Skinnier arms and legs and exhaustion to the point of taking naps. These were the initial signs that left Jamie wondering if there was something wrong with her 5-year-old son, Jacob. Weeks later, the most alarming sign appeared: blood clots in his urine.
Jacob was taken to his local pediatrician and it was there a large lump on his lower left abdomen was discovered. Knowing it was something much more serious, Jacob’s pediatrician immediately sent Jacob and his family to CHOC at Mission Hospital.
“Our world was changed”
When Jacob arrived, an X-Ray and a CT scan were ordered to further observe the lump on his abdomen. The results showed a tumor on his left kidney and over 30 small tumors growing on his lungs. Dr. Kenneth Kwon, an emergency medicine specialist, delivered the news that Jacob has Wilms tumor — a type of kidney cancer commonly found in young children. Jacob’s cancer was stage 4 and had spread to his lungs.
“We were devastated,” Jamie recalls. “In just a few hours, our world was changed.“
Jacob was transported via ambulance to the Hyundai Cancer Institute at CHOC Hospital in Orange. Instead of feeling scared or worried, Jacob enjoyed watching Toy Story during the journey alongside his newly acquired rocket ship balloon and stuffed monkey. These small comforts during an anxious situation are one thing that helps differentiate a pediatric hospital.
“The first time coming to CHOC was extremely difficult,” Jamie says. “But the nurses and staff could tell we were struggling with the news and they did everything they could to make us feel comfortable. They also explained everything that was happening to Jacob in a way that we could understand.”
Dr. Josephine HaDuong, a CHOC pediatric oncologist, recommended chemotherapy for six weeks and then re-evaluating the growth of the tumor. Jacob came to CHOC’s Dhont Family Foundation Outpatient Infusion Center once a week to receive his initial chemotherapy. Though the process was hard and challenging, especially during a pandemic, Jacob put on a brave face every time he came in. He eventually created bonds with his child life specialist, nurses in the clinic and Dr. Agnes Horvath, a pediatric oncologist/hematologist at CHOC.
After the initial six weeks, chemotherapy had shrunk the tumor on his kidney by almost 50%. The rest of the tumor could be removed by surgery.
“The day of surgery was extremely tough on my husband and I,” Jamie says. “Having to experience your young child go through something like this is already hard, but to add a pandemic on top was even harder. However, seeing Jacob’s resilience was what got us all through it.”
In the spring, Dr. Peter Yu, a CHOC pediatric general and thoracic surgeon, successfully removed the rest of the tumor on Jacob’s kidney. However, Jacob was not in the clear just yet; there were still the small tumors on his lungs that needed to be tackled.
For the next 31 weeks, Jacob underwent stronger chemotherapy five days a week as well as radiation that targeted the tumors on his lungs. During that time, there were many trips to the hospital for scans, labs, appointments and a few inpatient stays. There were hard and tough days, but Jacob remembers the simple moments of receiving toys from the Cherese Mari Laulhere Child Life Department and getting his favorite snacks.
“In those months, we leaned heavily on our family, friends, faith and the expertise of our oncology team,” Jamie says. “They are the ones who helped us see the light.”
Bright, ringing moment
Towards the end of summer, Jacob received one of his last CT scans. The only items that showed were two small spots on his lungs that doctors deemed to be scar tissue.
Jacob was declared cancer-free.
A few short days later, Jacob was able to participate in a special tradition to help celebrate the news: ringing the bell.
Each patient who completes their last chemotherapy treatment at CHOC is cheered on by nurses, doctors and staff, and has an opportunity to ring a bell to signify the end of a long journey. The plaque on the bell reads:
Ring this bell, three times well.
Its toll to clearly say, my treatment is done, this course is done, and I’m on my way!
“It was an emotional moment for the whole family,” Jamie says. “We have all been waiting for this day! Jacob could not stop smiling.”
Since that moment, Jacob has now celebrated his 6th birthday. He’s excited to play sports again and hopefully start school in January.
“Even though it was an extremely tough journey, there is good that came out of it,” Jamie says. “Jacob knows he’s strong and brave, and we couldn’t be prouder of him.”