This April, in recognition of Donate Life Month, On the Pulse shares the story of how a life-altering diagnosis put one family on a philanthropic journey to help others in need.
When Elliott Kaczmarek was 10 months old he came down with what his parents thought was a stomach bug.
“He wasn’t feeling well, but we didn’t think much of it at first,” said Jonathan Kaczmarek, Elliott’s father.
Just in case, the Kaczmarek’s called Elliott’s pediatrician. Initially, there was no cause for alarm. He had a mild fever and threw up a few times, and so their biggest worry at the time was dehydration.
“After a few days he started getting better,” said Nicole Kaczmarek. “Then his condition changed. He turned green and pale and was lethargic. It was then we knew he needed to go the urgent care.”
Doctors recommended Elliott get a chest X-ray and some other imaging, which led the family to Seattle Children’s Emergency Department.
Once there, the family received unimaginable news. An ultrasound revealed multiple large growths on Elliott’s liver. The next thing they knew, Elliott was taken into surgery for a biopsy of the masses.
“We went to the urgent care at 7 p.m. and by 11 a.m. the next morning, Elliott was in surgery,” said Nicole. “It was shocking and surreal.”
A devastating diagnosis, a home away from home
When the biopsy came back, the diagnosis was devastating. The masses were tumors. Elliott had liver cancer.
“Elliott was diagnosed with a liver tumor called hepatoblastoma,” said Dr. Patrick Healey, division chief of Transplantation at Seattle Children’s. “It’s the most common liver tumor in kids and typically occurs before age 2. It’s mostly a tumor of early childhood and is what we call sporadic because we don’t know what causes the disease.”
“According to the doctors, the tumors were growing at a very fast rate,” said Nicole. “Only a month earlier at his 9 month well-child check-up everything looked normal. We couldn’t believe it.”
Elliott was admitted to the intensive care unit (ICU). He started chemotherapy that day to shrink the tumor.
Seattle Children’s became a second home for the Kaczmarek family. They stayed in the hospital for more than a month undergoing treatment, which included six rounds of chemotherapy. However, due to the location of the remaining tumors, it became clear that Elliott would likely need a liver transplant.
“We knew there was a chance he’d need a liver transplant,” said Nicole. “Both halves of his liver had masses. The chemotherapy shrunk the tumors, but they couldn’t resect what was left of the tumors without compromising his liver function.”
In March 2015, Elliott was listed for transplant.
“It was devastating,” said Nicole. “We were hoping he wouldn’t need another major surgery.”
Only a month later, in April 2015, the Kaczmarek family received a call. They had a match. Elliott was going to get a new liver.
Road to recovery
The transplant was a success. After hours in the operating room, Elliott had a new liver and a new lease on life thanks to an organ donor.
“The donor family is always on your mind,” said Nicole. “We were given a gift that we will always be grateful for, but we know that our lifesaver was someone else’s loss.”
Elliott recovered well after the transplant. After the surgery, the family visited the hospital often for follow-up care. Weekly appointments turned to monthly appointments turned to quarterly appointments. Elliott got good news each time. Psychically, Elliott was getting better; emotionally the Kaczmarek family was regaining hope.
“Elliott is always happy when he has to go to the hospital,” said Nicole. “That’s a testament to the staff. He knows all the paintings on the walls and the sculptures after we basically lived there. It’s not a scary place to him. We love the hospital and the staff.”
A year later, Elliott hit a major milestone. He was cancer-free. His new liver was doing well and he was getting back to life outside the hospital walls.
Hitting an emotional milestone
After all the Kaczmarek family went through, they felt a strong desire to give back.
“We owe both the oncology team at Seattle Children’s and the transplant team so much,” said Nicole. “We live within 20 minutes of the hospital. Other families, they aren’t so lucky. Some families come from other states to receive care at Seattle Children’s. I couldn’t imagine what that would be like. We realized there was a need to not only support other transplant families through a guild called the Patrick J. Healey Guild, but also to support funding for pediatric cancer research.”
And so, Nicole and Jonathan found inspiration from two things they love to help give back to the hospital that saved their son’s life: wine and jewelry.
“Who doesn’t love wine and jewelry?” said Nicole.
Jonathan, a wine maker by trade, decided to host wine events and Nicole, who found a love for Stella and Dot jewelry while in the hospital, started hosting trunk shows, both to benefit Seattle Children’s Patrick J. Healey Guild and pediatric cancer research.
“We have a happy story,” said Nicole. “We’re one of the lucky ones. We knew we had to give back in some way.”
Healey may be the namesake of the Patrick J. Healey guild, which provides support for transplant families, but he likes to point out that it takes a village to care for transplant families.
“We meet families during a very difficult time,” said Healey. “It takes a multidisciplinary team with excellent team members to care for these patients. We have a great team here that’s committed to giving our transplant families hope and brighter futures.”
Fundraising for fun
This April, Elliott will be two years post-transplant. He just turned 3 years old, loves dancing, doing gymnastics and, according to his mom and dad, is a little chatterbox.
“He’s done great since transplant,” said Healey. “The first couple years after treatment are the most critical. If there is any chance of the tumor coming back, it occurs in the first couple years. For Elliott, making it two years is sort of like a graduation.”
Survival rates for pediatric liver transplant patients at Seattle Children’s are higher than the national average. Since 1990, Seattle Children’s has performed more than 267 liver transplants.
“Other than a scar, you wouldn’t know anything happened to him,” said Nicole. “It’s a traumatic event to go through, but life goes on.”
The Kaczmarek family plans to host more fundraising events and to build a community for families who have been through a similar diagnosis.
“You have a connection no one else understands,” said Nicole. “We want to bring the community together.”
To families currently going through treatment, Nicole and Jonathan offer some advice, “It’s okay to ask for help. You don’t have to do it by yourself. It’s a long road, and it’s a hard road, but you can get through it.”