For 14-year-old Belle and her family, the month of September now holds a special meaning.
September is Childhood Cancer Awareness Month. Every September, advocacy organizations, healthcare institutions, patients and families honor and raise awareness for kids fighting childhood cancer.
“This month reminds us to be thankful for the amazing support of our family, friends and community, as well as all of the doctors and medical staff who have dedicated their life’s work to help cure and support kids battling cancer,” says Trish, Belle’s mom.
Belle was diagnosed just four months ago with Neuroblastoma, a type of cancer that starts in early nerve cells called neuroblasts. Normally, these immature cells grow into working nerve cells. But in neuroblastoma, they grow uncontrollably and become cancer cells that form a solid tumor.
Though her cancer journey is ongoing, Belle — along with mom Trish, dad Briklyn and brother Hudson — is taking it one day at a time. Thanks to the expert care and compassion from CHOC, each day is bringing new moments of joy to Belle’s family, even during a difficult medical journey.
Back pain leads to cancer diagnosis
Belle’s cancer journey began when she started feeling mild back pain. A week later, it had become so so intense that Belle would wake up in the middle of the night crying. Concerned, Trish and Briklyn took Belle to an orthopedic doctor but were quickly sent to the Julia and George Argyros Emergency Department at CHOC Hospital in Orange.
After an MRI, it was discovered Belle had two masses — one on her neck and one on her spine. They rushed her into emergency surgery at midnight to remove the mass from her spine as it was pressing on her spinal cord.
Belle was diagnosed with Neuroblastoma and began treatment at the Solid Tumor Treatment Program at the Hyundai Cancer Institute at CHOC, under the care of oncologist Dr. Elyssa Rubin.
Throughout her treatment, Belle has needed nine blood transfusions and counting, due to her counts of hemoglobin (a protein in red blood cells that carries oxygen) falling after chemotherapy treatments. She has a rare blood type and depends on donations from CHOC’s blood bank to help her feel better.
Because of her need for donated blood, Belle’s family has developed a new appreciation for people who choose to donate blood plasma and platelets.
“It’s touching to see pints of blood with a yellow donor tag showing that someone had come and donated blood specifically for Belle,” says Trish. “It is equally touching to see donations without the yellow tag knowing complete strangers donate blood for kids that they don’t know.”
CHOC offers support and distraction during a difficult time
During her outpatient visits for blood transfusions and inpatient hospital stays, CHOC quickly became a home away from home for Belle and her family.
The doctors, nurses, child life specialists and entire CHOC staff soon became like family to Belle. She became especially close with one of CHOC’s four-legged family members, Lois the resident dog.
“It wouldn’t be uncommon for the CHOC staff to be hanging out with Belle in her room chatting away about life just like Belle would be doing with her friends at home,” says Trish.
Belle is also able to participate in tons of fun programs and activities through the Cherese Mari Laulhere Child Life Program. The child life department at CHOC strives to normalize the hospital environment for patients and families.
Belle’s favorite activity is playing bingo at Seacrest Studios. She even hosts bingo games that are broadcast to all the patient rooms throughout the hospital.
“When you are at CHOC, you never know what each day will bring. One day you might meet Ryan Seacrest and the next you’re having pizza and a movie night,” says Briklyn. “It really does help when the kids get to have fun while they are going through such a difficult health experience.”
‘Life turned upside down’
Even with all the fun, Belle’s journey has had its fair share of challenges.
“The greatest challenge [with cancer] is having the life you know turned upside down and then watching your child go through such a difficult experience,” says Trish. “It feels like the cancer diagnosis is the domino that starts off a chain of events that touches every area of your life.”
Trish and Briklyn quickly realized how little they knew about cancer, and how they needed to take one day at a time. Cancer journeys are emotional roller coasters for the entire family, Briklyn says.
One important member of the family is Belle’s younger brother, Hudson. From the beginning, Trish and Briklyn made sure that he felt part of the journey, and not ignored or tossed aside.
“CHOC has helped us remember to prioritize him through this,” says Trish.
CHOC Child Life recognizes that siblings can often be affected by their brother or sister’s healthcare experiences. They offer specialized education and resources just for siblings.
CHOC’s dedication to care for both the physical and emotional well-being
Even in the difficulties, Belle has had many triumphs, and Trish and Briklyn make sure to celebrate each one.
Among the most memorable, Belle was able to walk in her eighth-grade graduation ceremony. From the beginning, Belle declared that she would attend her graduation no matter what.
The CHOC team had this important date circled on the calendar, and worked together to ensure that Belle would be healthy enough to be there. On graduation day, Belle was discharged from CHOC Hospital at 3 p.m. and was walking across the stage just hours later.
This type of perseverance is common for Belle. In fact, Trish and Briklyn — along with many others — have often been blown away by Belle’s strength. She has met every challenge with joy and positivity.
“Belle is our hero, and a hero to lots of other people as well,” says Trish.
How to cope with the cancer journey
To other kids who have cancer, Belle advises her family’s mantra: Take one day at a time.
“If you are feeling really bad one day, just tell yourself you won’t always feel this way. Things will get better,” says Belle. “On days when you do feel really good, make sure you plan things with your friends. Reach out to them because they want to be there for you and sometimes they just don’t know how. You especially need to reach out to your friends on your bad days when you aren’t feeling good. Even just a Facetime with a friend can really help brighten your spirits and give you hope and strength for the next day.”
To other families, Trish and Briklyn suggest the same: Take one day at a time.
“[The cancer journey] is a wild ride and focusing on each day can help when the challenges of the overall journey are overwhelming,” she says. “We also focus on the positive and try to make the best out of whatever comes our way. We also make sure to celebrate each milestone. These kids go through more than we can imagine in their fight with cancer.”
As Belle and her family look to the future, they’ll continue to do what they do best: take it one day at a time.
Belle will continue to receive treatment to beat her cancer. In the meantime, Belle’s family will continue to look for the hope and joy in each day – no matter how challenging they may be.
They look forward to more healing, more games of bingo and more cuddles with Lois.
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Learn more about the Hyundai Cancer Center at CHOC
CHOC Hospital was named one of the nation’s best children’s hospitals by U.S. News & World Report in its 2023-24 Best Children’s Hospitals rankings and ranked in the cancer specialty.
