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					butterfly                                                                                            spring 2011 | Volume 32 | number 1

                                                                                     “Everyone was going down the wrong road,”
                                                               Katie, at home in   says Dave. “They were looking for juvenile
                                                               Sioux Falls.
                                                                                   rheumatoid arthritis or lupus, not leukemia,
                                                                                   because an earlier blood test in Sioux Falls had
                                                                                   ruled out leukemia. There were no conclusive
                                                                                   findings at Mayo Clinic, so the family traveled to
                                                                                   the University of Minnesota looking for answers.
                                                                                   Doctors immediately admitted Katie, who was
                                                                                   becoming more ill, and diagnosed leukemia after a
                                                                                   blood test.
                                                                                     “In many ways, the diagnosis was a relief,” says
                                                                                   Pam. “Katie only weighed 20 pounds and was not
                                                                                   standing much because her legs hurt so badly.
                                                                                   She had been sick from January until June and




                                                                                                        “   This isn’t the
                                                                                                      prognosis it used to be.
                                                                                                         We have reversed

AT ToP: With her mom by
her side, Katie receives
chemotherapy.
ABovE: Katie’s team of
                                                                                                       the statistics.
                                                                                                                          ”
                                                                                   was suffering a lot.” Despite the fear evoked by
                                                                                   the word “leukemia,” Pam was comforted by the
doctors and nurses wishing                                                         doctor who told her, “This isn’t the prognosis it
her well on her cancer                                                             used to be. We have reversed the statistics.”
journey.
                                                                                     Katie’s parents signed her up for a clinical trial
                                                                                   which determined her treatment protocol. Doctors
                                                                                   then began an intensive regimen of chemotherapy
                                                                                   and radiation. “There were benefits to being part
leukemia changed my life                                                           of the clinical trial because the
To a 4-year old, childhood cancer might not look so bad. But to 30-year-old        doctors were sharing
Katie Sonnichsen, looking back on 26 years as a cancer survivor is cause           information across
for celebration. “As a result of my treatments and the love and support of my
family and friends, I am here 26 years later to share my story,” she says.         (continued on                           inside
  Katie was diagnosed with Acute Lymphocytic Leukemia (ALL) in 1984. She           page 3)                                 SurvivorShip
does not remember much about the situation except that her joints hurt, her                                             Thriving after cancer
glands were swollen, and she had enough severe abdominal pain to warrant
                                                                                                                        New begiNNiNgS
an appendectomy. When the appendectomy failed to resolve the issues, and
                                                                                                                             Hospital opens
severe headaches were added to the equation, Katie’s parents, Pam and Dave,
drove from their home in Sioux Falls, S.D. and brought her to Mayo Clinic, yet,                                   SurvivorShip SerieS
                                                                                                                  2011 conference highlights
even a spinal tap did not reveal the disease.
                                                                                                                       Come fly with uS!
                                                                                                                           Time to Fly 2011
                                    tterfly
board of Directors
ChAirperSoN
Cindy Chandler
viCe ChAirperSoN
                                  Bu                                                                                                      SPRING 2011 | VOLUME
                                                                                                                                                                   32 | NUMBER 1




                                                                                                                                                                                              about this issue
                                                                                                                                                  down the wrong road,”
                                                                                                                         “Everyone was going

Brian Burke                                                                                   Katie, at home in
                                                                                              Sioux Falls.
                                                                                                                      says Dave. “They were
                                                                                                                      rheumatoid arthritis or
                                                                                                                                                 looking for juvenile
                                                                                                                                                lupus, not leukemia,
                                                                                                                                                    test in Sioux Falls had
                                                                                                                      because an earlier blood
                                                                                                                                                     were no conclusive
                                                                                                                      ruled out leukemia. There
Chief meDiCAl ADviSorS                                                                                                 findings at Mayo Clinic,
                                                                                                                       the University of Minnesota
                                                                                                                                                   so the family traveled
                                                                                                                                                                           to
                                                                                                                                                        looking for answers.
                                                                                                                                                                       was

John Wagner, M.D.
                                                                                                                                             ly admitted Katie, who

                                                                                                                                                                                              Earlier this spring, I attended the 6th annual survivorship
                                                                                                                        Doctors immediate
                                                                                                                                                               leukemia after a
                                                                                                                        becoming   more ill, and diagnosed
                                                                                                                        blood test.

Julie Ross, Ph.D.
                                                                                                                                                             was a relief,” says
                                                                                                                           “In many ways, the diagnosis
                                                                                                                                                       20 pounds and was not

                                                                                                                                                                                              conference on the U of M campus. (You can read more
                                                                                                                         Pam. “Katie only weighed
                                                                                                                                                     her legs hurt so badly.
                                                                                                                         standing much because
                                                                                                                                                     January until June and
                                                                                                                         She had been sick from

Chief meDiCAl ADviSorS
emerituS                                                                                                                                         “  This isn’t the
                                                                                                                                               prognosis it used to be.
                                                                                                                                                  We have reversed
                                                                                                                                                                                              about this conference in this newsletter.) A woman
Mark Nesbit Jr., M.D.                                                                                                                           the statistics.
                                                                                                                            was suffering a lot.” Despite
                                                                                                                                                                    ”
                                                                                                                                                              the fear evoked by              came up to me that morning and told me that she was
Norma Ramsay, M.D.
                                                       by
                                  AT TOP: With her mom                                                                                                Pam was comforted by
                                                                                                                                                                                  the
                                  her side, Katie receives                                                                  the word “leukemia,”
                                                                                                                                                            isn’t the prognosis it
                                  chemotherapy.                                                                             doctor who told her, “This
                                                                                                                                                                 the statistics.”
                                                                                                                                                                                              celebrating her 34th anniversary of being cancer-free.
                                  ABOVE: Katie’s team
                                                        of
                                                                                                                             used to be. We have reversed
                                  doctors and nurses wishing                                                                                               her up for a clinical trial
                                                                                                                                Katie’s parents signed
immeDiAte pASt
                                  her well on her cancer
                                                                                                                                                       treatment protocol.     Doctors
                                  journey.                                                                                   which determined her
                                                                                                                                                          regimen of chemotherapy
                                                                                                                             then began an intensive

