The happiest child I've ever met

When Oaklee couldn't be roused one morning, it seemed like her parents were in for another devastating blow. Her mom, Katlyn, describes what happened next.

After four years in adult oncology I was no stranger to the world of cancer. But cancer did not upend my world until January 7, 2020. The day our baby girl, Oaklee, turned 14 months old, and the day she was diagnosed with astrocytoma, a type of brain tumor.

It started when Oaklee was limp and lethargic in my arms when I went to get her up in the morning. Her heart rate was in the 30s. She was throwing up. Airlifted to our local hospital, she was taken into emergency brain surgery almost immediately because they did a CT scan in the ER and found a mass in her brain.

It was a shock to everybody. For her dad and me, it was also terror and a kind of renewed grief.

Oaklee is a twin, but she was born alone. We lost her sister, Emma, halfway through the pregnancy. People say it’s better that it happened early versus meeting her and it happening after. But as a mother you can’t ever say that; when you lose a child, you lose a child. So when we got Oaklee’s diagnosis, that hit home. To this day it hits home. We lost her sister. Were we about to lose her, too?

We struggled to get pregnant and then, when Oaklee was born at 33 weeks, we fought along with her for three weeks in the NICU. And now we had to face another fight for her life. I think it helps that she’s just the strongest willed child I’ve ever met, and the happiest since day one. But also, we believe she has the best angel watching over her, and that’s Emma, the sister she never got to meet out here in the world.

In the emergency craniotomy, surgeons removed about 95 percent of Oaklee’s tumor. When we were trying to figure out where we were going to do her treatment, St. Jude was the first thing in my mind. I’d seen the commercials on TV, and they always made me so sad. Nobody ever thinks it’s going to be their child. When it is, all of a sudden what seemed too sad seems like a shot at hope. I asked for a referral. We got a call from the Director of Neuro-Oncology at St. Jude shortly after that, and were on the road to Memphis within 36 hours.

Oaklee had six months of chemotherapy at St. Jude. For about the first month we enjoyed St. Jude the way St. Jude really is. Then the pandemic came. As a parent, I felt upset that Oaklee wasn’t getting to experience all the social events St. Jude normally does to keep the kids busy and happy. But, most importantly, every scan showed improvement: The remaining tumor was shrinking. Oaklee got her No More Chemo party in July. In December, she got her port removed. This was a huge milestone because a year before that she was so sick we didn’t know if we’d have another holiday season with her. All her dad and I wanted for Christmas was her, whole and healthy, and we got that.

Around her first birthday, Oaklee had seemed a little behind. We thought it was because she was born premature and had some catching up to do. But once she got the tumor removed, she started crawling by the end of February. She was walking in March. Her vocabulary took off and she was saying more words than she ever had. Now she is full speed ahead, on the go 24/7. Recently she has decided she doesn’t need to take naps anymore, which is great for her dad and me (ha!). Her hair has grown out so you can’t see her incision scars. Her doctor at home says she is like any other 2-year-old. She’s so beautiful and so full of life, and we are so blessed.

And we owe a lot of that to St. Jude because, I mean, she might not even be here today if it wasn’t for St. Jude.

Oaklee lost her sister and battled cancer before she was even old enough to remember. It’s crazy that a child so young can be your hero. But she is, without a doubt, our inspiration.