Chris Elliott Fund continues the fight to end brain cancer
Published 11:52 am Thursday, January 8, 2015
On a Friday night in April 2013, Neil Scott received a phone call from his girlfriend Kitty Huish that confused him.
“She was acting like she was drunk,” he said.
When he arrived at her house, she was OK at first, but then she collapsed. Scott suggested calling 911, but Huish told him not to and just asked for some ginger ale and crackers. Scott, 67, continued to monitor Huish, 61, throughout that weekend to make sure she was OK and on that Monday, she saw a doctor. The doctor ran some tests and did an MRI and told them they would contact them that Wednesday.
But Scott said within an hour of them leaving the doctor’s office, the doctor called to say they had found a mass on Huish’s brain. That mass turned out to be glioblastoma multiforme (GBM), which is the most common and aggressive malignant primary brain tumor.
MORE OPTIONS
Upon this diagnosis, Scott said they sought a second opinion and when they received the same news, he began researching online about the disease. He came across various support groups and websites. The Seattle resident also discovered the Chris Elliott Fund (CEF), a national nonprofit organization based in Redmond whose mission is to shorten the gap and time it takes from a patient’s brain-cancer diagnosis to receiving advanced treatment and enrolling in clinical trials.
Through CEF, Huish — whose home is in Mill Creek, but currently lives at Aegis on Madison, an assisted living community in Seattle — was able to enroll in and receive a few different clinical trials and advanced treatments. And while these trials and treatments only worked for a short time, she said just knowing there were more options out there for her besides the traditional chemotherapy and radiation (which they did try) helped.
“That’s always helpful,” Huish said, “if there’s a ray of hope out there.”
She said she and Scott would not have known about these alternatives, which have helped her health greatly.
“I’m doing really well right now and a lot of that is due to Chris Elliott Fund,” Huish said.
ALL IN A YEAR’S WORK
CEF moved into its current location at 14959 N.E. 95th St. in Redmond a little more than a year ago after operating out of founder and president Dellann Elliott Mydland’s Sammamish home for 10 years and about a year and a half in offices at JMS Construction on Willows Road Northeast in Redmond.
Since the organization has been in its current location, Mydland said they have been working to increase their national public health policy work and focusing on raising awareness of not just CEF, but awareness of brain cancer, as well. She said they have been educating people through various outreach mediums such as social media, support groups and patient conferences held locally and throughout the country.
Mydland said they plan to continue this work in 2015, as well, adding that they would like to reach all groups of people from brain patients to health-care providers to the general public.
One way the organization will continue its outreach is by holding its 2nd Annual Patient, Caregiver, Partner & Friends Community Open House from 4-8 p.m. on Friday at its Redmond location.
Attendees will have the opportunity to meet the nonprofit organization’s staff and learn more about the work they do on behalf of brain-tumor patients across the country, including immediate access to advanced treatment and clinical trials as well as the organization’s 2015 expansion plans. Refreshments and light appetizers will be provided.
To help with planning, attendees are asked to pre-register at tinyurl.com/lxt5ahk.
SUPPORTING THE PATIENT
In addition to working on raising awareness, Mydland said they also provide personalized guides to help patients and families seeking their services. These guides include an array of information, including the top 10 questions patients should ask their doctors immediately when they are diagnosed with a brain tumor. There is also a vocabulary sheet with common terms related to brain cancers, which CEF created with the help of Daniel Silbergeld, a professor of neurological surgery at the University of Washington Medical Center.
For Mydland, the work she puts into CEF is personal as she lost her husband — the organization’s namesake and cofounder along with her — after a 22-month battle with brain cancer on June 13, 2002.
“I know what it was like,” she said about having to deal with an illness for which there is not much information and not a lot of meaningful help.
For Scott and Huish, working with someone who has personal experience with what they have been through has been very helpful. When Mydland told them about a new treatment and they were unsure about it, she connected them with a couple who was using the treatment.
“It was a really, really good experience,” Scott said, adding that the treatment “has prolonged her life.”
Huish agreed that meeting people who have been or are in the same situation as they are has been vital. She said on Sept. 20, 2014, she participated in the Seattle Brain Cancer Walk, which she learned about through CEF, and met fellow brain-cancer patients. Huish said it helped her not feel so alone to see other faces going through similar experiences.
