Erica Neubert Campbell heads the Pinky Swear Foundation, which aids the parents of kids with cancer.

DESCRIPTION

For any parent of a pediatric cancer patient, for both the parent and child, the journey is difficult, physically, emotionally and fiscally. Erica Neubert Campbell of Edina, Minnesota recognized this, and inspired by the story of a courageous nine-year-old, joined the Pinky Swear Foundation, which seeks to take care of the financial health of a family while it deals with the cancer journey of a child. She is now the Foundation’s executive director.

In 2003, there was a nine-year-old boy in the Twin Cities area named Mitch Chepokas. He had been diagnosed with terminal bone cancer. One evening he was in the hospital with his dad and overheard a family in the room next door talking about how they couldn’t afford Christmas presents, and it broke Mitch’s heart. Mitch turned to his dad and wanted to know how much money was in his, Mitch’s, savings account. His dad said Mitch had about $6,000. In that moment, Mitch asked his dad to empty the account. His dad returned with the balance, in cash. They stuffed the money into envelopes, which they anonymously left in the room each kid.

After distributing the envelopes in the middle of the night, Mitch said to his dad, “That was awesome. I love giving. I can’t wait to do it again next year.” Mitch’s parents were honest with him about the boy’s prognosis, and his dad said, “I’m sorry, buddy, I don’t think you are going to be here next year. That’s when nine-year-old Mitch took a deep breath and with the courage of a leader and the innocence of a child, said, “Okay, dad, will you pinkyswear promise me that you will keep doing this after I’m gone?”

Shortly after that, Mitch passed away and his parents founded the Pinky Swear Foundation. Today the Foundation does what Mitch did, just on a much larger scale. That first year, Mitch gave away $6,000. In 2022, Erica says the Foundation gave away approximately $1.4 million across the country to families that really needed that financial support to keep food on the table, to stay in housing and medical expenses, because of that original pinkyswear promise.

In addition to the fiscal piece, the Pinky Swear Foundation also reaches out to help parents and siblings with the emotional challenges face by a family with a pediatric cancer patient. Erica says it can be a balancing act for a parent, caring for the child battling cancer, while the other kids in the family need attention as well. The Foundation tries to help in this area as well.

There is a wealth of information one can gain from the Foundation’s website. It is www.pinkyswearfoundation.org. This is also where one can go to apply for financial aid. There is a button in the top right corner of the homepage that says Apply, and that will get the process started. Erica says she has heard from families and social workers who work with families on this, just how easy the application process is.

Erica Neubert Campbell says the Foundation can always use more fundraisers and more funds because there are times in which they cannot immediately come to the aid of everyone who applies. But even when that happens, she says, the Foundation tries to find a way to eventually help the applying family.

Additional Resources:

Pinky Swear Foundation Website: www.pinkyswearfoundation.org

TRANSCRIPT

Bruce Morton: Fighting pediatric cancer is expensive. In addition to the emotional toll on child and parents, the medical bills can be staggering. But there is an organization that seeks to address all of these needs. It is the Pinky Swear Foundation. Its executive director is Erica Neubert Campbell of Edina, Minnesota, and she is our guest. This is the Cancer Interviews podcast. I’m your host, Bruce Morton. Now let’s get to Erica’s story, and Erica, welcome to Cancer Interviews.

Erica Neubert Campbell: Thank you so much, Bruce. It’s an honor to be here.

BM: Erica, before we learn more about the Pinky Swear Foundation, we would like to learn more about you. We already know what you do for work, but we would like to know where you are from and what you like to do for fun.

ENC: I was born and raised in Long Island, New York, which is just outside New York City, so I always have a passion for anything connected to the East Coast. I grew up there and went to college in Williamsburg, Virgina at the college of William & Mary, but I found myself here in Edina, Minnesota. Some of my favorite activities are yoga, writing, I am very interested in blogs and writing books, and I have a second full time job as a mom of two. I have a 13-year-old daughter, Amelia, and a ten-year-old son named Duncan.

BM: Now we want to hear about the Pinky Swear Foundation. It exists for a reason, or probably, reasons, plural. What are they?

