penrod: What we do is provide state of the art treatment.  So we are really the champion when it comes to precision medicine of being able to fight cancer.  Not only at the cusp of when it’s worst in your body, but also in the beginning phases of helping our population screening for cancer. So we really did the entire gamut from A to Z on cancer treatment for all patients in Los Angeles and Orange County.

We are really proud of the impact that we are having on cancer patients in the nation. The role that I specifically play is acquiring resources for what we call our Department of Supportive Care Medicine. It is one of the unique elements of City of Hope that make it so special. Supportive Care is basically the emotional and spiritual arm that comes out of the cancer journey that patients go through. So while they can focus on the treatment with their doctors, Supportive Care medicine wants to focus on their emotional care journey.  Then they are really focused on their cancer treatment and not having to worry about any of the external factors that might get in the way of that journey.Charity Matters: What was the moment you knew you needed to act and start this endowment?

Dana Pepper Bouton:  I was diagnosed with stage four non Hodgkins lymphoma in January of 2018. And here we are about  five and a half years later.  I’ve had multiple rounds of chemotherapy, back to back bone marrow transplants, a few operations, infusions, and transfusions. Now I’m terminal after all of those treatments.  You know, I can’t can’t control the fact that the doctors say, “there’s nothing more we can do for you, except try to keep you alive a few months at a time.” 

So I’ve lost the ability to kind of control how long I thought I would live. I came to the conclusion that I haven’t lost the ability to create a legacy for other people. Even though I’ve had basically what I simply call very bad luck because there’s no genetic component to how sick I’ve been. I’ve also been very blessed. And I’ve had multiple resources, in terms of financially supportive community to help me along the way. 

After spending so much time in the hospital, and listening to June and others talk about the supportive care that City of Hope offers. I can create a legacy after I’m gone to help hundreds of people and that makes me feel really good. In fact, being terminal is really not that big of a deal in terms of how many people I can impact during the few months, maybe six months a year that I have left. This brings me such great joy and working with June and seeing her enthusiasm and the people around me who want to give. I just want to work as hard as I can to reach out to as many more people as possible. And I do have a tendency to accost people in the market.

Charity Matters: What fuels you to keep doing this work?

Dana Pepper Bouton: I would say number one, I’ve had incredible support at City of Hope. And I also think, knowing that I have very limited time left, I see and feel and touch and smell in here so acutely. But I’m just really inspired by my enhanced senses. And so I love to capture what’s around me from macro to landscape, and put that on my website and share that in the form of wall art or greeting cards, postcards, and sell them, and how those proceeds go to my fund. 

 I’ve laid in bed for sure, and had had some really hard days. But seeing, feeling, talking to people and really hearing and really listening just propels me to keep going.  I know that when I am dying, I’m not going to regret being so tired. While taking pictures, or being with people, I would only regret that maybe I just stayed in bed and felt sorry for myself.  After I die, I want my fund to continue. So I’m pushing to get the word out.

Charity Matters: When do you know you have made a difference?

June Penrod:  Dana is a great example.  I think she doesn’t mind being the dramatic story of philanthropy, of this woman who should be taking care of herself but instead she’s taking care of others. Even though she received a terminal diagnosis, I mean, look at what she’s doing now.  We have folks who say, we have a great life that we’re living now, thanks to City of Hope and we want to contribute more. 

But we do also have folks who say, “My loved ones are not here with me anymore, but I love the compassion and the care they received.”  And so we want to give.  Then there are folks who have never stepped foot into the hospital but they know the great work that we do. And they want us to be their charity of choice. That blows my mind as well. 

Charity Matters: If you could dream any dream for your organization, what would that be?

Dana Pepper Bouton:  My dream is that after I die, I want this fund to continue in perpetuity. So my dream is to keep spreading the word as long as possible. Then have my family and other people give money once or twice a year, in perpetuity.

Charity Matters: What life lessons have you learned from this experience? 

Dana Pepper Bouton:  I appreciate when people talk to me out of just accepting where I’m at, and not trying to tell me that I don’t have hope. I have hope. And I also know that I’m going to die. Maybe within a few months, or perhaps, you know, a year. I think that the biggest life lesson is to listen to people in terms of where they’re at in their head. And don’t try to talk them out of something that might be their actual reality. I know that people have their own fear, but set that aside and try to put yourself in somebody else’s place.

Charity Matters: How has this journey changed you?

Dana Pepper Bouton: There are two big changes. One is that I had the arrogance of aging, I thought I would live as long as my grandmother, who lived almost to the age of 102.  I assumed it would be just like that. And that was very arrogant on my part. I’ve learned in the last six years or little over five years, I guess, that was just very presumptuous of me. And I’m quite humbled and I find that now to be a blessing. And I also think it’s funny. 

