BRILLION, Wis. — Anticipation and anxiousness were in a pitched battle for Amie Romenesko’s attention.
It was the day before Christmas Eve, so last-minute holiday prep was in full swing. But she was uneasy about her 3-year-old daughter Quinn, who had been suffering from a string of headaches since Thanksgiving. Something was amiss.
“As a mom, you know,” she said.
On this day, Quinn’s headache was especially taxing.
“She was having an episode where it was so intense, you couldn’t console her, you couldn’t get her to calm down,” Romenesko said. “She would just lay there and scream and grab her head and say, ‘Mom, my head hurts.’”
They left their Stockbridge home and went to the Theda Clark Medical Center emergency room in Neenah.
The doctor ordered a CT scan and came back to the room shortly thereafter.
“You don’t ever anticipate the news you’re about to get,” said Romenesko. “He looked at me and said, ‘We have transport for her. We’re transporting her down to Children’s (Hospital) in Milwaukee. She has a growth on her brain.’
“I’m by myself, and I am so grateful for the nurse that was there. I just looked at her. I’m like, ‘Keep it together Amie.’ Because I didn’t want to freak Quinn out. And I just looked at her and I’m like, ‘Can I please hug you?’ And I just I sat there for a good two minutes just hugging her.”
When they arrived at Children’s Hospital, they performed an MRI. It confirmed Quinn had a craniopharyngioma, a rare, noncancerous brain tumor. It usually forms near the pituitary gland and the hypothalamus. The tumor is slow-growing and does not spread to the other parts of the brain or body.
However, it may grow and press on nearby parts of the brain, including the pituitary gland, hypothalamus, optic chiasm, optic nerves, and fluid-filled spaces in the brain and comes with a laundry list of concerns.
“As a parent, you start doing research,” Romenesko said.
Romenesko joined a pediatric craniopharyngioma Facebook group. And that’s when the phone call came.
It was from a mother, sitting on an airport runway in Chicago, on her way to St. Jude for a follow-up appointment with her son. He, too, had a craniopharyngioma. She told Romenesko she needed to get in touch with Dr. Thomas Merchant from St. Jude Hospital.
“Kids from all over the world come to see him for this specific type of tumor,” Romenesko said the mom told her.
“OK, so how do I get a referral here, you know?” Romenesko said. She knew of only one person who could make a referral as fast as humanly possible.
“I self-referred her,” she said.
The following Monday, Dr. Merchant called. He told her they would take her on as a case story. On Thursday, they headed down to Memphis, Tenn., for the next four months.
During that time, Romenesko said, they sedated Quinn 60 times, did 32 MRIs, 30 radiation treatments and who knows how many needle sticks.
“Honestly, she’s my hero,” Romenesko said of Quinn. “There’s no way as an adult … After her craniotomy, within two days, she was up and she’s sitting on the carpet in the Ronald McDonald House playing with toys. She couldn’t see. Her eyes were swollen shut. And I mean, she’s just like, ‘Mom, why do they have these on my eyes?’ She was thinking she had patches on her eyes. She didn’t understand. And … you couldn’t stop her. It was incredible.”
Follow-up treatments have tapered from every six weeks to every six months. After a year, the tumor had shrunk in half. But while her last scan showed no growth, it hasn’t shrunk any further.
“So the prognosis is … I don’t like to say the prognosis is great,” said Romenesko, who said Quinn will always be a patient of St. Jude. “But at the same time, I don’t like to say that it’s bad, because I don’t know. We don’t know. It’s a very hit and miss circumstance, I guess.”
The Romeneskos try to provide Quinn as normal a life as possible. She’s an active 5-year-old now and is going to school.
“I don’t ever want her to feel different,” Romenesko said. “I made it clear to school to — I understand you have to treat her a little different — but I don’t want you to treat her differently in the respect of discipline or if she …
“There’s that fine line of working with her medical conditions and what she needs, but then, she’s a normal kid. I don’t ever want to feel like she’s being treated differently just because of what she has. I feel if we go down that avenue, it kind of gets imbedded in her head. They’re different. And I don’t ever want her to feel that way right now.”
But for the Romenesko family, things are forever different.
“Never will life be the same as it was the day before Christmas Eve,” Romenesko said. “It is not carefree. Quinn, with what she has, she can’t control her emotions. And so, it’s either a great day, or it’s a day where you have to just take a breath constantly and remind yourself, ‘Yes, today’s a struggle. But we’ll get through it.
“And you can’t just pick up and be, ‘Hey, we’re going to go do this for a week.’ Because she has medications. You have to make sure those people understand how to give them to her. She has a lot of doctor’s appointments, lab draws. So, it’s just learning a new normal. And we’re still learning that new normal.”
Stockbridge is a small community but, as the Romeneskos have discovered, has a big heart. As do the communities surrounding it. This August, Wrightstown will again host the third “Kickin’ It With The Cows” fundraiser. Cathy Spiers, who runs the Shiloh Dairy farm in Brillion, runs the event. All proceeds go to St. Jude. To date, they have raised $65,000 and hope to surpass the $100,000 mark this year.
“It’s an opportunity for the community to think outside themselves,” Spiers said. “To be charitable, to be gracious, to be generous and come together and, you know, we’re better and bigger and stronger together.
“This is where the rubber hits the road. Right here is a family that needed desperately needed for St. Jude to help save their daughter.”
Romenesko understands that’s exactly what they did.
“I shouldn’t say 100%, but I am 99% sure that where we are now versus where we could have been if we didn’t seek St. Jude for treatment would have been catastrophically different,” she said.
“My view is St. Jude is the most incredible, beautiful, amazing place. But it’s somewhere I never want to meet you at.”
Story idea? You can reach Mike Woods at 920-246-6321 or at: michael.t.woods1@charter.com