Sunday, September 30, 2012

Who I Walk For



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 to fight cancer. Find a cure.

Saturday, September 29, 2012

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 only need treatments, but better treatments, ones without horrible short and long term side effects. Drugs that aren't so poisonouss that you can't touch the material, nevermind the fact that it drips into the veins of children. Help find a cure for childhood cancer.
** Addendum: This is how late effects are catagorized:
Mild- night blindness, hearing loss, diabetes, hypertension, athsma
Moderate - cataracts, seizure disorders, hepatitus
Severe - blind, deaf, amputation, infertility, emphysema
Life-Threatening - paralysis, heart/organ transplant, cognitive defects, cardiac arrest, lung, heart or kidney failure
Death
Hopefully that puts into perspecitive what "mild" and "moderate" side effects are: not your average dry mouth or constipation.

Friday, September 28, 2012

Aisy


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/

Wednesday, September 26, 2012

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 left out of both adult and childhood research due to their age.
Why are we treating childhood cancer like we did in the 80s? In no other branch of medicine is this acceptable. In the past 30 years, hundreds of new and innovative treatments and therapies have been created and implemented in medicine. Imagine getting heart surgury with equipment and techniques from the 80s. That just wouldn't be acceptable. But that is how childhood cancer is treated. In the past 25 years, only one new drug has been approved for pediatric cancer use. The rest of the treatments are either at least 25 years old or hand me down treatments from adult cancers, which are often not as effective.
Hand me downs and out dated treatments with awful side effects and sometimes dismal outcomes are not acceptable. Our children and teens are worth more than this. Join the fight and help find new and better cures for childhood cancer.

Sunday, September 23, 2012

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.aisysangels.com
Jack Bartosz. Jack was first diagnosed with cancer in 2005. He battled the cancer into remission, but relapsed in 2007, 2008, 2009, 2010 and 2011. Jack passed away on August 27th, 2012, after fighting 5 relapses. Together, he and his family founded the I Back Jack foundation. Jack was the lovable spokesperson, talking about the reality of childhood cancer through his own eyes. Watch his video here: http://www.youtube.com/watch?v=i5iIjAArhvM. Check out the foundation athttp://www.ibackjack.org/I_Back_Jack/Home.html.
Mariah. Mariah was diagnosed with DIPG (an inoperable brainstem tumor) in 2007. DIPG is an extremely rare and agressive cancer, with an average survival of 9 months after diagnosis. Riah passed away in 2008. Her mother founded Riah's rainbow an organization dedicated to not only imporving childhood cancer survival rates, but to imporving the lives of those childhren in the hospital through art supplies and other toys. http://riahsrainbow.org/index.html
I can tell you many stories of children who have fought and are fighting childhood cancer: Nolan, Parker, Per, Britany, Ariel, Emma, Emily, Talia, Austin, Sarah, Morgan, Amelia, Teddy, and so many more.
Just because your life hasn't been affected by childhood cancer doesn't mean it isn't important, or that it never will be. All children are at risk. Cancer is an ultimate equal oppourtunity disease; it strikes regardless of race, ethnicity, age, financial status and every other factor. Every child has a 1 in 330 chance of being diagnosed. If you have three children, the chance one of them will have cancer is 1 in 110.
Fight Childhood cancer. Show cancer you are going to win.

Saturday, September 22, 2012

A Summation

Many people don't enoy reading long posts about childhood cancer. So, here is a lovely graphic from the children's hospital of philidelphia:

Monday, September 17, 2012

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 never be a lone person battling cancer. Every child has parents that care for them, and often siblings who still live at home. This family is much different than that of the average adult cancer patient (average age: about 65).
But kids are more resiliant than adults. They tolerate more, and, given the right treatment, can overcome emotional problems. There is hope. To fully treat cancer, we can't just give chemo and call it good. We need comprehensive treatments, from diagnosis to remission and recovery.

Sunday, September 16, 2012

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



Saturday, September 15, 2012

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 are affected by cancer. That is 1 in 330 kids under the age of 20. That includes many underclassmen here at the U, as well as the children, siblings, cousins and friends of many other students. This is an issue that directly affects us as young adults.
Most of us, however, don’t think about childhood cancer. We don’t want to think about the 7 children who die every day as a result of it. We don’t want to think about the reality of cancer striking children. Well, we can’t continue to stick our heads in the sand and ignore childhood cancer. We must join the fight and find a cure to childhood cancer.
How? You can raise awareness by wearing gold, telling your friends that childhood cancer isn’t as rare as we wish it was, and by pledging your support to end childhood cancer. You can raise money for research by participating in a fundraiser, such as the Salt Lake City Cure Search walk on September 29th. Kids can’t fight cancer alone; they need our help to raise awareness and funding to find a cure. Today, I ask you to join the fight, and help cure childhood cancer.

Friday, September 14, 2012

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.

Thursday, September 13, 2012

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.

