Young girl fights for her life

When doctors told Judd Katzen the best case scenario facing his daughter Emma was leukemia, he couldn’t believe what he was hearing.

“I thought they had made a mistake,” he said. “I thought they can’t be saying that.”

It was a Friday night in early February at Hasbro Children’s Hospital. Prior to that day, Emma’s life was that of a normal seventh-grader. A tennis player with an interest in photography, she finished her fourth year of cheerleading with the local Pop Warner squad last fall.

But for Emma and her family life took an abrupt change of course about 10 weeks ago. A couple of days before she was admitted to the hospital, Emma’s mom, Christin, said her daughter came home early from school with a fever.

Emma had just finished a cycle of antibiotics for an ear infection, something Mrs. Katzen described as “kind of unusual,” and the school nurse said she didn’t like her color.

Mrs. Katzen said she could tell her daughter wasn’t feeling well but it seemed more like the flu than anything alarming. Mr. Katzen said he started to believe it was something a bit more severe after spending Friday morning with Emma. She was drinking excessively, said Mr. Katzen, and her sense of balance was gone.

“It was just something different,” Mr. Katzen said. “I knew it wasn’t good.”

The two went to see Emma’s lifelong pediatrician that afternoon. Much like the school nurse, said Mrs. Katzen, the doctor didn’t like Emma’s color. At first glance, it seemed like Emma might be suffering from hepatitis. The doctor recommended she go to the hospital, where it didn’t take long for the severity of Emma’s situation to become apparent.

About a half-hour after walking in alongside her father, Mr. Katzen said his daughter was in and out of consciousness and was “basically in total organ failure.”

The following minutes and hours brought nothing but a steady flow of bad news. Mr. Katzen was joined at the hospital by a friend who is also a physician. As lab results rolled in, Mr. Katzen said he watched his normally stoic friend continually shake his head.

To provide some perspective, the average human has a white blood cell count between 4,500 and 10,000 per microliter. At one point, Emma’s count dipped to 200. It was a figure Mrs. Katzen texted to family friends, including another physician, who are now living out of state. They thought the information was a mistake, said Mrs. Katzen. When they found out it wasn’t, they drove to Providence.

Emma was suffering from acute septic shock. A pre-cautionary call was placed for a possible liver transplant.

Mrs. Katzen’s described those hours as something akin to an out-of-body experience. She said it was “surreal” and she kept waiting for the doctor who was going to bring the good news. The unrelenting flow of negative test results, Mrs. Katzen said, was like being on the wrong end of a pop-up punching bag.

“There was no white blood cells. There was no immune system,” Mr. Katzen said. “Every measurement that determines someone’s health was at the critical low end.”

The information that night came from a variety of sources, the result of multiple specialists working with Emma. The leukemia cells in Emma’s body turned up during blood work. It was a diagnosis that, while far from benign, wasn’t the worst possibility facing Emma. Had it been hepatitis, for example, Mr. Katzen said Emma’s liver was too damaged to recover.

Emma’s initial stint in the hospital would end up lasting about seven weeks, the first several days of which were spent in a medically induced coma.

Mr. Katzen said he was praying for his daughter to start treatment as doctors worked to stabilize her organs. Some of the nurses tending to Emma worked with a sole focus of changing the dozen or so IV bags hanging around her.

It was during this time that the Katzen’s experienced the first outpouring of community support that hasn’t ceased to this day. People began showing up at the hospital, said Mrs. Katzen. Some were friends, some were strangers. Some brought a cup of coffee, others just came to offer a hug.

In early March, a pre-scheduled blood drive at Davies Career and Technical Center was held in Emma’s honor. A teacher at the school is also President of another nearby Pop Warner league. That drive brought in 93 pints.

More locally and perhaps the most overt display of support for the Katzen family was a second blood drive, which was coordinated by Emma’s Pop Warner teammates and coaches. Two of the event’s organizers were Chip Miller, President of Barrington’s Pop Warner League, and Pat Martel, the team’s cheerleader coordinator.

“We were trying to do something that would be helpful but not imposing on her family,” Ms. Martel said.

“There’s not much you can do but she was using an enormous amount of blood product so we approached her parents and asked if it would be possible to dedicate this to her. They were on board immediately. Her parents are incredible.”

Mr. Miller said the goal heading into the April 2 drive — held at Barrington Middle School — was 50 pints. Should the drive hit its goal, said Mr. Miller, hopefully the tally would be as high as 70.

Not only did the drive hit its mark, it more than doubled it.

At 7:30 that evening, four and a half hours after the event started, a line of donors had to be turned away because there wasn’t going to be enough time to get to them. The Rhode Island Blood Center ended up taking in 148 pints that night along with more than 50 registrations for bone marrow donors.

“It was very emotional and it was very rewarding,” Mr. Miller said.

“It was very nice to see people come out and take care of it and do it. Hopefully it gives the Katzens some sort of feeling that they’re not in this alone.”

Those who couldn’t make the blood drive or were among those turned away can still donate in Emma’s name by visiting any Rhode Island Blood Center around the state and using the code “3128.”

Outside of giving blood, Mrs. Katzen said community members have used just about every route possible in lending a hand to her family. Her pediatrician stopped by the hospital in the early morning hours following Emma’s initial admission. Doctors and specialists who worked with Emma those first few weeks became regular visitors to her room.

“Coffees, cards, dinners, hugs, phone calls, texts, Facebook. You name it. And again, people that we didn’t know we’ve gotten dinners from. People, we have no idea who they are,” Mrs. Katzen said.

“You know how they say it takes a village to raise a child? It takes a village to save a child and this is definitely the village to be in ... I don’t know how to say thank you. I don’t even know how to express what everyone has done.”

Emma’s classmates

Mr. Katzen said one of the best thing he’s seen are the cards from Emma’s classmates. Some have come from Emma’s friends while others have been written by classmates she might not know that well. They wish her well, even if they’re not close, and say they hope to hang out.

Emma’s middle school classmates have further shown support by producing blue rubber bracelets that bear the message “Stay Strong Emma.” There are students who have bought one. There are students who have bought 10. Emma’s older brother, Sam, is a senior at Barrington High School. He and a few of his friends recently pitched in to buy Emma a new iPad.

Meanwhile, Emma’s fight with leukemia continues. She recently finished the first 32 days of her protocol, known as the “induction.” It’s a tough stretch of chemotherapy with no shortage of side effects.

Through it all, however, Emma has stayed strong.

“[She’s] tougher than you and me. I’ll you that,” Mr. Katzen said. “I would have folded a long time ago.”

Mr. Katzen also had positive things to say about Hasbro Children’s Hospital. He said the hospital was quick in putting together a packet of information to help get a second opinion. Mr. Katzen then added you can find fault anywhere if you look hard enough but the situation comes down to one thing.

“The bottom line is, Hasbro saved her life.”

Emma, who is currently scheduled for treatment once a week, said it feels nice that everyone has been so supportive.

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