Helping teens face cancer


When Tammy Kaitz’s son, Dylan Crane, was diagnosed with cancer eight years ago, the two started going to meetings of the support group Teen Impact at Children’s Hospital Los Angeles. Tammy had the opportunity to talk with other parents who were experiencing similar circumstances, and Crane, then 13, met a girl who had just completed treatment for the same illness.

“I used to say Teen Impact was my emotional life vest because it was really hard to stay afloat,” Kaitz said.

After six months of treatment, which included three rounds of chemotherapy and open-heart surgery, Crane’s cancer went into remission. The support of Teen Impact was what helped him overcome every obstacle, said Kaitz, who is president of the Teen Impact Affiliates board, which supports the program.

“My son used to be a very shy and insecure kid, even before he got sick,” she said. “He was a typical Jewish boy with hair all over his body. In chemo, he lost every ounce of hair, and he felt like he didn’t fit in anywhere. But at meetings, he would smile and interact. He felt like it was a place he fit in because everybody had gone through it or was going through it.”

Established in 1988 by Aura Kuperberg, the sister of Israeli Ambassador to the United States Michael Oren, Teen Impact serves cancer and blood disease patients and survivors beginning at age 8. Support groups meet twice a month at Children’s Hospital for preteens, teens, young adults, siblings and parents. Survivors who participated in the program, along with volunteer therapists, hospital staff and graduate students, facilitate the meetings.

Kuperberg, who serves as the program’s director, said there is nothing else like Teen Impact.

“It’s designed specifically for teenagers,” she said. “It’s hard enough sometimes to be a teen and be worried about exams and prom and where you’re going to go to college. A teen with cancer is now faced with chemotherapy, cancer and maybe surgery. It’s a very difficult stage of life to be faced with all these challenges.”

Kuperberg, who has a doctoral degree in social work from the University of Southern California, has been working at Children’s Hospital for 33 years. Her career there began when she was hired to run a training program to assist parents in coping with their children’s cancer diagnoses. After realizing that there was nothing specifically for teens, she decided to create Teen Impact. 

“The challenges they face are so unique, and there needed to be something just for them,” Kuperberg said.

A total of 7,000 families over the past 25 years have participated in Teen Impact. According to Kuperberg, about 25 percent of its members are receiving or have received treatment at other hospitals. 

In addition to meetings, the program — which relies solely on donations and grants — sponsors open mics, dinners, art and relaxation workshops, and karate and yoga lessons. There are adventure therapy retreats, where members go to ski, raft, sail and participate in other fun activities. Counselors and mentors, who were in the program before, offer guidance and assistance. 

Crane, now 22, still pops in on meetings. He is healthy and wants to create sound effects for movies professionally. Reflecting back on his diagnosis in middle school and then his transition to high school, he said, “It was really rough for me. I lost a bunch of friends. But at Teen Impact, I gained a lot of friends.”

The program gave him hope by showing him how things could turn out.

“When I started going, there were many older people [in the stage] I’m in now,” he said. “They were on the leaving end of it. They had gone through it since they were in high school, and they knew exactly what issues I was dealing with. They helped me out.” 

Kuperberg said that she and her co-workers — Betty Gonzalez-Morkos, clinical director of programs; Octavio Zavala, a leukemia survivor and program administrator; and licensed clinical psychologist Michael Wolkenfeld — do more than help patients cope. 

“We help them survive,” she said. “Expressing feelings and not feeling alone are tremendous benefits. If someone is isolated and not able to express deeper feelings, it interferes with adjustment. It’s important to have peer support.”

The next mission for Kuperberg and her team is to reach out to teenagers undergoing bone marrow treatments, who are in complete isolation for up to three months at a time. The program, which allows these patients to tune in to meetings and talk to peers via video chat, is expected to launch in September. 

All of this is important because the consequences of cancer echo long after the disease has been treated. Kaitz said that teens, who are starting a journey into young adulthood, are forever sidetracked by their illnesses. 

“This is a great program to not only give teens an emotional home but a footing,” she said.

And her son will always be grateful.

“When you get sick, people make you feel like an outsider, but Teen Impact brings you in,” he said. “They are a family because they all recognize what you’re going through, and you’re not going through it alone.”

