Spotlight On: Cheryl Wallengren and Claire Whitaker
The power of love and family
On May 27, 2003, Ernest Ferrin (E.F) Wallengren, beloved husband, father, brother, and son lost his battle with ALS. He was fifty years old. Ernie was a part of a big loving family, in which his wife, Cheryl, and mother, Claire, were a crucial part of keeping everyone strong throughout his ALS journey. Both women did everything they could to ensure Ernie lived the best years of his life and to keep their family moving forward.
Cheryl Alexis grew up in Massachusetts, and began her career as a pediatric nurse. She eventually transitioned to be a preschool teacher. At the age of 25, Cheryl moved to Los Angeles with a friend, intending on only staying for a year to work at a private school. But life had a different plan for her.
“During that time I met Ernie, became engaged after only six weeks and married six months later in the backyard of his mom and step-dad's home.” Cheryl recounts of their whirlwind romance, “I married not only a wonderful man but as a bonus gained a very large and loving family. He was a brother to five siblings as well as five step-siblings, and was an uncle to several nieces and nephews.”
Cheryl continued her work as a teacher as Ernie’s career as writer and producer for television grew more and more successful, working on shows such as “The Waltons”, “Falcon Crest” and “Bay Watch.” Along the way, Cheryl and Ernie added five children- two daughters and three sons - to their happy family. After the first child was born, Cheryl left her teaching career. “I was happy to be a stay-at-home mom. I became active in their schools PTA and involved in their many sports teams.”
The entire family traveled and vacationed together often. Cheryl describes, “Many of which were visits to grandparents in Utah, Massachusetts, and New Mexico with a trip to Walt Disney World, which we all loved, every few years. Life was good and as our children grew, Ernie and I looked forward to time spent alone to finally take that extended trip to Europe, which neither of us had been to before.”
Ernie's true passion was in coaching and mentoring youth basketball teams. He chose to put his profession on hold to found a traveling team, “The Blue Eagles”, that included kids from diverse backgrounds, including so called “troubled youths” that he pulled off the streets, with no place to go and no one to counsel them. When their oldest son, Seth, reached high school, Ernie began volunteering to coach in the Calabasas High school basketball program.
In his mid-forties, Ernie was very physically active. He was always outside with the kids or getting together with some neighborhood dads to play "pick-up" basketball games at local gyms, parks and backyard courts. Then he started falling.
“After one fall while playing basketball, Ernie developed a limp,” Claire, Ernie’s mom, recalls. “I teased him about being a 'middle-aged jock.' But the limp worsened and he started to develop other symptoms.”
Cheryl recounts how Ernie first went to the doctor and received a diagnosis of bursitis. “Then, after a few months, with no improvement and increasing difficulty walking with multiple falls, a further investigation from numerous doctors was called for.” she shared. “I didn't know it at the time, but Ernie had a feeling this was something very serious, which he kept from me.”
“Can you imagine a mother praying that her son has cancer?” Claire shared. “Anything but ALS!”
The day Ernie was diagnosed with ALS remains vivid in Cheryl’s mind. “After the words were said, the world started tilting. We were preparing for a family weekend away to San Diego to go visit the college our oldest daughter, Alexis, would be attending in the fall. On the drive back from Westwood that day, we talked and agreed not to say anything to the kids until later. That was a hard weekend trying to put on a ‘happy face’, while silently screaming and crying inside.”
They went on what would be the last family vacation to Walt Disney World, coming home in time for Alexis to graduate high school at the top of her class. Ernie and Cheryl waited until after the celebrations were over to tell their children, sharing only the basics of what the disease was about and how it would affect their dad.
Their life then changed dramatically. Ernie had researched all the information he could find, wanting to know everything that could and would happen to his body. To prepare for the changes, they sold their home and moved into a smaller and more manageable house, with the master bedroom downstairs, wide doorways and marble floors that Ernie could easily navigate in a wheelchair.
“I chose to only look at it in the ‘here and now’, taking the disease’s progression as it came.” said Cheryl. “We became active in The ALS Association Golden West Chapter and also with the National office. We enjoyed the monthly support group meetings, learning more from the other people with ALS and their caregiver/ loved ones.”
The information they learned at the support groups became especially useful when Cheryl was learning how to navigate Ernie’s daily care as he became physically weaker.
“I am petite at 5 feet tall, Ernie was 6' 2". Some professionals thought I was just too small, to transfer, lift, and do what would be necessary in his daily care,” she shared. “They were wrong, thanks to all the tips and tricks we learned from the wonderful people we met at the support group. They also taught us how to still live a vital and productive life, while battling the disease with all we had.”
For Ernie and Cheryl that meant becoming involved in raising awareness and funds for research. They collaborated on two documentaries on ALS, "Rolling," which went on to win awards at film festivals and was shown on numerous PBS stations across the country for over a year. The other was "Never Give Up", a story of the courageous people who lived their fullest lives after getting a devastating diagnosis of a terminal illness. They also created a video urging for more funds to the NIH for continuing research in treatments for ALS that was shown before Congress.
During all of this, Ernie continued to work and write for the television series he was involved with at the time of his diagnosis, "Doc" and "Touched by an Angel." He drew on his life experience for the scripts. “For both shows, he wrote powerful stories about the families and patients who are affected by ALS,” Cheryl describes. “We filmed PSAs that were shown after each episode aired telling people about the help that was available through their local ALS Association chapter if they, too, had a loved one battling the disease.”
