To Chris and Heather White, their daughter Carmen Leolani was never just an ordinary girl. From the beginning, the hazel-eyed girl had a joyful spirit – her days were filled with dancing, playing, painting and laughter. And her sparkling personality was contagious.
“Her mind was in an imaginative mode –she wasn’t grounded,” said Heather White, of her daughter. “She was always playing with her little toys; she would create these whole worlds.”
Living on Kauai, the Whites were like any other family before May 26, 2011—their daughter barely 4 and son Trevor not yet 3 years old. For several days, Carmen developed a fever that wouldn’t go away. Heather White took her daughter to the hospital. Her blood counts were off, so they immediately flew her to Kapiolani Medical Center on Oahu where she was diagnosed with acute lymphoblastic leukemia.
“We almost lost her that day,” Heather said.
According to Chris, “in an instant,” their lives changed forever. They soon found themselves thrust into a world of frequent trips to Oahu filled with treatments — chemotherapy, bone marrow biopsies, transfusions, infusions, operations and doctor visits. They endured therapies that often required weekly trips to the island. Despite all of the treatments, despite losing her hair and suffering through painful joints and hundreds of needle pokes, the Whites said that Carmen courageously remained “sweet, funny and creative” throughout.
During her visits to Kapiolani, the Whites tried to keep Carmen’s life happy, fun, and as normal as possible. Dubbed mother-daughter trips, Heather made sure their time was filled with interesting trips to the zoo, aquarium, museums and Carmen’s favorite foods to counterbalance her treatments.
“When she thought of this whole experience, I wanted her most vivid memories to be that we went on these great trips to Oahu,” Heather said. “I made it happen.”
Heather said that after learning of Carmen’s diagnosis, the Kauai community, rallied around them – offering to help with Trevor, doing fundraisers for expenses, and bring over food and produce. Family and friends from the mainland also came to their side with fundraisers, prayers and support.
Six months after Carmen’s diagnosis, on Dec. 3, the family moved to Hawaii Island for Chris’ work. In Kona, despite their trips to Oahu, they continued life as usual – adding in soccer, judo, swimming and surfing for both Carmen and Trevor. Carmen started Hualalai Academy in August, and Heather said her daughter seemed to be “back to her old self.”
“We had a normal life,” Heather said. “We could do everything that we were presented with—go to a beach, art, paint our faces — life was still fun.”
Then, in October 2013, when Carmen was in remission and almost finished completing her maintenance therapy, which would have ended June of 2013, she became ill following a round of chemotherapy. Then, as quickly as their fight began, Carmen passed away suddenly in the arms of her parents at home on Oct. 9.
After Carmen passed, Heather said support poured in from all over, and the Kona community came to their aid as well. Hualalai Academy, where Carmen was a kindergarten student, built a garden in honor of Carmen. Members of Living Stones Church in Kona brought the family meals every day. Friends helped, family flew in.
Creating Team Carmen
Michelle Marshall, the mother of one of Carmen’s friends, arranged to have Carmen named as the Honorary Angel for the Lavaman Waikoloa at last year’s event in March. Marshall suggested they create a team to run the race. The Whites were honored by the idea. Despite their devastation, they chose to fight on, and Team Carmen was born.
“Their story was so special, how they turned tragedy into something positive,” said Gerry Rott, Lavaman race director and founder, who chose Carmen as the race’s Honorary Angel. “I admired that.”
They quickly assembled a 17-person team from their family, friends and co-workers who were eager to make a difference for the family, with participants hailing from Hawaii, Oregon, and California.
Fueled by the memory and spirit of Carmen, in just three months, they were able to raise more than $31,000 for Team in Training, to help the Leukemia and Lymphoma Society with funding to use in the fight to find a cure for leukemia. Heather’s sister and brother-in-law joined from California.
“Heather, Chris and Trevor, my brother-in-law, sister-in-law and nephew, respectively, are three of the most courageous individuals I have the pleasure of knowing,” said Darren Miller, a Team Carmen member who will be racing again this year. “They have each found within themselves the personal spirit and courage not just to embrace life in the face of a seemingly unimaginable loss, but to move forward in the spirit of life, love and to give back what they have learned through this experience in order to help change and make a difference in other’s lives now and in the future.”
During last year’s race, Carmen’s story was shared at each pre-race meeting and its 2,000 athletes and volunteers with a moment of silence remembered her just before the race began.
“It was absolutely phenomenal. It was the most healing thing — the prayer before the race and having a moment of silence for Carmen,” Heather said. “The whole day was magical. We had printed on our jersey ‘Team Carmen,’ so when people would go by, they would say, ‘Go team Carmen!’ It was overwhelming and really beautiful.”
