A pink ribbon attached to a small tree flutters in the breeze along the driveway of the West home in Cutchogue. The cars in the driveway both feature pink silhouettes of a young girl with the name Morgan underneath. Three flower arrangements rest on the porch.
The memory of Morgan West, 9, is ever-present.
Morgan’s mom, Nikki, is wearing a Winnie the Pooh shirt during a recent interview and drinking from a mug with the same lovable bear on it, an homage to Morgan’s favorite Disney character. Her dad, Adam, is dressed in a sweatshirt that reads “Let’s end childhood cancer together.”
They are tributes to their middle child, a third-grader at Cutchogue East Elementary School who died April 6 after a six-and-a-half-year battle with diffuse intrinsic pontine glioma, a highly aggressive brain tumor.
Morgan was diagnosed with DIPG at 2 years old. Statistically, only 10 percent of children survive for two years following diagnosis. Less than one percent survive for five years, the Wests said.
Morgan defied those odds.
“It’s weird to use the word lucky, but we were lucky to have her around for as long as we have because she wasn’t supposed to be here as long,” Ms. West said, choking back tears. “She was the strongest and bravest kid. Everything they asked her to do, whether she liked it or not, she did it. And then as soon as it was done she was up and laughing and she’d get over it and move on.”
A young girl with a great sense of humor, she made her parents and siblings — her older sister Hunter, 11, and younger brother, Wyatt, 4 — laugh all the time.
She carried her favorite Winnie the Pooh stuffed bear — she had multiple versions of the cuddly character — everywhere she went. Through every needle and procedure, he was there. He’s visible in tons of pictures on the nine poster boards that were displayed at her memorial and are now sitting in the living room of her family home, one of Morgan’s favorite places to be, her mom said.
“She loved home,” Ms. West said of her daughter. “She loved being home. As long as we were with her — she loved her family dearly — she was happy.”
She also loved Damariscotta Lake, Maine — an annual vacation spot for the West family where Morgan loved the freedom of jumping into the water with no clothes — and Disney World in Orlando, Fla.
The family of five made four trips to Mickey’s home, their last being in September after learning that Morgan’s tumor was a high-grade DIPG and completely inoperable, they posted on their Facebook page Helping Hands 4 Morgan at the time.
They booked the trip in a week’s time with the help of family and friends who went out of their way to donate and secure special events for the family, such as a dinner at Cinderella’s Castle and appointments for Hunter and Morgan at the Bibbidi Bobbidi Boutique.
But the most special was courtesy of Disney employees. While dining at the Crystal Palace, Ms. West asked their waiter if there was any possibility they could get a picture with all the Winnie the Pooh characters instead of the typical individual pictures.
The waiter grabbed his manager, who jotted down Ms. West’s phone number. Later that day she presented her with five free tickets to Mickey’s Not-So-Scary Halloween party.
There, in front of the Winnie the Pooh ride, Morgan was able to get her picture.
“It was a magical trip,” Ms. West said. “It was really nice, lasting memories for a last trip together.”
Since Morgan was first diagnosed, the West family received an overwhelming amount of support from friends and strangers alike.
Kait’s Angels, a nonprofit founded in memory of Mattituck graduate Kaitlyn Doorhy, held a fundraiser for the family in October that raised $11,000.
“She was the most precious little girl with a big heart and always smiling,” Darla Doorhy, co-founder of Kait’s Angels and Kaitlyn’s mom, said of Morgan. “Just like her older sister, Hunter, and her mom. They’re all just an inspiration to others.”
Throughout the six years the Wests have received thousands of dollars in donations through other avenues as well — including walks, fundraiser events, lemonade stands and more. Those donations made it possible for Mr. and Ms. West to stay home with Morgan during her last two months while she was in hospice care.
“They made it possible that we could be home with her,” Ms. West said. “I can’t thank people enough or ever repay people for that. The time that we had with her was the greatest gift that we got.”
The Mattituck-Cutchogue Board of Education held a moment of silence in memory of Morgan prior to its April 19 meeting.
“Morgan served as an inspiration to all as she courageously battled cancer and was loved by her classmates, friends and family,” Superintendent Dr. Anne Smith said. “Morgan’s positive spirit is missed in our school community.”
The community also came together to host a surprise fireworks show for Morgan in March in the field behind their home on Alvah’s Lane. One day the West family woke up to nearly 200 balloons outside. Another day horses roamed their front yard for Morgan and her siblings to enjoy.
“It makes an unbearable situation mildly bearable,” Mr. West said of the community support. “We just want everyone to know how much it means to us.”
Throughout Morgan’s battle with cancer, the Wests continuously fundraised for St. Jude Children’s Research Hospital, where Morgan was treated. The family hopes to continue raising funds for the hospital, whose doctors and nurses they consider a second family.
Those interested in donating in Morgan’s memory can do so through St. Jude’s website, stjude.org.
Morgan also gave back by donating tumor tissue for DIPG research during her biopsy last September.
“We hope that this tissue makes some kind of difference in helping find a cure so no other child or family ever have to endure this pain,” her parents said in an email. “Morgan has always been different so maybe her tumor tissue donation will help find answers. We find comfort in knowing that she may help in finding a cure one day.”
Her parents credited Morgan with teaching them more in nine years than they ever could have taught her. Although they miss their daughter, they said they’re reminded of her daily and are inspired by the legacy she left behind.
The Helping Hands 4 Morgan Facebook page has been flooded with hundreds of likes, shares and messages of support throughout Morgan’s battle and especially after her passing. Ms. West said families who had children diagnosed with DIPG began following Morgan’s journey, seeing her success as a “beacon of hope.”
Additionally, friends and strangers alike have left comments detailing how Morgan has inspired them in their own lives.
“It’s amazing for me to look back and see what a 9-year-old little girl did for everyone,” Mr. West said.
“She touched a lot of people and inspired a lot of people and we couldn’t be more proud of her,” his wife echoed. “She was amazing. She was always our bright shining star.”