Unwavering joy during a life-threatening fight: Parker’s story

September is Childhood Cancer Awareness Month

In May 2020, during the COVID-19 pandemic, 5-year-old Parker was diagnosed with cancer. This gave Parker and his parents, Heather and Adam, even more reason to hunker down together at home.

They would often watch the movie “Sing” together, where Parker discovered his new favorite song: “I’m Still Standing” by Elton John.

I’m still standing
Better than I ever did
Looking like a true survivor 
Feeling like a little kid 
Don’t you know that I’m still standing 
After all this time
Picking up the pieces of my life
Without you on my mind
I’m still standing! Yeah, yeah, yeah

This song became Parker’s anthem as he entered 15 months of cancer treatment at the Hyundai Cancer Institute at CHOC. He still requests to listen to it daily.

Excessive sleeping and puffy eyes

Parker is kind-hearted, joyful and silly. He loves music, technology, books, swimming and spending time with friends and family.

In late April 2020, Heather and Adam noticed that their vibrant, active son was becoming increasingly lethargic. He was taking frequent naps during the day for the first time in over a year and was sleeping two to three hours longer each night — often waking up with puffy eyes. Then, he started complaining of feeling pain while eating.

Heather and Adam contacted Parker’s pediatrician.

Parker and his parents, Heather and Adam

They were referred to CHOC Hospital for an abdominal ultrasound. That day, radiologists discovered that Parker had a pericardial effusion — 600 mL of fluid around his heart. He was immediately transferred to the Julia & George Argyros Emergency Department to have the fluid drained and determine a cause.

After a week at The CHOC Padrinos Cardiovascular Intensive Care Unit and many tests from various departments, a mass was found near Parker’s thymus. In late May 2020, Parker was diagnosed with acute t-cell lymphoblastic lymphoma.

Under the care of CHOC oncologist Dr. Carol Lin, Parker began outpatient chemotherapy at the Cancer Institute to treat his lymphoma.

Seven months later, while still undergoing intense chemotherapy, Heather and Adam were informed that Parker had also developed acute myeloid leukemia. Parker’s oncologist and course of treatment would need to change. Immediately, Parker began inpatient chemotherapy and would later receive a bone marrow transplant in June 2021 under the care of Dr. Rishi Chavan.

Highs and lows

Heather and Adam were thankful to have access to such high-quality care at CHOC, just 20 minutes from their home. Since Parker’s cancer diagnosis, Parker and his parents have spent a total of 164 days of inpatient treatment at CHOC.

Parker during his inpatient hospital stay at CHOC

“The reality of life revolving around cancer treatment is a lot to process,” says Heather as she reflects on Parker’s treatment. “As you can imagine, this experience has had many highs and lows.”

The lowest, Heather and Adam say, “was seeing Parker at his sickest — knowing that he was suffering in ways they couldn’t begin to understand.”

Parker never complained.

“Throughout this journey, we’ve learned what a strong, resilient and positive person Parker is,” says Adam. “Parker’s joy was infectious, even when he was fighting for his life.”

Home away from home

At CHOC, Parker had quite the fan club.

From custodial staff, nurses, technicians and everyone in between, Parker’s joyful spirit prompted many special activities and gifts.

One nurse even gifted Parker an “Octonauts” face mask – from his favorite T.V. show.

Some of Parker’s favorite activities at CHOC included visiting Seacrest Studios and spending time with musical therapists from The Cherese Mari Laulhere Child Life Department. Parker would often request to have “I’m Still Standing” played for him.

“So many people at CHOC took the time to really know Parker and the things he loved. They went out of their way, often beyond the duties of their job, to make him feel special,” said Heather. “Every level of staff did such an amazing job at helping our family feel at ease during a very challenging time.”  

Parker during a visit to Seacrest Studios at CHOC Hospital

Because of all the positive, supportive relationships Parker’s family was able to build, CHOC Hospital became their home away from home.

They also had a village of friends, family, and employers that supported them through Parker’s cancer journey.

To other families that may be going through a similar medical journey, Heather and Adam warn that since no cancer journeys are the same, what might work for one family, may not work for another. However, they do advise to just take each day as it comes.

Heather and Adam also note the importance of trusting the expertise of your medical staff and working with them to give your child the best possible care. Good communication and rapport can do wonders for creating a positive care experience.

Looking ahead

On July 31, 2021, after being discharged following his bone marrow transplant, Parker rang a shiny gold bell at CHOC Hospital to signify the end of his cancer treatment. It was an emotional and special celebration.

“It will forever be one of the most memorable moments for our family,” says Heather.  

What’s next for Parker? Kindergarten.

Parker, Heather and Adam celebrating Parker’s bone marrow transplant day

For Heather and Adam, their focus will be slowly reintegrating to their lives outside of the hospital.  Because of Parker’s transplant recovery, the activities he can participate in are limited. Parker is homeschooling this year, and Heather and Adam are helping him return to the life of a typical 6-year-old. He especially enjoys outdoor picnics with his family.

Heather and Adam’s biggest hope is that Parker will continue to live cancer-free.

“We hope that he may enjoy all the normal ups and downs of growing up without the struggle and sacrifice that accompanies cancer treatment. We want him to live a long, joyful and cancer-free life,” said Heather and Adam.  

I’m still standing 
Better than I ever did
Looking like a true survivor 
Feeling like a little kid 
Don’t you know that I’m still standing 
After all this time
Picking up the pieces of my life
Without you on my mind
I’m still standing! Yeah, yeah, yeah

At CHOC, every advancement in pediatric cancer treatment is another step toward preserving the magic of childhood.