Playtime Therapy for Children Recovering From Cancer

When the surgery has passed and chemotherapy has ended, cancer’s toll on the body remains.

playtime_therapyChildren who want to get back to handstands and Hula Hoops can find themselves weak and discouraged.

Concerns about the physical well-being of children who’ve had cancer prompted athletic trainer Travis Gallagher to encourage Nationwide Children’s Hospital to start its Play Strong program.

“These patients, they just want to get back to being a kid,” he said.

Each child comes to the year-old program with a unique set of challenges, but the most common are muscle weakness, difficulty balancing and weight gain brought on by treatments or inactivity.

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The View From The Top Of The Mountain

This guest blog post by Tania Hecht

Tania Image 1The summer before I was diagnosed with cancer, I was in the mountains teaching backpacking and wilderness skills to children, many of them from disadvantaged backgrounds. At 16, I had spent the last ten summers exploring the Sierra Nevada mountain range in California, and I found purpose and solace on backpacking trips. That August, I had summited one of the highest peaks in the area, a harrowing scramble up the side of a mountain covered in loose rocks. When I reached the top, sweaty and shaky, I was rewarded with some of the most beautiful views I’d ever seen of Sonora Pass. Fewer than six months later, on a bright February day, I was diagnosed with leukemia. My parents, both in medicine, had misdiagnosed me with anemia a few weeks before. When iron supplements failed to remedy my flagging energy and easy bruising, my father grimly consulted his textbooks and brought me to my pediatrician. That afternoon, as we waited anxiously for my lab results, I sat on the porch and soaked in the sunshine and the trees, just starting to bloom in the warm Bay Area weather.

That evening, my parents, sister, and I drove to Children’s Hospital Oakland, where I was admitted with Acute Promyelocytic Leukemia, a sub-type of AML. Lying in the emergency room that night, my first question to my doctors was, “Will I be able to go to the mountains this summer?” When they told me no, I secretly willed them to be wrong. I spent the next four months in treatment in the air-filtered oncology ward at Children’s Hospital. For weeks at a time, my immune system was so weak that a cold or flu could have killed me. Visitors scrubbed up before entering my hospital room. I missed the outdoors with an ache and I felt confined in the hospital. When I tried to curl up near the window in my room and stare out at the trees, my nurses gently reminded me that chemotherapy causes light-sensitivity and requested that I go back to bed.

Held captive in my room, I dreamed of the cherry blossoms I saw in bloom the day I was diagnosed, and I imagined floating to the roof of the hospital, where I could breathe fresh air. I longed to be in the Sierras, and was secretly convinced that I wouldn’t be cured until I could escape from Children’s Hospital and breathe the mountain air. Chemotherapy might fight off cancer cells, but being locked in the isolation ward was a different kind of poison.  After my final round of in-patient chemotherapy, my blood counts bounced back with unexpected speed, and my oncologist gave me permission to spend a day or two in the mountains.

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Franklin Templeton Shootout Benefits CureSearch for Children’s Cancer

Frankling Templeton ShootoutThe Franklin Templeton Shootout is a tradition in Southwest Florida, with a long history of supporting CureSearch and other non-profits through the Franklin Templeton Shootout and Franklin Templeton Shootout 5K. The Shootout is Southwest Florida’s only PGA Tour event and is hosted by World Golf Hall of Famer, Greg Norman. This year, the 4th Annual Franklin Templeton Shootout 5K took center stage, promoting a healthy lifestyle and children’s cancer awareness. Participants competed on a self-contained course within the Tuburon Golf community before the start of the tournament on Saturday, December 9th.

Now in its 24th year, the tournament has donated $11 million to CureSearch to help fund targeted and innovative children’s cancer research.  This one-of-a-kind event featured 24 of the world’s top professional golfers playing on two-man teams. With their pride on the line, players worked hard to prove themselves and the children’s cancer community that they will do anything for a cure.

CureSearch’s Interview with Joe Simone, MD, Chair of the Scientific Advisory Council

The Scientific Advisory Council (SAC) at CureSearch is comprised of eight children’s cancer specialists from institutions across the country. Led by Joe Simone, MD, the SAC is tasked with developing and guiding the organizations scientific strategy, agenda, and grants program. Recently, CureSearch sat down with Dr. Simone to talk about the SAC’s work and his thoughts about how children’s cancer research and treatment have changed, and how they will change again in the coming years.

Q: CureSearch for Children’s Cancer formed a Scientific Advisory Council (SAC) in 2012, which you chair. Tell us a little bit about why the SAC is important and what its work entails.

A: CureSearch, like any organization, needs to be constantly evaluating its go forward position. In this case, that means how to use current resources to best fund children’s cancer research that will help move the needle on finding treatments and cures. The role of the SAC to help do that. Together, we are identifying and prioritizing scientific issues affecting the childhood cancer research community, both in the laboratory and at the bedside, and choosing to fund research we think will have a significant impact.

Q: You mentioned funding laboratory research. Why is that important?

A: Laboratory research is important because there is a tremendous amount of work taking place that looks at the cellular level of children’s cancer to understand not only the origin of some of these cancers but also how to target minute activity in cells to get cancer to respond to treatment. This work is called targeted therapy, and it has to work in the laboratory before it can move to the bedside. This is an exploding field in all diseases, and we believe that investing resources in these researchers will help move some of this work to clinical trials in the coming years.

Q: So, the Scientific Advisory Committee looks at these areas and decides which researchers will be funded?

A: Not entirely. The SAC determines three to five areas of research it will fund in a given year. Then, a Request for Applications is issued for each of these areas, and researchers can apply for funding. As the SAC, we ask leaders in the field of each of the 3-5 areas to come together and review blinded applications and score them. The one in each area with the highest score will receive funding.

