Early this September, Adam and Nikki West of Cutchogue took their otherwise healthy two-and-a-half-year-old daughter, Morgan, to her pediatrician after noticing that occasionally her right eye seemed to wander slightly.
“The eye-crossing was not anything major,” Mr. West said. “It was so subtle and slight that some people told us we were overreacting actually and that it was nothing.”
But it was something, and the pediatrician, Dr. Jennifer Shaer of Peconic Pediatrics in Riverhead, referred them to an ophthalmologist.
“Our biggest concern was that she’d need glasses,” Mr. West said.
The ophthalmologist prompted the family to take Morgan for an MRI at Southampton Hospital in search of a possible tumor or something else that might be putting pressure on the eye. The test, done on a Friday, showed what appeared to be a tumor, and the family was advised to see a specialist. They traveled immediately from Southampton to the Steven and Alexandra Cohen Children’s Medical Center at Long Island Jewish Medical Center in New Hyde Park.
On Monday, Sept. 19, their worst fears were realized when doctors said there was a malignant glioma in the middle area of Morgan’s brain stem, a diagnosis that carries a survival rate of approximately two years. According to the American Brain Tumor Association, the most common symptoms of a brain stem glioma are eye movement abnormalities and double vision. Between 10 and 20 percent of brain tumors in children are brain stem gliomas, the association says, and most affect children ages 5 to 10 years, making Morgan’s a rare case.
Mr. West described that night as “sheer chaos.” There was, he said, “a lot of why is this happening? A lot of how can she have a tumor? She’s so healthy looking … A lot of what-ifs, and certainly no sleep.”
He’d put his head down and then wake up and instantly start crying. “I estimate that Nikki and I combined slept about a half hour,” he said.
The parents spent the next two weeks deciding on their next step, which Morgan’s diagnosis made it all the more difficult to do.
“The survival rate is about one to two years,” Mr. West said, and only about two percent of patients live past that time. He and Nikki decided they wanted to maximize Morgan’s quality of life. They had the option to stay local but chose instead to seek treatment at Saint Jude Children’s Research Hospital in Memphis, Tenn. That facility offered a clinical trial of a drug Morgan is currently taking.
The drug “has the potential to possibly shrink the tumor,” Mr. West said.
While Mr. West stayed home with Morgan’s sister, Hunter, 5, Nikki West accompanied Morgan for six weeks of radiation therapy at St. Jude. That treatment is now complete.
Mother and daughter returned home Tuesday, in time for a fundraiser this Sunday, Dec. 11, sponsored by Erin Dickerson, Sarah Sirico, Sara Tirelli and Marianne Caskran at Raphael winery.
While still in Tennessee, Ms. West made updates to a Facebook support group, created in early October and maintained by Sarah Sirico of Southold, called “Helping hands 4 Morgan.”
Her Nov. 14 post talked about getting Morgan to take her medication.
“We were told to crush 3 small pills and put them into applesauce or apple juice to give to her,” Ms. West posted. “She HATED it & immediately learned to clamp her teeth shut & dribble a lot of it out. Taking these awful pills quickly became the worst part of our day! We got desperate and tried hiding it in other food but it didn’t take long before she caught on to my ways.”
Ms. West said she explained to Morgan that she wouldn’t have to taste the medicine if she could learn to swallow pills, which she did “within an hour,” according to the post.
While they were in Tennessee, Nikki and Morgan West’s medical, food and travel expenses were covered by St. Jude.
“I honestly don’t know where we’d be without it,” Mr. West said of the hospital. St. Jude runs strictly on donations, and Mr. West says he would like to do fundraising runs and walks to help the hospital.
The West’s medical insurance covers some — but not all — local medical and home health care expenses.
What: 50/50 raffle, Chinese auction, kids’ games, food and beverages, and live music provided by Tim and The Space Cadets
When: Sunday, Dec. 11, 1-5 p.m.
39390 Main Road, Peconic, N.Y.
Cost: $30/person ages 12 and up
Tickets can be purchased at Riverhead Building Supply in Greenport, Southold Fish Market and Fitness Advantage in Southold and Karen’s Deli in Cutchogue.
Donations to the family can be made to:
Adam & Nikki West c/o Marianne Caskran
8150 Skunk Lane, Cutchogue, NY 11935
More information about St. Jude Children’s Research Hospital can be found at stjude.org.