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Showing posts from September, 2012

Who I Walk For

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For the CureSeach walk today, since I didn't have a team or t-shirt to say who I was walking for, I made a sign to wear. All of the names that are written on the sign are children that I know who have, or had cancer. Children with names dotted with gold passed away as a result of treatment. When I opened my computer, after returning from the race, I was greeted with the news that I would need to dot a name with gold. Rest in Peace Bo. http://www.doorcountyadvocate.com/article/20120929/ADV01/309280328

The End of September

Today, September comes to a close. And with it, 2012's childhood cancer awareness month ends. However, this is not an ending. This is just the beginnning. There is so much more that can be done for childhood cancer, in terms of it's research, detection, prevention, treatment and long term managment, whether that be survivorship or grief management. Why do we need a cure for childhood cancer? So that no parent has to answer, "Mommy, what's cancer?", "when will I get better?" and "what's hospice?". So that no child has their life cut short by a disease or it's treatment. So that families don't live with the possibility that cancer could come back into their lives again with a relapse, a secondary cancer, or even another child's cancer. Childhood cancer awareness is year long. Cancer doesn't stop, so we can't either. Fight for a cure for cancer, until childhood cancer is a bad memory, and until children no longer need t

Outlooks

This graphic shows the true long term outcome of childhood cancer, with a 30 year span. While 20% of patients die within 5 years of diagnosis, an additional 14% die of their cancer 6-30 years of diagnosis. 19% of patients suffer life threatening or severe health problems, and an additional 25% suffer mild to moderate health problems. That leaves a mere 22% of children living a normal life after treatment, meaning they survive at least 30 years, and have no health problems related to their treatment. Only 22%. These 22% of kids, about 2900 of the 13500 kids diagnosed yearly, will go on to live a "normal" life after cancer. This is the only acceptaple long term outcome. Some people might be ok with mild to moderate health problems. I'm not, and neither are parents, or the kids who have them. Even if we do settle for these 2 outcomes, that still leaves over half of kids in the poor outcomes: death or severe, life-threatening problems. This will never be acceptable. We not o

Aisy

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4 Year old Aisy pulling her IV at Florida Hosiptal. Read more about Aisy at the foundation founded in her memory to help fight childhood cancer :  http://aisysangels.com/

30 Reasons

From "In it Together" : 30 Reasons to get involved in finding a cure for childhood cancer. http://neo4u.org/30-reasons-to-get-engaged-for-pediatric-adolescent-and-young-adult-cancer/

Teens with Cancer

Childhood cancers affect children and young adults ages 0-20. Cure rates have been steadily increasing over the last 20-30 years. However, in the 15-20 year age group,  no  improvement has been made. Yes, teens with cancer die at the same rate as they did in the 80s. Teens have the poorest prognisis for cancer of all age groups, including adults. While the cure rate has stayed the same, incidence has increased. This means that even though more teens are being diagnosed and dying of cancer evey year, we haven't been able to improve their treatment in the last 30 years. Teens also expirience the highest rate of secondary cancers due to the chemotherapy they recieve, and often suffer more side effects. Teens are harder to treat because they sit in the chasm between adulthood and childhood. Teen and adolescent cancers are also notoriously under researched. While childhood cancer is under funded and under researched as a whole, teens are the group least represented. They are often l

Connecting Facts to Life

In order to make statistics seem real and important you often need a face and a story. Today, I'm going to provide you just that. Aisylin Bledsoe. Aisylin died of nueroblastoma in 2010, just shy of her 5th birthday. Becasue the symptoms of nueroblastoma are so generalized, her tumor wasn't found until it was the size of a grapefruit. Her mother gained much publicty by posting a somewhat controversial photo, one of Aisy surounded by stuffed animals, which at first glance looked as though the little girl was sleeping. Actually, the picture is Aisy in her casket, a grim reminder of the reality of childhood cancer. Why this photo? It raised awareness and donations by giving people and in your face way to see childhood cancer. Something that couldn't be ignored. Here is the article about the picture:  http://www2.tbo.com/news/opinion/2012/sep/23/mother-helping-raise-awareness-of-pediatric-cancer-ar-510263/ , and here is the foundation started by Aisy's mother :  http://www