                                                                                                                                                                                               This woman was a young child in the mid 1970’s, and
                                                                                                                                                                                  part
                                                                                                                                                       were benefits to being

ChAirperSoN                                                                                                                   and radiation. “There
                                                                                                                              of the clinical trial because
                                                                                                                                                              the

                                   Leukemia changed my life                                                                   doctors were sharing

Russ Swansen
                                                                                                                  d
                                                                                        so bad. But to 30-year-ol
                                                                cancer might not look

                                                                                                                                                                        Inside
                                   To a 4-year old, childhood                                                                 information across


                                                                                                                                                                                               she was treated by Dr. Mark Nesbit. She was one of the
                                                                                        cancer survivor is cause
                                                                back on 26 years as a
                                   Katie Sonnichsen, looking                         and the love and support
                                                                                                                of my
                                                           result of my treatments                                            (continued on
                                   for celebration. “As a                            share my story,” she says.
                                                              here 26 years later to                                                                                     SURVIVORSHIP
                                    family and friends, I am                                                                  page 3)

eX-offiCio                             Katie was diagnosed
                                                              with Acute  Lymphocytic Leukemia
                                                                                                   (ALL) in 1984. She                                                Thriving after cancer


                                                                                                                                                                                               early — and rare — success stories in treating pediatric
                                                                                                             hurt, her
                                                                                      except that her joints
                                     does not remember    much about the situation                                                                                   NEW BEGINNINGS
                                                                                          abdominal pain to warrant

John Hallberg                                               and she had enough severe                                                                                       Hospital opens
                                     glands were swollen,                                  to resolve the issues,
                                                                                                                   and
                                                                the appendectomy failed
                                     an appendectomy. When                              Katie’s parents, Pam and
                                                                                                                    Dave,                                       SURVIVORSHIP SERIES
                                                               added to the equation,                                                                           2011 conference highlights
                                     severe headaches were                             brought her to Mayo Clinic,
                                                                                                                     yet,



NAtioNAl
                                      drove from their home
                                                             in Sioux Falls, S.D. and

                                      even a spinal tap did not
                                                                reveal the disease.                                                                                 COME FLY WITH US!
                                                                                                                                                                           Time to Fly 2011    cancer. Like our doctors today, Mark didn’t give up on
hoNorAry ChAirS                                                                                                                                                                                these children.
Tom and Melissa Lehman
                                                                                                                                                                                                Thankfully, success stories like hers are not as rare as
hoNorAry DireCtorS
Diana and Norm Hageboeck      they were decades ago. Thanks to research, great strides have been made in developing life-
life ADviSorS                 saving new cures for young cancer patients. There are now more than 300,000 pediatric cancer
Jan Humphrey
Del Johnson                   survivors in the United States. But, these cures often come at a cost. Survivors are at risk for
Deb Nesbit                    developing other cancers, heart problems, and other health challenges later in life. That is why
Jane Ramsland
Cal Simmons                   your support of research that studies the long-term effects of cancer treatment is so important.
Sharon Waller                     Enjoy reading about the impact your support has in creating better long-term outcomes for
meDiCAl ADviSorS              children battling cancer. You are truly making a difference.
John Kersey, M.D.
Phil McGlave, M.D.
Joe Neglia, M.D., M.P.H.
Brenda Weigel, M.D.
boArD memberS
                              John hallberg, CEO
Michael Baden
David Bestler                          @causejohn
Marci Carisch
Chris Conroy
Debbie Dworsky
Cari Erickson
Scott Erickson
Deb Gordon
Tom Gunderson
Jon Halper
Heather Hansen
Anne Hussian
Ranell Hamm
Susan Jepson
                             butterfly is published by CHilDren’s CanCer researCH FunD®
Patty Jones                                                                                                                                phoNe 952-893-9355                                                     web ChildrensCancer.org
Bonnie Juaire
Farley Kaufmann                                                                                                                            fAX 952-893-9366                                                          twitter @childrenscancer
Rebecca McDaniel                                                                                                                           toll free 888-422-7348                                                    Find us also on fACebooK
Mark Meadows
John Mendesh                                                                                                                               eDitoriAl iNquirieS If you have questions or comments,
Michelle Mesenburg                                                                                                                         please contact Kelly, 952-224-8481, or kschultz@childrenscancer.org.
Andy Naber
Keith Nelsen
Lisa Ovsak
                             about us
Paul Perseke                 Children’s Cancer Research Fund is a national organization dedicated to eradicating childhood
Carolyn Riley                cancer by funding the pioneering efforts in the prevention, diagnosis, treatment and cure of childhood
Kenneth Saldanha
Steve Sear                   cancers at the University of Minnesota, a leader in pediatric cancer research. Many discoveries
Janet Stacey                 funded by Children’s Cancer Research Fund have revolutionized the way childhood cancer is treated
Dan Statsick
Kathie Taranto               worldwide. The organization also provides education and supports quality-of-life programs for the
Carmen Thiede                patients and their families who come for this world-class treatment.
Matt Thompson
Mark Walinske


2 I   butterflyspring      2011                                                                                                                                                                                                         ChildrensCancer.org
(continued from page 1)
a larger network of hospitals across the        than you,’” she laughs. “Yet, no
country,” says Pam.                             matter my size, I am extremely
  Katie was hospitalized for much of            thankful for everything I have
her initial treatment. over two years,          been given and the love that
she received an aggressive treatment of         surrounds me.”
various chemotherapy drugs, in addition           Surrounded by two loving
to cranial radiation. The radiation was part    parents, four siblings and
of the protocol given to Katie as a result      friends, Katie celebrates her
of the clinical trial research. “We were        cancer-free life by continuing to
concerned about that because we knew            advocate for research. “Do not
there might be residual side effects,” says     be afraid of the word ‘research,’”
Pam. “on the positive side, Katie never         she says to others. “Through
had a relapse after treatment. That was         being part of a study, you are              Katie and her mom, in the midst of her treatment
wonderful. The cranial radiation may have       doing your part to help someone else.       for leukemia.

