Jace was 3 years old when he was officially diagnosed with NF1. The diagnosis of NF1 was very shocking for our family as we never heard about NF before. He had cafe au lait spots as a baby and our pediatrician would document them and the size at each visit. Jace was sent to an eye doctor at 3 to check for Lisch nodules. Jace was sent to a geneticist for a diagnosis where she ordered an MRI due to something suspicious seen on the eye exam. The MRI did not show anything other than UBO’s.
When Jace was almost 4, he had a seizure while at his babysitter’s house. We saw a neurologist who did an EEG and another MRI where the MEI showed a hypothalamus glioma. Jace had another MRI 3 months later that showed the glioma had doubled in size. We then went to Cincinnati Children’s Hospital to see a neurosurgeon and an Oncologist who wanted to biopsy the glioma to determine if it was high grade since it had doubled in size in 3 months. If it was high grade, we were told it would be a fight for his life. I was so torn about the biopsy. It was in a tricky place to get to. The neurosurgeon was a little reluctant to biopsy since Jace looked good in person. I asked if perhaps these gliomas initially doubled in size as they start to grow and then stabilize. The Doctors decided we could scan again in 6 weeks to see if the glioma was still increasing in size. Our family felt kicked in the stomach with all of this information. It was just so much to take in while wondering if waiting was the right decision. After 6 weeks, the MRI showed the glioma was stable. After another MRI 6 weeks after the previous, the glioma had shrunk on its own. We followed up with MRI scans every 3 months, then 6 months, and just now at yearly surveillance.
The NF journey is such a rollercoaster ride but through it, all Jace has shown what a strong warrior he is! Jace has been through many diagnostic tests and appointments but is an
amazing, smart, kind, resilient, silly, and loving little boy.
Our support system is one of the biggest motivators to fight NF:
- The staff at our local hospital and Cincinnati Children’s have always been so great to us. At a visit with the oncologist, Jace was given a Hot Wheels truck. He was so happy to receive it. While it was just a small gesture, it meant so much to him to have it.
- As we are always trying to learn more about NF as well as educate others, for NF awareness month, Jace asked his elementary school to donate a Hot Wheels car or My Little Pony toy so he could donate them to our local Children’s Hospital. His school collected almost 200 toys to donate. After neighbors, friends, and coworkers heard about Jace’s project, we received even more donations. Jace donated almost 600 toys to CAMC Women and Children’s Hospital. Jace was so excited to do this and was really hoping that it would make someone else smile that maybe having a test, at an appointment, or hospitalized.
- One of his special nurses at the hospital where he has his MRI scans donated $1000 to CTF in recognition of Jace.
- When Jace’s glioma was first found, my coworkers made up T-shirts to sell as a fundraiser for our medical bills. The front of the t-shirts said “Knockout Neuro-fibro-Matosis. The word was hyphenated like this because, at the age of 3, Jace could pronounce this huge word in syllables! We plan on making this an annual event for the month of May for NF Awareness.
Quick Takes
Motto
If this is our journey, we will make the most of it and pay it forward.
Favorite Song
Jace loves “We’re Not going to take it” by Twisted Sister which seems fitting for his NF fight.
Vacation
Disney, camping, or the beach.
Superpower
To make NF go away.
