Monday, September 30, 2013

Childhood Cancer Awareness Month in Review

This September has been incredibly good in raising childhood cancer awareness.  Let's reflect:

  • 41 states, plus the US, Australia and other countries
  • Multiple buildings in large cities, including Boston and New York, were lit gold with awareness
  • The Truth 365 hosted the first annual CureSearch
  • Natalie Grace doubled her goal, by raising over $100,000 for the Truth 365 Dream Team, a group of dedicated pediatric oncologists and researchers
But there's still more that needs to be done.  Our goal is to have childhood cancer awareness all year round, to never forget and always to raise awareness, no matter what month.  

Sunday, September 29, 2013

Recent Research Strides in Childhood Cancer

ALL genetic cause - researchers at the University of Washington have officially identified an aberrant gene PAX5 as a cause for pre-B cell ALL, the most common form of childhood cancer worldwide. This will allow for genetic screening of families, as well as targeted genetic treatments.
Read the article:

Incurable Cancers Clinical Trial - A first ever clinical trial aimed to study childhood cancers that are considered incurable is underway.  The trial is not, however, to test a new drug.  The trial will use high level genetic and chemical analysis to determine which current drugs will be most effective to treat the child's specific tumor makeup.
Read more:

Reducing toxicity in blood cancer treatments - new genetic testing may be used to asses the potential toxicity of various chemotherapies in children.  Doctors will also be able to better predict responses to treatments by using genetic assays.
Read more:

Mutation in Low Grade Gliomas - a mutation in diffuse low grade gliomas could offer insight into treatment of these tumors, which are diagnosed in 1000 children annually.  These tumors, while being slow growing and treatable with surgury, often recur and spread, and can mutate easily into glioblastomas, which are often lethal.
Read more:

Saturday, September 28, 2013

One week more

   With one week to go until the CureSearch Walk here in Salt Lake, and the Rhabdo Warriors are still looking to raise more for Childhood Cancer research!
   Why, you might ask, should I donate to childhood cancer research?  I can tell you stories, about children you've never met, some who you never can meet, and they might touch your heart, but they do not affect you directly.
    One day, childhood cancer will affect you.  It might be your child, grandchild, niece or nephew.  It could be a more distant relations than that, a cousin or great nephew.  It could be your child's friend, a student at the local elementary school, the child of your friend.  You should donate to childhood cancer research to help this child in your future, so they have a chance at a cure, so they have a chance to survive without terrible long term effects.  Help end childhood cancer to protect the children in your life.
   Donate to the Rhabdo warriors effort to end childhood cancer here.

Thursday, September 26, 2013

Children are not just numbers

    Inspired by an article on PAC2, about a speech given by Annette McKeon, regarding her daughter Aimee and childhood cancer:
" I can stand here and give you statistic after statistic. I can stand here and tell you about the various forms of cancer that affect our children today. I can stand here and tell you that cancers in children get the least amount of federal funding to be shared amongst the 12 major forms of cancer as well as there many subtypes. I can show you graphs that tell you how many children are affected by each different form of cancer. But, they are nothing more then a bunch of numbers… Children are not numbers on a chart, they are not statistic‘s on a page. They are human beings who deserve a chance at life just as you and I have had."
Annette goes on to describe children who are not just statistics.  They are real children, living in this world of childhood cancer.  Instead of using her examples, I would like to add my own:

    Ariel was diagnosed with Rhabdomyosarcoma in October of 2007.  She was a spunky twin girl, with a love of baseball, especially the San Francisco Giants and Romo.  She passed away after a brave battle and multiple relapses and complications in December of 2012.

    Per died on Easter Sunday in 2010 at the age of 9.  He was diagnosed with Rhabdomyosarcoma in 2004, a battle he won, and then Glioblastoma Multiforme in 2007.  He loved stuffed animals and school.

   Nolan, my brother, was diagnosed with Rhabdomyosarcoma in December 2006.  He loves football and video games.  During his treatment, he collected penguins from the different cities in which we received treatment, with his favorite being Boston, from where he got his radiation treatments.  Nolan is now a junior in high school, a long term survivor.