helped.”                                        The treatments that I’ve undergone will     any unexpected long-term abnormalities
  Looking back on the experience,               aid the doctors, nurses and scientists in   as part of her ongoing clinical study. “So
Katie knows that leukemia changed her           finding answers to what may cause these     far, so good,” she says.
life. Starting school in the middle of an       cancers, how we can prevent them and,         “Today, I am amazed at the strength
illness was difficult, causing her to miss      most importantly, how we can cure them.”    and courage I see in the children who
many days for treatments and follow-              While Katie is one of the fortunate       are fighting this battle,” says Katie. “I am
up appointments at the University of            cancer survivors who actually heard her     proud to know that through the work of
Minnesota. In addition, there were side         physician use the word “cured,” she         doctors, nurses and survivors like me,
effects of the therapies. Katie developed       continues to provide the University of      these children have a greater chance of
a slight learning disability that still makes   Minnesota with DNA samples to check for     beating their illnesses.”
it difficult for her to comprehend what
she reads. Treatment also left Katie with
cataracts in both eyes that are being
monitored carefully in anticipation of future
surgery.                                                                                            loNg-term
  Yet, despite the challenges, she                                                                  heAlth riSKS
graduated from Augustana College with                                                               It has been shown that, to varying
a bachelor’s degree in social work, and                                                             degrees, long-term survivors of
she holds a diploma in culinary arts from                                                           childhood cancer are at risk of
Mitchell Technical Institute. Katie is now                                                          developing second cancers and
working at a restaurant in Sioux Falls                                                              other health conditions, such
and at a local grocery store. “I am still in                                                        as infertility and heart disease.
pursuit of the perfect job,” she admits,                                                            The degree of risk of late effects
“and have no idea what I want to be ‘when                                                           may be influenced by various
I grow up.’”                                                                                        treatment-related factors such
  Friendships also have been difficult for                                                          as the intensity, duration, and
Katie. “I have not felt as though I fit in,”                                                        timing of therapy, as well as by
she says. “Yet, I have had some of the                                                              individual characteristics such as
most meaningful friendships a person                                                                the type of cancer diagnosis, the
could ask for.”                                                                                     person’s gender and age at the
  Katie also struggles with her size as                                                             time of treatment, and genetic
the shortest member of her family. The                                                              factors as indicated by, for
treatment left her at 4 feet 10 inches. “I                                                          example, family history of cancer.
know the day will come when my nieces
and nephews say, ‘Aunt Katie, I’m taller

ChildrensCancer.org                                                                                   spring 2011       butterfly     I 3
new study to detect heart problems early
Significant therapeutic strides have been   exposed to an anthracycline and are at        before those identified by traditional
made over the last three decades in the     risk for premature cardiac failure which      echocardiograms. An improved ability to
field of pediatric oncology resulting in    can be asymptomatic and progressive.          detect early heart problems will lead to
increasing numbers of children becoming       Conventional monitoring with routine        future interventional studies designed to
long-term cancer survivors and growing      echocardiograms has been limited by           prevent late adverse cardiac outcomes
into adulthood. Along with the increase     an inability to detect signs of early heart   after cancer therapy.  
in survivorship is a growing need to        disease. Thus, opportunities for early          The study is being led by Drew Dietz,
address the unique health care needs        treatment are missed. Strain and strain       M.D., a third-year research fellow in
for these survivors. Survivors
face significant ongoing health
care needs, with two-thirds
reporting at least one chronic
                                                “  The purpose of this research project is to determine
                                                    if changes in heart function among survivors of
                                               childhood cancer can be detected before those identified

                                                                                                      ”
medical condition and more than
25 percent being classified as                          by traditional echocardiograms.
severe or life-threatening. Several
chemotherapies are known to have            rate imaging is a new echocardiographic       pediatric hematology/oncology/BMT at the
adverse long-term cardiac effects,          technology that may be able to detect         University of Minnesota, whose fellowship
with the anthracycline class being the      signs of cardiac dysfunction. The purpose     is funded in part by Children’s Cancer
most studied. More than 65 percent of       of this research project is to determine if   Research Fund. Final results of the study
childhood cancer survivors have been        changes in heart function among survivors     will be presented in late April.
                                            of childhood cancer can be detected


4 I   butterflyspring         2011                                                                              ChildrensCancer.org
                                                                            national Childhood
                                                                            Cancer survivor study
                                                                            The Childhood Cancer Survivor Study (CCSS) is
                                                                            a collaborative, multi-institutional research study
                                                                            of individuals who survived five or more years
                                                                            after diagnosis of childhood cancer. Advances in
                                                                            cancer treatment have meant that today, nearly
                                                                            80 percent of children diagnosed with cancer
                                                                            will survive and be considered cured. As a result,
                                                                            interest is growing in the long-term health of these
                                                                            survivors.
                                                                              Health problems that develop years later as a
                                                                            result of a survivor’s original cancer treatment are
                                                                            known as late effects. The CCSS was started in
                                                                            1993 to better understand these late effects. The
                                                                            University of Minnesota is one of 27 participating
                                                                            research centers that provided names of more
                                                                            than 14,000 childhood cancer survivors who were
                                                                            diagnosed between 1970 and 1986. All of the
empowering cancer survivors                                                 participants received at least one form of primary
through information technology                                              treatment — surgery, radiation or chemotherapy.
Researchers at the University of Minnesota, led by Dr. Alicia               In addition to initial surveys, researchers also
Kunin Batson, have developed a study using an online                        gathered information from the survivors’ medical
tool designed to help adolescent and young adult cancer                     records.
survivors understand their health risks.                                      Researchers who have studied the CCSS



