Community supports teen, family through life-saving treatment
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The Crist family shows off their new haircuts with Lily, whose Chinese name is Aixiao. The family — Elissa, Tiana, Malech, Claire and parents Sally and Chad Crist — wears T-shirts created to support Lily’s bone marrow transplant journey.
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Ponytails cut at Lily’s fundraising event in March will be sent to the Pantene Beautiful Lengths program to be made into wigs for cancer patients.
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Lily shaves Laura’s head with some help from her mom.
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Sally, then poses for a portrait.
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A Ronan family has given a young girl a second chance at life, and her new community is supporting the effort.
Lily Crist came to America two years ago, adopted from China by a Ronan family. The 15-year-old with long dark locks had spent her entire life in an orphanage, where care for her hereditary blood disorder called thallassemia, was often ignored due to expenses.
With thallassemia, the body makes an abnormal form of hemoglobin, the protein in red blood cells that carries oxygen. The disorder results in large numbers of red blood cells being destroyed, which leads to anemia.
Now Lily is getting treatment at Seattle Children’s Hospital that should bring a cure. Although thallassemia is not a cancer, the treatment steps are the same as those for leukemia. Lily is undergoing three weeks of chemotherapy before she can have a bone marrow transplant, currently scheduled for May 15. She’ll then have blood transfusions three times per week as her body tries to build a brand new immune system. During this time, Lily will be cut off from everybody as the slightest cold could be disastrous.
Mom Sally Crist is staying with Lily throughout her treatment. The earliest Lily can return home, if there are no complications whatsoever, is late August.
A fundraiser March 6 at Mission Valley Aquatic Center helped raise money to offset travel, food, parking and emergency expenses for Sally, her husband Chad, and their four other children.
Laura Simpson and Kim Leibenguth helped organize the event. Laura has fought cancer for several years, and said Sally is the first person to volunteer and bring Laura anything she needs.
“She’ll do it, then the one time she needs help, she doesn’t know how to take it,” Laura said fondly of her friend, but “it’s totally different when there is a child involved.”
Sally agreed it is hard to accept help.
“It is very hard to have people help you, and it’s hard to leave your family and that responsibility,” Sally said in a phone conversation from the Seattle hospital.
Aside from raising funds, the event served an equally important purpose: Lily shaved her long hair in preparation for chemotherapy.
She didn’t become bald alone; she asked Laura to shave her head, too — although Laura’s shoulder length hair had taken her 10 months to grow back. Laura agreed, knowing that if Lily had her head shaved while surrounded by friends, it would be less traumatic than having it fall out later.
“Because it’s such an emotional process, her parents decided it would be better right before she went, rather than in a new place, overwhelmed with what is going on,” Laura said.
Plus, Lily wanted to donate her two 19-inch-long ponytails to a program that makes wigs for cancer patients.
Remarkably, a total of 20 people had their hair cut at the fundraiser resulting in a table full of ponytails to be donated to create wigs for cancer patients through Pantene’s Beautiful Lengths program.
Nearly 100 people came to the fundraiser to support the family, and stylists from Salon Envy volunteered their haircutting skills.
“We were extremely surprised and pretty elated when it was all said and done,” Laura said.
Laura met Lily a year ago. Lily’s siblings compete with the Lake Monsters swim team alongside Laura’s daughter.
“I feel like the kid is kind of like one of my own. We really relate to each other,” Laura said. “She has had to deal with (her disease) her whole life, and I’ve had to (deal with cancer) for the past seven years. She talks to me and opens up to me about this stuff.”
Because Lily is still learning English, Laura asked her how she is going to respond to questions regarding how she is feeling.
Lily had it all figured out, she said. She’ll use “emojis” — little faces that represent emotions on smart phones and Facebook.
“She’s such a champ,” Laura said. “She’s so positive. She really is a super strong kiddo.”
Contributions can still be made at the aquatic center by putting cash in the donation jar or by purchasing T-shirts made to support Lily’s journey.
