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In May of 2012, I was a typical 14-year old kid; competitively dancing, playing the viola, involving myself in numerous educational extracurricular activities, and was ranked in the top ten in my high school class. However, my life was forever changed after a mass, weighing nearly 16 pounds, was discovered in my abdomen. The doctors diagnosed me with stage 4 neuroblastoma, an aggressive solid tumor arising in immature nerve cells, which had already spread throughout my bone marrow. At that moment, I felt anxious and a sense of doom, like my world was collapsing before my eyes. I was soon informed that the current survival rate for stage 4 neuroblastoma is only 30 to 50 percent, meaning that up to 70 percent of children diagnosed with this cancer do not survive. Even after being given statistics that weren't in my favor, I decided that day to stay strong and never give up. I have become a fighter, continuing to overcome obstacles and inspire others in similar situations.Since my initial surgery to remove the tumor, I have undergone six rounds of induction chemotherapy, a stem cell harvest, high-dose chemotherapy, a stem cell transplant, radiation and immunotherapy. I have been one of the lucky ones and have been no evidence of disease since my second round of chemotherapy. I am also now partaking in a clinical study to maintain my remission status. While undergoing treatment, I spent nearly my entire sophomore year of high school in the hospital, in complete isolation, and in the pediatric intensive care unit. While in treatment, I met other cancer warriors and parents who had children that were not as lucky as I was. These people emphasized the significance of being grateful for the life one is afforded and to take advantage of all opportunities placed in one's path. People came and went, some walking out of the hospital after learning that they had beat this beast called cancer. Others were put on hospice and given days to live. After meeting these inspirational warriors and learning that only 4 percent of the national cancer budget is allocated to pediatric cancer research, I took the initiative and established my own non-profit organization. I created a foundation to increase awareness regarding the commonality of pediatric cancer and to assist adolescents while undergoing treatment. I started a 

to share my experiences with the desire to foster courage and hope in others. Chronicling my journey allowed me to express my inner-most thoughts and feelings, which otherwise I may not have verbally expressed. The responses of those I did not even know influenced my life in a positive manner and encouraged me to continue fighting and maintain an optimistic view. My blog was originally created with the intention of motivating others, but I was actually the one being uplifted. In August of 2013, I was contacted by the 

, the largest funder of pediatric cancer research grants besides the United States government, to serve as one of its five 2014 

. The organization hosts thousands of head-shaving events around the nation to stand in solidarity with pediatric cancer warriors and to raise money to fund the best 

. I accepted the offer and now attend events around south Florida, serving as a guest speaker and a face of childhood cancer. I have learned about my true self through this experience and I am now able to display my inner passion to serve as an advocate for pediatric cancer. In the future I aspire to become a pediatric oncologist and researcher, giving back to the community that saved my life. This past summer I had the opportunity to work as an intern in a pediatric oncology laboratory at MD Anderson. Working alongside professionals in the field, I learned that an immense amount of knowledge and dedication goes into creating new treatments. I hope one day that I will be able to create innovative treatments and give innocent children a fighting chance. My life mission is to improve the fact that 46 children are diagnosed with cancer and seven will succumb to the disease every day. 

Lauren Bendesky, 16, from Coral Springs, Fla., was diagnosed with stage 4 neuroblastoma when she was 14 years old. Lauren has finished treatment and is looking ahead to college with plans to study biology and become a pediatric oncologist.

