Thursday, December 26, 2013

The Holidays

    Yesterday was Christmas, and today marks the beginning of Kwanzaa. The Solstice (Yule) was earlier in the week, and Hanukkah took place early in the month.  
    But as hundreds of thousands of families around the world celebrate, hundreds of thousands of other families are struggling to get through the season.  For them, this is the first holiday season after the loss of a child or parent, or being jobless or homeless.  Take time to remember those who are struggling this season, and help them through.  It might only take a kind word, to let them know that you are thinking of them.  

Blessed be this holiday season.

Thursday, December 19, 2013

Winter Break!

    Ahh, winter break is finally here.  I finished my final exams yesterday, then flew home.  It was an interesting set of flights, with all the hectic fun of holiday travelers.  I will be enjoying reading more Kathy Reichs novels and spending the holidays with my family.
   Enjoy your season.

Wednesday, December 11, 2013

Gabriella Miller Kids First Research Act Passed!!

  The Gabriella Miller Kids First Research Act passed the House of Representatives today!

  What does this mean? Researchers will get desperately needed funding to study pediatric illnesses, including childhood cancer.  This $126 million comes from tax form donations to the National Party Convention Fund.  So, this money is coming from the politician fund, which is awesome, because they don't need more money.  Thank you to everyone who emailed, phoned or otherwise contacted their representatives.

Tuesday, December 10, 2013


   Today marks one year since Brave Ariel earned her wings.  From her mom:
"RIP Ariel Gariano, you came into the world at 12:10pm on Aug 19, 1998. On Dec 10,2012 at 11:26 pm you breathed your courageous last and I pray you, your soul, your heart, are basking in the glory of the next world. My heart and soul vanished that late Monday night when you breathed your last in my arms Ariel Rose. Your heart beat on so strong, so determined, even though you couldn't breathe to feed it precious air any more. Your blue eyes remained closed as though in slumber, your chest stopped rising and falling and still the beat of your heart under my fingers was clear and strong like the wings of a bird fluttering, preparing for flight. Your lions heart still pounding as 3 nurses listened at your side stethoscopes drawn as they stood protectively around you...all of us helpless to do more than stand witness to your final moments in the body we all so dearly loved. In the middle of your chest, rested my hand, feeling your heart fight on, hard at first, than softer beats. than slow whisper beats, and finally silence. Thank you Haleema, Chuck, Vicki, Garin and Cat, for letting me be her Mom and helping me hold her and cradle her to the very last. Thank you for the smiles, tears and love that showered her in those final moments. 
I just can't comprehend the world has gone on, moved forward an entire year without her. That Fentons and Zacharys, and Chinese Restaurants the Bay Area over, could still function with a profit without Ariel Rose seems incomprehensible. How can there be a Thursday night bingo, without a fluffy pink shakedown artist waiting in the wings of 5 South amusing her nurses, bouncing between bingo and baseball, and chili cheese fries at the oddest moments. How did Disney and Pixar make a single cent without Ariel pushing their products before the production team even decided on a name (as the child waited with baited breath for BRAVE when it is was simply, The Bear and The Bow). And how can Pokeman battle in this world without Ariel and Noah at the helm. And won't Jake Garcia and Pat Swift simply revert to mere muggles without their wizarding spell quizzes and surprise OWL testing, reminders that Latin isn't just for medicine anymore. And 'little Anne' along with her Romo plush tiger, don't travel with her everywhere. anymore. And no Ariel, I still don't know if Big Anne has seen an otter yet (which drove you nuts), though you still can remain proud you at least introduced your doctor from Wisconsin to salt water taffy in the ER. Otter nagging and taffy lessons all on that very same night, you showed a young wet, homeless man, that not all angels have wings, or hair. and instead of celestial song, they sometimes wheeze and cough blood, as you pressed into the hand of this lost and bewildered stranger, begging him to find shelter and get food. No matter how sick, no matter how much you hurt, you always worried about others, family, friends, and sometimes, no all times, strangers most of all. I must sound mad rambling like this but I don't how else to voice my frustration. They say time heals all wounds (an enormous lie) the say the pain of absence gets easier, but it's another lie. I don't want to get better and I don't want the pain to ease, I want you back Ariel. I want my beautiful girl whose tinkling laugh contained the sound of a thousand fairies, and your mischievous grin bore the mark of a thousand imps. I want my angel faced girl who wanted a pet tiger instead of a puppy. who only liked princesses that could rescue themselves. I want the child who brought me to my knees in sheer humility at her quiet moments of kindness and her wrath at any injustice or intolerance. I want my girl who believed in underdogs and miracles, because she believed in, NO she IS magic. I want the child, I didn't deserve, who laughed and loved and fought and cared for all, not when it was convenient, but with every breath she took. And most of all I want the one thing that can calm my soul, the feel of your arms around my neck, the words 'I love you Mommy' said in my ear followed by the disgusting feeling of a tongue licking the side of my face as you dissolved into giggles yelling "LION CUB KISSES! LION CUB KISSES". Oh how poor Dr Julie in Infectious Disease would be horrified by our favorite prank. I miss you my lion cub with a longing that can't be put into words. How the Earth continues to turn on it's axis without your immense heart on the land to keep it moving, I'll never know. I love you Ariel Rose to infinity squared - Mommy"

