September 27, 2006
On Education
In a Children’s Cancer Ward, Lessons Beyond A B C’s
By Samuel G. Freedman, NY TIMES

Right at 9:30, punctual as usual, Jessica Kuebler padded down the hallway and into the ninth-floor lounge at Memorial Sloan-Kettering Cancer Center. Anne Marie Cicciu was already waiting, her 5-foot-10 frame bent into a child-size chair, beneath a sign announcing, “Class in Session.”

Even after three years of teaching Jessica, Ms. Cicciu still conducted her silent inventory at the start of each school day. Peering through the glasses perched halfway down her nose, she noticed that Jessica was not tethered to an intravenous pole. And, though Jessica was still bald from the last round of chemotherapy, downy tufts of blond hair were returning to her eyebrows.

Jessica took a seat, her back upright, and Ms. Cicciu watched the posture with approval. When the girl held her pencil, her grip looked firm, another favorable sign. Ms. Cicciu knew from experience that the time to worry was when Jessica leaned on the tabletop, head drooping, pencil slipping, because that body language meant the treatment was overwhelming her.

Satisfied with what she observed on this September Thursday, Ms. Cicciu was ready to start her lesson. Sure enough, Jessica had done her homework assignment, a review sheet for counting by 5’s and 10’s. So Ms. Cicciu would be able to move ahead with the money games Jessica loved so much, counting out sums with cardboard coins.

The money games reminded Jessica, 7, of normal life back in the suburbs of St. Louis. They reminded her of her grandfather playing poker with his buddies and her parents working the cash register at their restaurant. Sometimes Jessica helped at the counter and in the kitchen.

Normality had first been interrupted in December 1998, when Jessica was 2 months old. Her liver was enlarged, the result of neuroblastoma, a rare cancer of the nervous system. In the years since, the cancer had manifested itself through tumors in Jessica’s stomach and adrenal gland, and she had gone through surgery, radiation, chemotherapy, remission, relapse and more remission and relapse.

Jessica came to New York and Sloan-Kettering in early 2002 to receive a different kind of treatment, regular infusions of antibodies from mice, which appear to stimulate the human body’s resistance to neuroblastoma. After 11 rounds of antibodies and much improvement, after a blessedly uneventful year of kindergarten in Missouri, she started complaining of a stiff neck and earaches. Her mother, Belinda Kuebler, then noticed that part of Jessica’s left cheek sagged with paralysis.

Just before Labor Day in 2005, Jessica returned to Sloan-Kettering, where doctors found a tumor at the base of her skull and ordered three weeks of chemotherapy. She celebrated her seventh birthday with other hospital patients and their families staying at Ronald McDonald House. And she started first grade with Anne Marie Cicciu.

Jessica was one of perhaps a dozen patients, from kindergarten through second grade, taught by Ms. Cicciu. Their lessons were part of a much larger and quite extraordinary program run by the New York City Department of Education. About 87 fully licensed teachers, serving 42 different hospitals, teach about 550 students at a given time. The students, like Jessica, often come from outside New York and may be in a hospital here for days or weeks or months, checking in or being released depending on their condition.

Bringing school to a children’s ward, especially in a cancer hospital, is believing that there will be a future. And it is knowing that what is most ordinary is most miraculous. For its part, Sloan-Kettering has been the site of Regents exams, graduation ceremonies and an annual prom.

Ms. Cicciu found her way there by a peripatetic path. Now 52, she had worked in fashion, catering and film before answering some inner idealist to become a teacher at Bellevue Hospital Center. She spent a decade there, working with students who were autistic, bipolar and borderline schizophrenic. She left when a teacher with more seniority transferred into Bellevue, bumping Ms. Cicciu to Sloan-Kettering in 2001.

“At Bellevue, my heart broke every day,” she recalled. “These kids didn’t know who their father was, didn’t know where their mother was. They were in and out of the foster care system. I had a sense of despair, but I also thought I could help them.

“Then I came here,” she continued, referring to the cancer hospital, “and I have an overabundance of love — mothers, fathers, extended families. These children are so wanted and yet they’re so ill. They are so perfect, and yet the loss.”