Cheryl and Ernie were incredible advocates, speaking at conferences, writing articles and providing interviews to numerous outlets. Cheryl firmly believes that being involved and advocating for ALS, helped the family to accept and heal from this devastating diagnosis.
Ernie’s mother, Claire, was also prepared to do everything she could to help. When learning about her son’s diagnosis, Claire put a plan into action. She and Ernie’s step-dad, Rod, had retired to live in Arizona. They approached Ernie and Cheryl with their idea: selling their home to move closer and help the family. All agreed it was a great idea and in a few months they made the move and were able to buy a house on the same street as Ernie and Cheryl.
“They were a true blessing, not only as a respite for me to take a quick shower or grab a bite to eat, knowing someone was there with Ernie, but as a family gathering place for all the siblings, cousins, relatives of this amazing LARGE family to celebrate holidays, birthdays and many, many visits,” shared Cheryl. “Grammy-O (Claire) took over caring for our children in the ‘taxi’ duties required of active teens, overseeing their school work and just a place to go to to ‘hang out’ with their grandma.”
Claire adds, “It was no sacrifice; the situation was heartbreaking, but rewarding in the end as we were part of a team that helped him get the most out of life for every remaining day. “
Claire emphasizes the importance of getting help as soon as you can when dealing with the disease because it moves quickly. “Enlist family, friends, neighbors to help with food, chores, visits, errands, transportation, etc.” The Wallengren family was fortunate to have a lot of help and support from church members, who set up volunteer schedules for meals, and basic cleaning chores around the house.
For those just learning how to navigate through their diagnosis, both Cheryl and Claire agree that having a strong support system is important. Besides immediate family and friends, Cheryl recounts her relationship with other loved ones of people with ALS that she met in their support group. “We became friends outside of that setting, helping each other by being able to talk, vent and yes sometimes scream and cry together.”
Claire also shares that,” The ALS Association was a godsend for us, providing support, answers, and even equipment at times. I have attended support meetings at my local ALS chapter here in Sante Fe, sponsored small fundraisers at my home, and an artist friend and I produced an ALS Christmas card which we sold at local markets.
She adds, “There are plenty left -- if anybody's interested let me know – all funds go to support our ALS community and the search for effective treatments and cures for ALS.”
Cheryl recalls that after Ernie’s diagnosis, “We decided to LIVE life, going out to restaurants, attending basketball games, going on trips. Being out there doing, living, loving, laughing. It wasn't easy navigating wheelchairs, equipment, and such but you do learn to adapt and thrive. We had a lot of love and support surrounding us, which helped a great deal.”
Time did move quickly as the disease continued to progress. With additional support, Cheryl was able to manage Ernie’s care until the last six months of his life. By this time, he had a feeding tube which needed constant attention. They hired a nurse to care for him in 12-hour shifts, giving Cheryl much needed physical and emotional respite. Eventually, after numerous trips to the hospital for evaluations, Ernie and Cheryl made the decision not to have Ernie receive a ventilator. “It was heartbreaking,” shares Cheryl, “but once we made that choice, we were able to take advantage of hospice services at home.”
Claire remembers, “Two days before he died I asked him, ‘How are you doing?’ In his mechanical voice he answered, ‘I'm getting better.’”
After Ernie’s death, his fellow basketball coaches and willing family friends set up a basketball fundraiser known as the “E.F. Wallengren Hoopfest.” Hoopfest brings the community together while carrying on Ernie’s legacy. Family, friends, and strangers travel from all over to celebrate his life, shoot some hoops, eat delicious food, bid on some great silent auction items, and raise funds to defeat ALS. The 16th Annual EF Wallengren Hoopfest was held on Saturday, May 18. It drew over 100 participants of all ages and tons of spectators to Calabasas, CA on to celebrate the life of Hollywood writer & former Calabasas High School basketball coach, Ernie Wallengren, as well as all those affected by ALS. An incredible "knockout" contest and silent auction helped the event raise over $20,000! A delicious lunch was donated by Stonefire Grill and music and prizes were gifted by KOST 103.5 Radio Personality, and Ernie's brother, Mark Wallengren. Supporters can always make a donation at any time, and proceeds will benefit the mission of the Golden West Chapter.
“I attended of them through my eighties; now, at ninety, I cheer (and donate) from my home!” says Claire.
“It has been 16 years, since we lost Ernie Sometimes it seems so long ago and at other times not long at all,” Cheryl shares. “When Ernie was first diagnosed in February of 2001, our children ranged in age from 10 - 18. Then he was gone in May 2003. The children have grown, making their way in the world, some with children of their own now, I mourn the loss of a husband, but more so for our children in only having their father for such a short time in their lives.”
“I believe the experiences we all had in our ALS journey, both the good and not so good, made us the people we are today and the paths we took to be where we are. We will always be involved in helping to end ALS. That is part of the legacy Ernie left us- to fight for what is good and right and to ensure that other families will not have to go through what ours did.”
The ALS Association Golden West Chapter is grateful to the Wallengren family for their unwavering dedication of support to finding the cause, treatment and cure for ALS and support services for those affected by the disease. We are honored to be a part of Ernie’s legacy.