Telling a Story

A father's story of his daughter's battle with cancer. Raw and honest. http://www.upworthy.com/nsfw-a-comedian-silences-a-room-for-9-minutes-its-not-an-awkward-silence NSFW (a few curses)

Cancer: A Family Affair

It is said that when a child has cancer, the entire family has cancer. In many ways, childhood cancer affects the siblings, parents, extended relatives and friends. Studies have shown that within two weeks of diagnosis, parents show post traumatic stress syptoms, including anxiety, nightmares and sleeplessness. Patients show a higher risk for behavoiral and emotional problems after treatment, including depression, anxiety and Post Traumatic stress symptoms. Even toddlers have shown an increased risk for post traumatic stress syptoms, with the increase being seen signifigantly in kids as young as 18 months. Siblings too, are affected by treatment of their brother or sister. Younger siblings have shown to have more external syptoms, including agression/ behavioral problems, and trouble in school, while older siblings tend to have more inward syptoms, indluding anxiety and depression. Adolescent girls are the group at highest risk, both in patients and siblings. Childhood cancer will

Age 10

What were you doing at age 10? I as being a kid: playing with friends, going to fourth grade doing what most other kids do. What was my little brother doing at age 10? Going to chemo treatments and getting radiation therapy for cancer. Just like tens of thousands of other childhood cancer patients: kids who's childhoods were put on hold, or even stopped. The average age for diagnosis of childhood cancer is age 10. What do you want your kids to be doing at age 10? Probably not fighting cancer. That is why we need a cure. So that children don't have to give up years of their childhood to fight for their lives.

Raise Awareness

A raising awareness challenge for today: Has your local, state or student newspaper published anything related to childhood cancer awareness? Maybe, but more than likely not. So today I challenge you to write to or call your local newspaper and ask them to run a story about childhood cancer awareness. You can also write a letter to the editor, which I just did for the U of U student newspaper (fingers crossed it gets in). What do you say? Speak from your heart. Why is childhood cancer awareness and research important? Who does it affect? Why? How many? What can we do? Be straight-orward, passionate, and direct. Here's my letter: Every day, 46 families are told life shattering news: their child has cancer. Another 7 families will end their battle with cancer today, as their child has passed away. This equates to 12,500 kids being diagnosed with cancer each year, and 2500 deaths. Everyone knows what a pink ribbon stands for. But what about gold? Gold is for our children, who a

The Truth 365: On it's way

Today is the first day that "The Truth 365" will be releasing previews of their documentary about childhood cancer. Day one:  http://www.youtube.com/watch?v=URnulziqMNA Everyday a new preview will be released, and the final documentary will be released on September 23rd. You can visit their facebook at  https://www.facebook.com/#!/theTruth365film , or their website at  http://thetruth365.org/  to learn more about their movie and childhood cancer.

News in the Childhood Cancer World

So there have been some pretty big stories is the childhood cancer world lately. Here are a few: Founder and spokesman for the "I Back Jack" foundation, a foundation dedicated fighting childhood cancer, Jack Bartosz, passed away from neuroblastoma on August 27th.  http://www.ibackjack.org/I_Back_Jack/Home.html Stand Up to Cancer has partnered with St. Baldricks to bring more awareness and funding to childhood cancer and research. Taylor Swift performed an original song written with the help of the mother of Ronan, who passed away from cancer in 2007. She performed this on the VMAs, during which SU2C hosted a telethon. Proceeds from the song will also go to childhood cancer research.

