Family Of Little Girl Battling Inoperable Brain Tumor Receives 'Devastating' News; Fundraiser Planned

CUTCHOGUE, NY — Morgan West is an 8-year-old from Cutchogue who has bravely battled an inoperable brain stem tumor for six years.

Despite slim odds, Morgan's survival been an inspiration to many and her bright smile a symbol of hope. Recently, though, circumstances grew darker.

"On a routine visit for scans in August, we were given the devastating news that Morgan’s tumor was active and growing," her mother Nikki West said. "We had not noticed any changes in Morgan that would have led us to believe that anything had changed. We were in complete shock and disbelief. She had been stable for so long."

When she was two, Morgan was diagnosed with Diffuse Intrinsic Pontine Glioma, also known as DIPG. It is a highly aggressive and inoperable tumor that has no cure and is ultimately terminal. The average life expectancy for those who have DIPG is about a year after diagnosis.

A patient at St. Jude's Children's Research Hospital, Morgan has been embraced by the North Fork community, members of which check in on her progress with messages on the Helping Hands 4 Morgan Facebook page and website.

When Morgan was diagnosed six years ago, Nikki West said, biopsies were not performed on the tumors of DIPG patients. Doctors have not traditionally performed biopsies for two reasons: a high risk of serious neurological damage and the minimal influence of biopsy results on treatment. West said.

However, she added, doctors in the United States are now performing biopsies only on “atypical” brainstem tumors like Morgan's.

"On September 6, Morgan had a biopsy in order to confirm whether or not her tumor was, in fact, a high grade DIPG," West said. "There was a small chance, since she had defied the odds all these years, that it was low grade. Unfortunately, almost six years to the day of her original diagnosis, we were told that it was definitely a high-grade DIPG tumor, and for the second time in our lives we were told that our daughter was not going to survive."

After meeting with doctors, Morgan's family decided for the second time to proceed with radiation treatments.

Kait's Angels Yard Sale for Morgan Saturday

The immensely supportive North Fork community had already planned a fundraiser for Morgan, even before the latest news.

The annual Kait's Angels Community Yard Sale is scheduled to take place on Saturday, Sept. 30 from 8 a.m. to 2 p.m. at the Doorhy home, located at 1125 Ole Jule Lane in Mattituck. Donations can be dropped off on Friday, Sept. 29 from 4 p.m. to 6 p.m. at the Doorhy home. All proceeds will benefit Morgan.

"As a community, let's come together once again and make this Kait's Angels Yard Sale a huge success for Morgan, a child in need," Kait's Angels said.

Its annual yard sale is only one of many ways in which Kait's Angels gives back. The not-for-profit organization does good works in memory of Kaitlyn Doorhy, who died in 2014 at age 20 while away at college. She left behind broken hearts and a strong resolve to keep her spirit alive forever.

Every year, proceeds from the yard sale benefit a different member of the community who needs a helping hand.

"This is every parent's worst nightmare and we had to experience it not just once, but twice"

Despite the grim news, Morgan's family is facing the diagnosis with hope, love and faith — inspired by their little girl's triumph over adversity every day of her young life.

"Morgan’s strength, bravery and spirit is what keeps us going," West said.

Regardless of the pain, she added, "Life has to go on when you have three kids. It would not be fair for us to completely shut down on them. We have to act 'normal,' as best we can. They feed off of us; if we are sad and upset, then they are sad and upset, and there is no way that we want to do that to them."

Asked how they shared the news with Morgan, West said, "While she doesn’t know the extent of what all this means, she knows that her tumor is growing and that is not a good thing. We told her that it’s been sleeping all these years and that it is now awake and we have to put it back to bed. She knows that she has to stay strong and fight. She is our tough little warrior. If anyone can do this, she can. This kid can do absolutely anything when she sets her mind to it."

When Morgan was only two-and-a-half, West said, she hated the taste of her chemo so much that she learned how to swallow pills so she wouldn’t have to take the powdered version of it in food anymore. "St. Jude has never had a patient that young to do this," she said.

Despite the staggering diagnosis, Morgan's family holds tightly to its faith and draws strength from Morgan's indomitable spirit.

"This is every parent's worst nightmare, and we had to experience it not only once, but twice," West said. "Morgan defied all the odds once. We have to believe that she can do it again. Like any parent, we will never ever give up."

In the midst of tears, laughter and hope resonate. All three of the West kids help keep their parents going, West said.

"They make us smile and laugh every day. In the comfort of her own home, Morgan is one of the funniest kids you will ever meet. She has us in stitches most days. She definitely has her dad’s sense of humor. We tell her that her three-year- old brother, Wyatt, is now giving her a run for her money, though. Morgan tells us every day not to worry and that she is going to be okay."

Her daughter, West said, sets a shining example of how to move forward.

"We can’t stop living our lives. News like this only reinforces that we have to live each and every day to the fullest, because we never know what tomorrow is going to bring."

Next up for Morgan is radiation. It is part of the standard course of treatment for DIPG patients, West said, and the only form that has proven benefits.

Morgan already went through 30 days of radiation treatment back in October, 2011.

"A second round of radiation is much more dangerous, so the dosage is about half of what she got the first time around and will therefore only be 10 days of radiation therapy this time," West said. "We will go back to St. Jude about a month after radiation is complete for scans and check-up. At that point in time we will discuss possibly trying a clinical drug."

West said there are fewer options with clinical studies for recurring tumors and there have "really been no advancements."

During the past 30 years, DIPG patients have participated in more than 250 clinical trials, but no study has shown an increase in the likelihood of survival or the median length of survival, West said.

"We will head back to St. Jude to start her 10-day radiation treatment on October 2, which is also almost six years to the date of her first round of treatment."

Events such as the Kait's Angels yard sale help keep the flames of hope ignited, West said.

"This community has been beyond supportive for the last six years," she said. "Every post I have made on her Helping Hands 4 Morgan Facebook page, whether good or bad, has garnered nothing but positive responses full of good wishes, hope and love. Family, friends, community members, businesses and even complete strangers have reached out to us. It has been overwhelming, the care and concern this community has for our entire family."

She added, "Kait’s Angels is such a wonderful organization. It is truly inspiring to see all they do for those in need and we are so grateful for what they are doing for us."

And to all the hearts that have opened with love for their girl, West has a message: "We would like to thank each and every person who has been following and supporting Morgan and our family all these years. You are all truly incredible, and we are so lucky to live in this extraordinary community."

Photo courtesy of West family.