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Philly help

Rare eye cancer strikes HVA teacher’s two tiny children; had to quit jobs

June 5, 2024 by Alan Sloan

Having to deal with the emotional shock over one child’s serious health issues is one thing — but its been a double blow for Hardin Valley Academy English teacher Alexis Kneller and her husband, Timothy Kneller: their two small children, under age 3, both are suffering from bilateral retinoblastoma, a rare and aggressive form of eye cancer.

“Having just one child with medical issues would be difficult enough, but this family is having to grapple with the effects of two kids battling for their health,” said Lana Schupbach, a public relations and media consultant who, as founder of Autumn Lane Productions, is trying to help the Knellers financially through her client, AngeLink.

To provide the necessary care for Thomas, 2, and Vivienne, 11 months, the Knellers had to quit their jobs and move to Philadelphia, where Wills Eye Hospital is believed to be one of the nation’s foremost centers for treating this serious affliction.

“They require chemotherapy every three weeks,” which is expected to last until at least November, Schupbach said.

“They get infusions for somewhere between four and six hours,” Timothy said. “It’s really only this last cycle that they’ve both been unwilling to eat or drink and experiencing nausea. And so we’ve been blessed to have minimal side effects. But it does catch up with their little bodies.”

Though describing the news about their small children as a “punch the stomach, then a kick in the stomach,” he added, “I didn’t really have time for it to break me down mentally.

“Alexis and I had to make some really quick decisions” to get both children “up to Pennsylvania to start chemotherapy at the same time.

“Otherwise, we’d be in the hospital with two separate chemo cycles, and that would be pretty intrusive.”

First signs

Looking back, “It was probably when she was just 2 months old, we noticed her right eye was what we would describe as lazy,” Timothy said about Vivienne in late summer.

“And it’s not uncommon for babies to have issues with their eyes crossing and things,” he added. “And so, in mentioning that to her pediatrician, they told us, actually the same thing that they told us with her older brother when he was 2 months old, that it would likely correct itself and that it wasn’t a big deal. We just needed to wait for a little bit, and that it would likely correct itself.”

However, “after her four month appointment, her eyes had not gotten any better,” said Timothy, a chimney sweeper. “And so we set up a meeting with a pediatric ophthalmologist in Knoxville, and it took a couple months for him to see her. And when he saw her, it was Jan. 9 and she was 6 months old.

“And he basically took one look at her and said that the abnormalities in the backs of her eyes were something that he was not qualified to properly diagnose,” he added. “So he set us up an appointment with a doctor in Nashville, and this doctor in Nashville took one look at her and diagnosed her with bilateral retinalblastoma.

“The doctor there in Nashville let us know that there are somewhere (around) 203 cases a year of retinoblastoma in the country. And then, generally, 25 percent of those have bilateral retinoblastoma in both eyes.”

Vivienne has it in both eyes.

“The doctor in Nashville also asked if she had any siblings,” Timothy said.

Exactly a week after Vivienne’s diagnosis, Thomas also was diagnosed with the same cancer — also in both eyes.

However, Vivienne’s case was worse. “‘Time is of the essence with Vivienne, and you need to get her treated immediately,’” Timothy recalled being told. “At that point, Alexis and I cleared our calendars.

“It’s basically very, very rare that both of our kids would have this cancer,” he added.

Vivienne and Thomas were checked into Wills Eye Hospital within a few days after their diagnosis.

“We probably wouldn’t have caught Thomas’s if it hadn’t been for Vivienne’s being much more advanced,” Timothy said.

Outlook

While Vivienne “can see fairly well out of her left eye, her right eye is the eye that we’re going to be fighting for” in terms of fighting off the caner, serious vision impairment or even permanent blindness, Timothy said.

However, “The prognosis is pretty bright at this point,” the father said, “because we were able to get to it quick enough and start treating it at Wills Eye Hospital. … It’s really a miracle. We feel like God’s definitely been pushing us through this entire ordeal.

“You know, he seems to be able to see just fine,” Timothy added about Thomas.

While Timothy said neither of the children are experiencing ongoing pain, “It’s just very specific pain from the medicines that they’re on. One of the medicines that they’re on causes jaw pain and bone pain.

“It’s hard for a 2-and-a-half year old to explain that his bones are hurting,” he added. “We just notice things like them not wanting to walk or not wanting to crawl or wanting to be held for comfort.”

Dr. Shields

One note of family comfort and confidence is the lead physician treating their children. About Dr. Carol Shields, “she’s absolutely the world’s leading authority on retinoblastoma,” Timothy said. “She’s been treating it for over 40 years.”

Final thoughts

About sharing their story, “We kind of just felt up against a wall; like, we had to just get our story out there,” Timothy said. “And if we can raise awareness, since not a lot of other families are raising awareness, then, you know, maybe this is what we’re supposed to do.

“We were just getting used to having two children and having a small baby in the house, and we were so happy,” he added. “And then you get the news that they have cancer, and I don’t know how I would describe the feeling: absolutely overwhelming.”

“From what I can glean, they have remained faithful, calm, poised and grateful for the positive updates and the support they’re receiving from loved ones and strangers, alike,” Schupbach said. “They are very mindful of the fact that every little bit of help goes a long way toward allowing them to prioritize their kids’ health.”

To help the Knellers financially, visit the AngeLink website at angelink.com