Q: When will you be announcing the areas of funding for 2013?

A:We plan to issue RFAs in March of this year, and announce the recipients of grants in September during a scientific meeting in Washington, DC.

Q: What meeting is that?

A: This fall, CureSearch will host its first scientific symposium. Titled The Future of Pediatric Oncology: From Targets to Treatments, we are excited to have assembled a panel of highly regarded experts in children’s cancer research and treatment. We will host a 1.5 day symposium to facilitate discussion between laboratory researchers and clinicians about the changing face of pediatric cancer research due to advances cellular therapy and immunology, with a focused look at metastatic and drug resistant cancers.

Q: You mentioned looking to the future. You have worked as a children’s cancer researcher for a long time. What are the three biggest changes in treatment you’ve seen?

A: The true greatest change has been the ability to now cure a majority of children’s cancers. This was certainly not the case when I first began practicing medicine.

In addition, I would say that the molecular analysis of specific cancers has been a boon to understanding and categorizing those cancers susceptible to current treatment and those that will need new approaches.

Finally, I’ve seen pediatric cancer studies that pioneered many of the therapeutic techniques later adopted for adult cancer, such as therapy with combinations of drugs pioneered in childhood leukemia, multi-modal and adjuvant therapy as used in Wilms tumor, and constructing different phases of therapy as used in many childhood cancers to reduce toxicity and the emergence of drug resistance.

Q: We know that CureSearch, and many other organizations are working hard to fund research to impact survival rates. What do you think are the largest challenges facing the field today?

A: The main challenge is when a cancer is, or becomes, resistant to therapy. Another challenge is that success in many childhood cancers makes it more difficult to change established forms of therapy, even if they are not perfect. Finally, molecular diagnostics divides some cancers into smaller and smaller subtypes meaning fewer patients in each subtype for testing newer treatments.

Q: Do you see those challenges being addressed in the next 5-10 years?

A: I believe all these challenges can be addressed… in fact they are being addressed now in laboratories and clinics. But they won’t be easy problems to solve and we must support the research of those working on solutions.

Q: If you had a crystal ball, how would you predict treatment to change in the next decade?

A: I think treatment will gradually simplify with the development of more oral and less toxic therapies for some cancers. Our ability to identify therapy-resistant cancers earlier will grow so patients are not given futile treatments for their particular cancer subtype. We will also do a better job of helping surviving patients with the effects of their illness and its treatment. Pediatric oncology has led in dealing with survivorship issues but there is much more to be done to help cancer survivors lead lives as normal as possible after their cancer treatment has been successfully completed.

Returning to School

For many children, cancer means extended absences from school.  Sometimes these absences come in the form of a few weeks at a time, and sometimes for several months or an entire school year.  Regardless of how long the absence, returning to school can be challenging not only for the child with cancer, but also for the child’s classmates and teachers.

When your child is ready to return to school, it is important to talk about any feelings, especially fears, about going back. Some children return without hair and fear being made fun of, some return in wheel chairs and aren’t sure how they will play at recess or can’t return to sports teams.  And for some, treatment may have caused learning challenges.

CureSearch for Children’s Cancer is proud that one of the many resources on our website is a section about school support for your child. In this section, at, we offer practical suggestions for parents and teachers to help your child return to school, and continue his or her education when out of school for a long period of time.

Ultimate Hike Heroes Honor their Son

Braeden BurgessJust one day before his second birthday, Braeden was diagnosed with stage III, high-risk neuroblastoma, a malignant tumor that develops from nerve tissue and is the most common solid tumor found in children under the age of 1. Braeden underwent six rounds of chemotherapy, several surgeries, a stem cell transplant, and completed twelve cycles of radiation therapy before his fourth birthday. When he relapsed in August of 2008, his parents continued to look for treatment options. Unfortunately Braeden lost his battle in April of 2009.

Kevin and Dawn knew that they couldn’t let their son’s legacy end with his passing, and began looking for ways to share Braeden’s story and raise awareness for other children battling cancer. Kevin explains, “When your child dies, they have made such an impact on you as a parent, and everyone they have touched. You want to make their life continue to mean something and count for something.” The Ultimate Hike program gave them the perfect outlet to do just that. Both Kevin and Dawn were never hikers before they joined the Ultimate Hike program, but now couldn’t imagine life without it. With two hikes under their belts, they have found that the sense of accomplishment and camaraderie felt at the end of a long training hike or when they get to tell Braeden’s story helps them stay connected to their son.

Though Braeden lost his battle, Kevin and Dawn hope that his spirit lives on through their actions and that one day no child will be diagnosed with cancer.

Scientist Explores Gene to Increase Survival Rate of Patients with High-Risk Leukemia

Research could lead to targeted therapies

Chris PorterChris Porter, MD from the University of Colorado and Children’s Hospital of Denver splits his time seeing pediatric oncology patients and researching targeted therapies aimed at improving treatments for leukemia. His lab at the University of Colorado is focused on using functional genomic screening to identify novel therapeutic strategies for acute lymphoblastic leukemia (ALL).

With an overall survival rate of 80%, most leukemia patients receive a standardized treatment that has been proven successful.  However, when a patient with leukemia relapses, their chances of survival decrease significantly. Dr. Porter plans on researching why these cancers do not respond well to traditional chemotherapy, and what therapies can be created to improve survival rates. He believes that to understand this, doctors need to explore the genes responsible for initiating and maintaining the leukemia and then develop therapies targeted to vulnerabilities that these genes create to successfully treat the disease. Read more…