NARRAGANSETT, R.I. — Each day is lived in the moment for Jim and Terryn Winfield. Their 10-year-old daughter has a rare form of cancer.
“I think we’ve had an unspoken thing from the beginning — that we’re just taking it one day at a time. All of us have said that a million times. We just have to literally focus on one day — even that gets overwhelming,” Terryn said about the condition of her daughter, Scotlyn.
In January, Jim and Terryn received the news from Hasbro Children’s Hospital that Scotlyn — who had been ailing with severe bone pain since October — had an unusual kind of leukemia called mixed phenotype acute leukemia or MPAL for short.
In essence, it is both acute myeloid leukemia (AML) and acute lymphoblastic leukemia (ALL). The term “mixed phenotype” means “both types.”
Leukemia is a type of cancer that attacks blood-forming cells in the bone marrow.
Those that spread quickly are called acute leukemias. The fast-moving nature of mixed phenotype acute leukemia means it is especially crucial for people who are newly diagnosed to be treated quickly.
The family of eight children, ranging in age from six months old to 17 years old, has been rallying around their sister. The Winfields have struggled to care for all of them, while giving focused attention to Scotlyn, who often goes to the hospital for treatment several times a week.
Other difficulties have come their way, too. Neither parent can work right now because they are needed at home and must avoid bringing into the house any viruses or diseases that would complicate their daughter’s condition.
“It’s like he’s suddenly out of work, like literally overnight with a large family,” Terryn said about Jim and his earnings.
“It’s for food, it’s gas in the car, it’s so many things, it’s treatment, it’s making sure she has everything she needs from wigs to having to transform the house before she was able to come home and get all kinds of different things in the house,” Terryn said about their lives bulldozed by Scotlyn’s diagnosis.
To help with current and future expenses, they have set up a Go fund Me page at www.gofundme.com/f/help-the-winfield-fight-scotlyns-leukemia
They are looking to raise $100,000, but they said they are unsure whether that will be enough to meet the next two years of family expenses. Doctors estimate that the treatments will take at least that long.
How It Began
“When we went out for Halloween my knees were really hurting,” Scotlyn explained in an interview with The Independent.
“The day before Halloween I was very happy because it stopped hurting and then three days after my shins were not feeling good, but I thought that was from doing gymnastics. I thought I had like shin splints,” she said.
But the pain didn’t stop there.
“Then it was spreading to my fingers, my elbows, shoulder a little bit. I then remember screaming in the bathroom because I couldn’t open the door,” she said. Her parents were bewildered, stunned and groping for answers.
Eventually Scotlyn was taken to be examined at Hasbro Children’s Hospital. Oncologists first thought she had the childhood form of leukemia called acute lymphoblastic leukemia (ALL).
“But within a few days, they called us and said she also had acute myeloid leukemia (AML), meaning the rare form. Medical authorities said that her mixed phenotype acute leukemia occurs in about three percent of all acute leukemia cases.
It is more common in adults than children, but it can occur at any age, according to specialists who have treated this disease. Terryn said that treatment involves a cocktail of varying chemotherapy drugs and continues for the two years or more.
It is the severity of the disease, Scotlyn’s reactions to treatment and the need to deal with the unpredictability of the situation, that leave these two parents worrying about the unknown as in “what can come next?”
“There’s so many unknowns in there. We’re already dealing with quarantine as it is. This makes it harder for me to go out and work when there is a high likelihood that there is something that can be brought back home,” said Jim.
Work would require him to quarantine from family members – not because he might have COVID alone, but any other illness he picks up – for 14 days. It’s time he cannot afford away from the family.
A contractor for preserving and restoring old houses, Jim often traveled to work in Connecticut, Massachusetts and New York for bank-assigned repairs on foreclosed homes or property forfeitures.
“It’s the unknown. If I pick up a contract to fix up a house, what if we have to go into the hospital,” he said, with his daughter since Terryn is breast-feeding the newborn and needs to be with the baby.
“I cannot make a firm commitment to the work to be done,” he said.
For example, this week Scotlyn had to go in for treatment three or four days, which is the number on average she goes weekly, her mother said.
Because of the newborn, both parents switch off taking her for just for the day trips to Hasbro, but when Scotlyn is hospitalized – and that happens from time to time – her father is the parent who stays with her overnight.
When first being diagnosed and treated, Jim and Scotlyn were in the hospital for one month with neither leaving, Terryn said, adding that she made the 40-minute one-way trip each day to visit her daughter.
It gave her time to ponder the unknown — and a lack of control — as well as lean on the family’s Christian faith.
“I know at the very, very beginning that was on my mind. I like control my husband would say. I like lists and I like planning and everything. This was completely, completely out of my control,” she said.
“I think at the very beginning I had a lot of talks with God on my drive home about literally putting my daughter in his hands because I can’t do anything about it,” she added.
Jim said, “At some point we all want to pretend in our lives that we have the power to change things. And in some degree we do, but you know, it’s the ability to put your ego aside for the benefit of everybody else and put your faith in something that is the foundation of our marriage and our family.”
That foundation means doing everything a parent can — even when it seems impossible — for their children, especially a sick child.
They have already had to buy commercial version air filters, water filters, shower chairs, special handles and soap dispensers so Scotlyn didn’t have to touch anything with germs that could harm her weakened condition
With warm weather coming up, they now also need to transform their yard into safe area for her, Terryn said, noting that she cannot play in dirt because of disease and cannot even ride her bike and risk falling off.
Now perched at the beginning of this fight to help Scotlyn cope with the ups and downs — as well as their other seven children — both parents said that perseverance is what will make the family’s life as normal as possible.
Yet, they are realistic about the situation in front of them.
“It’s hard to plan anything. We don’t have a clue when she’ll be in the hospital, when she’ll need to be in the hospital, how she’s going to feel, what else is going to be affected,” Terryn said.
“Like nothing can be scheduled or planned right now,” she added.
Jim paused for a moment.
“From a father’s perspective, I want to always be the one to protect my children and family and just that thought right now is not in my realm right now, I guess. It’s adjusting to the whole realm of change,” he said about not being able to rescue Scotlyn from cancer.
“Typically, if the kids get hurt, fall off the swing or something, we can pick them up, give them a hug and it’s better,” he said.
“This isn’t,” Jim said in a slow and drawn-out cadence, “a pick ‘em-up-and-give-them-a-hug kind of thing.”
He then became silent as he did many times.