I think my sense of humor has gotten quite rivaled.  The other thing is that I’ve had to learn to slow down and not be busy, which I really liked. But I’ve  accepted the fact that I can slow down. If I’m in pain, it’s okay to lay back down and listen to podcasts like your podcasts, and audiobooks and dream. My imagination has become so acute because I’ve been forced to lay down, forced to take a break. I willed myself to pivot and it took a while. And I’m proud that I had the strength although it took a long time to finally accept, don’t find it pivot. Find those blessings, and there’s new magic.

 

CHARITY MATTERS.

 

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Podcast

Episode 8: Rhonda’s Kiss, a Mother’s Legacy

We never know when life is going to change in an instant. Kyle Stefanski is one of five children who grew up with a big happy family in Cleveland, Ohio. Kyle’s mom Rhonda was diagnosed with pancreatic cancer in 2014 and passed away eight short weeks later. Their family was devastated but knew that their mom, Rhonda would want them to do something positive for others. The result and legacy is a nonprofit called, Rhonda’s Kiss. a nonprofit organization that supports cancer patients with the non-medical expenses that come with cancer.

Families experience loss all the time but not all families take their grief and turn it into something positive for others. I am excited to share the story behind Rhonda’s Kiss and more than that, the beautiful legacy that this mother has left her children and all those they serve through their incredible organization. Join me for an inspiring conversation with Rhonda’s son, Kyle Stefanski about his and his family’s work in creating this beautiful legacy in honor of their mom.

Here are a few highlights from our conversation:

(Photo by Vivien Killilea/Getty Images for Rhonda’s Kiss)

Charity Matters: Tell us a little about what Rhonda’s Kiss does?

Kyle Stefanski: Rhonda’s Kiss raises money for the non-medical expenses tied to cancer.  It’s covering expenses like keeping your lights on, food in your fridge, wigs, childcare, rent, mortgage, and rides to and from the hospital. You see a lot of cancer patients either not going to the hospital because they can’t afford the ride, or stuck at the hospital for hours after their meeting with their doctor.  It’s just all these hidden costs that people don’t even think about because they’re just focused on cancer. 

Charity Matters: What was the moment you all knew you needed to act and start  Rhonda’s Kiss?

Kyle Stefanski: So I think it really came about when the family came together maybe a month or two after my mom passed. We were trying to figure out what happened and trying to say that we needed to turn this into something. So we sat down and said there’s so much money going into cancer. Why not put some money into something that we can actually tangibly feel is affecting people? Once funds are donated, the money goes to that partner hospital, and the social workers immediately start executing grants right away to help these cancer patients.

Charity Matters: This is hard work, running a nonprofit, what fuels you when the days are long and the work is hard?

Kyle Stefanski: How do I keep going? That hospital floor, where my mom passed, at the Cleveland Clinic, has stuck with me so, so deeply, I will never forget that feeling. When I walked away from her after she had taken her last breath, and I  just walked by myself through the hallway. I just felt the energies of each room and wanted to remember every piece of it.  So that’s a huge piece for me to always, always, always remember. 

You don’t have to have it emotionally bring you down, but it will never leave. And so I go to bed, it’s a thought of mine. When I wake up in the morning, it’s the first thought of mine. That is something that I live with, and everything else circles around that.

Charity Matters: Tell us what success you have had?

Kyle Stefanski: In only five years we’ve been able to donate over $1.5 million through all of our partner hospitals.  The Cleveland Clinic, Cedar Sinai, and the City of Hope, Cleveland Clinic Florida, and we are coming to New York City this spring. When we started the Cleveland Clinic had only three social workers in their cancer department working with patients. Just three workers. Since we’ve started this program that has grown to 28 social workers and that is just one of our hospitals.

Charity Matters: How has this journey changed you?

Kyle Stefanski: Well, this process has taken me on such a spiritual path as well. A lot of it has been opening my eyes because we live in this very capitalistic society. And that’s a big reason why we don’t see the people in front of us and we don’t connect.  There is no human condition to really feel because we’re moving so fast and worried about ourselves. And so when you feel that gratitude, our spiritual side of how we’re supposed to be there for others. You realize we’re all in this together.

CHARITY MATTERS.

 

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YOUR REFERRAL IS THE GREATEST COMPLIMENT,  IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.