Kids First Research Act

   Tomorrow (Wednesday), the Gabriella Miller Kids First Research Act will be voted on by the House of Representatives.  It takes the money raised from donations to presidential campaigns on income tax forms and uses it for research of various pediatric diseases, including cancer, autism and diabetes.  It would allocate $126 million over the next ten years.
    The act is named after Gabriella Miller, who died October 26th after an 11 month battle with an inoperable brain tumor at age 10.
   Consider calling your state representative to ask them for their support of the bill (HR2019).  Here is a list of representatives who sponsor or support the bill:

Friday, December 6, 2013

Ecole Polytechnique Massacre

    Today marks the anniversary of the massacre at the Ecole Polytechnique in Montreal in 1989.  On that day, Marc Lepine entered the Engineering classrooms at the college with a rifle and shot 28 people.  14 women were killed:

Geneviève Bergeron (born 1968), civil engineering student
Hélène Colgan (born 1966), mechanical engineering student
Nathalie Croteau (born 1966), mechanical engineering student
Barbara Daigneault (born 1967), mechanical engineering student
Anne-Marie Edward (born 1968), chemical engineering student
Maud Haviernick (born 1960), materials engineering student
Maryse Laganière (born 1964), budget clerk in the École Polytechnique's finance department
Maryse Leclair (born 1966), materials engineering student
Anne-Marie Lemay (born 1967), mechanical engineering student
Sonia Pelletier (born 1961), mechanical engineering student
Michèle Richard (born 1968), materials engineering student
Annie St-Arneault (born 1966), mechanical engineering student
Annie Turcotte (born 1969), materials engineering student
Barbara Klucznik-Widajewicz (born 1958), nursing student

   The rationale Marc Lepine gave was that he was against feminism.  These women were killed because they were women.  Because they decided to study in a non-traditional field.  While we hope the world has come further than this in the past 24 years, women are still often thought of as second class, or looked down upon for choosing a technical career.  Never forget these women.

Friday, November 29, 2013

Support Childhood Cancer Research while you Shop

PAC2 (people against childhood cancer) has put out their 5th annual Christmas shopping list for sites and stores that support or donate to childhood cancer research.  Find the complete list here from PAC2, and here from CureSearch.

Some highlights:
Yes, .5% isn't a lot, but thinking about what people spend on shopping, this could make a huge difference. If 100 people using this each spent $200 on Christmas gifts, that $100, which is enough to grow a set of cell cultures to test a drug or to study the molecular biology of a tumor type. This doesn't cost you anything, and you can only help!

CureSearch on Ebay!  Anyone can list their items under the CureSearch donations page, and anywhere from 10 to 100% of the sale goes to CureSearch.

Tuesday, November 26, 2013

Books and Other Fun Stuff

   November was (still is, it's not over) a busy month here in Salt Lake.  I organized and ran our first ever Girl Scout Night Jr here at the U (through SWE).  It was really rewarding to see all the young girls who loved math and science, and to see them explore and learn.  Picture here.  It was awesome!
   I have been doing more reading this semester, which makes me happy.  While I often read non-fiction, I've been reading more fluff this semester, due to the density of my class readings...

  • Gulp! by Mary Roach.  One of my favorite popular science authors, this book is about the digestive tract, and it's interesting features.  Probably not something to read while snacking, but a great book.
  • Books by Kathy Reichs.  These are guilty pleasure reads.  Kathy Reichs books are what the TV show Bones is based off of (one of my favorites TV series), so they are enjoyable.  I also like that they are set in Montreal and Quebec.  The details are good, and the plots are thick.  Read: "Spider bones", "206 Bones" and "Virals".
More books to follow, I just checked out two that look excellent.