                                           “
  Previous studies have shown that                                          data have identified a number of potential late
                                               many young
cancer survivors are the key conduit                                        effects, including premature menopause, stroke,
for communicating essential information        adult cancer                 and secondary cancers. It’s recommended that
about their diagnosis and treatment to         survivors are not            childhood cancer survivors receive ongoing health
their primary care physician. Surprisingly,    knowledgeable                assessments from doctors who are well-versed in
however, many young adult cancer                                            these complications. (See page 6 for information
survivors are not knowledgeable about
                                               about their                  about the Long-Term Follow Up Clinic at the
their diagnosis and treatments, nor are        diagnosis and                University of Minnesota)
they aware of the continuing health risks.     treatments, nor                Due to the significant changes in therapy
A poor understanding of their risks may                                     for children with cancer over the past several
                                               are they aware of
prevent survivors from taking important                                     decades, recruitment is currently underway to
                                               the continuing

                                                                ”
steps to improve their long-term health.                                                           expand the study to include
  The study attempts to answer the             health risks.                                       approximately 14,000 more
                                                                      Researchers have
following questions:                                                                               survivors of childhood
                                                                    identified a number of
  When are childhood cancer survivors most receptive                                               cancer, diagnosed between
                                                                     potential late effects,
  to learning details about their diagnosis, treatment and                                         1986 and 1999.
                                                                     including premature
  recommended follow-up care?
                                                                     menopause, stroke,
  Will giving survivors access to an Internet-based, user-
                                                                        and secondary
  friendly resource increase their understanding of their
                                                                            cancers.
  health and the likelihood that they will communicate
  concerns to their primary care physicians?


ChildrensCancer.org                                                                            spring 2011   butterfly         I 5
                                                                  long-Term Follow-up Clinic
                                                                  The Long-Term Follow-Up Clinic at University of Minnesota provides
                                                                  health care to survivors of childhood and adulthood cancers.
                                                                  The providers are specialists with knowledge and experience in the
                                                                  treatment of cancer and the long-term effects of treatment. Long-term
                                                                  follow-up care includes screening for delayed complications of therapy,
                                                                  education about possible long-term effects, and monitoring of health
                                                                  care needs based on risk factors associated with prior cancer treatment.


                                                                  treatments
                                                                  Physicians offer a comprehensive array of diagnostic and therapeutic
                                                                  procedures and consultation including:
                                                                    Personal disease history and therapy review
                                                                    Screening for late effects
                                                                    Education on reducing the risks of the late effects
                                                                    Clinical exams and laboratory tests
                                                                    Treatment summaries for the cancer survivor and his/her primary
                                                                    physician
                                                                    Referral coordination to specialty care if needed
                                     Dr. Daniel Mulrooney,
                                     medical director of the        Counseling on education and occupational concerns
                                     Long-Term Follow-Up            Information about current research and knowledge of late effects
                                     Clinic, consults with a
                                     patient.                       if you would like to learn more about how to enroll at the
                                                                  long-term follow-up Clinic, call the clinic main line at 612-625-5411.




                                                          Dr. Michael Verneris

      meet the researcher
      Join us on an upcoming “Meet the
      Researcher” tour of the University of
      Minnesota Masonic Cancer Center
      where you’ll have a chance to meet the
      researchers whose pioneering work is
      bringing us closer to eradicating childhood
      cancer. You will visit the labs where future
      treatments are discovered and learn
      how your support of Children’s Cancer
      Research Fund is assisting children and
      their families who are impacted by cancer
      each and every day.
        The next tour will be on Tuesday,
      May 17, led by Dr. Michael verneris and
      Dr. Michael Burke covering the topic of              to register for an upcoming tour, visit ChildrensCancer.org/tour or
      leukemia.                                         contact Karen Skewes at 952-224-8491 or kskewes@childrenscancer.org.




6 I   butterflyspring         2011                                                                                   ChildrensCancer.org
                                                                                                                                                PHoTo By BRADy WILLeTTe
                                                           The new entrance of University of
                                                           Minnesota Amplatz Children’s Hospital.


The future of cures
The University of Minnesota Amplatz Children’s
Hospital is now open in its new home on the West
Bank. With its striking exterior and state-of-the-
art interior, the new hospital is a place of hope for
children and families facing childhood cancer and
other illnesses. The hospital opened its doors on
April 30 after months of final preparation and grand
opening events for hospital staff, donors and the
community.


healing environment
As we know, many children and their families stay in
the hospital for weeks and sometimes months at a
time, so there was a great effort to create a home-
away-from-home in the rooms and common spaces.
  The new hospital boasts private, cheerful rooms
that are 35 percent larger than the national standard
and include a wall of windows and space for parents
to sleep, store their clothes, work on a computer, and
fix and share simple meals.


passport to discovery
The new hospital also connects to the University’s
mission of being “Driven to Discover” and chose to
incorporate the theme, “Passport to Discovery” in the




                                                                                                                                                PHoTo By BRADy WILLeTTe
various common spaces.
  For starters, there’s a large compass mosaic on the
lobby floor. Then each level of the hospital highlights
a different type of wildlife habitat and animal mascot.
For example, bone marrow transplant patients on the
4th floor will see their turtle mascot take them through
the “lakes” habitat. Each habitat theme is reflected in
several places throughout the floor — from the backlit
scenes that greet people coming off of the elevator to
the animal silhouettes on patients’ room signs.
  Most important, the new building fills a need for a
space that is truly focused on children and families,
says Joseph Neglia, M.D., M.P.H., physician-in-chief
of University of Minnesota Amplatz Children’s Hospital
and chair of the Medical School’s Department of
Pediatrics.                                                                                             Dr. Brenda Weigel in a patient room.
  “We now have an outstanding physical
space that reflects the quality of care we
have been providing for years,” he
says. “This new facility lets us offer
families a whole new level of service.”                                            Bone marrow transplant patients on the 4th floor will see
                                                                                   their turtle mascot take them through the “lakes” habitat.

ChildrensCancer.org                                                                                     spring 2011    butterfly         I 7
                                                                                                      Derek and his mom Holly with his Minnesota
                                                                                                      “grandmas” Nance (left) and Barb (right).




