Dyersville family isn’t letting ‘roller coaster’ year slow them down

DYERSVILLE — The Hall family of Dyersville spent a cold but sunny day together exploring and playing in the National Mississippi River Museum and Aquarium in Dubuque.

One of the stops of the Dec. 18 visit for parents Ashley and Nate and their four kids was the stingray tank.

“You did it, James!” big sister Alaina Tyler, 10, praised her brother James, 2, as he dipped his hands in the water to feel the slippery skin of the stingrays swimming past.

James’ attention quickly shifted when his father, Nate, mentioned there were starfish in a nearby tank. “Where?” James asked, running over happily.

Vonnie, who recently turned 1, was in everyone’s arms at some point throughout the day. Ashley said her oldest son, Evan Tyler, 12, is the favorite in the house with his younger siblings.

“There’s times when I couldn’t console one of them, and we put them with Evan and he stopped crying. That’s love,” Ashley said, adding that it’s been awesome to see Evan and Alaina be older siblings to James and Vonnie.

Like on the excursion to the museum, the family has enjoyed being together and spending time with one another this year, especially after four of the six family members — Ashley, James, Vonnie and Evan — were diagnosed with different health issues within the span of a only few months in late 2021.

They’re looking ahead to 2023 when they hope to have “actual downtime” as they navigate their “new normal.”

“We could have given up our entire year and have lost an entire year, but we didn’t,” Ashley said. “We still tried to get out and do as much as we could in between all of the things that were happening.”

Hall family health diagnoses

The end of last year was “roller coaster” for the family, Ashley said.

“The further we get away from that chapter, the more normal our life can be, whatever normal might be,” Ashley said. “We don’t question the universe anymore because every day something changed in our book last year.”

James, who was born in April 2020, was diagnosed in May 2021 with Langerhans Cell Histiocytosis (LCH), a rare cancer or cancer-like disease that occurs when the body makes too many Langerhans cells. He underwent a year of chemotherapy.

Around the same time James was diagnosed, Ashley found out she was pregnant again. At her 20-week ultrasound in September 2021, Ashley was diagnosed with placenta accreta, a serious condition that occurs when the placenta grows deeply into the uterine wall. This can cause severe blood loss after delivery. Doctors told Ashley she should prepare to deliver at 30 weeks.

Lavon, “Vonnie,” was born Oct. 27, 2021 at 27 weeks and 6 days. He stayed in the neonatal intensive care unit (NICU) for more than two months. He was able to come home in January 2022. The family celebrated Vonnie’s first birthday this year with a party and his baptism.

Evan was diagnosed in November 2021 with alopecia universalis, a medical condition involving loss of hair on the scalp and body.

The Hall family was treated at the University of Iowa Stead Family Children’s Hospital and UI Hospitals and Clinics. “It became a second home to us,” Ashley said.

Growing closer as a family

Ashley said her family always had been close, but their various health diagnoses last year made their bond even stronger.

In 2017, around the time Ashley and Nate started dating, Ashley’s dad was diagnosed with cancer. He died the following year. While the couple didn’t know it at the time, that experience prepared them for what they would go through with son James.

“We were already pretty family-oriented because we lost my dad and understood time goes really fast, and you don't know what's going to happen tomorrow,” Ashley said.

In May 2021, Nate noticed swelling on James’ head. Local doctors scheduled a CT scan that found a mass. James was referred to the University of Iowa Stead Family Children’s Hospital, where he was diagnosed with Langerhans Cell Histiocytosis. It’s a rare cancer or cancer-like disease that occurs when the body makes too many Langerhans cells, which help regulate the body’s immune system.

James began a year of chemotherapy and various at-home medications. His chemotherapy happened every three weeks, and hours later he’d get sick from the treatment, throwing up and spiking a fever. His record high fever was 106.2.

Through some of the chemotherapy treatments, James was hospitalized for five to six days, Ashley said.

James currently is in remission. His disease has a three-year remission window, with the first six months having the highest return rate. Doctors told the family there’s a 66 percent chance James’ cancer will return.

“He’s still at risk that something could happen and then we’d have to come back,” Ashley said. If the disease returns, James would start chemotherapy again.

Having James in remission has, at times, seemed harder than having him in treatment, Ashley said.

“Right now there's so much unknown,” Ashley said. “Even though there was an unknown (during treatment), you were in a schedule, you were in a process, and now there's no schedule and there's no process, and you're just sitting and waiting for the worst to come.”

