Maine-born infant’s fight for life against rare eye cancer strains family on both coasts

A rare form of infant cancer has claimed the left eye of Londyn Elise Porter, who at age seven months is fighting for survival after her cancer spread from her left to right eye and into her brain. Born in Maine and now living with her mother and grandmother in California, the child's medical ordeal has dominated the thoughts and prayers of family and friends on both coasts.
Courtesy photo
A rare form of infant cancer has claimed the left eye of Londyn Elise Porter, who at age seven months is fighting for survival after her cancer spread from her left to right eye and into her brain. Born in Maine and now living with her mother and grandmother in California, the child's medical ordeal has dominated the thoughts and prayers of family and friends on both coasts.
Posted April 06, 2013, at 2:32 p.m.
Last modified April 07, 2013, at 7:43 p.m.
Seven-month-old Londyn Elise Porter was recently diagnosed with a rare form of eye cancer, which has claimed her left eye and has spread into her right eye and into her brain. Family in Washington County and in California say they are &quotwaiting on a miracle" in hopes that the infant survives.
Courtesy photo
Seven-month-old Londyn Elise Porter was recently diagnosed with a rare form of eye cancer, which has claimed her left eye and has spread into her right eye and into her brain. Family in Washington County and in California say they are "waiting on a miracle" in hopes that the infant survives.

LUBEC, Maine — Linda Maker is waiting on a miracle.

So is her daughter. And so is her daughter’s daughter. And so is that daughter’s daughter, 7-month-old Londyn Elise Porter, whose young life is on the line.

Londyn was 4 months old when she was diagnosed with a rare and likely fatal form of retinoblastoma, a type of cancer that has already cost the infant one eye and has spread into her other eye. Even more distressing to Londyn’s family is that the cancer also has spread to her brain.

Maker, an educational technician at Lubec Elementary School for the past 21 years, is Londyn’s great-grandmother. Her daughter Laurie Lingley is the infant’s grandmother. Londyn’s mother is Lingley’s daughter Taiya Porter, 15, who moved from Biddeford to live with her baby and her mother in public-assisted housing two hours east of San Francisco, in Modesto, Calif.

Maker is all too aware that Londyn has little chance of survival, pointing out that hers is one of only four such cases ever diagnosed, and that none of the other three children affected survived. What’s just as distressing, she says, is the more than 3,400 miles and 51 hours of driving time that separate Maker from being able to help out in Modesto. Her daughter Lingley said in a telephone interview that everyone involved, including the baby, is exhausted from the extended family’s one-day-at-a-time existence.

“Part of what’s so hard is how it happened,” Lingley said. “Until a few months ago, we had no idea that this baby was going to be diagnosed with such a serious illness.’

After a family member noticed that Londyn’s eyes weren’t tracking light or movement normally and that she had vague facial expressions, the baby was examined by a pediatrician.

“The pediatrician looked her over and said it wasn’t anything really to worry about, that it may be signs of autism,” Maker said. “We were told to give her time for more growth.”

A few weeks later a nurse doing a home visit noticed Londyn’s left eye was protruding abnormally. That triggered an exam by a pediatric eye specialist, who discovered a large tumor behind the eye. Londyn was immediately transferred to a children’s hospital in Los Angeles, where the eye was removed the next morning and at least three other tumors were discovered behind her right eye. A brain scan showed cancer there, too, a diagnosis that, Maker said, “didn’t give us a lot of hope.”

“We wanted to come back to Maine,” Lingley said, “but we can’t take Londyn away from the medical team in San Francisco that has been working to keep her alive. It seems like we spend more time at the hospital than we do at home. We’re stuck in a hard spot.”

Meanwhile, Maker is working two jobs that keep her tied to Washington County. And even with two incomes, she doesn’t have enough disposable income to cover coast-to-coast airfare, although Maker and her sister Lynne Hatch did make one trip to California through the generosity of friends and family. Those tickets, Maker said, cost more than $1,000 each.

Maker sends her daughter what little cash she can, adding to it the loose change that appears in collection cans she has placed in Lubec-area businesses. That money is used to buy food and gasoline needed to take Londyn to her chemotherapy appointments in San Francisco.

As a side effect of that therapy, the infant has lost much of her hearing, her grandmother says, and may soon be deaf.

Lingley said her single-parent daughter, Taiya, is devoted to keeping her child as comfortable as possible.

“She is a super-responsible 15-year-old girl,” Lingley said. “I can’t put into words how wonderful she has been. She’s always right by her [Londyn’s] side and won’t leave her. Londyn has two lines into her, and Taiya does two blood draws a week, putting on a sterile mask and sterile gloves to do that and to change the dressings. She’s just a pro at it.”

None of those involved in Maine and California is looking for pity, sympathy or money as they fight the good fight on Londyn’s behalf, Maker said.

“What we do want is for people to know that these childhood eye tumors are more and more common than people are aware,” Maker said. “Londyn’s case, where there were tumors behind both eyes and the same cancer in her brain, is extremely rare, but not retinoblastoma itself. But it can’t be diagnosed unless the pupils are dilated, which I very much now advocate as part of a routine newborn screening.”

Hatch said she greatly admires her sister’s ability to not be discouraged in the face of what is, at best, a bleak prognosis.

“I just don’t know how in the world she’s holding it together,” Hatch said. “We all just hoping for a miracle. That’s all we can do.”

Friends and family who are helping Lingley and Porter to make ends meet have been contributing to a bank account at Bar Harbor Bank and Trust’s branch bank in Lubec under the names Laurie Lingley/Linda Maker, for baby Londyn.

CORRECTION:

A previous version of this story incorrectly stated that Linda Maker is Londyn's great-great-grandmother. Maker is the infant's great-grandmother.

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