                                                                                                        things on our own at home. If we needed
                                                                                                        to go to the store — we simply got in our
                                                                                                        car and went to the store.” But knowing
                                                                                                        that things would be much different in an
                                                                                                        unfamiliar city, and knowing that Holly
                                                                                                        would be alone at times when Scott
                                                                                                        needed to go back to Michigan for work,
                                                                                                        the family gladly accepted the help.
                                                                                                           Enter Care Partners family volunteers
                                                                                                        Nance Alexander and Barb Gurovitsch.
                                                                                                        Nance and Barb contacted Holly
                                                                                                        immediately and began offering assistance,
                                                                                                                    support and friendship. Nance
                                                                                                                    and Barb have provided rides
Friends in minnesota                           Hospital, using                                                      to and from the airport, given
When Derek Hanewacker was only 10              stem cell therapy                                                    breaks to Holly while Derek was
months old he was diagnosed with Hurler        treatments funded                                                    in the hospital and have helped
                                                                      A Children’s   Cancer Research Fund Program
Syndrome, a rare genetic disorder that         in part by grants                                                    with errands and other needs.
causes progressive physical and mental         from Children’s Cancer Research Fund.                    They also helped make valentine’s Day
deterioration, with death usually occurring      The Hanewacker family arrived in                       special for Holly and Scott by staying with
before the age of 10. Devastated to            Minnesota in January, 2011 to begin                      Derek so that the couple could enjoy dinner
learn of their only child’s life-threatening   Derek’s workup for his umbilical cord                    together.
disease, Derek’s parents, Holly and Scott,     blood transplant. Soon, the family was                      Nance and Barb have both felt the
conferred with their medical providers in      introduced to the Care Partners program,
                                                                                     ®
                                                                                                        enormous rewards of helping families
their hometown of ortonville, Mich., to        which provides volunteer support to                      during such a stressful time.
determine the best treatment option. They      families facing treatment for childhood                     Holly states that the support that
soon learned that the best place to treat      cancer and rare illnesses. Holly admits                  Nance and Barb have provided has been
Derek’s disease was “hands down,” the          that she was initially hesitant to accept                “wonderful,” but she is not the only one
University of Minnesota Amplatz Children’s     outside help. “We were so used to doing                  who has benefited. Derek looked forward
                                                                                                        to his visits with Nance and Barb, and the
                                                                                                        feeling was mutual. Nance says that she
Care partners’                                                                                          and Barb loved spending time with the

picnic of                                                                                               whole family, but especially with Derek
                                                                                                        since “we are ‘grandma wannabes’ and
Hope                                                                                                    get to be that with him.”
Saturday, June 11                                                                                          As Derek continues to get stronger
LONG LAKE                                                                                               and gets closer to returning home, Nance
REGIONAL PARK                                                                                           and Barb know that they will keep in
NEW BRIGHTON                                                                                            touch with the Hanewacker family for
Join us for the 16th annual Care Partners’     reconnect with doctors, nurses, social                   years to come. As Barb explains why the
Picnic of Hope on Saturday, June 11            workers, Care Partners volunteers                        Care Partners experience is so special,
at long lake regional park in New              and other support staff. volunteer                       “I have the opportunity to see and talk to
brighton, with food provided by picnic         opportunities are also available.                        families while they are here for months at
pleasers. Picnic of Hope welcomes              please contact Alex thwaites at                          a time and thus build a relationship. It is
current and former pediatric oncology          612-273-2951 for more information.                       extremely rewarding to listen to them and
and BMT patients, and their families to                                                                 offer the support when it is most needed.”

8 I   butterflyspring          2011                                                                                            ChildrensCancer.org
                                                                                                new tax laws
                                                                                                in place
                                                                                                The Federal Estate Tax,
                                                                                                Gift Tax, and Generation-
                                                                                                Skipping Transfer Tax began
                                                                                                a new chapter in 2011. The
                                                                                                U.S. Congress took action
                                                                                                on these taxes in legislation
                                                                                                which were passed shortly
                                                                                                before the close of 2010.
                                                                                                The new tax laws will apply
                                                                                                as follows:
                                                                                                  Each individual tax payer
What’s your legacy?                                                                               will receive a $5 million
You do not need to be wealthy to show you care. People from every walk of life can                estate tax exemption, and
embrace charitable giving as a part of their estate plan. You can make a charitable gift          married couples will receive
by remembering Children’s Cancer Research Fund in your will, trust, or IRA/401K, or by            a $10 million exemption.
                                naming us as an insurance beneficiary. Donors who notify          The exemption between
                                us of their intent to make a planned gift are invited to join     spouses is portable. This
                                Wings Society™, our giving club that honors and celebrates        means that if the first-to-
                                donors who establish a planned gift to support cancer             die spouse did not exhaust
                                research. Wings Society offers many benefits, including a         his or her exemption,
special gathering to learn about the impact of charitable giving on cancer research. Most         the remaining exemption
importantly, Wings Society members can make a significant impact on cancer research.              amount may be transferred
  if you’re interested in learning more about joining our wings Society, please                   to the surviving spouse.
contact Joslyn biever at j.biever@mmf.umn.edu or 612-626-6430.                                    The top taxable rate on
                                                                                                  estate gifts and generation-
                                                            From LEFT to RIGHT:
                                                            Mary Jeffries, host                   skipping transfers will be
                                                            Francine Hitchcock                    35 percent.
                                                            and Michelle Tiller.
                                                                                                  The return of the estate
                                                                                                  tax also brings new rules
                                                                                                  for beneficiaries. Heirs
                                                                                                  inheriting assets will
                                                                                                  acquire a tax basis equal
                                                                                                  to the fair market value
                                                                                                  of the asset on the day of
special gathering in scottsdale                                                                   ownership transfer.
Longtime friends and supporters of Children’s Cancer Research Fund, Francine
Hitchcock and James Davis, recently hosted a gathering in their Scottsdale, Ariz. home.         The changing estate tax
The event featured honorary national chair of Children’s Cancer Research Fund, Tom              landscape may affect your
Lehman. With the Scottsdale sunset and Pinnacle Peak in the background, over 60                 plans for leaving a legacy
guests enjoyed great fellowship and heard remarks from Dr. Joseph P. Neglia, chair,             gift to Children’s Cancer
department of pediatrics and physician-in-chief at University of Minnesota Amplatz              Research Fund through
Children’s Hospital and John Hallberg, CEo of Children’s Cancer Research Fund.                  your estate. to learn more,
  Guests had the opportunity to learn about recent discoveries in pediatric cancer              contact Joslyn biever at
research and new, exciting treatment opportunities made possible with the opening of            612-626-6430 or via email at
the new Amplatz Children’s Hospital.                                                            j.biever@mmf.umn.edu.
  Thank you to the Lehmans, Francine and James for hosting an incredible evening and
sharing our mission with new and longtime friends of Children’s Cancer Research Fund.