Children are not statistics, their outcomes are not numbers.  There is no math that can describe what childhood cancer does, what pain it causes.

Read the PAC2 article here:

Wednesday, September 25, 2013

Ewing's Sarcoma Research

   The university of Utah's Hunstman Cancer institute was recently given a grant from Curesearch to search for genetically based treatments for Ewing's Sarcoma.
   Ewing's is a soft tissue tumor that originates in bone, but has often metastasized by the time it is diagnosed. After the first round of chemo and surgeries, patients often relapse. It is the second most common bone cancer.
   This new treatment would focus on inhibition of a key protien in Ewing's Sarcoma: EWI/FLI, which causes uncontrolled cell growth and a lack of cell to cell adhesion (which allows the cancerous cells to spread more easily in the body).
Read the article from CureSearch here:

Tuesday, September 24, 2013

Radiation Therapy: proton v photon

   Traditional radiation therapy uses photons, high energy particles, to target and kill cancer tumors.  These packets of energy hit the tumor and scatter.
    Proton therapy, a newer type of radiation treatment, better targets cancer.  When the protons hit the targeted tumor, there is less scatter to the body tissue surrounding the tumor.  This is especially important in sensitive areas (such as the brain, abdomen and spine), and in areas where there are still rapidly growing tissues that are not cancerous (growth plates, reproductive areas, children).  This helps lessen side effects from radiation treatment, such as brain damage, sterility and diminished/uneven growth.

Monday, September 23, 2013

Pablove Shutterbugs

Pablove Shutterbugs encourages children with cancer in the art of photography. Enjoy at the link below:

Sunday, September 22, 2013


A message of hope as we head into the last week of Childhood Cancer Awareness Month:
There are hundreds of thousands of childhood cancer survivors living in the US today, with 1 in 500 young adults being a childhood cancer survivor.  Childhood cancer survivors live in all walks of life and are all around you.
While more children survive now then they did 40 years ago, many survival rates have stagnated (some have even decreased) in the past 20 years.  While there is hope, we need research, so there are more survivors and less funerals.

Saturday, September 21, 2013

Two Weeks!

We are now two weeks away from the CureSearch Walk here in Salt Lake!  The Rhabdo Warriors are still working towards our team goal of $250, and I'm still working towards my personal goal of raising $150.  You can donate towards my goal here or for the Rhabdo Warriors here.

Friday, September 20, 2013

Genetics and Cancer

    While the causes of cancer are still largely unknown, especially in pediatric cancers, new research is coming to light on the genetic similarities between types of cancer.
   A recent article on gene pattern similarities was published in the New York Times.  Read it here.   I will post a more detailed writing of genetics and cancer at a later date, hopefully with a link to some of the articles or abstracts mentioned in the NYTimes article.

Thursday, September 19, 2013

Viral Therapy

    Viral therapy is a novel approach to treating cancers.  Infectious shells (viruses) are altered so that instead of causing illness, they fight it from the inside. Because of it's broad applicability, viral therapy shows promise in treating cancer.
Read more about viral therapy:
Columbus Ohio
PubMed review of viral therapy
Nationwide Hospital

     There are many more articles on Pubmed that discuss various uses of viral therapy and oncolytic viruses. The abstracts are almost always free, and many articles are available through resources at local schools and public libraries.  Happy reading!