What is Cancer

Today, I'm going to briefly answer a huge question: What is cancer? Cancer, also called a "malignent neoplam", is a broad group of diseases (over 200). It is characterized by uncontrolled cell growth, both as a primary tumor and as metasicized tumors. These cancer cells can break off and spread to other body systems and organs, including the blood and lymphatic system. While these types of uncontrolled tumors are cancerous, some tumors are benign, meaning they don't spread, invade or grow uncontrolled. The causes and mechanisms of cancer are very complex, and are not completely known. Some cancers are caused by environmental factors, known as carcinogens. Carcinogens are a broad group of toxic chemicals, found in a variety of places, especially in cigarettes/tabacco products and industrial chemicals. These carcinogens denature/change the cell, which alone can be enough to cause cancer. Other times, an already present genetic defect is needed to completely denature

Curing Childhood Cancer

What would it mean to cure childhood cancer? Let's think it terms of lives saved. Every year about 12500 children are diagnosed with cancer, and this number is  increasing . Yes, more children are diagnosed with cancer each year. About 20% of these children will die within five years, and another 5% within ten (so 25% total over 10 years). At the current rate, 2500 children die each year, about 7 each day. That's a minivan of kids each day (a 16 year old driver and 6 passengers under 20) that are dying from cancer; a typical elementary school class every three days. If you heard a story on the news about 7 kids massacred, you would be shocked, horrified and outraged. You would demand harsh punishment, maybe even the death penalty to the killer. Now, imagine this happens everyday, but it's the same killer. That's childhood cancer. So, if we cured childhood cancer, 2500 kids per year would be given a chance to reach adulthood and live happy lives. That's more than

A Picture is Worth 1000 Words

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Videos

So here are a few Childhood Cancer videos John's Hopkins Children's Oncology singing "You Don't Know Your Beautiful"  http://www.youtube.com/watch?feature=player_embedded&v=w75xWhtQ3Lk #! Seattle Children's Hospital, Kelly Clarkson's "Stronger"  http://www.youtube.com/watch?v=ihGCj5mfCk8 I Back Jack Foundation  http://www.youtube.com/watch?v=i5iIjAArhvM Taylor Swwift sings "Ronan", a song written with the mother of Ronan, who passed away at age 4 from childhood cancer. Buy the song, and proceeds benefit Stand Up to Cancer's Pediatric Cancer research.  http://www.youtube.com/watch?v=CS7JrI-JPOc

Photos and Links and Blogs, Oh My

So, I've now been at the U for three weeks. So far, so good. My classes are going well, and I have my first test on Friday (Physics), so I'm hoping that goes well. This week is homecoming week, and to start it off, we had a huge service project. Over 800 people participated, and lots of things got accomplished: food at the food bank got sorted, over 2000 blankets were made, over 250 emergency/first aid kits were put together, and lots of yardwork, cleaning and home improvement got done around Salt Lake. Tonight is the homecoming carnival, which I'm pretty excited for. I have been super busy with homework, studying, and ddoing things around campus. 18 credits will do that:). Last weekend we had monday off for Labor day, so I had some time to relax and take pictures. Life is good in college world. In other news, I have added to the link section with some new blogs/ websites about childhood cancer and other topics. I have also added a new album of photos, which I took both

Another's View

So today, I have prepared for you a collage of articles that take a variety of view in the childhod cancer world. I've started each with a quote to capture the essence, and to whet your curiosity. "How much chemotherapy will this buy Cara?" An 8 year old spends his summer competing for $1000, so that he can donate it to his 2 year old neighbor with Leukemia.  /today.msnbc.msn.com/id/48919761/ns/today-good_news/ "Who You'd be Today?" /curechildhoodcancer.ning.com/forum/topics/who-youd-be-today "Curing Childhood Cancer is the equivilent of curing Breast cancer in terms of productive life years saved."  curechildhoodcancer.ning.com/forum/topics/nci-funding-more-lies-damn "We all have busy lives but it's urgent that we each do more to stop kids from getting cancer."  /www.healthychild.org/blog/comments/090412_childhood_cancer_on_my_mind/ "Giving a voice to kids fighting cancer"  /thetruth365.org/ "People know me for