ChildrensCancer.org                                                                              spring 2011    butterfly        I 9
                 new beginnings
                 By Cindy Chandler
                 BOARD OF DIRECTORS CHAIRPERSON

Happy Spring!
After a very long winter, we Minnesotans speak of having
“survived” the cold and dreary days and look forward to
celebrating the beautiful spring season. These feelings
of relief and joy are the same emotions felt by many
young cancer survivors and their families after finishing
their life-saving, rigorous treatments.
  For the past 30 years, we have witnessed the miracles         Connect families
and the advancement of treatments that have increased           Lifesaving treatment is not always in your backyard.
the survival rate for many forms of childhood cancer.           often, families travel long distances to receive the best
Although there is much joy and celebration, these               care available, and stay for many months at a time. As
survivors face a higher risk of health issues later in life,    a result, parents may split time between home and the
because of their disease and intense treatments. In             hospital, incurring significant travel costs. Care Flights™
addition to the many physical problems, there are often         connect families while a child is
emotional issues and learning disabilities that emerge.         receiving treatment for cancer or
  We now are beginning to realize that much needs               other rare illnesses.
to be done to understand the long-term effects of                  As a Delta Air Lines SkyWish Charity partner, Children’s
treatment as these children become adults. This                 Cancer Research Fund relies on individuals like you to
critical research we fund explores how protocols and            donate your extra miles in support of families in need.
treatment can be adapted to improve the long-term                  Your miles can make a world of difference. to donate
health and the quality of life for our survivors. Through       your extra Delta miles, visit ChildrensCancer.org/Delta.
your financial contributions, we’re able to support the
annual Survivorship Series Conference at the University
of Minnesota. This educational conference for cancer
survivors, their families and health care professionals
provides information and guidance for those who want
to examine the long-term effects of cancer treatment or
stem cell transplantation.
                                                                        Dawn of a Dream Save the Date will also go on this page
  You can support this important work and research
of Children’s Cancer Research Fund by attending
one of our signature summer events – Time to Fly
2011, or the 20th Anniversary of Macy’s Passport
Presents Glamorama. You can also make an impact by
contributing your time as a volunteer or making a gift.         SAturDAy       SAVe THE DATe

                                                                  5
Your continued support and generosity is appreciated
by all of our partners working diligently to find cures and
                                                                               31sT annual         Dawn of a Dream
                                                                               Mark your calendars for another unforgettable
improve the outcomes for childhood cancer survivors.             Novembe
                                                                           r
                                                                               Dawn of a Dream on Saturday, November 5.
                                                               Inspired by a child’s dream to help other children with cancer,
                                                               Dawn of the Dream remains our signature, not-to-miss event
                                                               of the year. Join us for this moving and entertaining evening at
                                                               The Depot Minneapolis, hosted by co-chairs Lisa Wagner and
                                                               Susan Prell. for more information, contact Amanda walston
                                                               at 952-224-8497 or awalston@childrenscancer.org.

10 I   butterfly       spring 2011                                                                          ChildrensCancer.org
                                                                                        LEFT: Childhood cancer survivorship panelists with Dr. Alicia
                                                                                        Kunin-Batson and Dr. Daniel Mulrooney.
                                                                                        ABovE: one of the many breakout sessions that covered
                                                                                        many topics including nutrition, sexuality and medical late
                                                                                        effects of cancer.


Thriving after cancer
Nearly 300 adult and childhood                                                         able to advocate for themselves to lead full and
cancer survivors and their family                                                      productive lives.
members attended the 6th annual                                                           The conference opened with comments from
Survivorship Conference on April 2 at the University of        Masonic Cancer Center director Douglas Yee, M.D., after which attendees
Minnesota to learn more about issues they may face             listened to breakout sessions led by medical and professional experts in
after cancer treatment or stem cell transplantation.           different aspects of long-term survivorship. Childhood cancer survivors
Attendees had the opportunity to learn more about new          and family members participated in a panel discussion which raised
directions in cancer therapy; how to reduce the risk of        other important issues for survivors’ long-term health and life goals. The
recurrence and second cancers; sexuality after cancer;         conference concluded with a special theatrical performance of “Jonna’s
nutrition and healthy living; work and disability matters;     Body,” a nationally acclaimed, emotional and comedic presentation that
medical late effects; integrative medicine and cancer          describes the inner world of performer Jonna Tamases’ body as cancer
survivorship. The emphasis of the conference was on            invades.
educating and empowering survivors so they are better




   SeeN AND HeARD:
   Childhood cancer survivor panel
   Panel sponsored by Children’s Cancer Research Fund
   Guests at the survivorship series            KAtie: “Be your best
   conference had the opportunity to hear       advocate. Take notes, do
   from three childhood cancer survivors        research and ask questions      LEFT To RIGHT: Panelists Katie Sonnichsen, Jeff Schultz and
   as they shared their cancer-survivorship     to make sure you’re             ellie Beaver.
   concerns and experiences. Led by             getting the best care and
                                                                                young guy and kept his spirits up. Jeff also said that
   Dr. Alicia Kunin-Batson, panelists           treatments.”
                                                                                participating in speaking engagements and sharing his
   included Katie Sonnichsen, Jeff Schultz      Jeff: He took the advice        story has been very therapeutic in terms of processing
   and Ellie Beaver.                            of a young woman he             his cancer experience.
     When asked what advice they have           met while going through
                                                                                ellie: “It won’t last forever, no matter the outcome,
   for families with a new diagnosis of         treatment which was,
                                                                                you will get through it and you are stronger than you
   childhood cancer, here’s what the            “Act as if you are cured.”
                                                                                might realize.” She also shared that, in addition to the
   panelists had to say:                        He found that having this
                                                                                horrible experiences, there are many positive things
                                                positive attitude made
                                                                                that will happen throughout your journey.
                                                him feel like a “regular”



ChildrensCancer.org                                                                                        spring 2011     butterflyI         11
                                           Guests listen to speakers at Just Imagine.