    Due to the exorbitant airfare prices, I will be spending Thanksgiving here is SLC.  Lizi and I are then going on a people watching expedition to the Walmart downtown SLC for Black Friday eve.  

Happy Thanksgiving everyone!

Thursday, November 21, 2013

New Childhood Cancer Research Center

    John Huntsman, founder of the Huntsman Corporation, has announced the creation of a new childhood cancer research center, right here in Salt Lake City.  The center will study childhood cancer's many facets, including sibling risk, long term effects and new treatments.  So far, $100 million have been gathered, $50 million from Huntsman himself to build the "Primary Children's and Family Research Center."
   I am super stoked for this new center.  Not only is this a great step towards researching and curing childhood cancer, but it's literally happening in my backyard, less than a mile from where I live.  This is change, this is a huge step towards ending childhood cancer.

Press Release

Wednesday, November 20, 2013

Wednesday, November 13, 2013

Miss Representation

What is your daughter seeing when she turns on the TV?  The average child, age 8-18, spends 7 hours and 45 minutes being exposed to media, including TV, radio, and print.  What do young girls see when they look at the media today?
  • Girls have less career options.  Only  35% of girls in G-rated movies have a career, compared to over 60% of male characters. 
  • Girls need to be attractive/sexy to be successful.  This is all over the place.  Print ads with scantily clothed women outnumber women dressed for business tens times over.  Women in media are praised for their attractiveness, their sexiness, ect.  Men are praised for achievements.
  • Girls shouldn't be in STEM.  85% of STEM characters are men, only 15% are women.  
  • In order to have smart ideas, they must be balanced with ditsy moments. Now i'm not talking about the occasional muck-up we all have, I'm talking major character flaws.  Take Amy from Big Bang Theory.  In real life, the actress has a PhD in nueroscience, similar to her character, but she acts completely boy crazy and lacks many social skills.  Why is there such a steep price to be smart?
      When girls are assertive, they are called bossy, and their characters are made dumb, as if to say that they can't be a smart strong women.  When boys are assertive, we make them managers and call them leaders.  The next time you see a girl being assertive, tell her she has "executive leadership skills."  She is not "bossy", she has the makings of a successful leader, and she needs to be recognized for that.
     I was a little girl who was told she was bossy.  I'm still told that I am bossy.  But, I see boys doing the same things: taking charge, being the lead on the lab project, organizing events; boys are expected to fill those roles, not me.  It's even more obvious in my engineering classes. In my systems dynamics lab, I often take lead in programming and setting up equipment.  But, when the other (male) lab groups need help, they go to my (male) lab partner before me.  Why?  They expect that the girl isn't the one who set up the oscilloscope and wrote the computer program.
    It's time for girls to take back what's theirs.  We have been misrepresented in the media and our image in culture is distorted.  It's time to go from misrepresented to Miss Represented.

Thursday, November 7, 2013

October Updates

    So, it's been over a month since my last post, and boy has it been busy!
    The Curesearch walk was a great success.  I raised over 100, and will be making the 150 mark as soon as company matching comes through!  Team Rhabdo had a great walk and will be increasing our participation next year.
    Fall break was the week after, and I got to go back to WI.  I got to visit camp (twice), once to lead low-ropes and once for fall fest!  Awesome fun.
   Tomorrow is Girl Scout Night Jr, which I've been organizing since last may.  I'm super excited, but a bit nervous.  I'm hosting 66 girls grades K-5, plus 35 adults, to teach them about women in engineering and about how awesome it is.  Hopefully all goes well on that front.  The activities are super exciting, making silly putty, doing an egg drop and playing with the Van De Graaf generator.
    More updates on my life later.

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. 

Saturday, August 31, 2013

Presidential Proclamation, 2013

Presidential Proclamation: National Childhood Cancer Awareness Month, 2013

Every September, America renews our commitment to curing childhood cancer and offers our support to the brave young people who are fighting this disease. Thousands are diagnosed with pediatric cancer each year, and it remains the leading cause of death by disease for American children under 15. For those children and their families, and in memory of every young person lost to cancer, we unite behind improved treatment, advanced research, and brighter futures for young people everywhere.

Over the past few decades, we have made great strides in the fight against pediatric cancer. Thanks to significant advances in treatment over the last 30 years, the combined 5-year survival rate for children with cancer increased by more than 20 percentage points. Today, a substantial proportion of children diagnosed with cancer can anticipate a time when their illness will be in long-term remission or cured altogether.