ENC: As you said, Bruce, childhood cancer is expensive. It can significantly wipe out a family. Families plan for college, they set aside funds for their child’s wedding, but nobody plans for cancer. Our organization exists to allow us to alleviate that financial burden of cancer, so that moms and dads can focus on what is most important, which is the health of their child. It truly allows them to take some stress off of those day-to-day expenses because when a child has cancer, life goes on. The bills pile up, the stress continues, and we want to be able to help that part of that health journey for the family. There are many doctors and nurses that are taking care of the health of that child. We will take care of the financial health of the family.

BM: There was a time when there was no Pinky Swear Foundation. We now know why it exists, but inspired its inception?

ENC: This is an incredibly beautiful story. It started back in 2003. There was a nine-year-old boy that lived here locally named Mitch Chepokas, and he was diagnosed with terminal bone cancer. One evening he was in the hospital with his dad, and he overheard a family in the room next door talking about how they couldn’t afford Christmas presents, and it broke Mitch’s heart. So, he turned to his dad and asked how much he had in his bank account. His dad said Mitch had about $6,000. Mitch, in that moment, decided to ask his dad to go to the bank and withdraw all that money. When his dad returned, they put all that money in a bunch of envelopes and wrote on them, “Love, Mitch xoxo,” and anonymously gave away those envelopes to every other kid on the cancer floor, including the one next door. That family, they were resting, and Mitch wanted to do this anonymously. As he was leaving the room, his wheelchair accidentally bumped the side of the door frame, and he urged his dad to run out of the room because he didn’t want them to be seen. They got to the elevator and Mitch was breathless as the doors closed, and Mitch told his dad, “That was awesome. I love giving, and I can’t wait to do it again next year.” Mitch’s parents were honest with him about his prognosis. So, Mitch’s dad, Steve said, “I’m sorry, buddy, I don’t think you are going to be here next year.” That’s when nine-year-old Mitch, took a deep breath and with the courage of a leader and in the innocence of a child, said, “Okay, dad, will you pinkyswear promise me, that you keep doing this after I’m gone?” Shortly after that, Mitch passed away and his parents founded this organization called the Pinky Swear Foundation and today we do exactly what Mitch did, but just on a much bigger scale. So, that first year, Mitch gave away $6,000 and this past year, we gave away approximately $1.4 million across the country to families who really needed that financial support and were able to keep food on the table, keep themselves in housing and get to and from doctors because of that original pinkyswear promise.

BM: Erica, quite clearly, as we have both mentioned, there are significant financial challenges for parents of a child with pediatric cancer, but as one who is much closer to this, share with us the types of challenges that exist that are less tangible and not financial but significant nonetheless.

ENC: Yes, we do provide financial support to families, but there are so many side benefits of that. First and foremost, asking for support. Do you know how hard it is to ask for help? So many families when in this situation, they have lots of caring neighbors and friends who will ask about what the family needs, and the parents will say, “No, no, no, we’ve got it.” Then they will quietly go back to their homes, really struggling because they are just unable to know how to ask for help. So many parents have said to us that we made the process easy, and you made it normalized to ask for help. It opened up doors to ask for other help within our community or within our friend group or have these conversations with people who generally wanted to help but didn’t how until now. That’s one way. Just helping people to understand that it’s okay to ask for support, then we allow families to give back to us by telling their stories. There is such a power in families being seen and heard. So, we offer this emotional support and the opportunity for families to reach out and become ambassadors for us to tell their story in a deeper and more authentic and real way that allows them the comfort to know they gave back and to pay it forward, similar to what Mitch did because sharing their story allows another family who maybe coming up behind them to feel less alone.

BM: I’ll tell ya, Erica, one thing we have learned from doing these interviews at our end, because some of our interviews are with caregivers, is that caregiving is a skill. It sounds to me like among those within the Pinkyswear family are people who have become skilled at caregiving, not only from what they do, but how they can teach others. Could you elaborate on that just a bit?