Monday, September 10, 2012

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 the cell and form cancer. Additionally, cancers can be caused by viral, bacterial or parasitic infections, such as HPV and hepatitis B and C. Still other cancers are entirely heretidary or genetically based (5-10% over all). Many pediatric cancers are caused by genetics, especially mutations and defects in the onco and tumor supressing genes.
So, when the cell is denatured, by one or more of these effects, it can begin to divide uncontrolled. Normally cell division has a variety of checks that keep the cells in line. However, with mutations and changes to the cell, these checks may become damaged or stop functioning altogether. This is cancer. An uncontrolled cell growth.
The cell continues to grow and divide, and it forms a tumor. If the tumor grows big enough, or is otherwise disrupted, it can break apart. These new pieces can travel through the body and grow in another place. These new tumors are called metasticized tumors, and they make the cancer much harder to treat. Unfortunately, up to 80% of children diagnosed with cancer have a metastic disease.
So what are the syptoms of cancer? Well, it's a long range, and certain syptoms are very generic, such as headaches, colds, fevers, bruises and lethargy. Certain more obvious syptoms come with certain cancers, such as hard lumps under skin, seizures, psychosis, paralysis, and abnormal bleeding/bruising. This is one reason childhood cancers are often diagnosed at a later stage: their syptoms blend in with the average childhood ills. It's when many of them pile up that cancer is diagnosed, or when something big happens, such as a seizure or a large growth.
So how do we prevent cancer? Well, nothing is a sure fire way to prevent childhood cancer, but there are ways to keep you and your family healthy.
  1. No Smoking!!!!!!!! about 30% of cancers are caused by smoking. It's not worth the risk, especially since there are so few (if any) benefits.
  2. Avoid carcinogens. Not sure if something is carcinogenic? Look it up. It's all over the internet.
  3. Eat right and stay healthy.
  4. Be alert for changes in health, mood and day to day activity that can signify childhood cancer.
  5. Avoid excess radiation. Duh!
  6. Know your family history. If you or your children are at higher risk of developing cancer, take extra precautions to avoid cancer causing agents.
New diagnostic tests and genetic screening are becoming availible. You can have a large portion of your genome sequenced for under $400, and it will tell you your genetic risk for cancers, diabetes, heart problems, drug interactions, ect. Note: this does not take into account family history or lifestyle. Perhaps someday a screening will be availible to detect all genetic mutations, and genetic therapy will be availible to prevent cancer. Perhaps. in the mean time, keep healthy, avoid toxic chemicals and spread awareness to end cancer.

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 curing pediatric HIV/AIDS, athmsa, birth defects, cystic fibrosis, and diabetes, combined. This would also give the two thirds of survivors who suffer from harsh treatment effects a better life (that's 6600 kids per year). That's an improvement to 9100 lives improved, and that's just patients. If we factor in siblings, parents and friends, the number grows exponentially.
Now, let's look at Pontential Years of Life Lost. PYLL is the number used by many organizations to normalize the amount of money put into certain diseases (to see if they are financially worth supporting). PYLL is the number of years lost prematurely due to a disease. For example, the average age for breast cancer diagnosis is 65 years old, and the average age of death in the US is 77 (for women). So, the PYLL for a breast cancer survivor is 12. In contrast, the average PYLL for childhood cancer is 67-70, where the average diagnosis is around 7-10.
While there are many more diagnosises of breast cancer a year, when one multiplies the numbers of diagnosises with the the PYLL, childhood cancer and breast cancer cause equal losses of Productive Years each year.
Now if we take the funding recieved by a disease and divide it by the total yearly PYLL, we get the funding per lost year of life. Let compare some common cancers:
  • Prostate Cancer-$896/ year lost. The average age of diagnosis is 72, and the survival rate is 99%
  • Breast Cancer - $100/ year lost. The average age of diagnosis is 61, and the survival rate is 90%.
  • Childhood cancers - $24/ year lost. The average age of daignosis is between 7 and 10, and the survival rate is between 80 and 65%.
So, childhood cancer costs as many years of life as breast cancer, but it recieves much less funding. Is that fair? No!
What can we do? Write to your representatives, tell them how much we need funding for childhood cancer research. Raise awareness. The more voices yelling, the louder we will be. Donate and raise funds for pediatric cancer research organizations, such as CureSearch and St. Baldricks. Get involved. Cure Childhood Cancer

Sunday, September 9, 2012

A Picture is Worth 1000 Words


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

Saturday, September 8, 2012

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 on the road trip out to Utah, and here in Salt Lake. bibliosphere.webs.com/apps/photos/album?albumid=13922437

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 my happiness. I don't want people to think of me for sadness" Jack Bartosz (Oct 4, 2001- August 27, 2012) /www.caringbridge.org/visit/jackbartosz
"This month, we remember the young lives taken too soon" /www.whitehouse.gov/the-press-office/2012/08/31/presidential-proclamation-national-childhood-cancer-awareness-month-2012

Friday, September 7, 2012

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. Almost 20% of survivors suffer some form of long term psychological distress, including anxiety, depression, and post traumatic stress symptoms.
Now comes the worst effect: death. 20% of childhood cancer patients die within 5 years. That's 7 each day. When the statistic is adjusted to overall (longer than five years after diagnosis), only an estimated 62% survive their cancer. 2% of late effects from treatments are also deadly, with an additional 4% being permenately disabling.
Patients and survivors are not the only ones affected by cancer and it's effects. Siblings and parents are also deeply affected. Both show elevated risks for devolping psychological and emotional problems, especially anxiety, depression and post traumatic stress syptoms.
So, think of cancer not as short term, but as a life long battle and test, where the full effects may not be realized for decades after treatment.

