Little Cutchogue Girl With Inoperable Brain Tumor Defies Odds

Morgan West, 4, of Cutchogue, is a little girl who loves pre-K and baby dolls, ballet and tap dance classes and her big sister Hunter.

But Morgan's short life has been filled with challenges, as she battles an inoperable brain tumor and continues to defy the odds.

Morgan's mom, Nikki West, said she and her husband Adam first noticed something was wrong when their daughter was two-and-a-half years old.

"It all happened extremely quickly. We noticed her right eye would get crossed very briefly," West said. A few days later, West said they noticed that their daughter's eyes appeared noticeably crossed.

"My worst fear was that she needed glasses. I cried, because she was only two and a half," she said.

But soon West was faced with every parent's worst nightmare. After taking her for an MRI, the Wests learned that their beautiful little girl had a brain tumor.

Morgan was diagnosed with diffuse intrinsic pontine glioma, or DIPG. Due to the tumor’s location on the brainstem, it is inoperable — and is currently considered to be incurable.

The Wests turned to the St. Jude Children's Research Hospital, located in Memphis, TN. Founded more than 50 years ago, the facility treats childhood cancers and other life-threatening illnesses.

Actress Marlo Thomas is the National Outreach Director for the hospital, which was founded by her father, Danny Thomas, in 1962.

In 2004, Marlo, along with her brother and sister, created the Thanks and Giving Campaign to build awareness and raise funds for St. Jude during the holiday season.

On Thursday, Morgan and her family will travel to New York for an event hosted by St. Jude Children's Research Hospital and Brooks Brothers, Brooks Brothers Winter Wonderland, from 5 to 8 p.m. at 346 Madison Avenue.

Funds raised from the Thanks and Giving Campaign help to defray costs at St. Jude, where all children are treated for free.

At St. Jude, Morgan has undergone a two-year clinical trial for treatment, including six weeks of radiation therapy, as well as an oral clinical drug. Her latest MRI shows that the tumor is stable.

“She is among an extremely small percentage of children to be doing so well at this stage of her diagnosis,” her mother said.

When they heard the diagnosis, the Wests' world changed forever.

"It was our worst nightmare. It's something you just never think is going to happen to you. It just throws you for a loop," West said.

Doctors told the Wests that they would probably only have 18 months with their daughter. 

"Two years and three months later, she's going strong," West said. "She's proven everyone wrong. She's our little miracle."

St. Jude has made the unbearable a smooth journey for the family. Never have they been asked about health insurance, or had to worry about mounting medical bills, West said.

"As a parent, you'd sell your house, yourself, to help your kid, but at St. Jude they never ask you about insurance. They ask about Morgan — about what our family needs."

West stayed at St. Jude with Morgan while her husband went back home to care for Hunter, 7. "Once we got there, we never looked back," West said. "Everyone at St. Jude is so phenomenal, so kind and caring. That's such a big part of it — it's not just the top-of-the-line health care, but it's all the little things. We've never had a phone call about health insurance. To not have to worry about that when your daughter is going through the worst thing in the world is such a relief. They care for Morgan, and they care for our whole family."

For her part, Morgan is a fighter. "She has never complained," West said. "This kid is the world's best traveler."

After hearing the worst, West said she and her husband cried for two weeks. "I never thought I would stop," she said.

But at St. Jude, the West family met other children with cancer. "It's inspirational. There are other patients and families, and kids running around laughing, having fun and acting normally. It makes you realize that life has to go on. We can't fall in a hole or not get out of our beds. If Morgan can get out of bed and play with a smile on her face, then we have to act as normally as possible."

Out of the darkness, the West family has learned to treasure the light of precious time. "We have to make the best out of every day because we never know what's going to happen. We don't want to look back and regret anything. This opens your eyes to what's important in life," West said.

From her daughter, West has learned invaluable life lessons. "She's taught me to be strong, to appreciate everything in life, and to be more giving," she said. "She's made me a stronger person and a better mom. Just watching her go through this, she has inspired me to be a better person."

Being part of the St. Jude family has made West and her family want to help others; they have participated in the St. Jude Give Thanks Walk for the past two years.

This year, with an outpouring of support from the North Fork community, they raised over $15,000.

And yet, despite the strides, the tumor remains. "As a parent, you feel that it's a ticking time bomb. We don't know what's going to happen. She's doing well now, and we're so thrilled, but we live in fear on a daily basis that she will wake up and take a turn for the worse. We never know."

Because she has defied expectations, doctors do not know what to tell the Wests about a timeline. "They can't tell us if she has six months, six years, or 16 years," West said.

And so they treasure the special times, including the Christmas holidays. "It means everything," West said. "We never thought we'd see her go to preschool. That first Christmas after she was diagnosed, we celebrated like it would be the last, and now, we've gotten two more. She's a walking miracle."

Through it all the North Fork community has opened their hearts to help the West family, she said.

"I can't even put into words how good this community has been," she said. "I was born and raised out here and I love it and wanted to raise my kids here, but until now, I didn't realize how truly special a place it is." 

This holiday season, the West family has much to be thankful for. And to the St. Jude family, West said there is a single message: "A big, giant thank you, from the bottom of my heart. We love you."