Why Kids with Cancer Deserve More

Jude, Age 4, Relapsed Acute Lymphoblastic Leukemia

According St. Baldrick’s and the National Cancer Institute, every year in the USA 13,400 children under age 19 are diagnosed with cancer. That is 36 children diagnosed with cancer a day, enough to fill an entire classroom.
Every day, 7 children lose their life to cancer, making cancer the largest cause of death by disease in children under 19. This is more than AIDS’s, asthma, diabetes, cystic fibrosis and congenital abnormalities combined. The treatments the
se children endure also give them lifelong side effects.

Because of the treatments they endured to save their lives, by the time these children enter their 30s or 40s, nearly ⅔ of the children will have chronic or life-threatening diseases. Despite these staggering statistics, childhood cancer remains grossly underfunded and there is a significant lack of research.

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Jude and Raulie, both fighting Leukemia

The National Cancer Institute reports that childhood cancers make up only 1% of all cancer diagnoses. Because of how rare it is, many people believe that the research needs to go to the people who will get the most benefit out of the research. However, this is denying the littlest cancer victims a fair chance at life.  On average, an adult diagnosed with breast cancer at the average age of 61 looses 16 years of life. A child diagnosed with cancer loses an average of 67 years of life.  This means that even though fewer children get cancer, those who do pay a larger price in lost years of life. However, the problem is much bigger than this. The problem lies within the organizations we trust to find a cure for cancer.
The problem t

Bailey, Leukemia, Forever 1

hat only a small percentage of the hard earned money that people are raising is being used for the purpose of research and finding a cure. According to James Bennett, professor of economics at George Mason University, the American Cancer Society held a fund balance of over 400 million dollars with about 69 million dollars in holdings of land, buildings and equipment. Of that money, the ACS spent only $90 million— 26 percent of its budget— on medical research and programs.

The rest of this money covered “operating expenses”. These operating expenses gave 60 percent in generous salaries, executive benefits, and pensions. So for every dollar spent on direct services, approximately $6.40 is spent on compensation and overhead. This leaves 16 percent or less on direct services for cancer victims.There is no lack of money. There is no lack of fundraising. However we are fundraising for a billion dollar industry that cares little about its mission and pays large corporate salaries.

Research for childhood cancer should get its fair share of funds, however, with such little money spent on research and programs for people fighting cancer, how can each cancer get the research it deserves? The answer is, it can’t. Someone is going to get the short end of the stick, and those victims are the children.  Why? Because childhood cancers are not profitable to pharmaceutical companies and private industries.

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One of the families that has been forced to fundraise in order to save their son’s life, is Barbara and Aidan Anderson from Tucson, Arizona. Their 4 year old son, Jude, is fighting Acute Lymphoblastic Leukemia for the 4th time. After surviving 2 bone marrow transplants, Jude is now doing well and looking forward to starting Kindergarten in September! We recently discussed with his mom the underfunding of pediatric cancer in the below interview.

 

 

You can see more of Jude’s story in the following video:

The funding and research for children has gone down every year since 2003. In 2008, the funding was 26.4 million. In comparison, the NCI set aside $254 million for AIDS research, and funding for breast cancer topped $584 million the same year. In 2011, the National Cancer Institute’s budget was 5.196 billion dollars. Of that budget, childhood cancer received the least amount of money, only 3.7%. However, both of these organizations use children with cancer as a huge marketing tool. By posting a bald child on their marketing collateral, the general public feels morally obligated to help save a child’s life. Little do they know where the money is actually going, and who is reaping all of the benefits.

Common misconceptions also frequently lead to a lack of research. Most people believe that childhood cancer is the same thing as cancer in an adult, just miniature. Because of this, there does not need to be research specifically designated to childhood cancers. We can just take the adult drugs and modify the dosage to help children.

The truth however, is that pediatric cancers are vastly different from adult cancers. Prostate, breast, colon and lung cancer do not occur in children. The most common childhood cancers are leukemia’s, brain tumors, kidney tumors and solid tumors throughout the body. Of each type of cancer, there are hundreds of different subtypes, each having its own treatment and prognosis. For example, there are hundreds of different childhood brain tumors that won’t be seen in adults. Astrocytoma, atypicical teratoid Rabdoid tumor, gangilogioma, medulloblastoma, oligodendroglioma, craniopharyngioma are all brain tumors exclusively in children.  These tumors and cancers need to be treated differently. However, despite this there has only been one new childhood cancer drug developed in the last 20 years.

Delaney Clements, Forever 12, Neuroblastoma

Out of all of the chemotherapy drugs on the market, only 4 drugs are approved by the FDA for use on children. In contrast, there are about 200 adult chemotherapeutic agents. Also, the chemotherapies and radiation commonly used to treat children children are toxic. Radiation given to children’s developing brain can significantly lower IQ, as well as limit the ability to read, do basic math, tell time, or even talk. So children are surviving, but at a very high cost. Many children develop secondary cancers and many other lifelong problems due to chemotherapies given to them as children to save their lives. Because of the treatments, by the time these children enter their 30s or 40s, more than 73% of survivors will have a chronic health problem such as vision impairment, hearing impairment, infertility, or secondary cancers.

