ETHAN - Haley Vogel has never followed the rules of medicine.
The 11-month-old baby girl was born last summer to Brian and Paula Vogel, of Ethan, and since her birth, life has been a little hectic.
In two weeks, Haley will turn 1, a milestone the family can't wait to celebrate. She'll be completing her second round of chemotherapy, which began at the end of May after doctors discovered a large mass near her spinal cord a few months prior.
But that's not the only medical conditions Haley has faced. She's also been treated for Hirschprung disease and Respiratory syncytial virus (RSV). But she's not alone in this fight as her family supports her, along with the Ethan and Mitchell communities.
In May, the Mitchell First United Methodist Church put together a benefit for the family raising funds for medical costs, gas for the many trips to Sioux Falls and food. And while donations are still rolling in, Connection Pastor Jerry Stravia said the church helped raise more than $10,000 to support the family.
ADVERTIsem*nT
It was "heartwarming," Paula said, to see their church support their family, and she's grateful for the people they've met along the journey of Haley's medical conditions.
Undergoing surgery
The health problems started hours after Haley was born.
She began having troubles feeding, according to her mother, Paula. Haley had a distended abdomen, and she was taken to the neonatal intensive care unit (NICU). She remained there for just shy of a month, with doctors struggling to determine why the newborn had so much air in her bowels.
Believing it was reflux, doctors placed Haley on a G-tube - gastrostomy tube - which feeds nutrition directly to her stomach. She also underwent Nissen fundoplication, or a surgical procedure to treat the reflux disease. The Nissen tightened the top of Haley's stomach, to help keep her from constantly spitting up.
But her symptoms continued.
A lot of vomiting and constant discomfort led the Vogels to get a second opinion after five months. The surgeon diagnosed Haley with Hirschsprung disease.
Hirschsprung disease affects the colon of newborns and young children. It prevents bowel movements from passing through the intestine due to missing nerve cells in the lower part of the colon.
ADVERTIsem*nT
In November 2016 Haley had surgery to remove a chunk of her bowel, approximately four inches, Paula said. It made "huge improvements."
Unable to live a normal life of a newborn, Haley began to fall behind in her gross motor skills, such as rolling over and sitting up because of the discomfort. After the surgery, she excelled.
But it didn't last.
"Haley from day one has never followed the rules of medicine," Paula said. "All of our doctors say that, too. She is not a rule follower when it comes to medicine. We just always have to be on our toes."
Coping with cancer
In March, Haley was becoming sick, constantly coughing.
Being entirely tube-fed, Haley was taken back to the hospital to see what was wrong. She was diagnosed with Respiratory syncytial virus (RSV) - a common respiratory virus causing cold-like symptoms that can be dangerous for infants.
Using an X-ray, doctors examined Haley looking for pneumonia, but instead they discovered a mass.
ADVERTIsem*nT
But because of the RSV, doctors had to wait for the virus to clear up before conducting any additional scans to find out more about the mass.
Once the RSV was gone, doctors completed numerous scans and, according to Paula, it was discovered to be cancerous, specifically neuroblastoma.
The tumor sits between her lung and spinal column, hugging around the spine, Paula said. It's about two-inches in size.
Although the news was devastating, it wasn't grim.
"Luckily we caught it before it moved, spread or got into her bone marrow," Paula said. "Our prognosis at this point seems good, or favorable I should say."
Family and community support
Haley acts and looks like any other 1-year-old.
Kicking her legs while in the car seat and making noises at her mother for attention, Haley doesn't look like a child currently undergoing chemotherapy. But she is.
ADVERTIsem*nT
This week, Haley began her second round of chemo. Once this round is complete, which is typically a 21-day cycle, doctors will complete scans to see how effective the treatment is. From there, they'll decide how many rounds of chemo she will complete, which could be anywhere from four to eight, Paula said.
"Its extremely stressful, especially with a little one that can't tell you what hurts and what makes her feel better," Paula said.
Still sporting the G-tube, Haley travels with a backpack full of supplies, but Paula has gotten used to the weight of carrying the carseat, the feeding tube equipment and extra gear.
And she's not alone. With the help of her husband, Brian, and her 4-year-old daughter Madison, it hasn't been as hard. Haley and Madison's grandmother, who lives in Mitchell, also chips in whenever she can.
A bright future
Since starting chemo, Paula said Haley has been doing really well, and has begun "catching up" in her skills, especially sitting up. And she's beginning to crawl.
To see her getting back to a normal life is a relief for the Vogels, and they are hoping she will continue excelling.
"When you're sitting in a hospital, and tied down with cords and monitors, it makes things difficult, and sometimes slows progress but we're hoping this is just a hurdle," Paula said. "Once we're over this we can continue on some straight roads."
ADVERTIsem*nT
Haley loves toys that make noise and light up, but she loves playing with her sister - who is her "biggest entertainment" - most. Her sister, knowing Haley's love for noisy toys, will get up and dance with the sounds. This causes Haley to kick her legs and move her arms in response, wishing to dance alongside her, Paula said.
Depending on how chemotherapy goes, the tumor will shrink in size, Paula said, allowing for the possibility of resection. Should doctors remove the complete tumor, Haley and her family will no longer have to worry about the neuroblastoma.
Until then, they'll keep going to chemotherapy and watch Haley as she grows and begins crawling.
"Hopefully the chemo works good, and we can remove (the tumor) at some point," Paula said. "And not have to worry about it again."