To donate or learn more about Teen Impact, visit www.CHLA.org/TEENIMPACT.

A physician examines his profession’s blind spots


Jerome Groopman is a physician and clinical scientist at Harvard University, a specialist in AIDS and cancer. He’s also a writer for The New Yorker, with a successful and thought-provoking series of books on such topics as the intersection of spirituality and medicine and the importance of a physician’s intuition. His new book, “How Doctors Think,” asks the question: Why do doctors make mistakes and how can we keep them from happening?

Zachary Sholem Berger: How can patient and doctor better understand each other?

Jerome Groopman: Language is still the bedrock of medicine, despite all the great technology we have. I have a great doctor who listens very carefully, lets me tell my story; sometimes he interrupts to guide me. He is an active listener, explaining how he understood what I said and then explaining his thinking to me.

I’ve tried to make myself a better doctor. Like most medical students, I was not educated in thinking about thinking. At least I’ve become much more self-aware. Hopefully through the process of writing this book, I’ll think better for my patients.

ZSB: How can a doctor retrain himself or herself in order to listen more, be open to more diagnostic possibilities?

JG: By and large, we do a good job as doctors. We’re right about 80 percent of the time — our misdiagnosis rate is 15 percent to 20 percent, which is remarkable. But in about half of misdiagnoses, there is serious harm to the patient. My hope is that people in charge of medical education will seriously look at this and ask how can we do better in terms of educating doctors to think about their thinking and avoiding pitfalls.

This concern comes out of the experience of the patient. Because we doctors see so many people, thinking in the moment, we have to use shortcuts. If lay people become educated about how we think, with a few appropriate and directed questions, they could help us think better.

They should ask, “Could this be anything else?” or “I’m worried this is something serious.”

That is the genuine partnership.

ZSB: Could it be that the issue is not only thinking, but that doctor and patient need to understand how the other feels?

JG: There’s an integration of thinking and feeling; our emotions color our thought processes. In the real world, pitfalls in thinking are also influenced by our emotions. So you have to recognize feelings — to be self-aware and know there are going to be patients that you adore. That can impair your judgment, as well. The flip side is there are patients we don’t like, that we find irritating or provocative.

ZSB: Do patients have to recognize feelings, as well?

JG: It’s much harder to be a patient than a doctor. Research I mention in the book shows that patients pick up accurately if doctors like them or don’t like them. Patients need to defuse such a situation or open it up. There are patients who have said to me, “I can feel how devoted you are to me. I don’t want you to hold back.” If [on the other hand] you feel like the doctor’s irritating you, as I experienced myself as a patient, that’s a red flag.

ZSB: What does the Jewish tradition mean to you?

JG: I feel its importance very deeply. There is room in it for doubt and skepticism and questioning, not a sense of infallibility. There’s also extraordinary psychological insight with regard to motivation and character. For example, Maimonides talks about magical thinking, and the Torah talks about not believing in sorcery — often patients do have magical thinking, believing that they will be saved.

ZSB: Doctors, too — magical thinking guards us against admitting our ignorance.

JG: That’s right! So we should be challenging ourselves. Judaism impels you to challenge yourself. In the greatest debates in Talmud, you are able to challenge the greatest authorities.

ZSB: Do you feel recourse to spirituality, to God?

JG: As much as I wish there were miracles — boom, my hand’s fixed — those are fantasies. What Judaism teaches us is the knowledge that we’re created with reservoirs of resilience. We are created with the capacity of wisdom, which means judgment — not just knowledge, but the ability to assess and weigh that knowledge to make choices. Very integral in Judaism is the sense of hope. There is capacity to improve. What it takes is drawing on gifts of science with mobilization of the spirit.

ZSB: How do you mobilize the patient’s spirit?

JG: I try to draw from them wellsprings of their resilience, to lift them up as best I can. The diseases I deal with are serious ones. The confrontation with those kinds of realities requires energy and commitment and determination on the part of a patient.

ZSB: Is the spirituality you’ve talked about just a fancy name for trying to inject religion?

JG: I don’t think you need to be religious to have a sense of awe or to look within yourself or around you for nonreligious sources of strength, whether they be family, friends or therapists. I care for many people who are atheist and agnostic, and I certainly don’t have the hubris of imposing any religious sensibility on them. My job as a physician is to help them find that core of strength and focus.