My Administration is dedicated to carrying this progress forward. We are funding extensive research into the causes of childhood cancer and its safest and most effective treatments. We also remain committed to easing financial burdens on families supporting a loved one with cancer. Under the Affordable Care Act, insurance companies can no longer deny coverage to children with pre-existing conditions or set lifetime caps on essential health benefits. As of January 2014, insurers will be prohibited from dropping coverage for patients who choose to participate in a clinical trial, including clinical trials that treat childhood cancer.

All children deserve the chance to dream, discover, and realize their full potential. This month, we extend our support to young people fighting for that opportunity, and we recognize all who commit themselves to advancing the journey toward a cancer-free world.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2013 as National Childhood Cancer Awareness Month. I encourage all Americans to join me in reaffirming our commitment to fighting childhood cancer.

IN WITNESS WHEREOF, I have hereunto set my hand this thirtieth day of August, in the year of our Lord two thousand thirteen, and of the Independence of the United States of America the two hundred and thirty-eighth.


Friday, August 30, 2013

Kicking off Childhood Cancer Awareness Month

Hello everybody!
      Another semester has started here at the University of Utah, with all the fun and work college brings.  I'm delving into richer bioengineering coursework, including a physiology course with a focus on neural engineering.  I'm continuing with my involvement in SWE, working to bring STEM education to girls and women.
       I also got a grant to work on a research project in the lab I worked in during the spring.  I will be studying a latent form of antithrombin that is proposed to have anti-angiogenic properties.  These properties could be exploited to treat many diseases, including tumors, which would definitely be a good thing!  I'll write a post specifically about my research a little later this month, which brings me to by next point:
      As you all know (or at least I hope you do), September is Childhood Cancer Awareness month.  As I did last year, I will be 'celebrating' by raising awareness in every way that I can.  I will be posting daily about different facets of childhood cancer, raising awareness and educating on the realities of childhood cancer.  Lizi will be writing a column about childhood cancer for the Utah Daily Chronicle, which I will post the link to as soon as it's published!  I hope you'll help me turn the world gold as we become aware of childhood cancer.


Monday, August 19, 2013


   Today Elora celebrates her 15th birthday. But she celebrates without her twin, Ariel, who passed away in December.  Ariel was diagnosed with Rhabdomyosarcoma in October 2007, just as my brother was finishing up treatment.  She relapsed multiple times, fighting metastasizes in her spine and brain, and battled fiercely.  Cancer took her before her time, leaving her twin without her.
    Ariel is just one of the many warriors who inspires me to fight against cancer.  Today, think of all the birthdays that were never celebrated because of childhood cancer.

Tuesday, August 13, 2013

Wednesday, July 10, 2013

CureSearch Walk 2013

     This will be my second year participating in the Salt Lake City Curesearch.  This year, I've started a team: the Rhabdo Warriors.  I welcome any donations to either me, or my team.  My goal is to raise $150, with the team raising a total of $250.  Visit my page here, or join my team here.  Help raise money to support awareness for childhood cancer and to find a cure.

Tuesday, July 9, 2013

Summer Fun!

     Good morning all!  So far the summer has been great.  I've been working at day camp, which is super fun. I get to spend every  day, all day outside, hiking, swimming, playing games.  Pretty great fun.
     This past weekend, I took a trip to the upper peninsula with my darling boyfriend Alex.  We toured some of the state park and took some amazing photos.

Wednesday, June 5, 2013

Swimming Kids

     As many of you may know, I teach swimming lessons at the local YMCA.  I primarily teach young children (6 months to 6 years), but I also work with elementary age children, as well as special needs children, both in group and private settings.
    Unfortunately, a lot of children I work with in private lessons are terrified of the water, and are older, but never learned to swim.  It's very important to get children comfortable with the water at an early age, so they aren't the 7 year old who won't get their ears wet or the 12 year old who can't do a back float.  Also, if your child is afraid of the water, and you are taking them to swim lessons, do their teacher a favor and trim their nails :p.

