Ten months ago, during the longest of nights, Ned Rice sent an email to strangers sharing his family's unthinkable dilemma. These were doctors from all over the country who had never seen or treated his 3-year-old daughter. Winnie had a brain tumor. That's how Rice, the Phillies' assistant GM, dealt with it.
He had to gather as much information as possible.
“I still have never Googled medulloblastoma,” said his wife, Kayleigh Rice. “Because I can't stand it. And I'm also an analytical thinker, but I can't do that when I get too emotional.”
Everything about this felt impossible. Winnie lost her balance several times, and now her parents had to make a sudden and important decision. Doctors at Children's Hospital of Philadelphia (CHOP) told the Rices that Winnie could not be treated with radiation. she was too young Radiation-induced neurocognitive impairment will prevent her from living an independent life as an adult. However, her chances of survival were higher with radiation therapy.
Ned Rice sought a second opinion from another major children's hospital. They told him it would be reckless not to use radiation, the known best treatment, even if there were long-term effects. Rice negotiated player contracts worth hundreds of millions of dollars, a high-stakes process that blended objective evaluation with subjective hand-wringing. But this was completely different.
It was a parent's worst nightmare.
Then Rice saw the email. Richard Graham, a neuro-oncologist at Cincinnati Children's Hospital, sent a lengthy response to one of Rice's cold calls. “I was really panicking,” Rice said. “He doesn't even know who I am. He has his own patients and his own life,” Graham shared his advice. He became a frequent go-to for Rice.
These small, thoughtful moments added up.
An unexpected gift at your doorstep. Video from Winnie's classmates. More responses came from out-of-town doctors who would never meet Winnie. Family and friends who gave up everything to care for her two brothers. Even more gifts. The nurses not only cared for Winnie, but also her parents.
“It keeps coming at me over and over again,” Rice said. “There are a lot of people who want to help, and everyone is doing it in their own way.”
Ms. Rice called her former boss. These were nothing like the late-night talks he often had with Matt Klentak while running the Phillies' baseball operations. But it felt normal, even though Klentak was working for the Milwaukee Brewers and Rice was on leave from the Phillies.
The phone call was cathartic. Through the Instagram account the Rices created to document their battle with cancer, Klentak was kept up to date with Winnie, allowing them to quickly dig into what was on Rice's mind. Ta. The number of followers has also grown to over 700. Friends of friends of friends now reply to posts with “Go weenie go!” This account is a raw look at life with childhood cancer. For Ned and Cary, it's become a way to express their complex emotions.
Best of all, a door was opened. “Caregiver burnout is a common phenomenon,” said Jane Minturn, Winnie's neuro-oncologist at CHOP, “and[Ned and Carey]have been working together to limit this.” . Winnie knows she is sick, but does not understand what a brain tumor is. That burden is shared by everyone around her.
That is immeasurable. Klentak could feel it sometimes during late night conversations. It's isolated. But Rice began to carry the goodness of those who entered Winnie's world.
“I didn't really empathize with what he was going through,” Klentak said. “And I think very few people can do that. But that doesn't stop people from wanting to help.”
The first signs of distress were not surprising. Winnie was a happy, healthy 3-year-old learning to move faster. That meant stumbling from time to time. However, Ned and Cary noticed that their daughter's balance was not improving. It was getting a little worse every week. They made an appointment with their pediatrician last December.
He threw a cotton ball to Winnie across the room. Winnie was happy with the game. She had to bend down to get them. She staggered. The pediatrician also agreed that something was wrong. He wanted her to see a neurologist at CHOP. The next appointment was in 5 months. He suggested the Rices go to the CHOP emergency room. Not because it's urgent, but to allay immediate concerns.
They took Winnie on December 21, 2023.
“Sure enough, within minutes, five neurologists were in the room,” Dr. Rice said.
Winnie had no other symptoms. Doctors scheduled an MRI scan in three weeks. It could be a muscle disease. Maybe it was the dizziness. The Rices visited their family for Christmas, and Winnie vomited twice. CHOP rescheduled the MRI for Dec. 29, but that morning Winnie threw up again. She stumbled a few more times.
During the MRI, the doctor calls Ned and Cary. He pointed to the screen. Winnie had a large tumor in her brain. Winnie was given a sedative for an MRI scan. Doctors wanted to perform surgery immediately to remove the tumor. It was 4pm on a Friday, a holiday. The procedure lasted 4 hours. It takes a week to find out if the tumor is cancerous.
Everything spiraled quickly.
“It's been a long process, but it was definitely the lowest point,” Rice said. “For the first few days, you take your very happy, healthy, kind girl to an outpatient MRI scan. When she wakes up, you think, 'Will I ever see her again?' Probably. It was really difficult. ”
Winnie was then diagnosed with medulloblastoma.
Four days after brain surgery, Carrie lies with Winnie in the CHOP ICU. Winnie still could not move or speak. (Courtesy of the Rice family)
During his first visit to the ER, before everything escalated, Rice was on the phone with Dave Dombrowski. Yoshinobu Yamamoto's camp had instructed each team to make the last and best offer for their star free agent. Dombrowski gave the number to Rice, who passed it on to Yamamoto's agent, Joel Wolff. That night, Yamamoto signed with the Los Angeles Dodgers.
Rice did not say where he was.