Articles

A journey from neuroblastoma to ambassador

Did you know September is National Childhood Cancer Awareness Month? If not, you're not alone. Unlike many other months and the causes that they are attached to, the color gold will likely not take over store shelves in September to mark the awareness month, nor will buildings light up in the color to show their solidarity. Instead, the childhood cancer community will work extremely hard to bring National Childhood Cancer Awareness Month into the limelight, hoping to garner the attention of the general public. It is not an understatement to say that I am thrilled for all the attention that is given to worthy causes – though pink is not my favorite color, seeing the outpouring of generosity for breast cancer awareness in October is something to marvel at. I would say something very similar for February when red is everywhere you look, not only for Valentine's Day, but also for American Heart Month. I hope that all of these causes garner the attention of the masses, but I have to ask myself, is it so wrong to find frustration in the fact that cancers affecting our children continue to fly under the radar.When my daughter Alexandra "Alex" Scott was diagnosed with cancer prior to her first birthday, I certainly didn't know that an infant having cancer was in the realm of possibilities. I also didn't know that kids still died from cancer. Alex would battle cancer for the next eight years of her life, and would quickly outgrow the treatment protocols for her form of cancer, neuroblastoma. Imagine that, not only does your child have cancer, but the doctors are at a loss of how to treat her. We were fortunate enough to find clinical trials that would prolong Alex's life and give her a good quality of life; and while she would change the lives of so many through her lemonade stands, she would not see the day when cures would become realities. My daughter Alex died in 2004 at the age of 8, over 10 years ago, and still, as we are in contact daily with families facing childhood cancer, there are children facing the same fate. While our Foundation, and others are working to find cures, have funded groundbreaking research, some of which are leading to cures, there is still so much to be done. To me, without the support of the general public, a mass audience, childhood cancer will never garner the attention it deserves.In this very respect, Alex's Lemonade Stand Foundation is gearing up for the month of September in which we will invite runners, walkers, cyclists and everyone to contribute their miles as we collectively aim to log one million miles throughout the month. Why one million? Because what parent wouldn't go that distance, and then some, to find cures for their child? Also, Alex set a goal of raising $1 million in 2004, and while some people, including me, thought that was an unattainable goal, Alex did it with the help of others. Children with cancer need your help. They need your help in bringing the cause into the spotlight, not only in the month of September, but every day of every year until cures are found.  Will you join us on our #Journey2aMillion this September? Whether you do, or not, I hope you will take the time to tell one, two or three people that September is National Childhood Cancer Awareness Month – you can be a part of finding the cures we are so desperately seeking. To find out more about childhood cancer, or to join Alex's Million Mile – Run. Walk. Ride., visit 

Jay Scott is the co-executive director of Alex's Lemonade Stand Foundation. When his daughter Alexandra "Alex" Scott decided to hold a lemonade stand to help doctors find new treatments and ultimately a cure for all childhood cancers, including her own, Jay and his wife Liz supported Alex's mission every step of the way. After cancer took Alex's life they continued Alex's legacy of hope. What started as the vision of one little girl has been embraced by a team of 100,000 volunteers.

Going the distance for cures: National Childhood Cancer Awareness Month

I frequently give lectures. As a speaker, it can be a drag to talk right before lunch or a really serious drag to talk last at the end of a several day conference when even interested people fidget, yawn and squirm. So I was taken aback recently when giving a late afternoon lecture to a room packed with cancer survivors. I noticed a fit, 30-something looking woman in the second row not fighting to stay alert, but fighting to hold back tears. Hmmm. The lecture was on lymphedema, not advanced disease or recurrence.I continued on with the talk emphasizing positive points like the importance of being active, strengthening and exercise. Tears. I went on to show vibrant, engaging pictures of my breast cancer patients lifting weights, doing planks and cycling while training for a triathlon. More tears, and now her lower lip is quivering.  Our eyes met and I gave her a subtle wink, non-verbally saying, "Let's talk later."We met up after the room cleared. As she gathered herself, I racked my brain trying to come up with what I said that was so distressing. She finally spoke: "They told me I couldn't do any of that anymore."Wow. It wasn't what I said, it's what they said. "They" being her treatment team. Many of the lymphedema precautions spouted over the years were based on the conventional wisdom of way too long ago and on the old premise that if we tell people to do nothing, they'll be safe. Don't push, don't pull, don't lift, don't carry and you will be just fine. It turns out though, that the people that sat on the couch got just as much lymphedema as the people out playing in the park. It turns out that while some were told not to fly or lift anything over 10 pounds, other cancer survivors were safely becoming flight attendants and Olympic athletes. Arguments went on for years over what was best. The right answers, based on research and anatomy, are now clear. The lymph system is mostly passive, which means it relies on other forces to absorb and move fluid. Those "forces" include movement, muscle contractions, increased heart rate and increased breathing rate.  Yikes! I guess telling people not to move wasn't a good call. Though changes to the body from lymph node removal and radiation are not reversible, weakness, stiffness and decreased mobility are.  Whether you have lymphedema or are at risk for it, your arm, chest and shoulder (or whatever area lymph nodes were removed) should be strong, pain-free and function normally, regardless of the type of surgery.  If not, you are doing your lymphatic system a huge disservice. Studies show that rehabilitation and exercise, including lifting weights, both reduces the risk of lymphedema and decreases lymphedema symptoms.  And all the walking you are doing (you are walking, right?!) is helping improve your body mass index which has also been shown to decrease lymphedema symptoms and risk.Survivorship is already saddled with enough uncertainty to shed tears on misconceptions.  Do not limp through your survivorship. Push, pull, lift, and carry. "Moving is living" holds true for your lymphatic system as well; the more the merrier, the more the healthier. Go take a walk.  Your body has been through a lot, you deserve it.

