‘It’s Surprisingly Liberating Not To Have Hair’

Ella Landesberg never thought she was the type of person to write a blog, but she changed her mind about that after recently being diagnosed with leukemia.

The 17-year-old Horace Mann School student from Manhattan has been chronicling the ups and downs of her experience battling the disease on her blog, “Ellameryland” (http://ellameryland.blogspot.com/). Until late this past summer, the primary things Ella, who became bat mitzvah at Park Avenue Synagogue and attended Camp Kinder Ring for several summers, had on her mind were her beloved Phillies baseball team, senior year and college applications. But now she is undergoing intensive chemotherapy and keeping her readers abreast of the complicated specifics and technical terminology of her treatment.

“The number one reason [that she started her blog] is that I hope one complete stranger reads it and becomes inspired to never give up hope no matter how much sh*t life throws at you. I’ve always clung to the fact that life goes on and there’s always a tomorrow and no one knows what’s going to happen tomorrow so at the very least you shouldn’t complain about today,” Ella wrote in her first post.

She told The Jewish Week that the blog is also a way for her to work through her feelings about being sick. Although she characterizes herself as being quiet around people she doesn’t know and “not a big talker,” she finds that she can be candid in her writing.

The blog has been a way for Ella to reflect on how her life suddenly turned upside down when a week before she and her twin brother Noah were due back at Horace Mann for their senior year (she also has a younger sister, Maia), she was having unexplained fevers at night. She had felt a bit tired during the summer, but she thought that was from her busy days as a summer camp counselor for young children.

Having recently returned from a family trip to Aruba, her parents Amy and Dave thought that perhaps she had contracted an unusual virus while there. Dr. Stephanie Freilich, the pediatrician to whom Amy took Ella to be checked for the fevers, fatigue and headaches, is thankful that Amy “went with her gut,” and did not delay in having her daughter examined. “If there is anything of concern, you should bring it to the attention of a professional,” Freilich said. “Parents have a sixth sense that something is not right.”

“I was praying that it was just some crazy Aruba virus,” the doctor recalled thinking as she ordered tests for Ella. But she cautioned that parents should not be worried that every fever or ache denotes serious illness. Although leukemia is the most common cancer in children, only around 30 children per million in the U. S. are diagnosed with it per year. An average general pediatrician can expect to see no more than one case in every decade of his or her practice.

But in situations where there is a major disease like leukemia, “each day counts.” Fortunately, Freilich was able to get the lab to process Ella’s diagnostic blood work quickly and get her referred immediately to specialists at Memorial Sloan-Kettering Cancer Center (MSKCC). Ella began receiving treatment for acute lymphoblastic leukemia (ALL) the very next day.

MSKCC’s approach to ALL is to hit it fast and hit it hard. “I don’t think that waiting even a week after diagnosis is good medicine,” said Dr. Peter Steinherz, director of leukemia and lymphoma studies there. “The sooner you get the disease under control, the less damage there is, and the faster you can eliminate the leukemia cells from the bone marrow, the better the chances for remission,” he explained. Treatment is tailored to the risk group in which a patient is placed. Leukemia, which has virtually no genetic component, is not categorized by stages, because as a cancer of the blood, it has already spread throughout the body and is by definition “stage 4.”

According to Steinherz, 98 percent of MSKCC patients rapidly achieve remission from ALL in three to four weeks after being treated concurrently with multiple agents. “The first month is critical,” he emphasized. A rapid early response to the chemotherapy treatment is hoped for and is followed up by a couple of years of maintenance chemotherapy. A slow early response requires additional intensive treatment.

On her blog, Ella writes of central lines, mediports, complete blood counts and neutropenia. She documents her experience of undergoing regular spinal taps, bone marrow checks and blood transfusions, and of taking a whole host of medications in addition to chemotherapy. Steinherz explained that this is all part of the protocol of chemotherapy and the necessary supportive measures taken to protect the kidneys from damage that can be done from metabolic waste resulting from the breakdown of lymphocytes by the chemo drugs. Like all ALL patients, Ella has to have some chemotherapy drugs injected directly into her spinal fluid to counteract the blood-brain barrier and the possibility that leukemia cell sanctuaries could be hiding in the spinal fluid.

Ella’s self-described easygoing nature seems to be helping her cope with the extreme fatigue and susceptibility to infection that is keeping her out of school and away from friends. Additionally, she is dealing with the strong side effects of the steroids that are part of her chemo protocol. “The massive doses of steroids make you totally crazy, give you massive mood swings. So, it’s like a regular teenager but on steroids — literally,” is how her mother described the phenomenon with a touch of humor.

The hair loss that comes with chemo can be especially traumatic for self-conscious teenagers, but Ella seems to also to have taken the loss of her long, shiny light brown mane with equanimity. “My hair used to be one of my favorite attributes (everyone has one). I always got complements on how nice it was,” she wrote. “Honestly, now I’m kind of glad my hair is just gone because it saves me the trauma of having it fall out in clumps. It’s also surprisingly liberating not to have hair. My head feels very light.”

“Almost all patients lose their hair two to three weeks into chemo,” said Steinherz. Just days after her treatment began, Ella had her hair shaved off and her parents bought her a natural hair wig from Upper East Side hair salon owner Andrew DiSimone, who sells them at cost to sick kids and teens. He also gives people the opportunity to be a “hairy godmother” and sponsor the cost of a wig for a child or teenager through his “Free Wigs for Kids” program. Additionally, DiSimone volunteers his cutting and styling services once a week at the American Cancer Society’s free synthetic wig distribution program for children 18 and younger. “No child under 18 should have to pay for a wig,” the hairdresser commented.

Steinherz, who has been a pediatric oncologist for 40 years has seen the survival rates for his patients increase from 50 percent in the 1970s to greater than 80 percent for high-risk, and more than 90 percent for standard-risk patients today. When you get leukemia, “the whole situation changes overnight. Your life is upside down,” he said. “But there is a light at the end of the tunnel.”

Writing her blog, Ella says, has been a way for her to stay focused on that proverbial light and stay in touch with friends and family. “I think writing a blog has been great. … People seem to be really enjoying it,” she reflected.

She has also discovered that it is a means for her to connect with herself in this trying time. “I want to continue writing it for as long as I can. … I do think that writing a blog changed my ability to be open with people not only about my feelings, but about my life. I used to be pretty closed up about my emotions, but writing a blog changed that.”