Those are the words of former Spring Lake resident Rachael Bottema Schwab included in her story on the Crowns of Courage website.
Schwab, now of DeWitt, and 11-year-old Tegan Rose of Spring Lake participated in an ArtPrize project created over the past year by henna tattoo artist Amanda Gilbert and her boyfriend, Steve Stone.
The first round of voting for ArtPrize 9 began Sept. 20 and ends Saturday. Round 2 voting begins Sunday.
Twenty-two women and girls were selected for the project, which also included a make-up session by Jessica Renusson or Tara Pennington, and a photo session by Dave Burgess.
Both Schwab and Tegan’s mother, Angela, saw a Facebook post asking for participants in the project and reached out to the creators. Gilbert said they received many requests to participate, but could only work with 22.
A live Crowns of Courage event will take place Friday at the exhibit location on the second floor of DeVos Hall in downtown Grand Rapids.
Schwab, 36, discovered she had breast cancer while doing baseline testing after a positive test revealed she had the BRCA1 gene. The gene is an indicator for cancer.
Several extended family members had already tested positive for the gene, but Schwab wanted to wait until she was done having children before participating in the genetic testing.
“I met with the oncologist who informed me that, due to the size of my tumor, I was going to require chemotherapy,” Schwab said. “I was crushed. The word ‘chemotherapy’ made the cancer diagnosis so much more real than it had been. That was the first time I cried. And I cried a lot.”
Schwab said that she always had pretty hair and loved it.
“In my brain, I knew that it was ‘just hair’ and that it would grow back, but that didn't make it any easier when I lost it,” she said.
But the Crowns of Courage project changed her outlook.
“It was so amazing to see my bald, shiny head turned into a masterpiece,” she said. “Finally, I wasn't so self-conscious about being in public without any hair.”
The 1999 Spring Lake High School and 2003 Hope College graduate said she is in awe of all the girls and women who participated.
“Getting to meet everyone and share stories was just inspiring,” Schwab said.
Schwab said she had her first reconstructive surgery in August.
“I may need one more surgery — we will see,” she said. “Six weeks after surgery, I'm finally starting to feel better again. My hair started growing shortly after getting crowned. It's just over an inch long and it's kind of curly.”
St. Patrick’s Day 2017 started with the excitement of making sure 10-year-old Tegan Rose was wearing some green and the added bonus of friends coming home after school with her to celebrate her upcoming 11th birthday.
But first, the daughter of Mike and Angela Rose had to go to the doctor for her annual wellness check. During the checkup, the physician assistant noted that Tegan had an enlarged spleen and had the girl’s blood tested for possible mononucleosis.
Shortly after noon, Angela said she got the dreaded phone call informing her that her daughter had leukemia.
Within a couple of hours, the family was on their way to Helen DeVos Children’s Hospital in Grand Rapids and the medical experience that is still scheduled to continue for at least a couple more years.
Tegan was known for her beautiful, long hair, which she was eventually able to donate to Children with Hair Loss. The rest of her hair came out with treatment over the next couple of months.
“With the Crowns of Courage project, it made Tegan feel so beautiful and cool,” her mother said. “She was the only one that would be able to have a henna crown tattooed on her head (besides her gym teacher, Mr. Robinson). It made her feel strong and empowered to go out and be herself.”
Six months after her diagnosis, “she’s doing actually really good for everything that’s going on in her life,” said Tegan’s father, Mike. “She’s in school. She has treatment three times a week.
“This is the intensification phase,” he added. “She has six more weeks of this. Then she goes into the maintenance phase.”
During the minimum two years in the maintenance phase, Tegan will receive her chemo in medication at home and will have to go the Grand Rapids hospital once a month for a lumbar puncture and treatment, if needed.
Although she misses a lot of school, all of her teachers work with her, she has friends bring her homework and there’s a full-time teacher on the hospital’s oncology floor to help the children with their schoolwork, Mike said.
Participating in the Crowns of Courage project “released the negativity she had in her life,” Mike said. “She chose the VW bus for her tattoo because every time she sees one it just makes her happy.”
Mike said the day Crowns of Courage was revealed to the participants, Tegan had to go in for treatment.
“She wasn’t feeling that good,” he said. “But once we got there, that cracked it. It changed her attitude to see her picture up there. It was total 180 degrees and smiling and having a good time.”
Mike said they have good insurance, but costs are still mounting with Tegan’s treatment. A Go Fund Me page can be found at https://www.gofundme.com/team-tegan.
Tegan also has an uncommon blood type, O-negative, and often has to wait for blood to be delivered from far away before she can get her treatments.
Mike asks that people consider donating to Michigan Blood, because the supplies stay in West Michigan.
About the artists
Amanda Gilbert has been creating henna tattoos for eight years.
"When they first sit down in the chair, it's almost kind of somber a bit,” she said of working on the Crowns of Courage project. “And then we start asking them questions because we want the crown to be about them.”
Gilbert and Steve Stone have been creating Crowns of Courage for nine months to help women fighting cancer discover their inner beauty. Their partner, David Burgess, photographs them.
The collaboration became their ArtPrize entry, Burgess explained.
“We have these women come in and they are battered, they don't have any hair, and they're in a real vulnerable spot," Burgess said.
That is, until the moment their crown of courage is revealed and their photo shoot begins.
“For each of these photo sessions, we did about 200-300 images for each woman," Burgess said.
More information on Crowns of Courage can be found at www.crownsofcourage.org.
Gilbert wants to expand the project with her vision to bless every woman who is battling cancer with a henna crown. To accomplish this, she will be turning Crowns of Courage into a formal non-profit organization. To facilitate this, there is a Crowns of Courage fundraising site at https://www.gofundme.com/crownsofcourage.
WZZM-TV contributed to this story.