FRANKLIN, Ind. (WISH) — At 3 years old, Adalynn Jessen was diagnosed with a rare form of brain cancer; six months later, the cancer had spread, bringing about a second diagnosis that doctors estimated gave her a matter of weeks to live.
Despite the grim diagnosis, “Addie,” who’s now 4, and her family are still smiling and fighting harder than ever not only for her but also for other families in similar situations.
In July, Adalynn Jessen’s parents noticed her head was tilting to the right. Thinking it may be neck injury, her parents took her to the doctor to check it out. Her initial diagnosis was a sprain, but her mom, Kate, had a gut feeling and sought a second opinion. A computed tomography (CT) scan revealed a mass, confirming that Addie had a rare form of brain cancer, diffuse intrinsic pontine glioma (DIPG). Its location in her brain makes it inoperable.
“She makes the most of it. She is the toughest little girl I know for sure,” said Zach Jessen, Addie’s father.
After six months of treatment, by January the cancer had spread; she was diagnosed with leptomeningeal disease.
“They were kind of thinking that we had three to five weeks left when they diagnosed her in January with that,” Jessen said.
Addie’s parents were left numb. They wondered how could this be happening. Shock aside, they packed up and headed to Cincinnati, where they found a specialist and began seven weeks of treatment; Addie underwent 40 rounds of radiation.
“We kind of feel like we are on borrowed time right now,” Jessen said Tuesday.
Now Addie, Kate and Zach are at their “happy place.” They find solace and regain their hope on their family farm. “She has her animals, and we have peace, and, you know, we can go outside and just kind of be with each other and it is a good thing,” Zach said.
But, Addie’s fight is far from over. She is undergoing chemo, takes from 80 to 90 pills a week, and is on round-the-clock care. While she manages to smile through it, some times are harder than others.
Her father said, “She has been depressed some about it, where she kind of will say things like, ‘I don’t like the way my face looks anymore,’ or ‘I wanna go run and play.”
Community support has allowed Zach and Kate to stay home, share every moment possible with Addie and soak in every smile and every milestone. The Jessens celebrated Addie’s 4th birthday in February while she was in the hospital.
“At least this way we have had the time with her to make every minute count and do everything that we possibly could with her and give her the best life that we can possibly give,” Zach said.
The Jessens say they will continue to fight for and advocate for those fighting diffuse intrinsic pontine glioma and childhood cancer. The Jessens chronicle Addie’s journey and discuss advocacy opportunity’s on their Facebook group adalyynSTRONG.