The day Winnie underwent surgery, Rice called Phillies general manager Sam Fuld. He told him what was going on. Dombrowski was out of the country on a rare vacation. Rice spoke with the Phillies' president of baseball operations shortly after the new year.
“See you when you're done,” Dombrowski told him. “Take everything you need. We'll cover you completely. Don't worry about anything.”
A few hours later I got a call from John Middleton. The Phillies' principal owner offered to connect the family with a doctor. Ms. Cary is a lawyer, and her firm, Hungry, Aronchick, Segal, Pudlin & Schiller, told her to take as much time as she needed. The Rice family was lucky. They had the means to pay for the treatment and plenty of time to give Winnie their attention. Friends offered to help the family with anything they needed, but what they needed was a cure for cancer.
All they wanted was normalcy. It was an uncomfortable situation that didn't necessarily have to be unpleasant.
“We had all these wonderful types of villages popping up,” Cary said. “I kept calling. I kept texting. Even when I couldn't get back to them. I'm just grateful that we're all the same people. We're still living together, cancer-free. We want to feel normal. We want to have hope for a normal future. The worst thing we can do is do nothing or say nothing. .”
Winnie sits on the bed at CHOP between treatments. (Courtesy of the Rice family)
Winnie lived on the third floor of CHOP for nearly eight months. The Rice family chose to oppose radiation. However, her treatment (alternating chemotherapy and autologous stem cell transplants) was so grueling that she was hospitalized for most of the treatment. Ned and Cary work 24-hour shifts with Winnie. The ships passed through the night without much interaction.
They found a community within the hospital.
“These nurses are more than just nurses,” Cary said. “They're therapists. They're friends. They're cheerleaders.”
One of Winnie's nurses, Heidi Turner, only worked nights. That meant bonding late into the night. Winnie was discharged from the hospital on August 23rd. On their last night at CHOP, Turner handed Cary a letter to Winnie.
“I’m going to miss you so much,” Cary told Turner. “I'll be stopping by and I'd be happy to see you.”
She looked at Carrie. The nurse replied that she did not want to see him again.
“And it was such a strange feeling that it just stuck with me,” Cary said.
Rice, who has been with the Phillies since 2016, remained in touch with player agents and rival team executives last offseason, but no longer serves as the team's primary point of contact. The Phillies have begun negotiating a three-year, $126 million extension for Zack Wheeler with Wheeler's agent, BB Abbott, of Wasserman. By January, Rice and Abbott had regular talks about Winnie, starting with 30 minutes and culminating in a deal with Wheeler.
“You're never what you want to be for a family that's trying to talk about this,” Abbott said. “Because you can't do that.'' It's so depressing to think, “My 3-year-old daughter would have to go through this.'' It is difficult for parents and families to know exactly what is going to happen. Day, night and hospital. I watch little girls lose their hair and get sick. All these things I knew were ready to happen. ”
For many years, Mr. Abbott has raised awareness of childhood cancer research through the Rally Foundation and the National Children's Cancer Foundation. “I just wanted to be more of a sounding board for him,” Abbott said. The Rice family did not hide Winnie's illness. It was more of an open secret. Abbott decided to help out.
Near the end of spring training at the Phillies' complex in Clearwater, Florida, he asked Wheeler if he would lend his name to a fundraiser for the National Childhood Cancer Foundation. Everyone knew it was for Winnie, but no one needed to say it. This rumor spread to the team's front office and support staff. Dozens of Phillies employees had their heads shaved or had orange stripes painted in their hair. The players made a donation to the foundation.
Relief pitcher Matt Stram's wife, Megan, organized a gift from the Phillies' wives and girlfriends. “It's an incredibly huge and outrageous gift wagon for Winnie,” Rice said. He met Stram's wife later that summer at the team's family day.
“You look amazing,” Rice told her.
With Winnie in the hospital, Rice watched from afar as the Phillies rose to first place this year. “Banatic!” Winnie would say to her father every time the furry green mascot appeared on screen. The baseball season has a certain rhythm. It's monotonous, but includes certain checkpoints. The Rice family had no such thing with Winnie. There were no regular updates on her prognosis. We won't know how successful her treatment was until a scan sometime in December.
Their focus was unique. Let's get through today.
“Winnie, there's something about her,” Cary said. “She has such a tiny little voice and is so sweet and gentle in everything she does. We always thought of her as this little delicate flower, but she's a beast.”
Winnie attended her 4th birthday party. (Ashley Blair Photography)
Two weeks ago, Winnie had a birthday party. Since Winnie's immune system is still at risk, the Rices held it outdoors, at a playground near Schuylkill River Park. They had bagels and coffee and did face painting. Cary handed out stuffed foxes to all the kids as party favors. “Mr. Fox” was Winnie's constant companion at the hospital. People often sent letters to Cary's house whenever Winnie threw up, so there were a lot of letters at Cary's house.
This was a celebration of Winnie and the village that formed around her.
“This year we were surrounded by about 85 friends who supported us in various ways,” Cary said.
Winnie's hair has started to grow back, but she wore a purple knit hat to cover her head at the party. Everyone could see the three purple flowers painted on her forehead.
However, Winnie felt unwell near the end of the party. She went to the emergency room with croup. Another challenge. But she's been here since she was 4 years old.
She got her face painted and went to the ER.
(Top image: Dan Goldfarb/ The Athletic. Photo: Ashley Blair Photography)
