by Jody Kerzman | Photography: Photos by Jacy
As a young mom in nursing school, Randi Heisler suddenly realized she didn’t want to be a nurse.
“I hated nursing school, but it was important for me to finish school.”
And so she did, never expecting she would actually use the things she learned in nursing school. But when her son Aspen was born, Randi’s nursing skills kicked in. So did her mother’s intuition. Randi had a feeling something wasn’t right with Aspen. She knew it in her gut.
“I knew something was off, but I wasn’t sure what it was,” recalls Randi.
The Rugby, North Dakota mom sought medical advice and took her son to regular physical therapy appointments, but one doctor’s visit after another left her with more questions than answers. Aspen’s trips to the doctor also left her with mom guilt and a prescription to treat postpartum depression.
“I never filled that prescription. I knew I didn’t have postpartum depression. I knew there was something wrong with my son,” Randi says. “I remember after one visit, my husband, Levi, said, ‘There’s nothing wrong with him. You need to be happy with this. He’s fine.’ But I still wasn’t convinced. I wanted a second opinion. The next day I made an appointment with a new doctor in Minot.”
The Right Call
On the day of the appointment, the doctor’s office called to cancel. A short time later, they called again, this time to see if she’d like to take an appointment with another doctor.
“I said, ‘Sure.’ What did I have to lose? We were already in town, so we might as well see this doctor,” says Randi.
Randi immediately connected with the new physician, Dr. Melissa Messerly.
“She asked me what was going on, and I explained how Aspen wasn’t walking, but he was just one. I told her he had constant diarrhea and was sweating a lot. I remember telling her I thought something was off, but at the same time saying, ‘I’m probably just overreacting.’”
But Dr. Messerly didn’t think so. She had some colleagues come in and examine Aspen, and they all came to the conclusion that something was indeed very wrong with the little boy.
“She told me he probably either had heart failure or liver failure, which was probably due to cancer or some other type of tumor. She wanted us to take an ambulance to Fargo immediately.”
Randi convinced the doctors to let her drive Aspen to Fargo, stopping in Rugby to pack a bag and pick up her husband.
Doctors in Fargo had some answers, but Randi still had questions. Doctors believed Aspen had some sort of a storage disorder, like diabetes or Huntington’s disease. A scan also revealed a tumor on his spine. They believed it was neuroblastoma, a type of cancer that forms in certain types of nerve tissue, often from one of the adrenal glands. It can also develop in the neck, chest, abdomen, or, in Aspen’s case, the spine.
Aspen was referred to the University of Minnesota. Doctors said Aspen’s blood pressure was so high that, had he not been diagnosed that day in Minot, he wouldn’t have lived another 24 hours.
“His blood pressure was off-the-charts high. Once he was stabilized, we went to Minnesota. He had surgery immediately.”
It was the first of numerous surgeries Aspen would have.
“The tumor just kept growing back,” recalls Randi. “It was in his spine, behind his heart. I remember before one of the surgeries, they made us tell him goodbye. I panicked and thought we shouldn’t have done that surgery.”
Randi relied on her intuition through it all. When doctors in Minnesota said Aspen’s tumor was inoperable, Randi knew in her gut they were wrong. So she took Aspen, who was two at the time, to New York for a second opinion. That trip led her back to Minnesota, and a surgeon who operated on the tumor.
In addition to the surgeries, Aspen also underwent chemotherapy. He also tested positive for the genetic disorder, mucopolysaccharidoses (MPS). Years later, they would discover he didn’t have MPS afterall; the tests were false positives.
Mom Knows Best
Today, Aspen is a healthy nine year old. But he still wears a back brace, and his spine has significant damage. He goes to Minnesota every three to six months for check ups and moved into the “survivorship clinic” last June.
“He still has a tumor in his spine,” says Randi. “But it hasn’t done anything for five years, so we’re just keeping an eye on it. To operate on it now would be scary. Originally, we thought he would need surgery by age six, but it is not progressing, so we’re waiting. We hope to wait until his spine is full-grown before he has another surgery.”
Randi has a feeling the next surgery is still years away. Afterall, Aspen has defied the odds since the very beginning. Doctors never expected him to walk after all his surgeries.
“He walked just before he turned four years old,” she says proudly. “He used a walker before that. I took him to physical therapy, even though his surgeons didn’t think it would work. But it did work. Aspen now not only walks, he runs.”
