4-Year-Old Girl Fights Terminal Brain Cancer as Her Parents Struggle to Accept Her 'New Normal'

"The hardest thing is watching her fall apart and there's nothing, as a parent, that you can do to take her pain away," Ciara Lanham tells PEOPLE of her daughter June

june lanham
June Lanham. Photo: courtesy ciara and joey lanham

A couple in Tennessee is doing their best to remain hopeful as their 4-year-old daughter battles terminal brain cancer.

Ciara and Joey Lanham's world was shattered in February of this year when they discovered that the health issues their daughter June was experiencing were due to six tumors in her brain and down her spine.

A month later, doctors confirmed the worst: June had a rare brain cancer called Choroid Plexus Carcinoma and Leptomeningeal Disease, which occurs when cancer cells migrate to the cerebrospinal fluid.

"Our life was forever changed," Ciara, 24, tells PEOPLE. "The hardest thing is watching her fall apart and there's nothing, as a parent, that you can do to take her pain away."

To make matters worse for the parents — who also share 5-year-old daughter Jolene and 1-year-old son Jericho — Joey, 25, lost his job at a boat company after running out of unpaid, job-protected leave under the Family and Medical Leave Act (FMLA), and Ciara is close to losing hers as a center representative/sales agent for the same reason.

"It's sad parents have to choose between spending time with their child, taking them to appointments and staying overnight in the hospital or keeping their job," Ciara explains. "It really is unfortunate that three months is all the time allocated for FMLA, even when your child is very sick and dying."

june lanham
June Lanham. courtesy ciara and joey lanham

To cope with their growing medical expenses, Ciara created a GoFundMe page — something she admits she was hesitant to do, but felt was necessary given their job situations, June's medical battle and responsibilities of caring for two other young children.

"Joey made the majority of our income. We lost insurance after he lost his job and have wiped out our savings," Ciara explains. "I never thought I would be in this situation, but 2020 has hit us hard and has been the worst year of our lives."

According to Ciara, her family's struggle began around September of last year when they noticed June, whom she describes as "full of life, sassy and the funniest 4-year-old I have ever met," was starting to have trouble walking and keeping her balance.

Visits to a pediatrician and specialist resulted in June being diagnosed with a gross motor delay, which prompted her to get a leg brace and start physical therapy. But neither seemed to help, Ciara says.

"It got to the point where we had to hold her hand to keep her from falling over," the mother of three recalls. "She also developed a lazy eye, and her eyes started to cross."

june lanham
June Lanham. courtesy ciara and joey lanham

In January, the Lanhams took June back to the pediatrician, who referred an optometrist for glasses. But again, nothing seemed to get resolved with June's health and soon after, she started complaining of a headache for the very first time.

"My husband and I just felt something was wrong, so he took her to the ER at our local children's hospital," Ciara recalls. "They ended up doing a CT scan and found two tumors in her brain — one on her brainstem, which was causing all of her issues, and one towards the top of her brain."

June was immediately admitted to the pediatric ICU at East Tennessee Children's Hospital, where she underwent a full-body MRI and learned there were four more tumors in her brain and on her spine.

By March 3, doctors delivered the brain cancer diagnosis — one that Ciara says "has proved to be terminal in the past."

Since then, Ciara says her daughter has undergone two tumor removal surgeries and been through four unsuccessful cycles of chemotherapy. She recently started another cycle using different medicine to see if it will work but as of Wednesday, the tumors had stopped growing and spreading.

june lanham
Ciara and June Lanham. courtesy ciara and joey lanham

Despite June's health battle, Ciara says her daughter has "been so strong through all of this and tougher than any adult I have ever met."

"She knows she has cancer and tells us all the time, 'I have cancer,' but she doesn't understand what it actually means," the mom notes. "Sadly, she is used to all of this now — all the chemo, hospital stays, clinic appointments, it's her new normal."

Things have also been challenging for the Lanhams, as only one parent is allowed to be with June during treatments and no visitors can come to the hospital due to COVID-19 restrictions.

In addition, the parents — who have documented June's progress in a Facebook group called "June's Fight" — have been balancing their own emotions while remaining strong for their other children.

"It has been very hard for us, but it's something we have to do. If June or her siblings saw us being upset and stressed all the time, then they would feel that too and that's the last thing we want," Ciara explains, noting they've relied on their faith to get them through these challenging times.

June lanham
Joey and June Lanham. courtesy ciara and joey lanham

As the family prays for a miracle, Ciara hopes their story will urge other parents with similar experiences to speak up.

"Advocate for your child. If you see something is off about them, go to a doctor and voice your concerns," she says. "If they don't give you the answer you're looking for, go somewhere else. You know your child and their behavior better than anyone. Even if it turns out to be nothing, better safe than sorry."

She also hopes parents will embrace the healthy children in their lives, especially during Childhood Cancer Awareness Month in September.

"There are so many precious kids throughout the world facing some type of cancer battle," she says. "We were kind of thrown into this world of childhood cancer that we knew nothing about before, but have learned to never take your child's health for granted."

"Sure, sometimes your kids can get on your nerves, but just be thankful they are alive and healthy," Ciara adds. "Some parents would give anything to have their child running through the house making messes."

Those interested in helping the Lanhams can do so here.

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