A Bright Future: Amy’s Story

The greatest thing about spending as much time as I do at CHOC Children’s is meeting new people – especially others like me who have bright futures thanks to CHOC.

Let me introduce you to Amy. She loves preschool, just celebrated her fourth birthday, and has come a long way since her time in CHOC’s Small Baby Unit.

AmyThough her party was low-key – some cake and fun at a local lake – Amy’s recent fourth birthday party held special significance.

After all, her parents wondered when she was born if she’d ever see her first birthday, much less her fourth.

“She is our little miracle,” says mom Vanessa.

Weighing just 1 pound, 9 ounces, Amy was born after just 23 weeks gestation in 2010.

By the time Vanessa, a first-time mother, learned the pain she was experiencing was actually early labor, it was too late for doctors to attempt to stop Amy from coming.

Once the tiny infant was born, doctors questioned her survival, and a terrified Vanessa and her husband, Alex, prepared for the worst.

Luckily, CHOC’s Small Baby Unit was ready for Amy. She spent 144 days in the special unit, a part of the hospital’s neonatal intensive care unit dedicated to babies born extremely premature.

There, CHOC physicians and nurses offered dedicated and coordinated care, while Vanessa stood by, ready to nurse and cuddle. Alex diligently visited his daughter, stopping by every morning at 3 a.m. after his work shift ended.

“The nurses let me help with her,” Vanessa recalls. “I learned to change her tiny diaper, bathe her and feed her.”

So, when it was time to go home, Vanessa felt capable of caring for her still tiny baby. Equipped with a feeding tube, oxygen supply and heart-rate monitor, Amy still had a long way to go.

Fast forward four years, after feeding therapy and some procedures, Amy is a typical little girl, with big brown eyes and a joyful smile. She attends preschool four days a week, and is outgoing and gregarious.

“We love CHOC because we have Amy, and we don’t know how pay back this miracle,” Vanessa says.

A Bright Future: Amy’s and Emily’s story

I’m more than half way through my 50-week CHOC gratitude tour, and I just met two others who want to join me in thanking the hospital for our bright futures: Meet Amy and Emily.

Sisters Amy and Emily believe they IMAGE_2have two birthdays: the days they were born, and the days they were diagnosed with cancer before beginning treatment at CHOC Children’s.

Each day is met with equal celebration. Amy and Emily, ages 29 and 18, see the anniversary or their diagnosis – their cancerversary – as the day they began the long road toward health.

“We think that’s the day of them starting to get better,” says their mother, Denise Justiniano. “We made that day a good memory. We eat dinner together as a family and make a fun time out of it.”

Both women received treatment as children at the Hyundai Cancer Institute at CHOC. Amy spent six months in the hospital after being diagnosed with lymphoma in 2001. Diagnosed with leukemia in 2008, Emily still receives treatment at CHOC’s outpatient infusion clinic.

And today both women are moving forward: Emily graduated from high school last June and is now in her second semester at college. About seven months ago, Amy gave birth to her second daughter.

“The nurses and doctors at CHOC are amazing,” Amy says. “Not only do they offer the best medical care, but they are empathetic and caring, and offer emotional support in a way that you would expect only a friend to. If it weren’t for CHOC, I wouldn’t be here today. They made a huge difference in my life and helped me become the person that I am today.”

Watching two children battle cancer was heart-wrenching, but Denise credits CHOC staff and fellow families and patients with helping to ease the experience.

“When we first arrived at CHOC with Amy, everyone came out of their room as we were coming down the hall,” she says. “They’re were talking to us, patting us on the back. It was like a warm hug.”

And their time at CHOC made an impression on more than Amy’s and Emily’s health: Amy is a nurse at a local hospital, and Emily is pursuing a career as a nurse practitioner.

“For us, it was the nurses who made CHOC home for us and made it manageable and joked with us,” Denise says.

And CHOC’s impression has extended further into the Justiniano family: Inspired by the CHOC child life staff who helped her sisters cope with hospitalization, a third daughter, Sarah, volunteers at CHOC and is pursuing a career in the child life department.

 

A Bright Future: Pacer’s Story

There’s no shortage of cool patients in these parts, and I just met another who has CHOC to thank for a bright future.

Pacer’s first family meal didn’t happen until he was 4 years old. Until then, he ate through a feeding tube, never experiencing a Thanksgiving feast, Halloween candy or birthday cake. But thanks to his commitment and five weeks of treatment at CHOC’s Multidisciplinary Feeding Program, Pacer learned to eat, and now he can down more chicken fingers than this always hungry bear!

Meet Pacer in this video, and hear from his parents, Quinn and Mekell, about why they traveled all the way from Montana to Orange County to get Pacer the treatment he needed to ensure a bright future.

More stories about CHOC patients:

  • CHOC Patient Inspired to Become CHOC Doc
    At 6 years old, Vanessa Avina was more interested in viewing the monitor for her echocardiography (heart ultrasound) than watching a cartoon during her doctor’s visits. Her CHOC pediatric cardiologist ...
  • CHOC Walk in the Park: Justin’s Helpers
    As it celebrates its 25th anniversary, CHOC “Walk in the Park” has raised more than $24 million to fund education, research and adoption and utilization of the latest technologies to ...
  • A Bright Future: Ian and Micah’s Story
    Even though I’ve been hanging around CHOC Children’s for a long time now, I am continually surprised by the courage, tenacity and strength of the patients I meet. It’s especially ...

Meet CHOC’s first patient, Ken Spicer

Of all the people I’ve met since I first visited CHOC Children’s almost 50 years ago, Ken Spicer is one of my favorites. After all, he is CHOC’s very first patient!

Ken and I go way back: He was first admitted to CHOC on Oct. 5, 1964 at age 12 because of a birth defect in his legs, and he remains a steadfast advocate CHOC almost 50 years later. Best of all, he and I are still friends.

In this video, Ken reflects on his experience at CHOC and how his time at Orange County’s only children’s hospital helped him build a bright future.

More stories about CHOC patients:

  • CHOC Patient Inspired to Become CHOC Doc
    At 6 years old, Vanessa Avina was more interested in viewing the monitor for her echocardiography (heart ultrasound) than watching a cartoon during her doctor’s visits. Her CHOC pediatric cardiologist ...
  • CHOC Walk in the Park: Justin’s Helpers
    As it celebrates its 25th anniversary, CHOC “Walk in the Park” has raised more than $24 million to fund education, research and adoption and utilization of the latest technologies to ...
  • A Bright Future: Ian and Micah’s Story
    Even though I’ve been hanging around CHOC Children’s for a long time now, I am continually surprised by the courage, tenacity and strength of the patients I meet. It’s especially ...