This is an unacceptable situation. Childhood cancer continues to kill children every single day and people turn a blind eye to it because it is almost to heartbreaking to bear. Children are our most valuable asset, they are our future.

 

 

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Cat-fishing: Deception online

Over the last few decades,  dating and fundraising has changed drastically. People are now able to go on the internet and search for a romantic partner who has the same interests and life goals as themselves.  1 out of every 10 American’s have used an online or mobile dating website, and 6% of all American marriages met online. One of the most widely used dating websites is Match. Crowd fundraising is also now frequently used on social media platforms in order to raise money. One popular site to do this is called GofundMe.  The ability to hide behind a computer developed a new concept: Cat fishing. According to Merriam-Webster, Cat fishing is “a person who sets up a false personal profile on a social networking site for fraudulent or deceptive purposes”. Purposefully setting up Cat fishing is when people create deceptive identities online using a fake name, fake photographs, and fake personal information.

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According to Dr. Phil’s website, he gives a few helpful tips on how to spot a catfisher online. One of the pieces of advice he gives is to avoid people who’s profiles have no pictures. Also, people in the modeling profession should be taken with caution. If a person has fewer than 100 Facebook friends, and if there are not other people tagged in the photos, this is also a red flag that the images may be stolen. One of the most frequent abuses of social media involves cat fishing with traumatic illnesses and injuries. When we hear of a traumatic injury that often seems too huge, this is a red flag.

 

One example of a catfish story that went to extreme lengths is the story of Warrior Eli. On mothers day, a Facebook post went viral.

The Dirr family’s story is one of grandeur. They are a fiticious family of 11 children, one of which is fighting for his life against cancer for the 4th time. On Mother’s Day, Eli’s pregnant mother died in a car accident. Thankfully the baby survived. After nothing was seen on the news when this story would usually be widely publicized online, there was speculation raised.  That same day, the entire families social media accounts were deleted due to the creation of a blog called Warrior Eli Hoax.

It was discovered  that JRs Twins were the children of a blogger in Australia.

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As time went on, they found more and more lies. It is estimated that there was at least 71 fake Facebook profiles made to prove her legitimacy.  This was puzzling to many followers of Eli’s family, who saw the great extent that they went in order to deceive. The family had set up a blog going back for 5 years, a myspace filled with online photo sharing, and and a yahoo answers account posting questions about babysitters.

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This came to a huge upset by many people on the internet, especially the hundreds of families with their own dying children who went to comfort the Dirr family. Thankfully, the lying has been stopped and the perpetrator has been identified.

 

#GetEmmaToMeetTaylorSwift

Throughout my life, I have been very passionate about volunteering with children fighting cancer. I met Emma when volunteering at Children’s Hospital. She was being treated for Fanconi Anemia, a fatal bone marrow illness. She was bald, wore a brightly colored mask, had an NG tube coming out of her nose and dragged around an IV pole that was twice her size. Even while tangled with wires and beeping machines, nothing stopped her as she grabbed my hand and asked me to stack blocks together. Through all of her treatments, she remained unscathed. 11728717_10206936850368817_8892308090875889109_o.jpg

Facebook has been a very important tool for me to organize and mobilize people in order to make things happen for the greater good. After starting a Facebook page for her that now has 70,000 followers, I decided that I can use this account in order to try to make Emma’s wish come true.  Facebook is a very important tool for  to organize and mobilize people in order to make things happen for the greater good. Our campaign, #GetEmmaToMeetTaylorSwift, was born on her Facebook page, Prayers for Emma. Facebook Link

After we posted, the news to get Emma to meet Taylor Swift took the media by storm. Hundreds of people were retweeting #GetEmmatoMeetTaylorSwift and it even became trending on twitter. After thousands of people messaged the pop star on Twitter, her publicist finally responded and asked Emma to fly to Charlotte, NC to attend the show.

At the show, Emma got to meet her idol, Taylor Swift. After spending around 20 minutes together, Emma mentioned that she would love to dance onstage with Taylor. Originally she said no, but later on in the show we were surprised when she picked Emma up out of the audience for the song “Sparks Fly”

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Through the use of social media and twitter, this was able to be accomplished. Twitter has become a key source in motivating people in order to crowd raise and start grassroots movements. It works by building a community of leaders to propel ideas forward and make a change. Social media magnifies a message, making more people be able to see and act on things they feel drawn to. This in turn makes sure that the message is heard by people who are able to actually make something happen. If enough people share a message, anything can be accomplished.

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