GROW Community

Caring for a Child with Health Care Needs: Meet Scarlett

Amy Long Carrera, MS, RD, CNSC, CWCMS
Registered Dietitian Nutritionist
12/30/15  8:54 AM PST

Caring for a child, especially a young one, can be terrifying and rewarding at the same time. Enjoy this heartwarming story with a happy ending from Scarlett’s dad, Christopher W.

Scarlett is my boisterous five year old daughter. Today, Scarlett can run, jump, count to 20, sing songs, play catch, enjoy books and do all sorts of fun activities with me. But when she was just two months old, a neurosurgeon wheeled in a television monitor into her ICU room. He showed us the worst: an MRI image of a massive, malignant tumor inside of her head. All outward appearances to the contrary, he proceeded to tell my wife and I that our daughter was very sick, that she in fact probably had only several weeks to live, and that treatment wasn’t a realistic option. He told us that Scarlett was going to die.

These last five years have been about the journey from that terminal prognosis, to a fight for her life, then a fight for her health, and now, to a fight for a bright and glorious future for Scarlett.

The journey continued by getting a second opinion, and by trusting a neurosurgeon who believed treating Scarlett could result in a quality of life worth pursuing. Two long surgeries and one operating room stroke later, our daughter was half paralyzed, but the tumor was gone.

Those surgeries were the sprint. Chemotherapy was the marathon. My wife and I didn’t work for over year. We spent 16 months in and out of hospital rooms, dealing our daughter the powerful chemotherapies that were her only chance against the tumor recurring. We fitted her with hearing aids when the drugs knocked out her hearing. We fitted her with a g-tube when it was clear she was too sick to eat. We fitted her with a VP shunt. We pushed through each course of treatment, home medications, MRIs, surgeries, OT, PT, feeding therapy, and a dozen different doctors’ scrutiny.

Even as we fought for her life, we began to work for Scarlett’s rehabilitation and health. Weekly OT and PT appointments began to replace some doctor visits. We took sign language classes and began signing to Scarlett to help her understand us. And Scarlett began preschool at a terrific little school for deaf and hard of hearing kids.

Our hard work has paid off.  Scarlett learned to walk with a walker, then without one. Then she began to climb and jump! After years of singing and signing songs, she began to sing and sign along.  Now I can catch her singing “Twinkle Little Star” by herself. Even as we were wrapping up her second episode with chemo, her little world began to open up like this.

We are now two years out from her last chemo dose, with clear MRIs to-date.

Being Scarlett’s caregiver has been about being on this incredible journey. So much has happened since Scarlett’s birth that the memories I have before she was born feel like a very long time ago.

Yet, so much more is still ahead of us. Scarlett is g-tube dependent; her ability to eat still impacted by the initial stroke she had in surgery. Her cognition, language, toilet training and physical development all have hurdles to be overcome. Plus, she’s just a normal five year old girl: picking out her favorite clothes, exploring her world, meeting new people. We just finished building a “big girl” bed for her, and she now never wants to leave it. So many more worlds lay ahead as her medical journey begins to fade into the past.

From a fight for her life, to a bright unknown future: this road isn’t even close to finished. Caring for Scarlett has been about this strange and incredible story, and I can only wonder how she’ll surprise us next.

Find helpful caregiving tips and resources, honoring the dedication and daily challenges of caregivers everywhere in our Caregivers Community.