Zackary Sholem Berger, a frequent Forward contributor, is a medical resident in the primary care program at New York University.

The Force Behind ‘The Group Room’


Some people take lemons and make lemonade. Selma Schimmel took a diagnosis of cancer and turned it into a vast support network which has changed the lives of thousands of people.

Schimmel, 45, is the creator and executive producer of “The Group Room,” the only nationally syndicated radio call-in show for cancer patients, their families and friends. The show grew out of Vital Options, a support group Schimmel started for young adults with cancer 15 years ago, following her own diagnosis of breast cancer. At the time, she was only 28 years old.

“I was a classic example of a delay in diagnosis, because doctors are not necessarily looking for cancer in young people like they do in older people,” Schimmel said. “Fortunately, Vital Options raised awareness of the prevalence of cancer among people ages 17 to 40, and now there are support groups across the nation.”

Schimmel was recently honored by Hillel at Valley and Pierce Colleges as one of their “36 Distinguished Individuals” who have made a difference in the Jewish community. In addition to numerous speaking engagements, she currently serves on Assemblyman Robert Hertzberg’s Women and Family Advisory Commission and works with the UCLA School of Medicine Doctoring Curriculum Program, assisting in a program to sensitize physicians-in-training to the emotional needs of their patients.

As if the radio show, public service and personal appearances aren’t enough, in May, Schimmel saw the release of her book, “Cancer Talk: Voices of Hope and Endurance from ‘The Group Room.'” Chapters outline the different areas of life affected by undergoing treatment for the disease, from diet and hair loss to the doctor-patient relationship and dealing with cancer in the workplace. It has already sold more than 11,000 copies in its first run.

For a key chapter addressing the spiritual side of being a cancer survivor, Schimmel sought input from her father, Rabbi Meier Schimmel, founding rabbi of Congregation Beth Meier in Studio City. Selma credits her father with giving her the strength to survive cancer and to help others; they became especially close during her student years at UCLA when, a year prior to Selma’s diagnosis, her mother died from a swift and brutal form of ovarian cancer.

“My parents were supposed to leave for Israel on a sabbatical and within weeks she was diagnosed and died,” Schimmel said. “My father then had to cope with my getting cancer. He’s had to go through a lot in his life but he’s always taught me by example that the greatest mitzvah is helping the sick. When I started Vital Options, he was the first one I went to and he opened up the synagogue to us. I knew a few other young adults at UCLA who were also undergoing cancer treatment and our first group met in Beth Meier’s social hall. Then an article ran about us in the Los Angeles Times and the group just exploded.”

Schimmel ran the group for almost ten years. By 1993, the combination of an economic recession, restricted funding going toward more high-profile diseases and the rise of other support groups for young adults took its toll on Vital Options. Seeing the growing trend toward Internet use and the explosion of online chat rooms, Schimmel decided to take the group in a new direction and launched “The Group Room,” which, in addition to its radio broadcasts, also “meets” online via its website (see below for details).

In producing the show and the website, Schimmel relies on not only her vast network of contacts established over 15 years in the field, but also her team of researchers including Vital Options’ Public Affairs Director Eric Rosenthal and Group Room Production Assistant Michelle Rand. Together they provide the most current information on advances in cancer research.

Regulars who share the airtime on “The Group Room” include medical advisors Dr. Michael Van Scoy-Mosher, co-chief of hematology and oncology for Cedars-Sinai Medical Center, Dr. Leslie Botnick, a radiation oncologist and CEO of Valley Radiotherapy Associates Medical Group, and Halina Irving, a licensed therapist in private practice. Prior to appearing on “The Group Room,” Irving ran the Vital Options support group for nine years and is both a breast cancer and Holocaust survivor.

“The universal concern is the fear of recurrence – will I remain cancer-free or not?” Irving said. “For young people, there are additional issues, for example, social isolation. When you are in your 60s, you are likely to have friends and colleagues who have been diagnosed with cancer, but among young people there is less support. Also, young cancer patients are just beginning their professional and financial lives; some are also starting families and a diagnosis of cancer interrupts all that.”

For these reasons, Irving advocates finding support from outside the patient’s immediate family, whether in therapy or by participating in programs like “The Group Room.”