A complicated pregnancy

At her 20-week ultrasound in September 2021 — in the midst of James’ treatment — Ashley was diagnosed with placenta accreta, a serious condition that occurs when the placenta grows deeply into the uterine wall. It can result in severe blood loss after delivery.

Doctors told Ashley she should prepare to deliver at 30 weeks. Vonnie was born Oct. 27, 2021, at 27 weeks and six days.

Treatment for placenta accreta can include an early C-section delivery followed by a hysterectomy. Sometimes a blood transfusion is needed also.

Ashley underwent all three and said it was one of the most painful things she’d ever experienced. She lost 5 liters of blood during surgery.

Vonnie was born on a Wednesday and James was scheduled for a round of chemotherapy that Friday. Ashley’s goal was to get out of bed to make it over to the children’s hospital from labor and delivery. She also wanted to see her new baby.

“Mind is a powerful thing, and I did it,” she said.

“When you have mom adrenaline, your mind overpowers even the worst pain,” Ashley said. “I just wanted to go see my baby, and nothing was going to stop me.”

Ashley had to stay in the hospital for 10 days, in addition to follow up appointments for checkups.

“My goal was just to get everybody home, and we did it,” Ashley said.

Proud of her kids

Ashley said her two older kids, Evan and Alaina — who were born during a previous relationship — made her proud with how they handled everything that’s happened. Both kids are more mature than they should have to be at the ages of 12 and 10, she added.

Evan and Alaina have “four parents who would be there at the drop of a hat,” Ashley said, referring to Evan and Alaina’s father and stepmom.

Evan and Alaina spend equal time with both families. Ashley called the kids’ father and stepmom “fantastic” and “a big part of” the Hall family’s lives.

Evan was frustrated at first after his diagnosis of alopecia, a condition that results in hair loss. Ashley said he has embraced it since. She created a Facebook page earlier this year — Alopecia Iowa — to help connect families whose children have been diagnosed with alopecia.

“He said, ‘This is me, and this is my new story, and I'm going to live it,’” Ashley said. “ … “I’m just very amazed at how well he’s handled it.”

She’s inspired by her oldest son and hopes other people are, too.

‘You have to live your life’

A lesson the family learned, Ashley said, was to let go of control and “make things work on the fly.”

“We also remember to stop, and it's OK to be home for a night and not do anything or it's OK if I don't cook supper we just order out. Like that's OK,” Ashley said.

James’ oncologist gave the family the advice of doing what feels right as a parent, telling them, “You have to live your life.”

So the family continued to do just that.

Nate this year started his own business doing automotive detailing, ceramic coating, restoration, painting and more. Nate and Ashley run the business together.

Ashley helped organize and fund raise for the second annual Healthcare Hero Appreciation Day at the Field of Dreams this past September to raise money and awareness for pediatric cancer.

The event is a way to bring families together, honor doctors and staff, as well as allow extended family to meet the health care workers caring for the kids. Ashley is excited for the third event in September 2023, and she’s already started planning for it.

“We've had a really great supportive community,” Ashley said. “We just wanted to find a way to do something for other people.”

Ashley said she wanted to teach her kids that there will be hard times, but there also will be people who support you. Feelings of sadness or anger are valid but it’s helpful to use “that sadness into feeling good again by doing something for somebody else.”

“I was talking with our oncologist who was like, you have two types of people when they get diagnosed with cancer,” Ashley said. “You have the people who shut themselves out and the people who put themselves out there. He’s like, ‘Obviously you’re the out there people.’”

Looking ahead to 2023

Ashley said it doesn’t take a lot for her kids to be happy — “just being together is OK.” The family enjoys being home, going to the arcade, having dinner together, visiting the river museum and other activities that are easy for everyone to be a part of.

Evan and Alaina enjoy when the family watches movies or shows together.

“It’s just nice to have that time,” Ashley said.

Nate and Ashley said the family also enjoys watching Evan and Alaina play basketball on their respective teams.

“This year we haven’t had a lot of downtime because we’ve been staying busy to make sure that we make up for all the times that we missed out last year,” Ashley said.

In the coming year, the family anticipates having “actual downtime,” Ashley said. Their goal for 2023 is to take a vacation together.

Ashley and Nate will celebrate their fifth wedding anniversary next November.

“We're numb to things most people might be scared of,” Ashley said. “I guess that’s kind of the prize of coming out through that year of just so much stuff happening at once.

“We feel pretty confident that if something were to come up that we've found some new tools and ways to cope. I don't think anything can knock us down.”

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