Maddy Ray: An Inspiration for Those Fighting Hepatoblastoma

Maddy Ray: An Inspiration for Those Fighting Hepatoblastoma
December 03, 2018

On July 10, 2018, Luke and Katie’s world got turned upside down when their six-month old baby girl, Maddy Ray, was diagnosed with a hepatoblastoma, a rare cancerous tumor that originates in the liver.

“I noticed her stomach was hard. It seemed odd around four months old, but our doctor at the time told us it was nothing,” Katie said. “Once she was diagnosed with the tumor at our local children’s hospital, everything started happening so quickly.” Doctors immediately began treating Maddy Ray through chemotherapy just five days after her diagnosis in hopes that the tumor would shrink enough to remove it. After three rounds of chemotherapy, Maddy Ray’s liver started to fail.

“We were staring straight down the barrel of a liver transplant. It was the only alternative option,” Katie said. Maddy Ray was admitted into the immediate care unit of the hospital. Luke and Katie were tested to see if either of them would be a match to donate their livers to their precious little girl. “We would do anything for our baby,” Katie said. “It was nice to have the option of being a liver donor since I was confirmed a match, but it was alarming because I wouldn’t have been able to care for her if we both had to undergo surgery.”

However, Luke and Katie had remained optimistic that there must be a surgeon who could remove the tumor to avoid a transplant. Katie had joined a Facebook group called “Hepatoblastoma Warriors” to find reassurance and hear stories from other families in similar situations. “Dr. Riccardo Superina’s name came up time and time again, even my brother-in-law had heard of him,” Katie said. Taking matters into her own hands, Katie reached out to Lurie Children’s to see if Dr. Superina, a pediatric surgeon who specializes in hepatobiliary surgery and transplant, would be able to resect the tumor.

The news was good – Dr. Superina would be able to remove the hepatoblastoma without a transplant.

“Oddly, Maddy Ray started doing great out of nowhere and then we received this wonderful news,” Katie said. “Why wouldn’t we do this? Let’s go for it. She was still on the liver transplant list though, so we just hoped and prayed we didn’t get a call for a transplant on our way there.” The Zick family decided to take the trip from their home in Madison, Wisconsin to Chicago to meet with the team.

By examining Maddy Ray, Dr. Superina was confident in his ability to resect the tumor. Only one roadblock stood in the way from preventing the Zick family to follow through with this procedure: insurance. Since the surgeon at their local hospital said he would attempt to remove it, Katie and Luke had to jump through many hoops to ensure Maddy Ray could be treated by Dr. Superina. “When your child has a rare condition, you get one shot. It’s not a time for attempts of guessing,” Katie said. “This was the most emotional three days of my life. The best of the best could do it, but we may not be able to have him as our surgeon. I have to be able to put our daughter in the arms of someone who can give her the best chance possible. If Dr. Superina can’t do it, no one would be able to.”

Maddy Ray and Dr. Superina

With the help of Transplant Surgery team members, Joan Lokar, Advanced Practice Registered Nurse, and Cindy Santos, Office Coordinator, Maddy Ray was able to come to Chicago to have the procedure done by Dr. Superina on October 1, 2018. This eight-and-half-hour surgery was the longest moment ever for the Zick family. “Every hour and a half I got a phone call from the operating room to update me. I would count down those 90 minutes each time,” Katie said. The operation went smoothly with over 80 percent of Maddy Ray’s liver removed. “Just eight days later, we left the hospital with a smiling, healthy baby who was capable of sitting up. She hasn’t missed a beat since we returned home,” Katie said.

Maddy Ray is now nine months old. She is significantly happier and so relaxed. “She still cannot crawl since chemo has weakened her muscles,” Katie said, but with only three rounds of chemotherapy remaining, Luke and Katie are looking forward to watching their baby regain her strength. “Other than a scar and check-ups to make sure hepatoblastoma hasn’t reoccurred, the only challenge we’re facing is weening her off of her feeding tube. She doesn’t understand how to eat, so it may be hard but not impossible.”

Luke and Katie Zick are so gracious for their chance to be treated in Chicago by Dr. Superina. “Lurie Children’s has a calming, credible team of people who reassured us what we were feeling was normal and Maddy Ray was going to be okay even though the odds seemed stacked against us this whole time,” Katie said. “They let us know what to expect, what’s normal and what wasn’t. I appreciated hearing the ‘why’ being explained anytime I had a question.”

“When we started this journey, Luke and I kept wondering how we were going to pay all this kindness and gratitude forward,” Katie said. “How do we make meaning out of this? How do we use this blessing to help others?” As a way to support those who may be in a similar situation, Katie has some wise words to share. “There’s going to be no part of it that is easy, even the good days have a sense of fear and sadness because you may wonder why that can’t be your life all the time,” Katie said. “You have to question your own instincts. Let your gut instinct take over. The moment we met Dr. Superina we knew what we had to do. Our gut instinct led us exactly where we needed to go.”