“Even though patients get love from their families, they get the greatest support from people who are going through what they are going through,” she said.

Irving said the attitude towards cancer has changed markedly in the 10 years since her own diagnosis.

“There is much more openness, more freedom to speak about cancer,” she said.

“We just need to get the word out, especially about clinical trials. I am alive because of someone’s willingness to participate in one of these trials. We need to create a dialogue so people will understand they are not guinea pigs, that they will not be left without treatment. We have seen dramatic advances in the treatment of childhood cancers because 70 percent of children with cancer are involved in clinical trials. Yet only two percent of adults with cancer participate, mostly because doctors cannot keep track of all the studies. That’s where “The Group Room” can help.”

“The Group Room” is broadcast locally every Sunday between 1 p.m. and 3 p.m. on radio station KRLA 1110-AM. For national air times, call (818) 788-5225 or check out the website at www.vitaloptions.org.


Creating a Cancer Clearinghouse

What if you or someone you love were recently diagnosed with cancer? Wouldn’t it be a relief if you could go online and simply look up every ongoing clinical trial and all the current information about your particular form of the disease in a database?

That is the mission of Gary Kramer and his family, who are building the Joyce Foundation. Named for Joyce Kramer, Gary’s mother and a Jewish day school teacher who lost her battle against non-Hodgkin’s lymphoma in 1996 at the age of 52, the Foundation was created to provide information both via a fully-staffed hot line and the Internet.

Kramer, a longtime San Fernando Valley resident and owner of two ComedySportz franchises, admits it is an ambitious project.

“There are about 2,500 clinical trials going on at any one time, more than half of which are sponsored by the National Cancer Institute,” Kramer said. “There’s no way any one doctor can keep track of all those trials but that is what we will be doing; presenting information that is up-to-date and accurate.”

Kramer said the Foundation anticipates about half of the database will cover clinical trials. The other half will address conventional treatments such as chemotherapy and radiation along with their side effects and possible conflicts with other treatment protocols, as well as information on diet and experimental drugs. He emphasizes that the Foundation will give no recommendations, only information.

“We simply want to give people all the options, in language they can understand,” he said.

Since establishing the Foundation in 1997, the Kramer family, which hails from New Jersey, has recruited prominent local physicians for the project’s board of directors. Author and Harvard Professor Stephen Jay Gould also serves on the Foundation’s honorary board.

While family members back East seek medical specialists to review data and provide referrals, Gary Kramer is busy recruiting donations. The Foundation has been able to raise $75,000 over the past year, primarily from private
donations and fundraising events by ComedySportz’ improvisation clubs and Le Tip, a business networking group. So far, the Foundation has not been able to reach the desired goal of $500,000 to launch the database. “Right now the resource we need most is money. It is very expensive to have the staff to provide the services for what we’re trying to do and you can’t hire staff until you have the funding,” Kramer said. “But the need is so dire and there is nothing like it out there. For $500,000 we can save literally thousands of lives.”

Interested contributors can send donations to: The Joyce Foundation, P.O. Box 223, Lake Hiawatha, NJ 07034. For more information, call (888) 755-0100 or visit the organization’s website at www.cancerinfo.org — W.M.

Autism: The New Epidemic


Barbara and Sheldon Helfing never
expected to have one autistic child, much
less two. Their son Leland, now 5, was born
prematurely and began showing signs of a
neurological disorder before reaching his
1st birthday.

“Leland had very poor balance and he
wasn’t yet responding to us with words or
gestures,” Barbara said. “But initially autism
did not come up because he was clearly
interested in his surroundings and in other
people.”

Leland began getting help through the
state’s Early Intervention Program. However,
since the state agency did not require a
diagnosis prior to providing services, the
Helfings had no idea that their son’s
problem might be genetic. When Nathan
was born, the Helfings rejoiced in their
healthy new son, but by the time he was 18
months old, the heartbroken parents could
no longer hide from the fact that their
younger son had also fallen prey to the
disorder.

The Helfings are part of a growing trend that
is affecting the Jewish community in
unprecedented numbers. The statistics
most often quoted in past reports about
autism state that autism spectrum disorders
occur in four to five in every 10,000 births.
However, according to the Autism Society
of Los Angeles, a soon-to-be-released
report on children in the state of California
shows a 400 percent increase between
1986 and 1996 — or one in every 500 births.