ENC: Yeah. Thank you for raising the caregiving piece, actually putting a name to it, Bruce. That’s because sometimes it is a thankless job, and it is quite possibly one of the hardest jobs. We see families who want to be with their child, but sometimes have to face this really challenging moment as a caregiver. It’s whether a parent spends time by the child at the hospital or does the parent go to work to keep up with my job that pays my health insurance of my child. We just see caregivers having to make these impossible choices every single day and they come in really big moments, whether one is at the hospital or at work or they come in micromoments about what food to buy, such as healthy versus food that is less expensive. There are these micro choices and these macro choices that caregivers have to face. It is such an unsung hero sort of job and for parents, they are often sandwiched not just for their child with cancer, but then their other children. We talk about the siblings of a child with cancer and how they can go unnoticed, and they get forgotten because all the family’s attention goes to the one child with cancer. So, yeah, there’s the caregiver that we really want to support and we want to support the entire family, including the siblings.

BM: I think I know the answer to this yes/no question, Erica, but I will ask anyway. Would you say it is a separate discipline, a separate skill in terms of caregiving for the kids who have not been stricken with cancer?

ENC: I think so. Yes, I do. I think it is a separate skill because it is a delicate dance. You want to make sure that sibling feels seen and heard, but also physically taken care of. That’s like when parents run their one child to their sports activity and one child to the doctor. We hear from a lot of caregivers and parents and how they have had to ‘farm out’ their other children to other parents in the community or grandparents, so I think the emotional care for those siblings becomes a separate skill. You are attending to the emotional health of your child that has cancer, but also the medical side. We hear from lots of moms who create detailed spreadsheets and notes on the number of drugs and other treatments that they have to give their child with cancer, and then it’s a separate skill to manage the emotional health of those siblings.

BM: We are going to come back to this little nugget of information a second time, but right now, there might be somebody watching or listening who wants to know how to get in touch with the Pinky Swear Foundation. How would they do it?

ENC: Please, please get on our website. It’s www.pinkyswearfoundation.org, and I’d say for two things. If you yourself or you know someone who has cancer who could use that support, there is a button on the top right hand corner of our website that says Apply, and we really want families in need to apply and get the help they need. If you don’t know a child with cancer, you can get on our website and donate in the memory of somebody you love, somebody you lost or somebody to support the mission.

BM: In addition to going down the road of application for aid, are there other bits of information that one can get from your website?

ENC: Yeah. There are also additional ways to learn how you can help when you know someone has been diagnosed with cancer. A lot of people who have a friend or family member, they don’t know what to say and they don’t know what to do and they don’t know where to turn for help. Our website has those resources, and I am looking forward to developing more of those resources on our website.

BM: Once one begins the application process, is it difficult to qualify for such aid or most people who apply get some level of aid, not all that they want, but certainly something. Is it difficult once one hits that Apply button?

ENC: No. In fact, we have heard from families and social workers who work with families on this that it’s a really easy application. Similar to any other website, you create a username and a password so that if you want to come back and finish the application later, you can, and they are really straightforward questions. One of the things I am most proud of it, too, Bruce, is that it is income-independent, meaning no matter how much money you have or don’t have, we are going to be there to help. Now the one caveat I will say is that we need more fundraisers. We need more donations because what keeps me up at night is I never want to say ‘no’ to a family that has taken the time to submit an application. I think about a mom or a dad maybe applying late at night after their child has gone to sleep, taking the time to get on our website and to fill out all of the requested information, and it breaks my heart of we have to say no. Under our business model: The more money we fundraise, the more money we can give to families. It’s very simple. The only caveat is, occasionally, we don’t have money for everyone. I work tirelessly to avoid that because I just want to say yes to every family. That’s my vision.

BM: As I listen to you, Erica, it sounds like you and your staff, the Pinky Swear family, there is no pricetag you can put on hope, and it sounds like at your end it’s a labor of love and that can provide hope. Is that fair to say?