Wednesday, September 18, 2013

The Meaning of Survival Statistics

     After a brief hiatus from blogging yesterday due to a physiology mid-term this morning, I have returned to the blog-o-sphere.  I would like to describe the true meaning of survival statistics.  This stems from a conversation I had with a pediatrician last winter.
     I was at a social for women in science and was talking to a professor in pediatrics about my goal of becoming a pediatric oncologist. I was describing the need for better research and more effective cures, when she told be that most childhood cancers had a 95% survival rate and walked off.
     Childhood cancer's average survival rate is actually around 80%.  While some childhood cancers (as well as many adult cancers) have a survival rate in the 90's, most childhood cancers have low survival rates, with some being terminal at diagnosis (0% survival).  The most common childhood cancer, ALL, has a survival rate of about 87%. Retinoblastoma has a 99% survival rate, although the treatment is removal of one or both eyes, leaving the child visually impaired or blind.  AML, by contrast, has a survival rate of around 60%, same as rhabdomyosarcoma.  At the bottom of the heap are rare and difficult to treat tumors such as DIPG (0%) and papillary meningioma.
     Now, these survival rates are the 5-year survival rates.  Children who die, say, 6 years after diagnosis are considered "survivors" in these statistics.  Children who fall into this category include Ariel (14), Jack (10) and Per (10).  This means that a 2 year old diagnosed with neuroblastoma (the average age of diagnosis) has only a 69% of reaching 7 years of age. Does this seem like a "good" survival rate?

Monday, September 16, 2013

Take the Go Gold pledge

From the Pablove foundation:
The Pablove foundation is dedicated to fighting childhood cancer.  They are currently working on a cure for Wilm's tumor, a pediatric kidney tumor.

Sunday, September 15, 2013

The World to one person

"While you might be just one person to the world, you might be the world of one person."  Everyday, people are taking a stand against childhood cancer by helping some of it's victims.  The Navy football team has "adopted" 12 year old Matthais, a sarcoma patient from Virginia.

Saturday, September 14, 2013

Natalie Grace raises money

Natalie Grace is trying to raise $50000 by Sept 28 (her fourth birthday).  Natalie is fighting ALL, and is currently in the maintenance phase of the over two year treatment.  She has already reached $40000, and has been fundraising since April.  You can help her reach her final goal online, or via the mail:
P.O. Box 4064
Middletown, NJ 07748
c/0: Infinite Love for Natalie Grace (Andrea Verdone Gorsegner)

Thursday, September 12, 2013

Cancers 101

  Today, I'd like to take some time to explain some cancer jargon that I use on this blog, which are commonly used in the childhood cancer world.

  • Leukemia - a blood cancer that begin in the bone marrow and affects leukocyte development (white blood cell blasts).  The most common type of childhood leukemia is ALL (acute lymphoblastic leukemia), followed by AML (acute myloid leukemia).  There are also chronic and infectious leukemias, which occur mainly in adults. 
  • Lymphoma - a cancer of the B or T lymphocytes, a crucial part of the immune system.  It affects the lymph system as well.  There are over a dozen kinds of lymphoma, with the most common kinds being Hodgkins and Pre-T Cell Lymphoma.  
  • Sarcoma -  a soft or connective tissue tumor that can occur in various tissue types, such as bone (Osteosarcoma, Ewing's Sarcoma), cartilage/connective tissue (chondrosarcoma, fibrosarcoma, neurofibrosarcoma), skeletal muscles (rhabdomyosarcoma), or smooth muscle (leiomyosarcoma).  While these cancers are rare, 15% are diagnosed in children. 
  • Wilm's Tumor - a tumor of the kidney, which occurs only in children. 
  • Neuroblastoma - most common solid tumor that occurs outside of the brain.  50% of cases occur in children under 2, and grows on the sympathetic nervous system.
  • DIPG - as discussed in Tuesday's post, a tumor of the pons in the brain stem, which occurs only in children, usually in those under 5.
  • Glioma - a diverse group of tumors affecting the various glial cells that account for many brain tumors in children.  Types include glioblastoma multiform, astrocytomas, and ependyomas. 
  • Neutropenia - the period that occurs after chemo when blood cell levels plummet and immune system function is at an all time low. 
  • Bone Marrow - the innermost layer of long bones, where blood cells are produced.  It is affect by many cancers, and is affected by the majority of chemos.
  • Chemotherapy - literally a chemical that treats a disease.  Chemotherapy usually refers to the caustic, poisonous chemical used to kill cancer cells.  Chemos come in oral and intravenous forms, cause a variety of side effects, from hair loss to infertility and secondary cancers, and may or may not be effective on various types, stages and cell etiologies in cancer.