Copyright © 2021 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

 

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Cancer

Without words

without words

I have to say that in almost four years of blogging, I have rarely been at a loss for words. I sat down to write the other day and there just wasn’t anything there. I mentioned this challenge at our family dinner table and my sons said, “You don’t have to write Mom, its ok if you take one day off.” A thought that truly had never occurred to me.

I had resigned myself to the fact that with two graduations next week and a very full plate at work, I would take today off.  However, the universe had different plans, no sooner had I made that decision, when a friend sent me this video…which of course I needed to share with you.

Tired or not, seeing compassion in action, simply never gets old. It is moments like these that inspire me to do more, give more and use my time showing the world that it is actions not words, that really matter.

Charity Matters.

 

Copyright © 2015 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally

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Cancer

If only for a moment

mimi foundationBeing carefree, something all of us remember in our youth and sadly long for, when our life’s responsibilities get in the way. A new video, from cancer survivor and founder of the Mimi Foundation, Myrian Ullens de Schooten, offers this gift of spontaneity to cancer patients. Myrian founded the Mimi Foundation, “Because of this experience my conviction has grown that cancer must be fought not only on the medical front, but on all fronts. Using this principle I want to ensure that all those who have to face this disease receive support, help and comfort.” This project accomplishes just that.

Just that moment of joy, silliness, freedom and the unpredictable. The video is in French with sub-titles, but the language of joy is universal. Take a moment and treat yourself to a small slice.

 

 

It simply doesn’t matter what language you speak or what you look like when you are suffering from cancer. What matters is the smiles, the fun, the joy and the moment that each of these people gave to another.

Charity Matters.

 

Copyright © 2014 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

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Cancer

A mother’s legacy of Hope

inheritance of hopeThe other day I received the sad news that a high school class mate of mine had died from cancer at the age of 47. She had battled the disease for almost half of her life. Stephanie, was an only child and a single mother. Upon reflection of her life, I began to wonder what the journey was really like for her and her beautiful daughter.

That lead me to uncover a fact that there are over 700,000 children each year who deal with a parent that has life-threatening cancer. In this discovery, I came across a remarkable woman named Kristen Milligan, who walked a similar path to my friend, as a parent who was ill, and looking for ways to help her family.

In 2003, when Kristen was diagnosed with a rare terminal illness her children were only four, two and seven months.  She wanted to find a great book that helped explain her illness, when she couldn’t find it, she wrote her own.The book was called  A Train’s Rust, A Toy Maker’s Love, the story of a train family whose mother begins to rust, prompting questions of the toy maker about what will happen next. Kristen and her husband Deric, then expanded their mission to help other families dealing with serious illness and in May 2007 began the non-profit Inheritance of Hope.

Their mission was to improve the well-being in the lives of children and families, dealing with a parent diagnosed with a life threatening illness.  They achieved that goal by providing books, family retreats and support that was spiritual, emotional and financial. The Milligans believed that the more the family is helped, the more it helps the ill parent.

Kristen endured her disease for nearly ten years, including six surgeries, twenty-two months of chemotherapy, two rounds of radiation, and two more books. She died on October 26, 2012 and her legacy of hope lives on in every life she continues to touch.

Charity Matters.

 

Copyright © 2013 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

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Cancer

Big moments in small packages

jeffrey, loyolaThere are so many ways our lives touch others. It seems that the big moments that touch us often come from the littlest people. Last friday night my son’s football team had their first scrimmage. Lined up in crisp new uniforms were 86 big varsity high school football players and in the front of team stood a 9-year-old boy. The 9-year-old is our new team captain. His name is Jeffrey and he is teaching our football team about courage, toughness, perseverance, dedication and overcoming adversity.

Jeffrey knows about these traits because he has cancer.  Less than two years ago, he was a typical 8-year-old boy who loved playing baseball and flag football and then everything changed. Jeffrey was diagnosed with DSRCT (Desmoplastic Small Round Cell Tumor), an extremely rare and aggressive cancer.  In just over a year he has completed about a dozen rounds of chemotherapy, five surgeries, numerous procedures and five weeks of radiation therapy.

In honor of our mighty new captain, the team will wear Jeffrey’s initials on their helmets this season in honor of his courage and tenacity, as well as to bring much-needed attention to the lack of funding for pediatric cancer research.  Jeffrey  received the signed game ball and his very own football jersey with the number 11, that represents the date of his diagnosis, 11/11/11.

This little package has already showed our sons how to be strong, courageous, and to face adversity with a smile and can do attitude. Jeffery’s family has a web-site and the quote on the site reads, “Let your dreams be bigger than your fears, your actions louder than your words, and your faith stronger than your feelings.”

We have yet to play our first game but it is already a winning season.

Charity Matters.

Copyright © 2013 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

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