This year, Team Carmen has 18 dedicated people on the roster, including one member from Germany. They are quickly reaching their fundraising goal of $33,725, through donations and several fundraisers before the race on March 30.
To help, Chef Nick Mastrascusa, a member of Team Carmen, and Chef James Babian came up with the idea for a fundraising lunch. The men had worked at the Four Seasons Hualalai with Chris White, and the chefs respected and liked the family very much.
“We put our minds together and thought, ‘What is the way you can be the most effective to reach the most amount of people to make them aware and inspired by what we are doing?’” said Mastrascusa. “And we came up with the lunch.”
Chef Babian offered to have it at Pueo’s in Waikoloa, the restaurant he co-owns with his wife, Christine.
“We attended the ceremonies (Carmen’s celebration of life). I was very touched at all the people that were there and what an impact that little girl made on so many people,” Babian said. “There aren’t many people like that.”
Together, the chefs, along with sous chefs, cooks, bartenders and a full wait staff and general managers, donated their time for the luncheon fundraiser on Jan. 4, attended by about 60 people – prepping until 1 a.m. the night before, and arriving again early the next morning until long after the event was over.
Together, they were able to raise $18,500 from the event alone. Babian said that despite all of the work, the event was “very emotional and special.”
“My hat is off to them,” Babian said of the Whites. “One for being strong, two for being leaders in the community and three for making us all proud.”
Jenny Campbell, who will be biking and running in the Lavaman Waikoloa for Team Carmen, is competing in the race for the first time, despite a full work schedule.
“The enthusiasm and accomplishments of the other team members (most of whom are an ocean away) whether in training or fund raising efforts carries me and gives me confidence that I may not be the swiftest or strongest on the team, but I will finish the race, raising money for a cause so close to our hearts, in Carmen’s name and honor,” Campbell wrote in an email to North Hawaii News. “Carmen is the motivation for us all, to harness all the love, strength and joy she gave us and everyone around her, and pay it forward.”
In memory of Carmen, the Whites have created “Carmen’s Makana” at Kapiolani Medical Center. Twice a year, on Carmen’s April 1 birthday and on the date she passed, Oct. 9, Dr. Wendi Hirsch of Kapiolani Medical Center anonymously chooses one of her special, courageous patients and passes on a $300 monetary gift to the family in memory of Carmen.
“Our only stipulation will be that the family must strive to live, laugh and love just like Carmen did everyday of her life,” Chris said in one of his blog posts.
Heather said their intention is that the family will use the money to give the child a special memory during their treatment, just like they did with Carmen during her Oahu trips.
JJ enters Team White
The Whites recently learned they would be adopting a boy, Jake Jun Hao White, from Henan Province, China. They already have a photo of him and they hope to fly to China to pick him up sometime this summer, when he is around 21 months old. Through the adoption process, the Whites wondered how they would know when they found the baby that belonged to them. When they learned Jake’s approximate birth date, either Oct. 8 or 9, which is the date that Carmen passed, they knew the baby boy was a gift, wrapped in Carmen’s arms, just for them.
The White’s hope that through Team Carmen, Carmen’s Makana, a blog they have kept from her first diagnosis, and by spreading the message of Carmen, they can continue to spread her light and love throughout the world. On her wrist, Heather White wears a pink rubber bracelet with the words, “I love you, Carmen,” “Smile and be happy,” and “TLP.” She gives them out to others so that they, too, can look down at their wrist at any time during the day and remember the Tough Little Princess and how she faced her fight with joy and courage.
“Carmen is a beacon of strength and love and happiness – that is what she was every day,” Chris said.
He said that people who met her were inspired by her, even when she had no hair, yet was dancing and smiling and joyful.
“It is impossible not to put yourself in her shoes,” Chris said. “To look at her courage, it encapsulates everything we hope for ourselves.”
Heather said that despite all, she is honored to have the gift of Carmen. When they chose her name before her birth, Carmen, which means “song,” and Leolani, which means, “Voice from heaven,” they had no idea she would have such an impact on people beyond her five years of life. But through the White’s passionate desire to continue doing good through Carmen, they have been able to harness her happy, joyful energy and continue to bring it to families who need it most – in whichever community they enter.
To donate to Team Carmen, visit their team page at http://pages.teamintraining.org/hi/lavatri14/teamcarmen. To read a fuller account of the White’s journey or to donate to Carmen’s Makana, visit their blog at http://carmenleolaniwhite.blogspot.com.