Thursday, September 6, 2012

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 scans and surgury to remove what was thought to be mucus, the tests came back that my brother had cancer, Aveolar Rhabdomyosarcoma, in his sinus.
After a year of treatment, my brother was declared in remission. Now, almost 5 years later, he remains cancer free, and a normal teenage boy.
After seeing what my brother, and other children I've met, have been through as a result of cancer, I am ready to fight. I plan to go into pediatric oncology, both clinically and in research. Currently, as a biomedical engineering student, I have oppourtunities to work in labs studying cancer, as well as to volunteer my time helping children with cancer at the local hospital.
This time, childhood cancer will not be slipping to the back of my mind, and I will not let it out of sight. Join the fight with me, and stand strong against cancer. Together, we can triumph.
I'll end with a poem (not mine):

Cancer is so limited.
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot destroy peace.
It cannot kill friendships.
It cannot suppress memories.
It cannot silence courage.
It cannot invade the soul.
It cannot steal eternal life.
It cannot conquer the spirit.
Cancer is so limited.
-author unknown

Wednesday, September 5, 2012

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:
  1. 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.
  2. 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, the vast bulk of childhood cancer treatments are adult drugs with a different dose. What?!!?!? Worse yet, most of these approvals were an after thought. Are America's kids worth only an afterthought from big drug companies???!?!?!? Research for Pediatric specific drugs is rare and often difficult to get funded. This is why the new Creating Hope Act, signed into law by President Obama this year, is such a big deal. It provides funding for pediatric specific research.
  3. Our understanding of cancer is very limited. We barely understand how cancer works and what it is, let alone how to stop it and deal with it's effects, as well as preventing and detecting cancer.
  4. Childhood cancer is an umbrella term. There are over 100 types of cancer, some more understood than others. Kids are more likely to get a "rare" cancer than adults, such as a sarcoma. Since we know even less about rare cancers, research is crucial to developing treatments.
  5. The treatments we have now are far from perfect. Chemotherapy comes with a host of nasty side effects and long term effects. While in treatment, chemo causes nausea, extreme lethargy, nuetropenia (death of white blood cells), low platlet and hemoglobin levels, and the list goes on. Chemo is so toxic that nurses often wear special suits to work with and administer it. For long term effects, chemo/ other treatments lead to higher risks/ development of diabetes, heart disease, secondary cancers (yes, more cancers), neuropathy, and psychological, academic and emotional problems. We need better treatments!
There are many more reasons, and I could go on for hours on why research is important. But, I digress. So, we need more research. Unfortunately, pediatric cancer research doesn't have a large market value, and drug companies don't really want to invest in a low return treatment. it's a money game. While the federal government can give perks, including patent benefits and grants, it's often not enough. Donations are needed.
Here are some organizations that donate to childhood cancer research:
http://www.curesearch.org/
http://www.stbaldricks.org/
Please Donate!
If you need a face to donate to, I am walking in the Salt Lake City Cure Search walk, and am trying to raise money, so here's my page: http://www.curesearchwalk.org/saltlakecity/steffil Please help me raise money to beat kids cancer!

Tuesday, September 4, 2012

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 blood mobile can go. Perhaps your workplace or university can or has set one up. Find blood drives through the red cross: www.redcrossblood.org/giveblood?utm_source=bing&utm_medium=cpc&utm_campaign=blood
Another donatable body fluid is bone marrow. This is the producer of blood cells and is found inside large/long bones, such as the pelvis or femur. Bone marrow is often comprimised due to cancer (or treatment), especially in leukemias and other blood cancers. Often a bone marrow transplant is needed.
Here the process is a little more complex. With blood, there are 4 types (A, B, AB, and O) which can be either Rh + or -. Bone marrow has thousands of unique types, therefore making matching important. Usually, the best bone marrow donor match is either a sibling or parent, and then a stranger. So, when parents and siblings don't match, how does one find a stranger with the right genetic type?
Enter the national bone marrow registry. This registry allows people to have their HLA type discovered, and then the data is placed in a computer registry. When no familial match is found for donation, the patients information is put in the registry to be compared to thousands of possible donors.
So, in order to provide the best chances of finding a match, hundreds of thousands of potential donors are needed. You can join the marrow registry at: marrow.org/Home.aspx. Donors of mixed ethnicities and young donors (age 18-45) are especially needed.
Please consider donating blood or joinging the marrow registry. It is worth saving the life of a child.

Saturday, September 1, 2012

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.