One woman’s journey in shaving the way to a cure

*This work was first submitted as a profile story for my Advanced Reporting course on April 5, 2021*

A woman carefully rises from her electric mobility scooter and slowly climbs the steps to take the stage.

The crowd quiets their chatter and looks up at Holly Jo Johnson as she asks, “who in this room has been personally affected by cancer?” Hands raise.

That was the way Johnson started this particular St. Baldrick’s event in 2019, as she usually leads off the head-shaving event with a prayer and a speech.

For the following year, Johnson took those steps a bit slower, and she had a paper with a typed speech written on it. This was the first time in 12 events where she had a prepared speech, as she prefers to speak what is on her heart at the moment.

“Instead of honoring Danny, seven years old, it was in memory of,” Johnson said. “He had passed one month before the event. It’s kind of hard to reflect that, knowing you’re going to honor someone, but when it becomes in memory, you need to continue doing what you’re doing, so that the child can live, and that cancer can be eradicated from their life or the potential of it.”

When Johnson spoke, people listened. She captured the attention of a large room full of people. From the moment she took the stage that year, everyone fell silent and eyes, some filling with tears, were on her.

“I feel if you can grab hold of the audience, they’ll remember and they’ll want to hear what you say next,” Johnson said. “I can’t control [emotions], but if they happen, then they took the words into their heart and felt them, not just heard them.”

For the past 13 years, Johnson has been shaving her head and raising funds for childhood cancer research with the St. Baldrick’s Foundation. Since 2009, she has raised a total of $216,119, which is enough money to fund two research grants through St. Baldrick’s.

She is also ranked the ninth top fundraiser within the entire organization and number one among women shavees.

The organization has reached out to Johnson on several occasions, including the CEO, to thank her for her loyalty. This year, she had an interview with CBS News Chicago and shaved her head on the air.

“The accolades are not to myself, rather, is I appreciate the spotlight that it gives me an opportunity to encourage others,” Johnson said. “There has to come a day when cancer is eradicated, and we will all be in the spotlight. Not for necessarily what we’ve done, but for who we’ve done it for.”

Avis Matsuda, the director of philanthropy for St. Baldrick’s has come to know Johnson through email and phone conversations since 2012.

Matsuda explained how donations have decreased in the past year due to the pandemic, so the foundation has seen how important faithful volunteers like Johnson are to the organization.

“It’s really easy to forget that kids with cancer are still being diagnosed, that kids with cancer are still dying and so people like Holly Jo, they are the ones that keep us going,” Matsuda said.

Matsuda said she wants to be more like Johnson and appreciates Johnson continuing her work with the foundation despite her own health challenges.

“I think it’s that kind of resilience and strength and that character of hers that really impressed me,” Matsuda said. “To see someone who’s struggling with their own health issues, but yet puts that aside and is able to give a part of herself to raise funds for childhood cancer research.”

Johnson has survived five cancers since first being diagnosed with breast cancer at 34. She also revealed during this year’s virtual St. Baldrick’s event that she has Parkinson’s.

However, when Johnson was asked about her own struggles, she would always turn the discussion back to the children and the desire to find a cure.

“I can’t run the runs or walk the walks, but there’s always something we can do to help someone else,” Johnson said. “If it means me being bald, my hair will grow back, and it’s time to shave it again, and I’ll continue doing it … I feel as though I am a part of the solution, rather than just being aware of the problem.”

During a high school reunion shortly after a St. Baldrick’s event, Johnson met with a lawyer who politely asked if she had cancer. Johnson then told him the reason why she was bald.

He believed the foundation to be a great cause and donated $15,000 in 2012. His organization has continued to donate every year, and this year he donated $25,000.

Johnson wants people to know that there are organizations out there that will help people with whatever they need.

“If you need help, if you’re struggling — mentally, emotionally, physically, spiritually, financially — there are people out there, but they’re not going to know unless you speak,” Johnson said. “Some people don’t have a voice. I’m loud and boisterous. I can speak for a child.”

Before Johnson knew about St. Baldrick’s, she shaved her head out of respect for her neighbor’s child, who was nine years old when she was diagnosed with cancer. Johnson then made the commitment to continue shaving her hair and said that as long as the young girl didn’t have hair, neither would she.

This is the anecdote that Heidi Phillips, a volunteer for St. Baldrick’s, recalled as one of the most prominent memories she has of Johnson.

The two met at a St. Baldrick’s event 11 years ago and have been friends ever since. Even though Johnson had no idea who Phillips was at first, she introduced Phillips to others at the event like she knew her forever, like she was already family.

“She will be your friend and your supporter, as she has done with me,” Phillips said. “I’m very happy and very blessed by that.”

Phillips may only get to see Johnson once a year at the St. Baldrick’s event, but she looks forward to it every March. She especially awaits Johnson’s annual speech as she takes her time when she speaks, so no one misses her message.

“She instills so much hope and happiness,” Phillips said. “Although it’s a sad subject, she sure puts a positive spin, and makes you want to do as much as you can to help find a cure for pediatric cancer.”

Johnson said that children have always and will always hold a special place in her heart, especially babies.

She was a nurse at a neonatal intensive care unit for premature babies until she had to stop working in 2001 due to her failing health.

“I do not want to see a child suffer, or to go without, or to not be loved,” Johnson said.

Johnson was almost brought to tears as she told the following story from her time as a NICU nurse.

“Every single baby I’ve ever cared for, before putting them in their crib, after feeding, I would whisper in their ear, ‘Always remember, somebody loves you,’” Johnson said. “They may never hear it in their lifetime, but I plant that in their mind. I was loved, and that’s why I do it for the children, to let them know they’re not alone.”

Johnson said the reason why she continues to shave her head year after year is because she is a woman of her word.

“I sign off any St. Baldrick’s communication ‘Until there is a cure,’” Johnson said. “I’ll continue doing it until those words have brought forth the fruit.”