Julie Mikesell recalled her son Ethan complaining about his leg hurting and he was running a fever as well.
“We thought, ‘Oh, it’s growing pains,’” said Mikesell, who nonetheless took him to a doctor.
On Sept. 21, the family’s life was changed forever. And now, a Gilbert community is rallying to their aid.
“I got the worst phone call,” said Mikesell, who lived in Gilbert for 15 years before moving to Queen Creek. “He was extremely anemic and we needed to get to the hospital right away. It looked like he had cancer.”
Mikesell and her husband, Darin, rushed Ethan over to Banner Desert Medical Center in Mesa.
“He couldn’t walk, my husband carried him into the emergency room,” Mikesell said. “The emergency room doctor gave him morphine for the pain.”
Ethan’s white blood cell count was off the charts and he was admitted to the pediatric intensive care unit for a platelet transfusion to treat the anemia.
More blood work was done and X-rays of the 9-year-old’s pelvic and femur were done, confirming three days later that Ethan had B cell acute lymphoblastic leukemia or ALL.
It is the most common type of cancer in children, involving blood and bone marrow, representing about 25% of cancer cases in U.S. children younger than 15, according to the National Institute of Health.
Approximately 3,100 children and adolescents younger than 20 years are diagnosed with ALL each year in the country and since 1975, there has been a gradual increase in the incidence of ALL, the NIH said.
Ethan stayed 10 days in the hospital, where doctors put a port in his chest for medication and treatment. They performed a bone marrow aspiration and lumbar puncture, where a dose of chemo was administered, Mikesell said.
“During the hospital he was kind of scared,” she said. “The worst night was after his surgery and the port was in. He was in so much pain. I held him so tight, he was hurting and crying. I was like, ‘it’s going to be OK.’
“That was the hardest night. Since then he has been such a trooper so strong with everything he has to go through.”
Ethan has been undergoing weekly chemo treatments, including a lumbar puncture every four weeks and blood transfusions.
“He lost his hair completely now,” Mikesell said. “The different chemos he is on, he has mouth sores.”
Because of his weakened immune system, Ethan could not return to Cambridge Academy Charter in Queen Creek for the rest of the school year until he is stabilized. He’s doing his coursework over Zoom with his teachers.
Although the pandemic was horrible, Mikesell said she sees a blessing in that schools put virtual learning in place.
Provided there are no major road bumps for Ethan, ALL has one of the highest cure rates of all childhood cancers.
And, the family is doing what it can to keep him healthy in the meantime – ordering groceries online, allowing no visitors and rarely leaving home.
“We’re pretty much staying home unless we got to go to the hospital,” Mikesell said. “I wash his fruit and vegetables really good. He has no immune system to fight anything. Our whole life has changed.”
Sons Austin, 12, Cody, 16, still attend school and the oldest Austin, 19, goes to work but they keep their distance so “not to contaminate Ethan.”
Ethan’s 9th birthday in January was celebrated just with family.
“He’s tired and in constant pain – his legs hurt all the time and his ankles because of chemo,” Mikesell said. “And whenever he has a lumbar puncture, he’s a 9-year-old walking like an old man because he is just hurting.”
Although Ethan was prescribed oxycodone for his pain, he avoids taking it because the pain medication makes him feel “funny,” Mikesell said.
And, there are days that Ethan, even with the help of an appetite pill, won’t eat, and Mikesell has to come up with something that would work.
But overall, Ethan is a strong kid, she said.
“He is like the bravest little kid, she said. He makes comments like, ‘it sucks we can’t go on vacations, go to school or see friends.’ Couple of times he gets moody and breaks down but it’s amazing he is a strong, strong kid.”
For the family, it’s like they never left the COVID restrictions behind.
“It was a shock at first,” Mikesell said. “The hardest thing was the middle child wanting to have friends spend the night and going to birthday parties, not allowing Austin out to his friends’ houses. It just depends on Ethan’s immune system, if there is none we keep it locked down and safe.”
Caring for four boys, the house and seeing to Ethan’s health is a careful balancing act, Mikesell said.
“I definitely have my emotional days,” she said. “I’m definitely a people’s person so it’s been very hard not to be able to hang out with friends and do what I use to do.”
She said she sometimes feel sad and left out and wonder if her friends are moving on with their lives without her.
“I have to say it has its ups and downs, missing people, the simple things like going to lunch, having people come over for lunch, go on vacations that were taken for granted,” she said. “But they still will be here when this is over. I have good friends who support us and will be there for us. It’s a blessing my husband still is working from home, if not it would be worst isolating.”
One of Mikesell’s good friends has organized a fundraising event to help the family with medical bills and hopefully raise public awareness about ALL.
Janine Igliane has known Mikesell and her family for about 15 years when they all lived at the Power Ranch community in Gilbert. They’ve been in the hospital room through most of each other’s children’s births and her son
Chase, 9, is buddies with Ethan, Igliane said.
“We have little kids together and went to church together,” said Igliane, who still lives in Power Ranch. “I feel like we did life together. It’s very special.”
Igliane said that Tuesday when Mikesell got the call that Ethan might have cancer, “she reached out to me to pray for him.”
“It felt like it’s happening to someone in my family,” Igliane said. “Ethan is very special to our family because he and my son are such close friends and I have a special connection to Ethan. I adore him and my son adores him.”
Igliane said it’s been tough to watch the family deal with Ethan’s cancer.
She said Ethan was a fun-loving boy who was “always happy and laughing.”
“That is hard to watch it happen,” she said; “to see a little bit of his spirit broken.”
Despite the ordeal, the family is doing relatively well, said Igliane, who has nothing but praise for Mikesell as “one of the best moms,” who would do anything for her children.
“She’s also a fun mom,” she said. “She loves to hang out and have fun and is very involved in her kids’ lives.
“Julie very much puts on a strong face for everybody but deep inside I know it’s so hard for her,” she said.” At times she and I would talk and she would break down crying, almost like she’s holding everything in and getting it off.”
Igliane, a local Realtor and her company are donating the food for the Cornhole for a Cause fundraiser and the Power Ranch HOA is providing the venue free of charge. Others have stepped up to provide the raffle prizes and silent auction items.
As planned, Ethan is scheduled to finish his treatment program by December 2023.
“As long as there are no relapses, he’ll be tested for the rest of his life,” Mikesell said. “And, hopefully he does not have a relapse. As a mother you are always scared, it’s always in the back of your mind.”