The balloons celebrated the fact that 14-year-old Emma Katzen is now cancer-free.
Heartworks, the local group that performs random acts of kindness, spearheaded the balloon celebration. The group members also presented the family with a video they made (with family friends) showcasing dozens of caring individuals expressing their joy for Emma’s good news.
The outpouring of support has meant so much to the Katzens. Emma’s parents, Christin and Judd, they said they don’t know where to begin to thank everyone who has been there for them since Emma was diagnosed more than two years ago. From the girls working behind the counter at the local Dunkin’ Donuts to the CEO of Landmark Hospital and hundreds of people in between — people who have gone out of their way to help the family and make an unbearable family crises a bit more manageable.
It was in Jan. 2012 when Emma, a seemingly healthy seventh-grader at Barrington Middle School and Pop Warner cheerleader, fell ill with an ear infection that wouldn’t go away.
A short while later, she returned to her physician’s office with worsening symptoms and he quickly sent her to the emergency room at Hasbro Children’s Hospital. When she arrived, Emma was in near organ failure and in septic shock.
Doctors examined Emma and ran tests and returned with a diagnosis: Leukemia.
Her condition was so severe that she was put in a medical coma for about five days in the pediatric intensive care unit. For the first couple of days, people were unsure if Emma would survive.
When her condition stabilized, she was moved to the fifth floor of the hospital and became familiar with the staff. She spent a good part of a year there while doctors tried to find the best protocol for treatment.
“Every time they added a new medicine, she had a reaction,” Christin said.
And the reactions weren’t good. Some of the drugs caused seizures, anaphylaxis shock, rashes.
Emma was diagnosed with CMT — Charcot-Marie-Tooth disease — a rare neurological disorder and degeneration of motor nerves that results in muscle weakness and atrophy in the extremities. It has affected her ability to walk and presently she uses crutches to move about. It is because of the side effects that Emma has been too weak to walk at times.
Another side effect from medication affected her bones with a painful condition. She has had surgery on both her hips and is scheduled for another hip surgery later this month.
“Our fight with cancer is over but the fight to get healthy is ongoing. Cancer almost took a second role to the side effects,” Christin said.
That first year, Emma spent more nights at Hasbro than in her own bed in Barrington. Her hospital room was covered in cards, drawings and her shelves were lined with flowers, gifts and other get- well items.
Through it all, Emma stayed positive and was always polite and almost apologetic to hospital staff.
“She would be sick to her stomach and say she was sorry to nurses,” her mother said.
In turn, nurses, doctors and other hospital staff went out of their way to show genuine compassion to the young girl.
“There was a resident from India and he had never heard of an Awful Awful from Newport Creamery. He told Emma he would have his first one with her and a few months later, in he walked with two Awful Awfuls. One for him and one for Emma,” Christin said.
Emma recalled the time another doctor came to her room and painted her fingernails.
More than two year’s later, the entire experience remains crystal clear in their memories. And one thing that has also been present and clear is the outpouring of support — from the first day February 3, 2012 when they walked into Hasbro, to the sea of balloons on the lawn last week.
“We are fortunate to have many talented caring health care professionals who live in town and helped us through it all, not to mention our friends, family and even strangers who dropped gifts and meals on our doorstep,” Judd said.
Judd recalls coming home from the hospital and always finding something on the doorstep to cheer him up as he entered the quiet house.
The help they received was especially meaningful in the care for their son Sam, now a freshman at Pace University.
“We were fortunate that Sam was at an age where he could be on his own a bit. We took turns at the hospital with Emma but through our friends and neighbors we knew Sam was cared for at home,” Christin said.
The saying, “It takes a Village” hits home for the Katzens.Emma’s hairdresser came to the hospital and cut her long brown hair in a short bob so she looked her best and made the transition easier when she lost her hair during chemotherapy. She would not take payment for the hair cut.
Their house painter came and let the dogs out; their handyman friend came and organized their basement. People did what they could to help out.
Barrington Pop Warner held two blood drives in Emma’s name and the first drive in April of 2012 was so well attended that the RI Blood Center staff ran out of supplies to take blood from potential donors.
Harbor Animal Hospital held a fund-raiser and sent the family to Disney World for five days last year with the proceeds. (The family has three dogs).
The yoga community in town banded together and held a yoga session at the Barrington Congregational Church. Dozens of people came out and did yoga together — many of them Emma’s friends who had never done yoga before.
The staff at CVS Pharmacy in Barrington went above and beyond to help Emma. A pharmacy tech made a house call with some medication that Emma needed.
“You rarely see that kind of service these days and we are so grateful for the extraordinary efforts they made,” Mr. Katzen said.
Even the Barrington Police Department sent her a card signed by the entire force along with a gift card.
Emma was an honorary skipper at the 2013 Leukemia Cup Regatta and the featured patient at the 2013 Hasbro Children’s Hospital Play-Doh Ball.
The teachers, administrators and guidance counselors at the middle school and Barrington High School have gone above and beyond to help Emma with her school work.
They would come to the house and tutor Emma during the summer when she was healthy enough. Connie Oswald, one of many middle school teachers who helped, is known to the family as “Angel Oswald.”
“Mrs. Oswald would come over and if I was tired I would lie down and we would do the work together at my own pace,” Emma said.
Emma’s kindergarten teacher Kerri Livingston has mailed a handwritten note to her former student every few weeks for the past two years. She was also Sam’s first grade teacher and came to his high school graduation last June to support him as well.
“We realize how fortunate we are to have such a great school community. When we were focused on Emma’s health, they took the stress out of worrying about her education,” Christin said.
Emma is now a freshman at the high school and goes to class for about half the school day, depending on her pain tolerance and energy level. Always a good student, she is keeping up with her work and is also tutored at home. She is hopeful to be back at school full time by the start of her sophomore year.
Change is hard but good
Friday, April 4 was an odd day for the family. It was the first Friday in 60 months that Emma didn’t go to the Tomorrow Fund Clinic at Hasbro for chemo treatments.
She said she will miss her “family” at the Tomorrow Fund.
“You are telling me I don’t have cancer anymore, then why don’t I feel happy?” Emma asked the doctor.
He told her she is not alone with that feeling. It is all she has known for more than two years. He told her she needs to just be Emma, not Emma who has cancer.
It is something she will slowly learn, especially as she gains strength. Through this ordeal she has wanted to be treated like everyone else and with time knows this will all be a memory.
“I wish I could thank everyone. There are so many people that have been amazing. If I had choose one person who has been there every step of the way, it is my friend Madeline Durkin and her family. From the moment I went to the hospital to Friday when they brought the video over, she has been there and always treated me like everyone else,” Emma said.Madeline would come over and sit with Emma who would fall asleep at times. When she would wake up, Madeline would still be there.
Although she has a journey ahead to become fully healthy, Emma is thinking of her future and didn’t hesitate when asked what she would like to be when she grows up.
“I want to help others and become a pediatric oncologist,” she said.
— By Joan D. Warren