Saturday, May 18, 2013

Children Living with Cancer

    Natalie Grace is 3 years old and was diagnosed with high-risk ALL (Acute Lymphoblastic Leukemia) in August of 2012.  Her mother is running a fundraiser for CureSearch, a mail in donation drive, that has so far raised nearly $6000.
    While all childhood cancer is deadly, ALL is one of the most common and most treatable childhood cancers.  In this, Natalie and her family are blessed to know that her cancer will be gone, hopefully, in November of 2014.  These treatments weren't available 20 or 30 years ago, but are now due to years of research and drug development.  Back then, like many childhood cancer today still are, chances of survival were slim.  We must continue to push, so that all families have the knowledge that their child has a very good chance of living a full life after being cured of their cancer.  
    Despite chemotherapy, IV pokes, radiation, blood draws, imaging scans and hospital stays, many young children stay incredibly positive during their treatment, even when on the brink of death.  They are happy, continuing on with their lives as they undergo treatment.  Here is a picture from Natalie's mother of Natalie cleaning her "patient's" tubing with alcohol wipes.  

Visit Natalie's facebook site here.

To donate to Natalie's donation drive, send money to:
 P.O. Box 4064
Middletown, NJ 07748
c/o Andrea Gorsegner of Infinite Love for Natalie Grace

IF WRITING A CHECK, please MAKE PAYABLE to: Arms Wide Open/The Truth 365

Wednesday, May 15, 2013

Goofy Animals

After a long day at work, enjoy some silly animal pictures. 

     The Potoo, a rather goofy looking, bug-eyed bird from south and central america.  They are nocturnal, which explains the large eyes. 

   And if you ever feel dumb, think about the sloth.  They sometimes grab their own arms, thinking they are tree branches, and fall to their deaths...oops.

Tuesday, May 14, 2013

Emmy Nominations

       Congratulations to "The Truth 365" for their three Emmy nominations.  Mike Gillette received two nominations, one for director and one for editor; Taylor Klein received a nomination for producer.  The nominations are in the Documentary category of the National Capital Region.  

Thursday, April 25, 2013

Happy DNA Day!

     Today marks 50 years since the landmark papers describing the molecular structure of DNA were published. Due to the X-ray crystallography work of Rosalind Franklin, Watson and Crick were able to deduce the double helix structure of DNA.
     You can read the three papers online for free here:
Watson, James Dewey; Crick, Francis Harry Compton (1953-04-25). "Molecular structure of nucleic acids; a structure for deoxyribose nucleic acid". Nature 171 (4356): 737–738. Read here:

Franklin, Rosalind Elsie; Gosling, Raymond (1953-04-25). "Molecular configuration in sodium thymonucleate". Nature 171 (4356): 740–741. Read it here:

Wilkins, Maurice Hugh Frederick; Stokes, Alexander Rawson; Wilson, Herbert R. (1953-04-25). "Molecular structure of deoxypentose nucleic acids". Nature 171 (4356): 738–740. Read it here:

Happy DNA day!

Tuesday, April 23, 2013

We Need Women

      Participants in a study on perception were given to nearly identical profiles on a future boss.  The same characteristics were given: smart, driven, hard-working, ect.  The only difference between the two profiles was the name: John or Kate.
     The participants loved John.  he was the boss they all wanted to work with, he sounded like a great guy.  The participants who had Kate profile though, even though it was exactly the same expect for the name, they didn't think they could work with her.  They thought that she sounds too harsh, too focused on her career, might even be kind of a bitch.
     Why is it that the same qualities that are revered in men are the qualities that make women "bitchy"?  The difference is how our society perceives women and men's roles.  It's why women hold 4.2% of CEO positions in Fortune 500 companies, are less than 20% of engineers in industry, and less than 20% of the seats in congress.  It's why women are 1/3 of the students in MBA classes, but total 2% of CEOs, 6% of top earners and 16% of board members.
    Women are supposed to be the homemakers, but we are not.  Industry needs more women.  Engineering, Science, Math and Technology need more women. Women see things differently, they can find different solutions and they provide new insight into problems that have been ignored by men for years.  Women don't  need to be dissuaded from STEM careers, from high power careers, from jobs that are traditionally "male".  We are strong, and it's ok.  Driven, smart and strong women are NOT bitches.

Friday, April 12, 2013

Some Winter Readings

Here are a few recent reads that I enjoyed:
  • The Poisoner's Handbook, by Deborah Blum.  A historic tale of the birth of pathology and forensic medicine in Jazz age NYC.
  • The Little Book of Pandemics, by Pete Moore.
  • Perfect Match, by Jodi Picoult.
  • The Great Influenza, by John Barry.
  • She's Such a Geek, edited by Annalee Newitz and Charlie Anders.  A collection of essays and stories from women in science, technology and engineering. 

