(Via Tucson.com) After she was diagnosed with acute myeloid leukemia, one of the first of Kelsey Taylor Luria’s many sorrows was losing her long, thick hair.
First it was blond strands on her pillow, then clumps. The 17-year-old Catalina Foothills High School senior was encouraged to take control by shaving it off, so she had a nurse do it. Still, it was agonizing. She refused to look in the mirror, instead putting a scarf over her head.
A few hours later, with her father and mother at her side, Kelsey stood in front of the mirror and removed the scarf. She cried at what she saw.
“Now everyone knows I have cancer,” she told her family.
Her distress and insecurity did not last long.
Within two months Kelsey had undergone a transformation and decided she wanted to help other adolescents with cancer and hair loss to do the same.
She decided to call her philanthropy the Bald Beauties Project®.
Bald Beauties has three components — professional photos of kids who lose their hair; age-appropriate and practical gifts for hospitalized teens; and research dollars for acute myeloid leukemia.
The main focus is to bolster the self-esteem of teens who have lost their hair due to chemotherapy, and to do something for an age group that often feels too old for the toys and gifts offered in hospital pediatric units.
The Bald Beauties Project® launches this summer. Its first fundraiser is set for next month.
SHOCKING DIAGNOSIS
On Oct. 5, Kelsey posted a smiling photo of herself on Facebook wearing a blue football shirt, her arm around a friend. She is standing on a football field. “Here’s to an amazing football season,” wrote Kelsey, one of the team trainers.
That was about the time the headaches began, and went on for weeks. She would later learn that the headaches were a result of anemia, which can be a sign of leukemia.
Within 48 hours of her diagnosis Kelsey had a port implanted for chemotherapy. She would spend most of the next six months at Banner-University Medical Center Tucson/Diamond Children’s and miss the rest of football season, her prom and her graduation.
”On November 5th, 2014 my life was upended when I was diagnosed with AML (acute myeloid leukemia). A cancer rarely found in adolescents. AML has begun to show me how much strength I have bundled up inside me as well as the amazing support system I have in my life,” she wrote on Facebook.
There are about 15,700 new cancer diagnoses per year in children in the U.S. and about 5 percent of them — approximately 780 — are AML, said Dr. Neha Bhasin, a pediatric hematologist/oncologist at Diamond Children’s, which sees about one to two new AML diagnoses per year.
AML affects fewer children than the more common acute lymphoblastic leukemia, or ALL, and has a lower survival rate, too,
The treatment is intense and concentrated — four cycles of chemo delivered intravenously and to the spinal cord. The sessions range from six to 10 days and recovery from each takes 20 to 30 days. Patients stay in the hospital for about 30 days with each cycle because of a high risk of infection.
BALD AND PROUD
Toward the end of her first chemo cycle, Kelsey heard from local photographer Stephanie Epperson. Her company, Steph E Photography, specializes in glamour portraits, “helping women feel comfortable in their skin,” she said.
“I know Kelsey’s dad and I was seeing his Facebook posts about what was going on. I thought, this girl needs to come in and have a day where she feels good about herself,” Epperson said.
Until that point, Kelsey had only been comfortable with a scarf, hat or wig in public.
“The day she came in she was on the fence about wearing her wig,” Epperson said. “I told her, ‘I would love to see you not wear it,’ but that was up to her.”
After getting her makeup done, Kelsey opted to be bald for the photos and posed for several, including a family portrait. In them, she appears radiant and self-assured.
“She lit up. It sort of transformed her,” said her father, Michael Luria, who is executive director at the Children’s Museum Tucson. “She never wore the wig again.”
After a local television station ran a story about Kelsey, another Tucson photographer reached out with an offer of professional shots. Natalie Lindberg of Natalie Lindberg Photography specializes in high school seniors.
“She was so sweet. During the photo session at Hacienda del Sol, Kelsey was totally posing, I barely had to guide her,” Lindberg said. “She would put her hands in the perfect places, she was so confident.”
Kelsey was bald in all those photos, too. And she was proud of them. She made one of them the cover of her Facebook page.
“It’s a long road, and it’s not over yet..,” says the caption she wrote with the photo.
BIG PLANS
Before her third round of chemotherapy, Kelsey had lunch with Lindberg and told her about wanting to start Bald Beauties.
“That girl had big plans,” Lindberg said. “She was just so excited about her idea.”