In terms of the Jewish community, a study
being performed at Stanford University’s
School of Medicine is looking into how
families of Ashkenazi origin are affected
(see box). Researchers stress that so far
there is no indication that Ashkenazi Jews
have more of a tendency toward autism than
the general population. However,
professionals who work with autistic children
say the overall increase in cases has had a
definite impact on Jewish families.

“While I would not say the Jewish community
is any more hard hit than other communities,
we are certainly seeing plenty of Jewish
families with this problem,” said Dr. John
Lutzker, chair of the department of
Psychology and director of graduate training
at the University of Judaism in Los Angeles.
“I have contact with the (state-run) Regional
Centers and with the school districts and
they cannot put a lid on this. It is indeed an
epidemic.”

Dr. Sandra Kaler, a psychologist
associated with the Neuropsychiatric Unit at
UCLA, agrees.

“The Jewish community has been equally
struck by this and I think there was an
assumption we would not be,” Kaler said.
“Now when I go out to a Jewish preschool to
do an evaluation, I frequently see one or two
children with autism, where before it was
very rare to see more than one.”

Autism is a neurological disorder that
typically appears during the first three years
of life and includes disabilities or delays in
the areas of social skills, communication
and cognitive development. Children can
either be born with the disorder or develop
normally and then regress, usually between
the ages of 18 and 24 months. It occurs four
times more often in boys than in girls (one
reason why scientists suspect a genetic
link). About 70 percent of children with the
disorder also show some degree of mental
retardation. Autism is considered a lifelong
disability, but with early intervention many
children learn enough skills to lead
independent lives.

No one knows for sure what has caused the
skyrocketing numbers of children diagnosed
with autism. Because of the gender bias
and because so many families have more
than one child with the disorder, several
ongoing studies are focusing on the
existence of a genetic link or mutation.
Other scientists are examining
environmental factors like diet, vaccinations
and pesticide exposure.

Part of the rise in incidence may be
attributed to a change in the definition of
autism spectrum disorders. For many years
it was easy to tell children who fit the classic
diagnosis of autism: An inability to relate to
others, poor or no speech, violent or
self-injurious behavior, repetitive or
seemingly meaningless activities. However,
the diagnosis has evolved to include
children who relate fairly well socially but
who have delays in other areas like
language or fine motor skills. (This is
sometimes called pervasive developmental
delay, not otherwise specified or
PDD-NOS.) On the other end of the
spectrum are children who have solid
communication skills but find it difficult to
relate to other people, sometimes
becoming obsessed with a narrow range of
ideas or objects, a disorder known as
Aspergers Syndrome.

But Lutzker said the change in evaluations
cannot completely explain what
professionals are seeing in their offices.

“It’s an interesting dilemma: Is it that we are
more aware of autism or are there truly
more incidents? I’m inclined to lean toward
more incidents just because of the endless
number of children we are seeing these
days,” he said.

Lutzker, a behavioral psychologist, is a
strong advocate of the discrete trial training
method of treating children with autism.
Discrete trial training (also called applied
behavior analysis or ABA), was designed
by Dr. Ivar Lovaas of UCLA in the 1960s
and uses behavior modification with both
positive and negative reinforcement to
shape the child’s response. Other
developmental professionals prefer using
the newer “floor time” therapy. Created by
Dr. Stanley Greenspan, a psychiatrist at
George Washington University Medical
School, this teaching method is
child-directed — the therapist follows the
child’s lead in playing games and
performing activities that enhance the child’s
communication skills. Many autistic children
also receive speech and occupational
therapies.

Working out a successful treatment plan is
one of the many battles that parents such as
the Helfings find overwhelming at times.
Both their boys have different strengths and
weaknesses and each requires a program
that supports their needs. Therapy, including
a home-based ABA program for Nathan
and Greenspan sessions for both, often
takes up eight or more hours a day for each
child. Ironically, both Barbara and Sheldon’s
professional training makes them
well-suited to the task of raising children
with special needs; Barbara has a Master’s
degree in education (including a credential
in special ed) and Sheldon teaches
psychology at local community colleges.

