Zoey Crenwelge

Coping through the unimaginable

Baby Zoey has rare and agressive form of cancer, but community o ers support

By McKenzie Moellering

Standard-Radio Post reporter

Four months after their daughter’s birth in July 2019, the Crenwelge family got unimaginable news: Whitney and Zach’s newborn daughter, Zoey, had tumors on her liver and one on her left adrenal gland.

“We had decided we wanted another child and up until this point, everything had gone normally, from the pregnancy to the birth,” Zoey’s mother, Whitney said. “I was on maternity leave and planned to return to teaching on Oct. 31.”

Whitney and Zach noticed that Zoey’s belly looked distended.

“We figured she was really full. There were signs something was not normal, but at the time, we didn’t know those were signs of cancer,” Whitney said.

At her four-month appointment, Dr. Kristi Stafford figured that Zoey’s liver had just grown faster than the rest of her body, but felt like an ultrasound was needed just to be sure. Within hours of results of the ultrasound, the family was sent to Methodist Children’s Hospital in San Antonio.

“It was unthinkable, the unimaginable was happening to us,” Whitney said. “We were frozen. What do you do except cry?”

Zoey was admitted and for nine days underwent several tests and scans. Results came back normal until a final scan that showed the MYCN gene was amplified.

“We were hoping this meant it was an intermediate risk and there would be a few rounds of chemotherapy and then we would be done,” Whitney said. “But the liver biopsy came back and showed the gene was amplified, which made her highrisk neuroblastoma.”

That meant the cancer was both rare and aggressive.

“They couldn’t really tell us what this meant for her, just that it was very rare and very hard to treat,” Whitney said. “We felt a little hopeless but we knew she was a strong girl. We wanted things to go a different way but we knew it was time to start treatment.”

Treatment plan

Because of the intensity of the diagnosis, an aggressive treatment plan was put into place.

For the next six months, Zoey would undergo six rounds of chemotherapy, a stem cell transplant (meaning Zoey got her own bone marrow back), radiation and then immunotherapy.

She is currently in the immunotherapy stage, which helps get the immune system back to normal. This will likely take about six more months.

“The last eight months have had a lot of ups and downs – a constant battle of the unknown,” Whitney said. “So far, Zoey has exceeded doctors’ expectations. She is still sick but she never had to be in the ICU like they were anticipating,” Whitney said. “You would never know if you saw her that she was a sickly child.”

The Crenwelge family has now been home for two straight months, the longest they have been home since Zoey was first diagnosed.

Prognosis

While the future is uncertain, the Crenwelges are remaining optimistic.

“We still cry a lot, but we just have to think about going forward and we are we going to make the most of her life,” Whitney said. “We are learning to live day by day.”

Zoey has continued to develop like most babies. She started crawling around 13 months and has started talking.

“It’s been so nice to be home living and not be stuck in the hospital,” Whitney said.

There are still concerns for Zoey’s future. Because she is high-risk, her chance of relapse is 50% or greater.

Her chemotherapy drug could lead to leukemia. Another drug may cause hearing problems.

“Going through all the paperwork and learning about these medications and their side effects is hard because we don’t know what we could be possibly causing in the future,” Whitney said.

The family continues to look forward and do whatever they can to get their daughter

Zoey Crenwelge, 15 months, was diagnosed with an aggressive and high-risk form of neuroblastoma in November 2019. Since then, she has gone through chemotherapy, a stem cell transplant and radiation. She is now in the immunotherapy stage. — Submitted photo

cancer-free. In the meantime, she will continue to have a Broviac intravenous line and a port, which is under the skin.

Coping

Whitney and Zach have both lost grandparents to cancer and have other family members who are going through cancer treatments. But hearing their child had cancer was unlike anything before.

“Nothing compares to the doctor telling you your child has cancer and I think in that moment, we automatically thought our child was going to die,” Whitney said.

Zach and Whitney’s relationship has strengthened during this journey due to more communication and supporting each other while away from home.

“I think our relationship has strengthened,” she said. “It’s been hard and we have had days when the communication was lacking but we have to talk things through and do what is best for our child.”

Whitney has coped by reading and taking time for herself. Unfortunately, due to COVID-19 precautions, she has not been able to reach out to connect with other families going through similar situations but has relied on connections made via social media.

The Crenwelges have another child, Lincoln, who is five and handling things very well.

“There is still a lot he doesn’t understand but he knows his sister is sick,” Whitney said. “When we are gone, he gets to spend extra time with family and friends and I think he enjoys that. His teachers in school have been very accommodating and understanding that if he is having an off day, it is likely because I haven’t been home in a week.”

Whitney said Lincoln has also looked out for her, cared for her and tries to make her happy when she is sad or uncomfortable.

Community support

Since the Crenwelges’ journey began, the community in Fredericksburg has held several fundraisers and events to help support the family.

“People have organized meals for us, there have been fundraisers, we have received cards and money from people we don’t even know,” Whitney said. “Our plan was to write thank you cards to all of these people, but we have received so much that we can’t keep track of it all. We are eternally thankful for everything.”

The Crenwelge family consists of Zach and Whitney, in back, and Lincoln, 5, and Zoey. When not at medical appointments, the family enjoys time being outside and being with family. Lincoln, 5, has cared for his sister, Zoey, throughout her cancer diagnosis and treatment. He has watched out for her, comforts her and sings to her.

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