Still, he can’t play contact sports, which is hard for a boy growing up in a house with two hockey-playing brothers. Determined to be on the ice like his brothers, Aspen learned how to skate so he could join the Bismarck Bobcats mascot, Scratch, during the Brave the Shave Bobcats night in March.
Brave & Supportive
That’s just the tip of the iceberg when it comes to the Heisler family’s involvement with Brave the Shave. Their journey began in September 2010, just months after Aspen’s diagnosis. Randi was asked to shave her head.
“It was right after Aspen’s diagnosis, and people told me I couldn’t do it so soon. But I did it. I was part of the 46 Mommas for St. Baldricks. It was important to have 46 moms shave their heads, because everyday, 46 kids are diagnosed with cancer,” says Randi. “I was on the ‘Stand up to Cancer’ TV show. We taped it in Los Angeles. Being there was the best opportunity I was ever given, because it connected me with so many people I wouldn’t have known otherwise, including a surgeon who eventually operated on Aspen.”
In September 2016, Randi once again shaved her head. This time, it was part of a Criss Angel performance to raise money for St. Baldrick’s and for childhood cancer research. That fundraiser raised over $1 million to fund research and to help families fighting cancer.
Now, Randi is the development director for Brave the Shave, a move that she says just felt right.
“It is natural, because I’ve been a part of the efforts. I’ve shaved my head, I’ve lobbied in DC for cancer research funding,” Randi says. “But at the end of the day, it’s about the kids. I want to help the kids.”
Aspen wants to help too. Earlier this year, he designed his own bath bombs and worked with a woman to make and sell 5,000 bath bombs to raise money for Brave the Shave.
“I wanted to do something fun to raise money for Brave the Shave, and who doesn’t love a bath bomb?” explains Aspen. “I made three different scents. One is for my fellow friends from Brave the Shave and called ‘Brave Warrior.’ The second is called ‘Aspen’ and smells outdoorsy and like an Aspen tree. And the third is ‘Johnny Angel,’ which to me smells like the Luxor theatre where I watched my mom shave her head on stage at the Criss Angel show. It is named Johnny for his son who is still fighting.”
Brave Beyond an Event
Randi’s passion for Brave the Shave stems back to those first days and years of Aspen’s battle.
“When Aspen was diagnosed, we didn’t know anyone in North Dakota who had a child with cancer. We met people in Minnesota, but there was no one local to connect with. I remember telling a doctor in Minnesota that if a family came in he should give them my contact information. Throw HIPAA rules out the window. I wanted to help these families. I remember getting messages on Facebook from moms who were in the same boat I was in. We connected.”
Now, it is Brave the Shave’s vision to connect even more families. The first step, was making Brave the Shave a 501(c)(3) organization. Brave the Shave began as Basin Electric Power Cooperative event. It was an annual fundraiser to support childhood cancer research through the St. Baldrick’s Foundation. The event grew so much, the Brave the Shave board saw the need to create Brave the Shave as its own organization, to not only fund research, but also help local families who were struggling financially, because of a child’s cancer diagnosis.
“Brave the Shave is now more than just an event where people shave their heads for cancer research. It’s about support for families. We’ve paid mortgages, saved people’s homes. At Christmas, families can receive $1,000 for bills. We provide money for funeral expenses, no questions asked,” she explains. “But it’s about more than just the money. The main thing is connecting families. That’s so important.”
They’re connecting them by building a community, and holding events across the state and beyond.
“Our goal is to make Brave the Shave statewide. A lot of the events have been in Bismarck, but now Minot and Dickinson have their own events. There is a motorcycle ride planned for Benedict, and UND and NDSU are getting involved. There are 11 other events scheduled right now,” says Randi. “It’s going to grow beyond just shaving heads.”
The Brave the Shave board has submitted a grant for funding to start a bereavement group, because Randi says the support needed for those parents is totally different than what parents need when their child is battling cancer. Always aiming for the sky, she says that group may not even be specific to cancer. She’d like to reach as many parents in need as possible. Because, in her gut, she knows there’s a need. And if there’s one thing Randi knows, it’s to trust her gut. A mother’s intuition is almost never wrong.
The Brave the Shave event held in Bismarck on April 14 raised more than $450,000. Learn more about Brave the Shave at bravetheshave.net. And to see more photos of Randi and Aspen taken by Photos by Jacy, click here.