Our host Emilia Turner sits over a tiny table full of Play Doh ice cream cones and cookies, a shaggy dog guard by her side and some ridiculous pastel colored ponies playing on TV.
As the ponies prepare for an open fight with unicorns while Emilia sings along, her body is the scene of a much calmer, but more menacing attack. It struggles with a genetic, tumorigenic disorder that modern medicine can hold in check, but is unlikely to be entirely defeated.
The 3-year-old has a tumor that straddles both optic nerves and reaches into her brain, endangers her eyesight and messes up her growth hormones.
With chemotherapy, the tumor begins to recede. But Emilia’s parents are preparing for a lifelong medical vigilance against a myriad of threats posed by new tumors.
When Emilia arrived in 2018, her parents Sarah and Robbie Turner breathed a sigh of relief after a difficult pregnancy. Her family was complete.
“She was born and perfect,” said Sarah.
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Sarah had already cleared a number of medical hurdles in her own life. In high school, she had heart problems that required multiple surgeries in college to repair two heart valves and implant a pacemaker.
Parenthood would be a bright new adventure for the couple, Sarah, a veteran of the community service, and Robbie, a mechanical engineer.
But when her girl was just 4 months old, a pediatrician suggested that Emilia have a genetic test that eventually revealed a defect in a gene that was responsible for producing tumor-suppressing proteins. The disease is known as neurofibromatosis type 1 (NF1).
The trigger for the tests, and at this point the only visible signs of the disease, were café-au-lait discolorations on Emilia’s skin. Eventually, Emilia’s parents discovered that their sensitivity to heat and insomnia were also related to NF1.
The list of damage NF1 can cause is long and varied and can affect multiple systems in the body. It can lead to skeletal abnormalities such as scoliosis or large head size, or benign nodules on the eye.
It can be associated with learning disabilities, although it did not affect Emilia in that way.
NF1 puts a person at risk for tumors of the nerves that form under or on the skin, but also, as with Emilia, on the visual pathways. People with NF1 are also at higher risk of developing and developing tumors of the adrenal glands, gastrointestinal tract, or muscles Develop blood and breast cancer.
The disorder affects about 1 in 3,000 births – unusual enough that the next experts on the disease are at the University of Miami.
Navigating diagnosis and treatment has grown exponentially difficult during the pandemic. COVID posed potential barriers to getting second opinions from non-governmental experts when some doctors only allowed personal visits, Sarah recalled.
The family sees a geneticist at Nicklaus Children’s Hospital in Palm Beach Gardens, an eye specialist at the Bascom Palmer Eye Institute in Miami, and an oncologist and endocrinologist at the University of Miami.
Little things turned into challenges.
A ride in the family’s jeep turned out to be too bumpy for the little one with a sensitive chemo port in their chest. A relative donated a minivan. The cost of gasoline, parking, and car maintenance are in addition to medical expenses.
Emilia’s tumor makes them grow faster
The tumor accelerated Emilia’s growth, resulting in her digging through multiple clothing sizes in months instead of years, and also causing her to outgrow every stroller on the market so her feet wouldn’t drag on the floor.
Sarah buys clothes that fit a 6-year-old from the sales and thrift store. She found a collapsible cart to carry kids’ and travel bags that works for now, but the canvas box on wheels suffers from regular wear and tear.
The family sold their home and moved to a smaller townhouse to shrink and cover the balloon bills.
The Turners had expected a break in Sarah’s career for maternity leave when Emilia was born. They rewrote these plans when Emilia’s illness took control.
Run a business and be the mom of a sick child
Sarah thought she would go back to her father’s insurance business instead, taking advantage of her boss’s built-in flexibility. But last spring, her father was diagnosed with lung cancer at the age of 66 and died 27 days later. The business was run by Sarah and her mother.
“I have maybe 12 hours (a week) when Emilia is happy and distracted,” says Sarah. But when Emilia is overwhelmed by pain, discomfort, or just needs more maternity leave, work has to wait.
The family’s schedule revolves around regular trips to Miami for treatment – a regimen complicated by their allergies to some drugs and punctuated by unexpected overnight stays due to an inexplicable and relentless fever.
“We went to the emergency room three times and the fever went up to 103, 104. Once the fever didn’t go down. This time we were there 10 days out of 12,” recalls Sarah. “We’ve probably been to the emergency room at least 12 times.”
With the threat of COVID, many doctor visits and treatments from Emilia begin with a swab of your nose, which can feel more like a cotton swab probe for your brain.
“We had to turn down birthday parties”
Preschool is out of the picture for now thanks to the pandemic, as are so many game dates and distractions that fill a preschooler’s world.
“She is so ready to be with friends again,” said Sarah. “We had to cancel two birthday parties.”
Sarah and Robbie were reluctant to seek outside help. But connecting with social workers and the Pediatric Oncology Support Team has made a tremendous difference, Sarah said.
Emilia has eight more chemo infusions, the last is expected in January. Sarah is already planning a graduation party in an empty parking lot across the street. Maybe she can land some costumed princesses and certainly balloons – Emilia loves balloons, says mom.
And there will be green cupcakes with pink icing, says Emilia.
“NF1 is a lifetime of stuff. It’s not a cancer that you treat and take care of,” Sarah said, noting that adolescence is an especially critical stage for those with the condition. “She has at least one yearly check-up, MRIs until she leaves college, and a neuro-ophthalmologist for the rest of her life.”
Robbie says the worst is “the constant unknown”.
“Every week it’s just drained physically and emotionally,” he said.
The pediatric oncology support team that nominated the Turners said, “Caring for their daughter has been emotionally and financially difficult, but Robbie and Sarah are not complaining. They also do not consider their victims unusual or exceptional.
“They are working hard to be independent and to offer everything Emilia needs. They have used their ’emergency aid’. … They had to fight hard to get Emilia the help she needs because of her cancer and the underlying genetic disease are so very, very rare. They don’t take “no” for an answer when it comes to their little girl. The Turners consider themselves an average family, but their courage, tenacity and relentlessness show that they are anything but are. ”
THE DESIRE OF THE TURNER FAMILY
The family needs help paying the medical bills as their insurance doesn’t cover everything. They also need assistance with rental, car maintenance, gasoline, and parking fees in Miami. They’d also love to do a mini makeover of Emilia’s room to make it brighter and more engaging, to help her transition from her room to hers. Emilia’s parents have used electronic educational games to distract and keep them busy during treatment, but her iPad is old and needs to be replaced. The family could also use a more sturdy cart to carry Emilia and her belongings, including cuddly bunnies, snacks, toiletries, and clothing on her medical tours. (Something that can be pushed and pulled would be ideal.)
Nominating agency: Pediatric Oncology Support Team