SMILE!
She is a brave and spunky little girl who lives with her mom Rebecca, dad Erin, and two older brothers; Brenden (14) and Callen (12). Cara loves animals and has two Great Danes (Toby & Cooper) that she adores! Cara is in kindergarten, loves to dance and sing. She is legally blind and uses her walking cane to help her get around. Cara does still have some vision, but she needs to be very close to see.
Cara was born in January 2018 after a normal pregnancy. Everything was going well, until her one year well baby checkup. Cara failed her vision screening and they discovered her optic nerves looked a little different. After a MRI, in May 2019, she was diagnosed with bilateral optic pathway gliomas. These are tumors on her optic nerves and along the optic chiasm. We were immediately referred to Pediatric Oncology at Gundersen to start chemotherapy.
Cara underwent three different chemotherapy treatments, but none of them were showing results. Cara had a brain biopsy done at Mayo in Rochester and it was discovered that she has the BRAF V600E mutation which causes her cells to divide and grow at an uncontrolled rate. We were able to try targeted oral therapy, but they weren’t working either. Her tumors had progressed and were showing increased enhancement. Cara had started having troubles with her speech. She couldn’t form the words or get her thoughts out without struggling. She had a seizure on June 9th, 2023.
After a CT scan it was noted that her ventricles were enlarged. She was admitted to Mayo in Rochester, where she was diagnosed with hydrocephalus.
After numerous tests and treatments, she wasn’t making the recovery we all thought she would. By the middle of June
Gotta Have Some Fun
2023, she lost the ability to speak, ability to eat solid foods, and was having major muscle weakness on her right side. An MRI showed that Cara had rapid progression of her tumors and they now affected her brain stem. We had to make the decision to do radiation.
In July 2023, Cara started her 25 rounds of Proton Beam radiation at Mayo clinic in Rochester. Within four days, Cara was able to start talking again!!
It was a huge relief to hear her little voice again! Cara finished radiation in August and has been on monitoring, but has been doing well since. Her last MRI in February showed a slight decrease in the size of the enhancement of her tumors. She has spent more time in a hospital, than out of one.
Cara tumors will never go away, but with continued treatments, hopefully she’ll be able to continue to improve, and just enjoy being a kid.
Cara really wants to visit the ocean to spend some time with mom and dad, playing on the beach. Collecting seashells, building sand castles, and just goofing off. And if they are really nice to her… she just might even bring her brothers along, too.. 😉
Cara, Brenden, and Callen