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As nurses, Ben and JoAnn Hughes had delivered bad news to families in hospitals on countless occasions. But when it came time to tell their 9-year-old daughter she had been diagnosed with stage four ovarian cancer, the words would not come.
“I thought we could deliver that message,” Ben said. “Boy, was I wrong.”
Alexa Hughes is a third-grader at St. Joseph School battling ovarian cancer. While the diagnosis is often thought to affect mostly women over the age of 40, in young girls, germ cell tumors can form from what would develop into egg cells in a mature body.
Alexa received her diagnosis Nov. 9. It was an earth-shattering moment that came after her mom took her to the doctor for respiratory issues.
“She was coughing all night the night before I took her in,” JoAnn said.
Dr. Daniel Finn of Physicians to Children, Alexa’s primary-care physician, did a full assessment.
“He noticed that her belly was a little distended, a little firm,” JoAnn recalled.
Alexa had been experiencing stomach pain, but nothing that seemed alarming. Still, an ultrasound was scheduled at Flaget Memorial Hospital the next day.
“That’s when they found it,” JoAnn said. “She had a big mass in her abdomen, and it started in her left ovary.”
Having worked in the medical field and seeing the ultrasound with their own eyes, Ben and JoAnn knew this was no minor issue.
The family rushed home to pack a bag, not sure how long they would be gone or what to expect once they arrived at Norton Children’s Hospital in Louisville.
Friends of the family helped tend to Alexa’s two brothers, Wesley and Jeffrey, while Ben, JoAnn and Alexa arrived at Norton’s emergency department where additional lab tests and scans would confirm their fears.
An alpha-fetoprotein (AFP) test, used to detect certain cancers, came back at greater than 94,000.
“Normal is 0 to 9,” Ben said.
The parents knew it was serious when oncologists were in the room before Alexa had even settled in. Not only did she have tumors on her ovary, but in other parts of her abdominal cavity, liver and spleen. By Thursday, she was scheduled for surgery and the medical team helped deliver the news.
“I was scared,” Alexa recalled, not quite sure what was going on at the time.
Alexa’s surgery and recovery process took about five hours. Her left ovary was removed, as was the omentum, an extra protective barrier for internal organs. A mediport was also put in so she could begin receiving chemotherapy.
Post-op, chemo and counts
Chemotherapy was started the Monday after Thanksgiving. It was a trying time for the third-grader as she took treatment in the hospital.
“I wanted to stay home with Stella,” she said, referring to her new puppy, who had joined the family the week before her diagnosis.
The treatments were also rough on her parents.
“We’re both nurses, but two things we’ve never done in our careers is we’ve never done pediatrics and we’ve never done oncology,” Ben said. “We were hit with both of those and didn’t know what to expect.”
The first round was rough on Alexa, who was put on Bleomycin, Etoposide, and Cisplatin.
The treatment caused her to be sick for nearly a week after its completion.
By the second round, though, doctors were able to develop a regimen best suited for Alexa’s condition to limit the ill effects.
Ben said their medical experience helped in the process, because they were able to work with the doctors on a more personal level to figure out how to make treatment easier.
But the chemo still took a toll, as treatments required Alexa to be in the hospital for about a week, taking the drugs Monday to Friday with Saturday spent trying to rehydrate her body with IV fluids.
Alexa completed her fourth round of chemo just before Valentine’s Day, and subsequent scans and tests show her AFP was down to a normal range of 7.
For now, the doctors will continue to monitor Alexa’s condition over the next few weeks.
While she has been fortunate to not require a hospital stay aside from chemo treatments, issues with her immune system sometimes prevent her from having guests or even going outside.
Between treatments and feeling unwell, she’s unable to attend school for the remainder of the academic year, as well as unable to do some of the other activities she enjoys, such as dancing.
“I miss my friends,” Alexa said, sitting in the living room of her Bardstown home.
While the recent scans were good news, the Hughes family is not out of the woods. Alexa will go back for additional scans the first week of April. With a small spot still on her liver at the last scan, the family is praying the issue improves. If not, Alexa will again require chemo with new, more aggressive drugs, and possibly another surgery.
As the Hughes family experiences one of the most difficult times in their lives, they are thankful for the numerous family, friends and community members who have come together to help where possible.
“We have the most amazing support system here in Bardstown,” JoAnn said, adding that work, school, neighbors, doctors and others have all been supportive in their own ways.
JoAnn’s family took turns flying in from out of state to help out when Alexa had treatment.
And while the Hugheses attempt to maintain a sense of normalcy for their other children, Wesley and Jeffrey have been supportive, too, even walking with Alexa in the halls of the hospital.
Another big help was the creation of the Alexa’s Army Facebook page, which allowed for mass updates on Alexa’s condition so the family could focus more on each other and less on trying to keep everyone up to date.
Alexa herself has also been supportive during the past five months.
“She has been incredible through this whole process,” JoAnn said.
In a way, she said, Alexa has given them strength because she has battled her disease with a smile and optimism.
“She sets a pretty high bar,” Ben said of his daughter. “You don’t find much to complain about in your day when you look at a little bald-headed 9-year-old girl run down the steps every morning, full of energy, with a smile on her face and looking for her dog.”
But among their struggles, strength for the family has also come from their faith and receiving prayers from the community.
Prayer has increasingly become part of the family’s nightly rituals of putting the kids to bed, with everyone gathered around Alexa and blessing her with holy oils and holy water, which were given to them.
“When you get hit with this diagnosis, you lose all control of your life,” Ben said. “Cancer grips you and takes over everything. … The only thing we are in control of is prayer for her, praying for our family.”
And slowly, those prayers are being answered, they said.
NOTE OF THANKS:
The Hughes family credited man family and friends, the St. Joe and Maywood communities, and Nortan Children's Hospital for helping them through Alexa's battle. Special thanks were also given to Macy Spalding, Nicole Wheatley, Ann Jennings and the Jennings family, Kim Sharp, Sydina Bradshaw, and Mikki Jo Bowman.