                                                                                                    Board member Janet Stacey talks with guests
                                                                                                    at last year’s event.


                                                                                                    of childhood cancer. Attendees will
                                                                                                    also meet families who will share their
                                                                                                    experience with pediatric cancer and why
                                                                                                    individuals’ support of further research
                                                                                                    is needed, now more than ever. The
                                                                                                    event is a great introduction to Children’s
                                                                                                    Cancer Research Fund, so we welcome
                                                   Join us at the upcoming fundraising              your attendance and encourage you to
                                                   luncheon, Just Imagine, where guests             invite friends, family and colleagues to
                                                   will learn about our positive impact on          join us on May 19. if you are interested
                                                   the prevention, diagnosis and treatment          in attending or have questions, visit
                                                   of childhood cancer. Guests will hear            ChildrensCancer.org/Justimagine or
thursday, may 19                                   from University of Minnesota researchers         contact Karen Skewes at kskewes@
NOON TO 1PM | MINIKAHDA CLuB                       about recent progress in the treatment           childrenscancer.org or 952-224-8491.




   benefactors Circle                              stem cell transplantation.
   The Benefactors Circle was formed               Dr. John Wagner created
   21 years ago by Sharon and Joel                 the treatment protocol at
   Waller to raise money for Children’s            the University of Minnesota,
   Cancer Research Fund. over the years            which is now used worldwide.
   — and more than $2.4 million raised             Dr. Wagner and his team are
   — this fund has made it possible for            now trying to eliminate the
   University of Minnesota researchers             problem of immune system
   to earn larger federal grants, hire             recovery after transplantation,
   new researchers and allow projects              which the Benefactors
   in financial jeopardy to culminate.             funding could help support.
   Annually, members gather for a dinner              You are invited to join the
   in late spring, hosted by the Wallers,          Benefactors Circle with a
   to celebrate research progress and              donation of $1,000 or more,
   learn about new research funding                and attend the celebratory
   opportunities.                                  dinner on June 5. to indicate
       This year, the Benefactors Circle           your interest, please email
   members are looking to help fund a              Jenny phyle at jphyle@                    Joel and
                                                                                             Sharon Waller
   research program for umbilical cord             childrenscancer.org.


12 I   butterfly       spring 2011                                                                                       ChildrensCancer.org
                        Community FUNDRAISeRS
Thank you to the following organizations, groups and individuals who champion
our cause by hosting fundraisers to benefit Children’s Cancer Research Fund.


  Date for life                           Joe rauscher’s 18th annual
  FuNDRAISING CHAMPION:                   memorial ski race
  it’s Just lunch                         FuNDRAISING CHAMPION:   Joe’s Sporting goods
  The 3rd annual event, which             Joe Rauscher’s 18th Annual Memorial Ski
  features Twin Cities’ bachelor          Race was held on Saturday, March 12 at
  and bachelorettes was held on                                     Wild Mountain Ski
  February 10. The event took                                       Area.  The team
  dating to a new level, where                                      from Joe’s Sporting
  attendees participated in a live                                  Goods worked
  auction to bid on dates with 10                                   hard again this
  of the 28 singles. Held at the                                    year to host a fun
  Fine Line Music Café, the event         competition with more than 250 participants.
  also featured a performance by          Proceeds from the event benefit Children’s
                                                                                          Laura dedicated her samba to
  Tim Mahoney and stellar silent          Cancer Research Fund and American               Molly, a recent cancer survivor
  auction items and raffle prizes.        Cancer Society. Since the event began,          who shares her love of dance.

  overall, the event broke a new          we have received more than $100,000,
  record by raising $42,500. Thank        including this year’s total of $10,420. Thank   Dancing with
  you to presenting sponsor,              you Joe and the team at Joe’s Sporting          the Twin Cities’
  It’s Just Lunch. to view
  photos and learn more, visit
                                          Goods for your commitment to our cause!
                                          to view photos from this year’s event, visit
                                                                                          Celebrities
                                                                                          FuNDRAISING CHAMPION:
  DateforlifemN.org.                      JoesSportinggoods.com/Community.html.
                                                                                          laura Schara and
                                                                                          Arthur murray Dance Studios
                                                                                          Arthur Murray Dance Studios hosted
Karma Yoga project                                                                        its 2nd annual charity event featuring
FuNDRAISING CHAMPION:   Corepower yoga & Spa, edina                                       dance performances from some of
CorePower’s Karma Yoga program is rooted in the belief that selfless service is           Twin Cities’ best known celebrities.
an important aspect of yoga, and offers this program to their students. Children’s        The event, held on February 19,
Cancer Research Fund was the beneficiary of their Karma Yoga Project held                 raised money for local charities by
February 26-27 at their Edina location, receiving 10 percent of membership proceeds       having each competitor select a
and sales from the weekend. Proceeds from the project totaled $1,500. Thank you           charity beneficiary and compete
and “Namaste” to our friends at CorePower Yoga & Spa, Edina!                              for the most votes. Laura Schara,
  visit Corepoweryoga.com to learn more.                                                  Macy’s fashion correspondent and
                                                                                          outdoor Tv host, participated in the
                                                                                          competition and chose Children’s
    linda’s photography held their 17th annual spring photo promotion, Bunnies and        Cancer Research Fund as her
    Lambs, during the month of April. Proceeds from photo sessions benefit Children’s     charity.  In the end, Laura’s high-
    Cancer Research Fund, bringing Linda’s lifetime giving to more than $22,000.          energy samba routine received the
    Thank you to bmw of minnetonka for their generosity from the car wash program         most votes and she was crowned
    available every Saturday in March and April.                                          the celebrity champion. Thank
                                                                                          you Laura and her partner Danny
    Thank you to france 44 wine & Spirits for their continued partnership in raising
                                                                                          Ross. for more information, visit
    awareness and donating to our cause through their recent weekend promotion
                                                                                          twinCitiesArthurmurray.com.
    during which we received 10 percent of all sales.