Wednesday, September 11, 2013

Be the Match

   For many children with leukemias and lymphoma, chemo and radiation aren't enough.  They need a bone marrow transplant to reset their immune system and cure their cancer.  While some children find a match in a sibling, or a parent, many lack a familial match.  They must turn to the National Bone Marrow Registry to find a match.
   The national registry is a database of HLA markers from thousands of people.  While some get lucky and fin a match, many do not.  They might wait months for a suitable donor to be entered in the database, and then it might be too late.
   Joining the registry is easy.  You register online and they mail you a cheek swab kit.  Donating is either PBCS, which is similar to a blood donation, or a regular marrow donation, which is an outpatient procedure.  There are minimal risks, and you will be saving someone's life.
Don't want to join the registry, or can't due to a medical condition?  The processing of each donor kit costs about $100.  With your donation, you can help grow the donor registry.
learn more a bout Bone marrow donation here.

Tuesday, September 10, 2013

Defeat DIPG

DIPG - Diffuse Intrinsic Pontine Glioma.  The worst of the worst tumors, with a survival rate of 0%.  That's right, no survivors.  The average time between diagnosis and death is 9-12 months, and this cancer occurs ONLY in children.  About 10% of brain tumors are DIPG, and this terrible, terminal diagnosis is given to nearly 200 families in the US annually.
Why no survivors, you might ask?  This tumor occurs in the oldest, and one of the most important, part of the brain, the pons, which control autonomic functions, such as breathing, swallowing and vision.  This tumor can't be removed, and chemotherapies can't stop it.  Radiation only slows down the tumor, but will eventually become ineffective.  The only option for children with DIPG is to be made comfortable.
But, some researchers speculate that since DIPG occurs in the oldest part of the brain, it may hold insight in to cancer biology that could help cure other cancers.  Research is the only way to find out what secrets are locked away in the oldest part of our brain.  Defeat DIPG.  End childhood cancer.

Monday, September 9, 2013

Reasons I Walk

      I am supporting childhood cancer research by walking in the Salt Lake City CureSearch walk on October 5.  I've created a team, the Rhabdo Warriors, to involve more people.  With only 27 days left until the walk, we are in the home stretch to raise money.  You can donate to my page here.  You can also donate to the Rhabdo Warriors here.

Sunday, September 8, 2013

Some Simple Facts...

...About Childhood Cancer:

  • 1 in 330 children are diagnosed before age 20. 
  • There are few factors that change susceptibility to childhood cancer.  It doesn't discriminate by race, ethnicity or socio-economic standing.
  • 1 in 5 children diagnosed with cancer die within 5 years.  
  • Additional children with cancer who die after 5 years are considered "survivors" in many statistics.  Children who fall into this category include Ariel, Per, and Jack, who died at 14, 9, and 8, respectively, but more than 5 years after diagnosis.  
  • If we take into account all children who die from childhood cancer, or from effects of cancer treatment, survival is only 66%.  
  • Half of these survivors (33% of all those diagnosed) suffer debilitating or severe long-lasting side effects from treatment, including kidney failure, heart and lung problems, retarded growth, emotional and behavior problems, and even secondary cancers.
  • Childhood Cancer is the LEADING cause of disease-related death in children in the US, killing more than pediatric AIDS, cystic fibrosis, athsma and congenital heart defects COMBINED.
  • 7 children die everyday from childhood cancer.  
  • 1 new drug has been approved for childhood cancer treatment in the last 20 years.  In the meantime, incidence of childhood cancer has increased 29%.

Saturday, September 7, 2013

Local Childhood Cancer Events

Want you see your local Childhood Cancer Awareness Month?  Look at for events in your area.

Friday, September 6, 2013

Children with Cancer in Music

So here are a few Childhood Cancer videos
John's Hopkins Children's Oncology singing "You Don't Know Your Beautiful"!
Seattle Children's Hospital, Kelly Clarkson's "Stronger"
I Back Jack Foundation
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.

*this is a repost from last year, but the videos are definitely worth watching.

