Aubryn Neubert: Waiting for the magic word, remission
Monday, May 15, 2006
Around Thanksgiving time, 18-month-old Aubryn Neubert was growing lethargic. The once super-energetic toddler no longer could muster enough strength for her kiddie gymnastics classes or swim lessons.
“When she fell asleep on my shoulder in the pool, the mommy-daddy radar went off, saying ‘something’s wrong, here,’” said Amanda Neubert, Aubryn’s mother.
Amanda scheduled a visit with Aubryn’s pediatrician, instructing the secretary to pen “intuition” as the reason for appointment. She and her husband, Hank, bundled up Aubryn warm and cozy and headed off to Northeast Pediatrics in Lansing, N.Y., where Audrey DeSilva, M.D. thought it might be a case of pneumonia. To be sure, she would run some diagnostic chest X-rays.
The staff was super-efficient.They really became members of our team—Aubryn’s team.
“At that point Hank, out of the clear blue sky, turned to me and said, ‘what if she has cancer?’” Amanda was shocked. “I could have killed him for saying that just then, but sure enough, he was right.”
The X-rays came back displaying lesions on Aubryn’s little lungs—lesions that were likely malignant. To be sure, DeSilva immediately referred the family to Golisano Children’s Hospital at Strong, where the staff cleared their calendars and made room for Aubryn.
It was still only 1 p.m. when they arrived in Rochester. There, the team concluded that Aubryn had a Wilm’s tumor covering 75 percent of her kidney. Immediately, they began making plans to fight it.
“The staff was super-efficient,” Amanda said. “They really became members of our team—Aubryn’s team.”
David N. Korones, M.D., Aubryn’s pediatric oncologist, became especially close to the family. Because the tumor was too large to remove immediately, a catheter was installed into her chest to spare her all the pricking as she underwent chemotherapy. Once the tumor had shrunk enough, they would then aim for surgery—Robert Mevorach, M.D., would spend six and a half hours performing a radical nephrectomy, or the removal of her entire tumor and kidney. Afterwards, Aubryn would follow up with continued weekly chemotherapy treatments, along with radiation in early February.
The staff was realistic and optimistic at the same time; they were hopeful, but refused to make fragile promises that might be shattered. The family appreciated this sincerity.
“Everything came with instructions, and with support,” Amanda said. “No parent should have to grapple with the mortality of their own child, because in a parent’s mind, they live forever. They’re supposed to. Golisano Children’s Hospital knew how tender this idea was for us, and they helped us to look at it, to understand it better.”
The couple especially appreciated Korones. “We’d walk through fire for him,” the couple said.
The Neuberts were afforded a room at the Ronald McDonald ‘House within the Hospital’—a respite that they say they “used mostly to shower and cry.”
That’s because the Neuberts have a strict no-tears policy when they are with their little girl; they believe that Aubryn really feeds off their optimism.
“Surrounded by good science, good feeling, and good doctors—that’s the reason that, now, she’s doing okay,” Amanda said.
Since surgery, Aubryn’s has been able to live home, supported by regular phone check-ins. She is in the middle of her second chemotherapy regimen, and her parents hope that come her second birthday in late July, treatments will be finished and they’ll hear the magic word: “remission.”
Aubryn is an incredible little kid, her parents say. “She has no self-pity, she just moves on. She’s ten times stronger than we are and loves to laugh.”
Miracle Weekend festivities
Cheering on kids like Aubryn is just part of the celebration planned year’s Miracle Weekend, to be held Friday and Saturday, June 2 and 3. The weekend includes two time-honored fund-raising events to support the hospital — the 23rd Annual CMN telethon and 10th Annual Stroll for Strong Kids — plus a few mix-ins that will make this year’s festivities better than ever.
Children’s Miracle Network Telethon
This year’s telethon, produced by 10NBC and broadcast from the Strong Memorial Hospital Lobby from on Friday, June 2, and on Saturday, June 3, will bring inspirational stories from Golisano Children’s Hospital’s five Miracle Kids. Among them you’ll hear one newborn’s fight to survive 13 shunt surgeries, a teenager whose arm was successfully reattached, and a young boy’s battle to survive a house explosion.
During the event, you can help the hospital by phoning in gifts at (585) 241-KIDS.
Stroll for Strong Kids
This year’s 10th Annual Stroll for Strong Kids offers plenty of family fun, including clowns, inflatable toys, raffles, door prizes, free lunch courtesy of Subway and a concert by Gary the Happy Pirate.
What’s more — if you can keep a secret – the hospital is throwing a surprise party for loveable mascot, Sandy Strong, during the scenic 2-mile walk through GeneseeValley Park in Rochester. Expect more than 26 sheet cakes and one super-chorus of “Happy Birthday” at the starting line.
Festivities start with registration at on Saturday, June 3. For more information on how you or a team of friends can be involved, please call (585) 273-5948 or visit http://www.gchas.org/events/stroll/index1.cfm.