Barbara said the hardest part is dealing
with family and friends who don’t seem to
grasp what life with autism is all about, the
constant toll taken on the family’s time and
emotions and finances as they research
every option for helping their sons. She tells
the story of a friend who called up in tears
because her daughter had missed out on
getting into a gifted class by two points on a
test. Barbara said it was hard not to laugh
because “I wish for one moment that Leland
or Nathan had a problem like that!”

“What it comes down to is our kids are in a
perpetual toddlerhood,” she said. “Their
mental age is not where their chronological
age is; that’s what makes it more taxing for
us as parents. Other parents spend a lot of
time talking about their kids’
accomplishments and what we talk about
may not seem like much. But the things
other people take for granted, we really
appreciate.”

The family has struggled to find their place
in the Jewish community. Currently they are
not affiliated with any synagogue. Barbara
said when Leland was a toddler she joined
a Mommy & Me class at a large
Conservative temple, but was disheartened
by the response of other mothers when
Leland finally attempted to speak.

“He was vocalizing, making these sounds
that weren’t quite words, but it was the first
time he had even tried to talk,” Barbara
said. “And I saw two mothers pull their
children away from him, like it was
contagious. Instead of applauding that this
child was finally speaking, they reacted like
he had a disease.”

To add insult to injury, when Barbara called
to tell the teacher she and Leland were
leaving the class, the teacher asked if she
could tell the other mothers that Leland was
a special-needs child unsuited to the
program. Barbara said the feeling she got
from the experience was that children who
were different posed a threat to the
reputation of the highly touted,
“academically enriched” program. The
rejection, she said, still hurts.

Sheldon is quick to point out that not all the
family’s experiences with synagogues have
been negative.

“There are some good programs out there,”
he said. “But the general population reacts
from fear — what you don’t know might hurt
you. The misnomer about autistic kids is
that they’re crazed and violent, when in fact
they are so locked inside themselves they
would not hurt anyone.”

Dr. Bryna Siegel, author of “The World of
the Autistic Child,” has seen many Jewish
parents during her tenure at both Stanford
and the University of California at San
Francisco. Siegel, who is Jewish, said the
emphasis on education and the high
expectations of parents and grandparents in
our culture makes it more difficult to accept
a diagnosis of autism.

“The problems Jewish families have in
coping with autism is by and large what I
see in most well-educated, upper
middle-class families,” Siegel said. “There
is a much greater sense of disappointment
in having a child with a disability as
opposed to a working-class family. And
there isn’t as much room in the Jewish
community for these children as, say, in the
Mormon community where they are seen as
a chance for family members to grow
spiritually through love and compassion.
Judaism really doesn’t have an outlook like
that.”

Siegel said that in some cultures where
large families predominate, having a
special needs child is less of a burden
because the work can be shared among
more people.

“But except for the Chassidim, Jewish
families are not having a lot of kids. For
those families, this child may be their only
one, and that can be hard,” she said.

The Los Angeles Jewish community has
been slow to respond to the recent surge of
families with developmentally delayed
children. Few programs exist to teach these
children Jewish culture and values. In the
San Fernando Valley, there are special
needs programs at Valley Beth Shalom,
Temple Judea and Kol Tikvah, but except
for VBS, these programs are limited to a
few hours one or two mornings a week. The
standards of admission for Jewish day
schools such as Abraham Joshua Heschel,
automatically eliminate many children with
disabilities, including autism. Other schools
will only take an autistic child if a one-to-one
aide is provided, which may be out of the
financial range for parents already pushed
to the limit by medical treatments.

The University of Judaism, however, recently
established a Master’s degree program for
people interested in working with autistic
and abused children, which will put more
knowledgeable, appropriately trained
teachers out in the Jewish community. For
those already in the field, the Bureau of
Jewish Education, at its recent Early
Childhood Education conference, hosted a
seminar on Autism and Aspergers for
educators along with several classes on
evaluating children for speech and language
delays.

But the Helfings’ best advice to other
parents of autistic children is this:

“Know your child, their strengths and
weaknesses,” said Barbara. “Know the law,
or hire someone who does. The truth is, in a
situation like this the playing field is not
even. To the degree you’re informed about
your child, the disorder, what resources are
available and about your rights is the
degree to which you will be able to help your
child succeed.”

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