Long Term Effects

Cancer isn't a one and done disease, like a cold. it's treatment takes months, years even. And even then, cancer leaves it's effects. Over 60% of childhood cancer survivors have moderate to severe late effects. These come from a variety sources, mostly chemotherapy, but also from radiation, surgury and the cancer itself. Of these long term effects, almost 2% are fatal. Many different conditiions have been tied to childhood cancer treatments. Heart disease, athsma, diabetes, infertility and secondary tumors have all been linked to chemo and radiation treatments. Yes, that's right, cancer treatments carry an elevated risk of getting a second cancer. Late effects also include neuropathy, which can limit survivors' day to day activities. Some survivors loose limbs as part of their battle, which although not the end of the world, can lead to bullying and other problems. Nearly 15% of survivors are limited in daily activies. Some late effects are psychological. Almos

Where to Begin

So, this is try number 3 tonight for what to write. There is so much I could say about childhood cancer, it's importance, it's injustice, the pain it causes, and the need for a cure. But I've realized I need to start at the beginning. When I was in 6th grade, I was at a special school, in a class of 28, that would move through 7th and 8th grade together. There were 2 main teachers at the middle school, neither of whom I knew, yet. In May of 2006, a friend told me that the daughter of the math and science teacher had passed away at age 7 due to complications from childhood cancer. This was my first exposure to childhood cancer. We wanted to organize a walk in memory of her, and form a group at our school to promote cancer awareness. This didn't work out, and childhood cancer fell to the back of my mind as I started middle school. But cancer didn't stay there. In November 2006, my younger brother's eye began to bulge outwards. After visiting specialists, having

Childhood Cancer Research

Research is an extremely important part of childhood cancer and it's treatment. It is due to research that the 5 year survival rate of childhood cancer has risen to nearly 80% (note: this is only 5 years. the overall survival rate is about 62%). While only 1% of adults with cancer are enrolled in clinical studies and research, nearly 80% of kids are. Here are some reasons why: A high percentage of childhood cancers are metasticized. This means the cancer has spread beyond the primary tumor making it harder to treat. For this reason, traditonal chemo/ surgury/ radiation treatments may not be enough. New treatments are constantly being developed, meaning doctors, parents and patients alike are on the lookout for developments and hope. Childhood cancers are DIFFERENT from adult cancers. Yes, different. The cancers react differently to treatments, have different pathologies and the kids themselves are more resiliant and can handle different treatments than adults. Yet, despite this

Bone Marrow and Blood: Getting Involved

There are many ways to help children with cancer, and one way to do it is to donate your fluids: blood and bone marrow. Chemotherapy, the standard treatment for many cancers, works by killing rapidly reproducing cells, which is what cancer is. However, chemo isn't an exact treatment, and other rapidly producing cells are often caught in the crossfire. These cells including blood cells. As a result of this blood cell murder, most cancer patients need a blood tranfusion at some point. This is where you come in. See, here in America, our blood supply is mostly donations. And there are never too many blood donors. In fact, many areas suffer blood shortages, from not enough donors. This causes treatment to be delayed for hours or even days until blood is located and processed, creating harmful side effects. You can donate blood at either a donation center or at a blood drives. Blood drives are usually held at schools, churches and hospitals, but can be held pretty much anywhere the

Kicking off Childhood Cancer Awareness Month

Today, 46 families had thier lives turned upside down. They were told that thier child has cancer. Another 7 familes had their lives irreversibly changed. Their child lost the battle with cancer. This happens everyday. This is unnacceptable. Pediatric Cancer takes more children's lives that Athsma, Heart Problems, Birth Defects and Pediatric HIV COMBINED. As you read this, there are familes dealing with the unimaginable. Mothers and fathers are answering questions from their children that no parent should ever answer: "Mommy, what's cancer?" "When can I see my friends, go to school or be normal?" "Why does this medicine make me sicker?" "What's hospice?" Together, we can work to change this. We can work to cure cancer, find better treatments, address late effects, and support survivors. Wear Gold; Support the kids.