Lila May has been battling neuroblastoma for more than a year.â€ˆAfter grim news from doctors, her mother Heidi and stepfather Blake refused to accept their choices. Now the 3Â½-year-old has much better chances, thanks to a treatment program in New York she will soon undergo. A fundraiser run, called â€œLilaâ€™s Tutu Trot,â€ is being held in her honor, to help raise money for her medical expenses.
As of Tuesday, April 29, 2014
In many ways, Lila May is a typical 3½-year-old. She’s feisty and energetic, she likes to bake cookies and play dress-up, watch Blazer games, cuddle with stuffed animals, dress in pink, dance like a ballerina with Teacher Nancy and has an absolutely darling smile.
How to help
Join Lila May at 9 a.m. May 10 at the Hood River side of the Twin Tunnels Highway in a fundraiser run/walk. Registration starts at 8 a.m. for the 3K, 5K and 10K distances. The $15 fee goes toward Lila’s medical expenses.
For more, see facework.com/ angelsforlilamay
But unlike most her age, Lila is also fighting for her life.
Just after her second birthday, she was diagnosed with Stage 4 neuroblastoma. After initial rounds of radiation and chemotherapy treatment, Lila’s doctors discovered that not only was the cancer back, it had spread.
“Things are not looking good for our little angel,” wrote Lila’s mother, Heidi, in February. “The cancer is back, this time it’s in her brain. The neurosurgeon is going to take out the tumor tomorrow at 10 a.m. She thinks she can get it all which is good. However the bad news is that the cancer cells are in Lila’s blood, which means more tumors will grow back in no time at all. Our options are to give her at-home chemotherapy which will give her a less than 20 percent survival rate; or just give her pain meds until the tumor gets so big that it takes over her brain and she falls into a coma.
“I hate both of these options. This little girl is such a bright, beautiful shining star and now she is being taken away from us after everything she has already been through. How do parents decide which path to take? This is an impossible situation.”
But in this darkest of times, a glimmer of light found the Mays.
Rather than accepting the fate doctors gave Lila, the family started searching for options other than the two unbearable ones they were presented with, and what they found could very well save her life.
“A friend contacted us through facework, of all places, and told us about a special program in New York,” Heidi said from her Hood River home Monday afternoon. “We did some research and found out Lila qualified for it. With this treatment her chances of survival are supposed to be up to 75 percent. The program had been a study for about 10 years, but I think now that they’ve had success with it, it’s more of a norm there.”
Lila was home this week recovering from radiation treatment. Once her cell counts are back up, she will undergo another round of chemotherapy, at Doernbecher Children’s Hospital in Portland. Once she recovers from that, Lila and Heidi will travel to New York for a couple of months, for a special antibody therapy program at Memorial Sloan Kettering Hospital.
“They basically put a tube in the back of her head, going into her spine, where they inject antibodies twice a week for a couple months,” Heidi explained. “Lila still has energy and is as feisty as ever. Physically she is doing pretty good, but I think mentally and emotionally she is starting to wear down. Losing her hair has been pretty hard on her.”
Lila May’s Tutu Trot
Lila’s favorite color is pink, and as a dancer she loves wearing tutus. In the spirit of both, the May family and friends are inviting the community to dress in pink, tutu’s encouraged but not mandatory, and show support for Lila in a run/walk on May 10. The fundraiser event will start at 9 a.m. (registration starts at 8 a.m.) at the Hood River end of the Mark O. Hatfield Twin Tunnels Trail. Registration is $15 per person (kids are free) and everything raised will go toward Lila’s medical expenses. Categories include 3K, 5K and 10K, with strollers and doggies allowed.
“She will either run with me or help start the run,” Heidi said of Lila. “That will depend on how she feels, but she’ll definitely be there.”
Registration can be done the morning of, or in advance through the event’s facework page (search for Lila May’s TutuTrot). Anyone with additional donations can inquire through the same page.