Leslie J. Waltke is a physical therapist with a clinical mastery in oncology. She is a national expert, author, speaker and educator in cancer rehabilitation and is the Cancer Rehabilitation Coordinator for Aurora Health Care in Milwaukee, Wisconsin.

Tears in the second row

When someone is facing a lymphoma diagnosis the last thing they think about is public policy. However, public policy has the potential to impact the health, treatment and long-term survivorship of lymphoma patients just as much as scientific discovery.Today, the individuals who develop these policies (elected officials, policymakers and regulators) directly impact the medical treatments patients access, the nation's investment in innovative research, and even the way in which health insurers pay for cancer care. Unfortunately, the majority of these decision makers know little about lymphoma. That is why it is critical for those people affected by lymphoma to become advocates and take an active role in the policy making process.With that in mind, the Lymphoma Research Foundation (LRF) established the Lymphoma Education and Advocacy Partners (LEAP) program. LEAP was created in an effort to coalesce the community around those policy issues which have the greatest potential impact on the lymphoma community. LRF is excited to be joined by our founding member organizations: the Cutaneous Lymphoma Foundation (CLF), the International Waldenstrom's Macroglobulinemia Foundation (IWMF), the T-cell Leukemia Lymphoma Foundation (TCLLF) and The Double Hit Lymphoma Foundation (TDHLF).  LEAP will explore both legislative and regulatory initiatives and focus on those issues of highest priority to people with lymphoma, including access to quality cancer care, treatment cost, investment in innovation and lymphoma clinical trials.Through quarterly LEAP webinars, LRF will educate participants about these issues and prepare them to communicate with policymakers. These webinars will include presentations from experts in the field and will represent all points of view, including, scientific, legislative, and patient perspectives. At the conclusion of each webinar, participants will be given action items, such as email advocacy alerts that they can easily send to their Congressional Leaders.    LEAP's fundamental goal is to bring together patient advocacy organizations with similar missions to educate and advocate on behalf of the lymphoma community. We believe that through the collective voice of patients, survivors, caregivers and medical professionals, that legislation and policies can be developed so as to positively impact the lives of Americans living with a lymphoma diagnosis.To learn more about LEAP please visit 

Robin Roland Levy is the Director of Public Policy and Advocacy at the Lymphoma Research Foundation. In this capacity, she leads the Foundation's legislative and policy initiatives before the U.S. Congress and federal agencies, and coordinates the activity of the organization's advocate community.  

Guest

A journey from neuroblastoma to ambassador

Going the distance for cures: National Childhood Cancer Awareness Month

Tears in the second row

LEAPing into lymphoma advocacy

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