Her first year at Sloan-Kettering, Ms. Cicciu did not know how to read the bodily clues of fatigue and nausea. A few students vomited on the classroom table. Another time, a mother whose 6-year-old was dying asked Ms. Cicciu to pray with her at the bedside. The experience left Ms. Cicciu, a Roman Catholic, to take solace from the Buddhist belief in reincarnation. It was about the only thing, she said, she could hang onto.

But she did hang on, and she got better at ushering her children to the bathroom in time. She used storybooks, number charts and vocabulary games. Most of all, she used a lexicon of endearments and superlatives, in which every patient was a “little angel” and every completed assignment was “super-duper.”

Absent emergencies, Jessica spends a week or two at Sloan-Kettering three or four times a year, sometimes for treatment and other times for tests. During those stays, Ms. Cicciu has taught her how to count to 100 and how to read “Grover, Grover, Come on Over!” She has heard from Belinda Kuebler about how Jessica has been in remission since May.

On this particular Thursday morning, with Jessica all spunky in her sweat pants and baseball jersey, Ms. Cicciu finished the money game and pulled out a book. She thought Jessica still had some catching up to do in reading.

Ms. Cicciu handed Jessica a story called, “Are You My Mother?” It is about a baby bird trying to find its mother and its way home. Jessica went along painstakingly, with Ms. Cicciu pointing to each word. The bird asked a cow and a dog and a cat if any of them were its mother. Finally, the happy ending came, baby and mother reunited, headed back to their nest.

“Look at how well you read that,” Ms. Cicciu said exultantly, reaching into a bag of lollypops, the reward. “I know you’ll make it home, too, Jessie.”

Samuel G. Freedman is a journalism professor at Columbia University. E-mail: sgfreedman@nytimes.com.

St. Louis Takes Millions of Steps and Makes Thousands of Dollars for Kids with Cancer
November 29, 2004
3rd Annual Walk for Childhood Cancer Awareness

St. Louis, MO - St. Louis will once again be able to live up to its reputation as a leading philanthropic city on Saturday, September 25th when hundreds of people are expected to attend The N.C.C.S. Walk For The Children. This 3rd Annual Walk for Childhood Cancer Awareness will be held at Forest Park Pagoda Circle from 8 a.m. - noon.

All participants are welcome to join the festivities at a children's carnival tent and sponsor booths near the 1 Mile Walk N'Roll and the 3 Mile Course. Participants will receive awards for their fundraising efforts, and will also be eligible for door prizes. Registration will begin at 8 a.m. and the walk will commence at 9 a.m.

Jessica Kuebler, the national honoree, is just one of the nearly 8,000 children diagnosed with cancer each year in the United States. When she was just two months old, Jessica was diagnosed with Neuroblastoma. By age four, it seemed as if the battle was almost over. Jessica was in remission and only required yearly follow-up visits. Then, Jessica relapsed. Now, treatment causes Jessica to make frequent trips from St. Louis to New York for a clinical trial. She does so with bravery and determination. Despite the many lifestyle changes cancer has caused, Jessica always has a smile and words of wisdom for everyone she meets. She is a constant reminder of the importance of living each day to its fullest. The N.C.C.S. salutes Jessica and children nationwide who fight this diesease.

Major sponsors of the event include Curves for Women, Sam's Club, St. Louis Children's Hospital, Triune Communications, Centene Corporation, The Muny, The St. Louis Show, and Target stores.

As we celebrate childhood cancer awareness month during September, the N.C.C.S. invites you to join with us in helping kids with cancer by participating in the Walk For The Children. For more information on The N.C.C.S. Walk For The Children, please contact Julie Onesty at 314-446-5222 or at Email.

Stories From National Children's Cancer Society website

Children and Cancer

Nutrition for Children With Cancer

The Candlelighters Childhood Cancer Foundation

The National Children's Cancer Society

neuroendoscopy

Cancer Kids

From the Editor: This article is posted with love for all the children I knew while a volunteer, for 5 years, at The Ronald McDonald House in New York City