ChildrensCancer.org                                                                             spring 2011     butterflyI         13
                                                                                                           LEFT: KS95’s Dez interviews a phone bank
                                                                                                           volunteer during the live broadcast..
                                                                                                           BELoW: KS95 Morning Show’s Ryan and
                                                                                                           Melissa talk with Chris, a Radiothon alumnus
                                                                                                           from our very first Radiothon broadcast.




                                                                                                            annual
                                                                           Mark your calendars for the 13th
                                                            fri-SAt


                                                        9/
                                                         10                event, to be held December 9-10,
                                                                                                             2011!
Ks95 for Kids® radiothon                                  DeCember


KS95 held its 12th annual KS95 for Kids                 KS95 For Kids raises money                disabilities. Families also visited the Mall
Radiothon December 10-                                                for Children’s Cancer       of America to participate in live interviews
                                                          94.5
11 at the Mall of America,                                            Research Fund and           throughout the weekend, getting the chance to
during one of the biggest                                             Gillette Children’s         meet their favorite KS95 radio personalities.
blizzards in Minnesota                                                Specialty Healthcare.          This year’s event brings the overall Radiothon
history. Despite the storm,                                           During the Radiothon,       total to more than $11.6 million for Children’s
KS95 listeners stepped up                                              listeners heard the        Cancer Research Fund and Gillette Children’s
in a big way, contributing                                             inspiring stories of       Specialty Healthcare.
more than $473,000 to help                                             children affected             to hear the kids’ stories or to view photos
children facing medical challenges.                   by cancer and those living with             from the event, visit KS95forKids.org.




                                                                                     Thank you to the more
                                                                                     than 73 families and school
                                                                                     groups who collected
                                                                                     change this spring as part
                                                                                     of the KS95 for Kids™
                                                                                     Change for Kids program.
                                                                                     In total, more than
                                                                                     $35,000 was collected
                                                                                     from groups across Minnesota
                                                                                     and benefits both Children’s Cancer Research Fund and
                                                                                     our partner, Gillette Children’s Specialty Healthcare.
                                                                                        Individuals who contributed at least $100 enjoyed
                                                                                     a private party at Nickelodeon Universe at Mall of
                                                                                     America, hosted by KS95’s on-air talent. Guests enjoyed
KS95 for Kids Change for Kids participants at
Mall of America celebrating at their private party.                                  unlimited rides, a meet and greet with Nickelodeon
                                                                                     characters like SpongeBob SquarePants, along with
                                                                                     snacks and refreshments. A big thanks to KS95 for their
                                                                                     ongoing support!



14 I   butterfly        spring 2011                                                                                             ChildrensCancer.org
Time to Fly 2011
Saturday, June 25
HARRIET ISLAND REGIONAL PARK
SAINT PAuL
Join us at Time to Fly 2011! Already in
its 9th year, Time to Fly is our fastest
growing event featuring walking and
running events, a popular kids fun run and
entertainment for the whole family. Form
a team, invite your family and friends, and       Sign up today and get started! visit
celebrate the brave children in our lives      ChildrensCancer.org/timetofly.
who have battled cancer.                          questions? Contact
  Time to Fly 2011 will feature:               Amanda walston at 952-224-8497 or
  10K Run, 5K Run, 5K Walk, Kids’ Fun Run      awalston@childrenscancer.org.
  Technical shirts and race goodie bags
  for adult walkers and runners
  T-shirts and ribbons for youth
                                                     Thank you to our sponsors:
  participants                                       gold Sponsors

  Family entertainment area with games,
  prizes and interactive fun for children of
  all ages
  Live music
  Awards for individual and team                      Jay Mooreland
                                                      C ERTIFIED F INANCIAL P LANNER   TM


  fundraisers
  Through your support of events like                media partners
Time to Fly, Children’s Cancer Research              Minnesota Monthly
Fund can continue to make medical                    Midwest Home Magazine
history and most importantly, help children
lead healthy, happy lives.




                 New THIS yEAR!
                 Fundraising through Facebook is a fun and easy                             AT ToP: enthusiastic teams are the
                 way to get your friends and family involved in Time to Fly! Just           reason Time to Fly is our fastest
                 register for the event and download the application from the               growing event!
                                                                                            MIDDLE: A runner from the Social
                 email confirmation you receive afterward. We also have a special
                                                                                            Butterflies team approaches the finish
                 Facebook page created for Time to Fly event updates and                    line.
                 announcements. Search time to fly and “like” us today!                     BoTToM: Time to Fly is a great family
                                                                                            event.



ChildrensCancer.org                                                                         spring 2011      butterflyI          15
                                                                                      Nonprofit
                                                                                     organization
                                                                                    U.S. Postage
                                                                                        PAID
7301 ohms Lane, Suite 460                                                          Minneapolis, MN
                                                                                    Permit #27941
Minneapolis, MN 55439




                            get
                              friDAy
                                    Glam  friday, August 5 | ORPHEuM THEATRE


                               5
                               AuguSt
                                          Don’t miss the 20th anniversary of
                                          the Twin Cities’ most anticipated
                                          summer event, Macy’s Passport
                              Presents Glamorama. Macy’s legendary fashion
                            and entertainment show will once again feature
                            fall’s hottest fashion trends, musical entertainment
                            by a national recording artist and a fabulous post-
                            party experience on Macy’s rooftop, all benefiting
                            Children’s Cancer Research Fund. As a friend of
                            the organization, you can reserve your tickets
                            before they go on sale to the public. visit
                            ChildrensCancer.org/glamorama today!

				
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