Thursday, September 5, 2013

Project Violet

       It costs big pharmaceutical companies over 4 billion dollars to develop and bring a new drug to market. This means that most companies won't even consider developing drugs that won't sell millions of doses a year, in order to make a profit.  
     That leaves many diseases 'orphans', defined by the Orphan Drug Act of 1983 as a disease "for which there is no reasonable expectation that the cost of developing and making available in the United States a drug for such disease or condition will [be] recovered from sales in the United States of such drug". All childhood cancers fall in this category, being diagnosed in less than 200,000 people in the US annually (the definition of a "rare" disease).  But, as has been discussed, childhood cancer isn't all that rare.  However, it's still too rare for drug companies to pour money into.  This is why, in the last 25 years, only 1 new pediatric cancer drug has been developed.  
    Dr. Jim Olsen of Seattle has come up with a way to change this method of devloping drugs.  Already, his project has developed Tumor Paint, which allows real time, direct visualization of tumor cells.  It is sensitive enough to detect mobile cell in lymph ducts, moving between nodes in small groups.  It allows surgeons to get clean margins, and to spot small tumors that might not have been obvious in traditional scans.  With his organization, Project Violet, donors can adopt a drug that is being studied.  These drugs are all derived from the natural defence systems of plants and animals.  Tumor Paint, in fact, is from a protien in a scorpion.  
     While I can't get the TEDxSeattle Video to post directly into this page, it is definitely worth watching at the link above.  Dr. Olsen explains how Project Violet works, as well as the other great projects his team is working on, and how his team developed Tumor paint for less than 20 million, .5% of what big pharmaceutical companies would spend.  

Wednesday, September 4, 2013

The Truth 365

The Truth 365 is a documentary that was released last year.  It won Emmy awards in the DC region.  Narrated by a childhood cancer survivor, parents, children, siblings and doctors all talk about the many facets of childhood cancer.  The movie is only and hour. Watch this instead of your favorite reality show.  This is more of a reality than MTV could ever dream of.

Tuesday, September 3, 2013

Blood donation

    Another way to take action against childhood cancer, one that I forgot to mention yesterday, is blood donation.  Children with cancer go through many units of blood, and may need multiple units per transfusion. My own brother had 28 transfusions, and his treatment lasted only 11 months.  Leukemia treatment can last over 3 years, and can include bone marrow and stem cell transfusions, which requires other bodily fluids too.  You can help a child in need of blood by donating at your local Red Cross, or other community based blood center.  Each donation takes between 45 minutes and 1 hour, and can save up to three lives. Bonus: there's free cookies.

Monday, September 2, 2013

Photography to End Childhood Cancer

     This year, like last year, I will be raising money towards my CureSearch team by selling prints of my photography.  You can view my prints on the slideshow below, or check out the Photos tab. Email me at to order prints.

Print Pricing:
4x6 - $2
5x7 - $4
8x10 - $10
11x14 - $18
Includes shipping.

Sunday, September 1, 2013

Childhood Cancer Awareness Month

  While it's great to raise awareness and to educate people about childhood cancer, what we really want is action.  You can help take action during childhood cancer month in many ways:

  • Write a letter to the editor of you state, community, or school paper, telling them about childhood cancer awareness month, and asking them to run an article about it.
  • Write, email or call your local leaders: mayors, congressmen, assembly men, ect.  Tell them about childhood cancer awareness month and ask them to declare that your town/school/ state goes gold for childhood cancer awareness month, or issues a proclamation, similar to the presidential proclamation from August 30 (see yesterday's post).
  • Donate to an organization that researches childhood cancer, such as CureSearch, ACCO or St. Baldricks.  Specifically, you could donate to my CureSearch page, as part of th eSalt Lake City CureSearch Walk here.
  • Write about childhood cancer awareness through social media - Facebook, twitter, whatever you use. let people know that we need research.
  • Volunteer at your local Pediatric oncology ward.  Drop off new books and toys, especially ones that can be easily cleaned.  Volunteer to read books, put on puppet shows or lead crafts with Child Life specialists.
     Help spread the word to end childhood cancer by taking action.