Amelia: A Comets Champion

by Darla Owens

Feb 4, 2016

The Save of the Day Foundation is proud to help children facing life-threatening illnesses. The Foundation learned of four-year-old Amelia’s story and were honored to help her and her family. Below is the story of our Comet’s Champion and “keeping everything yellow.”

“I was waiting with Amelia in the room, when the doctor came in white as a ghost and said, ‘Mom you need to come with me.’”

It all began the second week of August, when four-year-old Amelia woke up in the middle of the night to go to the bathroom. Instead of going through the open door, she hit the wall. She was screaming, clawing at her head, and threw up.

The next day, however, Amelia appeared completely normal. Her parents worried that it was a possible concussion, but the pediatrician didn’t think so. The next, week Amelia’s parents noticed her squinting with her left eye, which later progressed to her left eye beginning to wander.

“Everything that had went on over the past week kept bothering me, and I began to worry they were related. Everyone told me not to take her to the ER because she was acting fine. I told my husband that I thought she did have a concussion, or something else serious,” Amelia’s mother, Chantelle, explained.

On a Saturday, Chantelle proceeded to follow her instincts and took Amelia to the ER. Once in the hospital, Amelia’s balance also seemed off, but the doctor evaluated and said she was completely normal and the only way they could tell any further injuries was to do a CT, a procedure they don’t typically recommend for small children.

But for peace of mind, Chantelle insisted. When the doctor came back white as a ghost, he showed Chantelle the results. Amelia didn’t have a concussion – but instead, a round, white image appeared on her head in the scan. It was a brain tumor, and Amelia needed to be rushed to Upstate Golisano Children’s Hospital.

“I had left my husband at home with our six-week-old baby and two-year-old daughter. I had no idea any of this would happen, so I called my mother-in-law and she rushed over to take care of my kids while my husband rushed over left for Oneida to follow us to Syracuse,” Chantelle described.

The next few days were a whirlwind of procedures to help alleviate the pressure on Amelia’s brain from the tumor. The reason she was squinting was because she was seeing double the entire time; Amelia thought it was fun so Amelia she never mentioned it. On Wednesday, she had surgery to eliminate the tumor. It took about six hours, and the incision went from the bottom of her ear to the top of her head.

“The next morning, the doctors and neurosurgeon could not believe how great she was doing. Her eyes seemed to go back to normal immediately, which was a huge relief. She also didn’t want any pain medication for 24 hours after the surgery. The nurses said that’s normal with kids, as they’re resilient.”

The family went home on Saturday with Amelia, who stayed primarily on the couch quite a bit and needing assistance walking for a couple of weeks. The doctors were amazed that she didn’t have muscle weakness, as she continued to gain strength and her head continued to heal.

“She asks about her scar sometimes, and I tell her it’s her warrior mark.”

Amelia’s official diagnosis was Neurofibromatosis type 2, a tumor that occurs on the nerves leading to the inner ear. Instead of being benign as they originally thought, the pathology report came back as stage III meningioma, meaning the tumor was cancerous and could spread very quickly. Meningioma is usually found in women ages 30-70, so the pathology report was sent out for further verification. The diagnosis was confirmed, making Amelia one of the only kids, if not the only kid, to have this type of tumor.

“There was no textbook case to go by, so they weren’t sure what type of treatment to do. Our first conversation included proton bean radiation. We heard yes and no on radiation, but both oncology and radiation oncology said there was no wrong or right answer.”

Over the next couple of months, Amelia had several MRIs and appointments in which they discovered four spinal tumors. The doctors were concerned that the spinal tumors were drop down cancer tumors from the brain. The family decided to do a six-week radiation treatment in Boston until they received a call from the head of neurofibromatosis.

The doctor recommended not to do radiation treatments, as they would do more damage than good at that point. She also believed that the four spinal tumors where neurofibromatosis tumors, and should be monitored instead of operated on.

“We were in shock, obviously. We were all packed for leaving out home for six weeks plus. So the plan now is to do scans of the brain and spine every three months. If another brain tumor is found, Amelia will need brain surgery and then be sent for the proton beam radiation. If her spinal tumors grow anymore, we might eventually need to remove them and biopsy them. Everything is just a day to day basis. Right now, Amelia is doing great, loving preschool, and being a four-year-old girl. We just pray she can remain stable for the rest of her life,” explained Chantelle.

Recognizing not only the stress of medical treatments, but the financial cost that it takes to provide medical care, the Save of the Day Foundation gave the family a monetary donation to help alleviate their financial costs. “When a child is affected by a life-threatening illness like Amelia, the last thing we want a family to worry about is how they’re going to afford the medical costs. We were happy to help Amelia’s family and relieve any financial stress so they could concentrate on just getting Amelia better. Amelia is a champion in all of her fights, and we’re proud to be able to help her,” said Darla Owens, Director of the Save of the Day Foundation.

And as brave as Amelia was throughout the entire process, she is now severely traumatized by the medical aspect of her life. She’s scared of MRIs, gas masks, and needles, and has panic attacks on doctor appointment days. With this in mind, the family along with many friends, created Amelia’s Army. Everyone wears yellow in honor of Amelia’s favorite color to support her on her toughest days.

“Every time we have an appointment, we wear yellow. It brightens up Amelia and she’ll say ‘You’re wearing yellow for me? Yellow is my favorite color!’ I’ll never look at yellow the same way now. When Amelia was diagnosed, the neurosurgeon said to us ‘Do you see all this yellow surrounding her? You need to keep everything yellow. It’s amazing what positivity will do for us physically.’”

“And that’s what we’ve tried to do: ‘keep it yellow.’ We live day by day and never take anything for granted.”