The noticeable symptoms took over slowly, starting with a slight facial droop. Kelly Sawtelle, mom to seven-year-old Arden, thought it was the result of a tooth falling out.
“Maybe it was a nerve in her mouth or that she was insecure about the gap now that she was missing her teeth,” said Kelly. “I just thought she was trying to figure out her smile.”
Life went on, and Kelly didn’t think anything of Arden’s crooked smile. After all, she and her husband, Jonathan, saw Arden every day. It wasn’t until a birthday party with friends that they thought something may be seriously wrong.
“Some of my friends said, ‘have you noticed that half of her face isn’t really working?’” recalled Kelly. “’It looks like it’s paralyzed on one side.’”
Kelly made an appointment with Arden’s doctor and researched potential causes. She thought it was Bell’s Palsy. The doctor confirmed and told her it would go away on its own. She and Arden were sent home with steroids to expedite the process.
A few days later, however, Kelly noticed something else.
“She started holding her neck a funny way,” she said.
Looking back, Kelly recognizes it was probably because Arden couldn’t see well out of one of her eyes, or that she was struggling to focus.
At the time, Kelly thought she was having neck issues and took her to see a chiropractor, who recommended a second opinion. That led to another doctor ordering an MRI.
“We went up a few days later to Lexington and spent the night,” said Kelly. “We just waited and waited and waited. The doctors came in the next morning and told us.”
The worst had been confirmed. Arden had diffuse intrinsic pontine glioma, or DIPG, an inoperable brain tumor.
“We found out August 22,” Kelly remembered. “Our whole world just stopped.”
Arden Rose Sawtelle was born on December 29, 2009 to Jonathan and Kelly. Sister, Austyn, was born two months before Arden’s third birthday.
“Austyn just loved Arden and idolized her,” said Kelly. “She did everything that Arden wanted to do. I guess that’s what big sisters do – they set the pace at home.”
Arden was far from typical. She was never into princess movies or “girly” things. Instead, she was a fierce lover of animals, especially the fox.
“I think it started with that fox song,” laughed Kelly. “She was two or three when she first heard it. I don’t know what about it she loved so much – maybe because it’s quirky and different and she was quirky and different.
“She loved the zoo – the zoo was her happy place.”
Arden was an old soul with a mature sense of humor. She would laugh about things most children her age wouldn’t laugh at, and kept a close group of friends.
She was also a homebody. Arden never went to the Sunday school at church, opting to stay with her parents during the adult service. When the family moved to St. Jude for eight weeks for radiation following her diagnosis, Arden struggled being away from her home, pets, and toys.
“She was always a very anxious kid,” said Kelly. “So, after she was diagnosed, I was immediately thinking, ‘she can’t do this. She’s not going to be able to do this.’
“When I told her what was going on, I was crying and told her something was growing in her brain. She immediately calmed me down and said, ‘It’s okay, Mommy. It’s going to be okay. You’re going to be okay.’
“She never cried. She was never even sad about dying.”
At just seven years old, Arden was faced with something few children have to consider: death. After her diagnosis, Jonathan and Kelly didn’t want to overwhelm her, so they didn’t offer much information. They did, however, tell her they would answer her questions truthfully.
“When we were at St. Jude, she started picking up on things being serious,” recalled Kelly. “She probably knew more than we did. She didn’t talk a lot about her feelings, but she asked if she could die from this and I told her yes.”
Arden got quiet and left the room.
Later, when Kelly asked what she thought about her answer, Arden matter-of-factly responded, “Oh, that I could die? That doesn’t scare me, because I’ll just go to heaven.”
Prior to her DIPG diagnosis, Kelly hadn’t known Arden to have her own “Jesus moment.” Arden believed in Jesus because Kelly and Jonathan did. Then one night they were putting her to bed and she had a question for her dad.
“She asked, ‘What if God had to give someone a tumor so that we would trust Him more and He chose me?’” remembered Kelly. “It was really profound for an eight-year old, to say God gives us hard things to do good things. That He uses evil for good.
“My prayer from the beginning was not even that He would heal her – though I obviously prayed that, too – but that I would know that her faith is secure and that I would see her again. It just felt like He answered those prayers.”
Life Forever Changed
Arden endured radiation treatment at St. Jude and a clinical trial at Cincinnati Children’s Hospital over her nine-month fight with DIPG. She turned eight years old, spent time with her family, her friends, her pets, visited Disney, and met a fennec fox.
Then on May 25, 2018, Arden lost her battle with DIPG.
“Watching my child die, that changed me,” said Kelly. “Things that used to be important to me aren’t important anymore. And then other things – bigger things – those are more important.”
Austyn, now six, started kindergarten in September, her sister’s presence a constant companion.
“If they ever have to write anything, it’s usually about missing Arden,” said Kelly. “They did an MLK ‘I have a dream’ worksheet – if they could dream of anything, what would it be. She wrote, ‘I had a dream that Arden wouldn’t die.’”
When asked whether she feels Arden’s presence, Kelly is hesitant, but there have been things – all through nature – that have left her feeling connected with her little girl.
“About a month after she died, we were having landscaping work done,” she recalled. “We had some weeds that had grown up and I noticed that there was a big cocoon on one of the weeds at the top. I’d never really seen one that big.
“I tried to dig out my inner Arden and all the Wild Kratts we watched. Austyn and I got the cocoon, watched some YouTube videos, and put it in a safe habitat outside and checked on it every day.
“About a week or two later, I went out in the morning and it was a butterfly. It was a big, orange and black monarch, just sitting there. I felt like it was such a reminder of new life and something not so beautiful transforming into something beautiful.”
The following week, Jonathan, Kelly, and Austyn went to the beach and had another experience with an unexpected visitor.
“A single deer, by itself, walked out onto the beach and just hung out in the water with us for a little bit,” said Kelly. “Then it walked back to the dunes where it came from.
“Little things like that, it’s weird. Maybe. Maybe she’s doing sneaky things up there.”
As one year without Arden approaches, Jonathan and Kelly are continuing to navigate their grief. They sent paper lanterns into the sky on her ninth birthday, watched their beloved New England Patriots win the Super Bowl, and Arden’s favorite band, Maroon 5, perform at halftime.
In May, one week before her first angel-versary, they will travel to Ann Arbor to honor Arden at The ChadTough Foundation’s Champions for Change Gala.
“Neither of us feel a strong calling to spend our lives raising money for DIPG, but are proud to come alongside those who do,” said Kelly, “We will always be advocates for fundraising for ChadTough.
“We are proud that Arden will be honored at the ChadTough gala and hope her story will inspire others to give.”
Written by Chrissie Wywrot