ENC: Absolutely. We talk to families all the time. In fact, we get ‘thank you’ notes from families all the time, which I am amazed at. In the midst of all of their challenges and all of their busy schedules and doctor appointments, for them to reach out and write a handwritten note or to type us an e-mail, that’s how we know that this is working and that, to your point, Bruce, it creates hope. We have families who have told us that they were at their wit’s end, they were at such low, desperate moments, and then they received notice from us that maybe we were paying their mortgage that month or paying for their transportation that month or providing food for them that month, and while that is a financial gift, they have said that that feeling of hope and relief made a world of difference and it gave them just a little more resilience and a little bit more hope to make it through one more day and to me, that is worth it, and it is the extension of the gifts we give financially, it is the hope we provide emotionally. It says to the family that it is not alone, somebody has its back and will help it get through this really challenging time. The universe always provides because we hear stories time after time about how financial support came at that exact moment when the family needed to hear that and to me that’s really beautiful, and that’s that piece of hope that you can’t put a pricetag on.

BM: Erica, we are going to start to wrap things up, and we want to ask if you had a private audience with someone who had just learned their child had cancer, and if there was one thing you would want to share with them, what would it be?

ENC: Two things. Number one, you are not alone, and number two, apply to Pinky Swear. In fact, we have a woman that we work with now who works on our team. She herself had a child battling cancer. She tells the story that her son who was immediately rushed to the hospital that diagnosed him, you know, after the first few days, he immediately went into the chemotherapy treatment, a social worker sat them down and said this would be a long cancer journey, this is going to be really hard, it is going to put cracks in your marriage and you are going to have some financial challenges and my request is that you apply to Pinky Swear now. She said that was such a transformational moment for her. She did apply, she got the help she needed when she needed it, she was so grateful that now she wanted to work with us. She works on staff with us now and she tells that story, and that’s what I mean. When you are newly diagnosed, please reach out to us and we want to help. You are not alone.

BM: Once again, that website is www.pinkyswear.org.

ENC: Please join our Pinkyswear family and I promise you a really rewarding experience where you will know (a) you are not alone and (b) you can make a direct impact on families in the fight of their life.

BM: Erica Neubert Campbell, thanks so much for sharing a story that could and should reach out to a club that is really too big, but it is out there, the parents of those with pediatric cancer. This is a message that can resonate with them and make a big difference in their lives in a variety of ways. Erica, thanks for being with us on Cancer Interviews.

ENC: Thank you so much, everyone. It’s an honor.

BM: This concludes this episode of Cancer Interviews. As we always say at this time, if you or a loved one are on a cancer journey, you are not alone. There are people out like Erica, organizations like the Pinkyswear Foundation, that are here to help. So, until next time, we’ll see you on down the road.

Additional Resources:

The Pinkyswear Foundation: www.pinkyswear.org

Book by Erica Neubert Campbell: The Mastectomy I Always Wanted. https://www.kickstarter.com/projects/ericaneubertcampbell/the-mastectomy-i-always-wanted

SHOW NOTES

TITLE: Erica Neubert Campbell, Pediatric Cancer Patient Advocate – Edina, Minnesota, USA

The courageous and compassionate actions of a dying nine-year-old cancer patient inspired the founding of the Minnesota-based Pinkyswear Foundation. Through the years, the Foundation has donated millions to families with pediatric cancer patients. Erica Neubert Campbell is Pinkyswear’s executive director, who shares a heartwarming story.

Additional Resources:

Pinkyswear Foundation: www.pinkyswearfoundation.org

Book: The Mastectomy I Always Wanted https://www.kickstarter.com/projects/ericaneubertcampbell/the-mastectomy-i-always-wanted

Time Stamps:

02:03 Erica reveals the reason for the foundation of the Pinkyswear Foundation.

03:09 The heartwarming story that inspired the creation of Pinkyswear.

06:18 Non-financial ways in which Pinkyswear can aid families with pediatric cancer patients.

08:23 How Pinkyswear aids in caregiving.

11:40 How families get financial aid from Pinkyswear.

14:29 Erica describes Pinkyswear’s philanthropic business model.

17:42 Her message to anyone who has learned their child has cancer.

KEYWORDS (tags):