Kelsey wanted kids with cancer to have the option to get makeup, a photo shoot either at home or in the hospital, free photos on a flash drive and a large canvas print.
She decided going through hospital social workers would be the best way to approach the teens and created an application for the patients to fill out. It would be available to both girls and boys.
Drawing on her own experience, Kelsey wanted to fill a need she’d noticed while hospitalized. When a child has cancer and is home, a fever means an immediate trip to the hospital. For that reason, Kelsey always had a bag at the ready with her favorite hospital necessities, like pillow cases from home, blankets, an eye mask and rubber-soled slippers.
Kelsey wanted to give bags like that to other teenage patients.
“A lot of the kids she met did not have much in the way of financial resources,” Michael said.
GRUELING TREATMENTS
Kelsey had to put her Bald Beauties Project® on hold in February.
“After that, she got really sick. We were waiting for her to finish treatment and get better,” said her mother, Maya Luria, community relations coordinator at the Community Partnership of Southern Arizona.
Friends and family formed a “B Positive Team Kelsey,” named for her blood type. She began keeping an online blog about her grueling treatments, with entry titles like “hell week,” referring to a week when, on top of everything else, she had an emergency appendectomy.
There was a lot of pain and too many indignities to count. She had three blood infections, and more than 100 transfusions during her treatment.
Kelsey’s bone-marrow biopsy showed no evidence of leukemia, which is what she’d desperately wanted. While the chemo had put her into moderate heart failure, her family remained cautiously optimistic.
Besides, there was a future to get excited about. Mascots Wilma and Wilbur Wildcat had hand-delivered Kelsey’s UA acceptance letter to her hospital room. She wanted to study journalism.
The Lurias were blindsided by what happened next.
Kelsey went into acute liver failure. Her liver function was so poor that doctors thought she might need a transplant, and she was airlifted to UCLA Mattel Children’s Hospital for more specialized care than what was available locally.
On Sunday, April 12 — her 18th birthday — her liver had improved. Eleven days after she arrived at UCLA, she was airlifted back to Diamond Children’s.
”This year isn’t so much about cake or candles but rather celebrating Kelsey and her grit, determination and strength,” Michael and Maya posted on Facebook.
HEART FAILURE
Kelsey had turned a corner with her liver, but her heart was failing.
“We have learned through the past that certain doses of certain chemotherapy agents can lead to higher risk of heart disease, but the timing of that heart disease is uncertain,” Bhasin said. “It can occur soon after chemotherapy is delivered or it can occur 10 to 15 years after chemotherapy is delivered. Kelsey, unfortunately, suffered acute heart disease post-chemotherapy.”
Fifty-eight percent of pediatric cancer-associated deaths are from the cancer itself, according to the Children’s Oncology Group, an international research consortium. The second-leading cause is heart disease from treatment-associated complications.
“Patients like Kelsey remind us all that there is a lot of work to be done for childhood cancer,” Bhasin said.
HER LEGACY LIVES ON
Kelsey wanted to live, but her options had run out. Her heart was shutting down.
On April 16, her family brought her home.
Though weak, she had long talks with her brother Max, 14, and her parents.
One of the things she spoke about with her parents was Bald Beauties.
While she wanted the emphasis to be on the photos and the teen kits, she also wanted some of the money to go toward research specifically into pediatric AML. Since the condition is so rare, she felt more could be done, particularly since so few cancer research dollars go to pediatric cancers in the first place.
Kelsey died at home during the evening of Saturday, April 18. It was six days after her 18th birthday, the same night as her high school prom.
Michael and Maya are continuing their daughter’s work, putting together the teen kits and ordering replacement items. It was their idea to add a “Dammit Doll,” a favorite gift Kelsey had received while hospitalized. It invites the user to slam it against the wall in moments of frustration.
The Lurias are also organizing a fundraising dinner for next month and are identifying teens at Diamond Children’s for photo shoots. Both Epperson and Lindberg have signed on to help.
Epperson’s photo of Kelsey with her parents and brother is the last one of all four Lurias together. Those photos have given the family firsthand insight into why their daughter believed so strongly in the Bald Beauties Project®.
”I will never truly understand why I was given AML, I will never get back the things I’m losing, but I will fight and because of that, I will be stronger, and I will impact the world,” Kelsey wrote on Dec. 24. “Since being diagnosed with AML I have learned so much about myself. My name is Kelsey Taylor Luria and I am more than cancer.