Join Lila May in her Pink Tutu Trot

May 10 fundraiser helps 3-year-old’s fight against neuroblastoma

Lila May has been battling neuroblastoma for more than a year. After grim news from doctors, her mother Heidi and stepfather Blake refused to accept their choices. Now the 3½-year-old has much better chances, thanks to a treatment program in New York she will soon undergo. A fundraiser run, called “Lila’s Tutu Trot,” is being held in her honor, to help raise money for her medical expenses.

Lila May has been battling neuroblastoma for more than a year. After grim news from doctors, her mother Heidi and stepfather Blake refused to accept their choices. Now the 3½-year-old has much better chances, thanks to a treatment program in New York she will soon undergo. A fundraiser run, called “Lila’s Tutu Trot,” is being held in her honor, to help raise money for her medical expenses.

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 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.

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Parkdale third graders sing "12 Disaster Days of Christmas"

Welcome to your sing-able Christmas gift list. What follows is an emergency rendition of “12 Days of Christmas” – for outfitting your home or car in case of snow storm, earthquake, flood or other emergency. Read it as a simple list, or sing it to the tune of “12 Days” – you know, as in “ … and a partridge in a pear tree…” Not to make light of it, but the song is a familiar framework for a set of gift ideas that you could consider gathering together, even if the recipient already owns items such as a bunch of coats, tire chains and flashlights. Stores throughout the Gorge are stocked up on all these items. Buying all 12 days might be prohibitive, but here are three ideas for checking any of the dozen off your list (notations follow, 1-12.) The gift items needed to stay warm, dry and safe are also coded to suggest items in your abode (A) in your car (C) or both (B). 12 Gallons of Water (A) 11 Family meals (B) 10 Cans of propane (A) 9 Hygiene bags (B) 8 Packs of batteries (A) 7 Spare coats (B) 6 Bright red flares (C) 5 Cozy blankets (B) 4 Tire chains (C) 3 Flashlights (B) 2 cell phone chargers (B) 1 And a crush-proof first aid kit (B) Price ranges? Here’s a few quotes for days Three, Two, Four and Nine: n A family gift of flashlights (three will run $15-30, Hood River Supply, Tum-A-Lum) n Cell phone chargers (two will run $30-60) n Tire chains (basic set, $30, Les Schwab, returnable if unused for the winter) n Family meals ($100 or so should cover the basics for three or four reasonably well-fed days) n The home kit should be kept in a handy place near an exit, and remember that water needs to be replenished every few months. If you have a solid first aid kit already, switch out the gift idea with “and-a-sto-o-u-t- tub-for it-all …” Otherwise, it’s a case of assembling your home or car kits and making sure all members of the family know what the resources are and how to use them (ie flares and propane). Emergency situations are at worst life-threatening, at best deeply uncomfortable if you and your family are left without power for an extended period, or traveling and find yourself in a situation where you need to wait out a storm, lengthy traffic delay, or other crisis. Notes on the 12 gift ideas: 12 – Gallons of water: that’s one per person in a four-member family to last for three days, the recommended minimum to be prepared for utility outages. 11 – Easy-open packaged goods, energy bars, dried food and nuts are good things to include for nutrition. Think of what your family of four needs for three days to stay fortified and hydrated (see number 12). Can-opener also recommended 10 – If you have a propane camping stove, keep extra fuel handy. 9 – Hygiene bags: put packaged moistened towelettes, toilet paper, and plastic ties in large garbage bags (for personal sanitation) Resource list courtesy of Hood River County Emergency Management, Barbara Ayers, manager/ 541-386-1213. The county also reminds residents to Get a Kit, Make A Plan to connect your family if separated, and Stay Informed. See to opt-in for citizen alerts. Enlarge

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