Little Girl’s Memory Lives on Through Family’s Determination

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In March of 2011, Sheridan Bautista was diagnosed with osteosarcoma at the age of seven. Doctors found a tumor located above her left knee that encompassed 75% of her femur. She immediately started chemotherapy in preparation for a revolutionary limb salvage surgery where 75% of her femur was removed and replaced with an implant that would grow with her, without the need for lengthening surgeries. The surgery was a complete success and started her road to recovery. Through physical therapy and a lot of determination, Sheridan was able to walk just 3 months after her surgery.

 

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Before her diagnosis Sheridan was an active girl who was involved with competitive dance, gymnastics, and softball. She always strove to be kind and say what was on her mind. Even throughout her treatment, this spirit continued. Sheridan was also someone who wanted to help others and would do whatever she could to make them smile.

 

While at the hospital, Sheridan and her family learned about the CureSearch Walk and Sheridan immediately knew she wanted to get involved. She worked hard to recruit team members and raise funds – her determination lead to her team to raise over $7,000. The day after her 8th birthday, Sheridan walked in the Oklahoma City CureSearch Walk; an incredible feat just months after surgery. She was so excited to be a part of the event and receive her survivor medal.

 

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Top Ten Hiking Tips

This guest blog post by Joe Miller, Raleigh Ultimate Hike Coach and author of 100 Classic Hikes in North Carolina

Looking to make the most of your Ultimate Hike experience? Here are 10 suggestions that should help.

  1. Get boots that fit. I used to always get boots on sale or close-out — then weclickforcauses (102 of 46) wonder why my feet would get so beat up. Hiking boots/shoes is one area where you should focus on fit, comfort and performance and endure the sticker shock. Read more…
  2. Socks: Back in the day, we had one sock option: tube socks (though we did have quite the array of colored calf stripes to choose from). Today, there’s a “technical sock” for every occasion. Hiking in dry, sandy conditions? There’s a sock for that. In a jungle? Got ya covered. Climbing a scree field? Yup, there’s a sock specifically woven for that (or so the packaging claims). Read more…
  3. Hydrate! If you take but one piece of advice from this post, make it this: drink! Nothing torpedoes a hike faster than becoming dehydrated. Hydration is an ongoing process, one you should be particularly aware of two to three days prior to a big hike. Read more…
  4. Layer your clothes. Some of you will begin training in the cold of winter and do your hike in the heat of spring. Others will start training during the dog days of summer and do your hike in the cool of middle to late fall. Either way, you’ll be hiking through a range of temperatures and weather — sometimes in the same day. From a clothing standpoint you’ll need to be equipped to deal with heat and cold and dry and wet conditions. Read more…
  5. Eat! “Bonk”: that’s the technical term for getting to the mid-point of a 10-mile hike and suddenly running out of energy — and the will to proceed. Avoid bonking with the one-two punch of fueling up beforehand and during a long hike. Read more…
  6. Train for night hiking. No kidding, at almost every Ultimate Hike at least one hiker seems surprised and shocked by the fact it’s dark — and will be for at least the first couple hours. The notion of hiking at night — through a dark forest amid a cacophony of weird and unidentifiable sounds  — can seem freaky at first. But for most, once they hit the trail and get used to living within the cozy glow of their headlamp, it’s a treat. Read more…weclickforcauses (104 of 46)
  7. Consider hiking poles. It’s interesting how many people have no interest in hiking poles at the start of training and how many do after the first 10- or 12-mile hike. Leave your vanity in the closet and do your knees and feet a favor by getting hiking poles. Read more…
  8. Have a good day pack. If you already have a pack, stick with it for the first few weeks. Take note of what works for you (lots of pockets), what doesn’t (minimal access to the main compartment). Then go to your favorite outfitter and check out the options. Read more…
  9. Cross-train. It’s not all about hiking. True, the best way to build up to a 25- or 30- or 35-mile hike is to take long hikes. But odds are you don’t have time to head out every day for a 2-hour, 6-mile hike. Read more…
  10. Listen to your body. As your hikes get longer, your body will be entering new physiological territory. New things will be sore, new aches will surface. You’ll want to pay attention to these new and strange feelings and deal with them before they become an issue. I suggest keeping a malady journal with you on your hike and making note of any  annoyances that pop up. Read more…

Day In the Life: Cynthia Leach, CCRP

Cynthia LeachCynthia Leach is the Clinical Trial Manager at St. Joseph’s Children’s Hospital’s Center for Pediatric Cancer and Blood Disorders. Cynthia is in charge of all of the clinical trial protocols at the hospital; she enrolls patients, manages data collected through the clinical trials, looks for toxicities and adverse effects to treatment, and works with each department to ensure that the clinical trials are managed properly. CureSearch recently talked to Cynthia to learn more about what her role entails.

Q: What lead you to pediatric oncology?

A: During my college internship, I was able to work on the children’s oncology floor and knew then that I wanted to do all I could to help make life better for the kids who came in for treatment. It’s been a journey these past few years, with ups and downs, but I can’t imagine being anywhere else.

Q: Tell me about a typical day at the hospital.

A:Every day is a little different. Usually, I attend a morning meeting, at which we discuss each child that is coming in that day. These meetings are a forum for the medical team to prepare for what each patient will need and make sure that each department is on the same page. Being the clinical trials manager requires that I work with patients and their families to make sure that they are on track with their treatment protocols. I also collect samples from different procedures  for laboratory analysis to show the progress of the treatment.

Q:What is your favorite part of your job?

A: I love working with children and their families. Being able to walk into the play room and get caught up interacting with a child makes the work we do much more personal. Since I work on outpatient floor on the oncology ward, I get to know some of the children on the clinical trials very well. It’s great when everything goes well and we can successfully treat these kids and they get to go to kindergarten, get their drivers licenses, or go to prom.

Q: What is the hardest part of your job?

A:The hardest part of my job is when treatment isn’t successful. I want to do as much as I can for the children we treat, but sometimes it isn’t enough. I know that no matter the outcome, the work we all do helps to create better treatments for children with cancer.

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.