“Your child has cancer.”
How do you respond to that? Do you cry? Are you angry? Or do you step back and just breathe?
For a parent, few words could carry more weight.
2nd Lt. Tyler Moore carries the weight of these words with him each day. It’s his reality. A reality he never asked for.
In August of 2018, Moore, currently the 366th Security Forces Squadron logistics and readiness officer in charge, was in the missile fields near Malmstrom Air Force Base, MT, when he received a call from his wife in the middle of the night. She informed him that their 9 year-old daughter, Maddie, had suffered a seizure and was taken to the hospital.
Shortly after Maddie arrived at the hospital, the doctors realized her situation was more complicated than a typical seizure.
“I had no idea what was happening,” Moore said. “She’s never had any medical issues before and now the doctors weren’t even sure what was causing this, but they knew it was serious.”
Maddie was life flighted to Salt Lake City, UT, to receive more comprehensive care.
“We bought the next plane tickets to Salt Lake,” Moore said. “We just wanted to be with our daughter.”
Doctors performed a biopsy and found the cause of the seizure.
Maddie has bi-thalamic glioma.
“It’s an extremely rare brain tumor,” Moore said. “It’s very aggressive, cancerous and growing rapidly.”
From the beginning, Maddie’s cancer was already in stage 4.
Moore explained that the prognosis for this type of condition is not good. In fact, no one has survived it yet.
“The doctor said Maddie has a 5% chance of making it until the summer of 2020,” Moore said.
Tension filled Moore’s face. He paused, looked down and gave a blank stare. He was frozen, slumped in his chair and lost in thought.
He closed his eyes and inhaled deeply and slowly.
As he exhaled he whispered, “I’m sorry, it’s hard. It’s hard.”
He took another deep breath.
The tension in his face began to melt away, his posture straightened and he nodded his head as if he built up the strength to continue.
“Doctors told us standard cancer treatments don’t make a difference for Maddie’s tumor,” Moore said. “And it’s inoperable because of how it has spread throughout her brain.”
But the Moores didn’t give up.
“We began searching everywhere for an answer; we had to,” Moore said. “We looked all over the world for her best chance.”
That best chance showed up in the form of ONC-201, a clinical trial out of the University of Michigan.
The trial consisted of taking a new treatment and monitoring its effect on Maddie’s cancer.
They hoped the treatment would slow or even stop the progression of the cancer.
“Every three weeks, we flew to Michigan for medicine and a few scans,” Moore said. “It was exhausting for the whole family, but especially for Maddie.”
But as time passed, their efforts resulted in a glimpse of hope.
The cancer had reduced by 10%.
Doctors came from around the world to learn about the first potential effective treatment for bi-thalamic glioma. Nothing like this had ever been seen before.
“It was a medical miracle,” Moore said.
Months and months passed.
Then in July of 2019, Maddie went in for a routine scan that showed something unexpected.
The tumor had spread to Maddie’s cerebellum.
“It was really weird.” Moore explained. “We thought the treatments were working, so it shouldn’t have spread anywhere else.”
This discovery prompted the doctors to do additional scans of the brain and spine.
They found more tumors in her thalamus and riddled down Maddie’s spinal cord.
This news was devastating as is, but how the tumors were developing was cause for additional concern.
Maddie’s cancer is rare because it grows very quickly from the center of things, whereas typically tumors tend to be near the surface. Meaning, Maddie’s tumors were growing in the center of her spinal cord, which would eventually paralyze her.
“Here we were thinking everything was going well, that things were getting better,” Moore recalled with sadness in his voice. “In that moment, we were all deflated.”
After a rollercoaster of emotions and an exhausting journey, Maddie’s outlook isn’t great. But Moore insists on one thing:
“We have never given up hope,” Moore said. “There is always hope.”
Throughout this journey, the Moore’s confided in their friends of 10 years, Billy and Kellee Hepworth.
During one of their conversations, Moore explained that a few side effects of Maddie’s condition include constant exhaustion, short-term memory loss and restricted mobility due to the damage in her spine.
The cancer, its side effects and the overall situation has slowly chipped away at the cheerful girl Maddie once was.
“It’s hard to watch your daughter change,” Moore said. “She doesn’t smile very much anymore.”
Kellee couldn’t standby and do nothing.
“How do I support a family in that situation?” Kellee asked. “Money is great, it is, but what I’ve come to realize is that the Moores wanted something more valuable than money: memories.”
Enter, Maddie Mail.
Maddie Mail was Kellee’s idea to fill a giant box with themed gifts and go all-out on decorating the inside of the box. It was a ridiculous, fun, custom-tailored gift for Maddie.
But it wasn’t Kellee’s gift to give.
Kellee gave the Maddie Mail to the Moores, so their family could be afforded the privacy and intimacy of the special moment when Maddie unboxed it.
“The Moores sent me a video of Maddie opening the Maddie Mail and the look on her face was pure joy,” Kellee said as she smiled big and let out a short laugh. “I was so happy I wanted to cry.”
Now Kellee sends Maddie Mail frequently. Sometimes as often as twice a month.
The story spread and after talking to other spouses in the 366th SFS, Kellee found that there were actually five other families in SFS alone battling cancer.
Maddie’s story inspired others to step-up and ask what they could do to help.
“It’s such a personal situation, and everyone deals with it in their own way,” Kellee said. “We just want to let them know that they are not alone and that we are here for them. We took that sentiment and put it into action.”
The community calls themselves ‘Gunslingers Against Cancer’.
The group has coordinated a blood drive, t-shirt sales and a fun day full of security forces events – like military working dogs demonstrations and weapon displays. They are also aiming to make Maddie Mail for more families.
“The goal of the security forces events and Maddie Mail is to give these local families an opportunity to escape from day-to-day life and make fun memories,” Kellee said. “And we hope the blood drive will support families beyond the local community.”
Even though Kellee has committed to helping more families, Maddie Mail continues to appear on the Moore’s doorstep to this day.
Kellee has has shown how good intentions combined with action can inspire a community to rise to the occasion in support of their Air Force family.
“All I can say is ‘thank you’,” Moore said. “It is easy to pray for us, and we need that, but I’m thankful for people like the Hepworths that take action to support us.”
Kellee admitted that it has been a lot of work to coordinate everything.
“You don’t expect anything when you do something like this,” Kellee said. “But a few times, I’ve received the most moving and sincere ‘thank you’ from the family members we are helping, and that makes it all worth it.”
All the good that has and is being done through the community has started with a family in need, good friends and fellow Airmen who did everything they could to be there.
Maddie’s story isn’t a fairytale. It’s raw but it’s real. But her story is inspiring Airmen to make a real impact.
“I’m thankful for my community,” Moore said. “This isn’t just a news story that goes away the next day. This is happening to ordinary people in your community and in your squadrons. So I’m thankful for everyone taking action. The more we raise awareness the more likely we will find a cure.”
Moore emphasized again, “There is always hope.”
Story was originally posted to the Mountain Home Air Force Base website on Nov. 18, 2019 and may be found at https://www.mountainhome.af.mil/News/Article-Display/Article/2019711/maddie-matters-how-a-childs-terminal-cancer-inspires-an-air-force-family-to-sup/.