If not now, when?

       Laura Rozo, a 20 year old Junior from University of North Carolina - Chapel Hill was diagnosed in 2011 with Rhabdo, the same kind of cancer my younger brother had.  This is a video of her speaking at the TEDx conference in February.  She knew she was dying, and she intended to live life fully.  After her diagnosis, she took flying lessons and went skydiving.  She challenged everyone to live life just as fully as she wanted to, as if they were dying.

       Laura passed away Thursday afternoon (April 11th).  Read the article on her by the school's newspaper: Rest in Peace.  

Wednesday, April 10, 2013

Bryce Canyon

     A few weeks ago I got to go to Bryce Canyon as part of a class in Nature Photography.  While it was super cold (-2 the first night), it was really cool.  The first night we shot the sunset and then went out at night to shoot the stars from the canyon.  It was beautiful.
     The second day we went out to shoot the sunrise at 6 am, when it was still bitter cold and dark.  Sadly, it was foggy, so the shots were not very good.  After breakfast, we went back to the canyon and walked all the way down and explored the slot canyons, hoodoos and awesome rocks!  We hiked about 5 miles, down one side, around the bottom, up the other side and around the canyon rim.  It got warm enough that I could get away with only wearing four layers (instead of 6). After that we had some free time to chill.  That night we went to a waterfall and shot some really cool water photos.  We finished up with an astronomy talk at the ranger station and the rangers had telescopes set up to look at Saturn and Orion's Nebula.
     On the last morning, we got up to watch the sunrise.  This time it was clear and beautiful.  I got some great shots of the red rocks glowing with the morning light.  It was a good trip, despite the cold!

Image copyright 2013 by Steffi.  Do not reproduce without permission.

Friday, March 29, 2013

Life with Lizi

I have a funny post about things Lizi says.

We are walking around the union, from lunch to Chemistry Lab, and there was a table of missionaries sitting on the Union lawn.  One of them walks up to us:

"Hi, do you have time to learn about Jesus Christ?"

Lizi: "NO, we're lesbians."

Then Lizi just walks away leaving the poor missionary wide eyed and scared.  And that, ladies and gentlemen, is how you get away from missionaries.

Wednesday, March 27, 2013


Today, another childhood cancer warrior lost her battle with cancer.  Miette Skiller was diagnosed with DIPG, an incurable brain tumor that kills over 90% of children within 2 years.  She was 7 years old, and was diagnosed in July 2011.

A young girl from Green Bay passed away from DIPG in 2008.  Her mother has created a charity in her name, which raises awareness of Pediatric Cancer, as well as raises money to send art supplies to children's hospitals, something that was very important to Mariah while she was on treatment. Visit Riah's Rainbow foundation here:

Miette also wanted to raise awareness of DIPG and childhood cancer, which she did by selling her homemade hairclips and bows.

You can read her mother's blog about Miette's journey here:

Here's Miette's story, as told by the Austrailian news company:

This is a video taken of Miette leaving the world.  Viewer discretion advised.  Miette and her family wanted people to see the reality of childhood cancer, which can be death.

Rest in Peace

Friday, March 8, 2013

Some Awesome Science!

Science, Engineering and Math (STEM) is one of my passions, so today I'd like to share some awesome photos from a facebook page I enjoy: I Love Science.

This one is funny because I use MATLAB all the time...

Saturday, February 23, 2013

Sarajevo roses

Sarajevo roses: a design made of red resin poured into the scars left in asphalt or concrete from a mortar or other explosive device. They are found in the streets of Sarajevo, the capital of Bosnia, from the siege that took place in the early 90s.

During the Siege of Sarajevo, an estimated 11,000 civilians were killed, including 1500 children.  The city was barricaded and snipers set up shop.  The conflict was driven by the  instability of Yugoslavia post WWII and the declaration of independence by many of it's provinces  (Croatia, Slovenia, Bosnia and Herzegovina).    It was the Bosnian sovereignty that set the Serbs to mount an attack.  Although the conflict began in 1992, the conflict wasn't fully resolved until 1996.  

Tuesday, February 19, 2013

National Engineering Week

So, in honors of National Engineers Week (which I just learned is this week), I'd like to post a joke about being a girl in engineering:
'The odds are good, but the goods are odd'

Monday, February 18, 2013

Adventures with Lizi

One of my closed friends here is Lizi.  We have lots of adventures, including getting free pie every Wednesday and being lab partners in Chemistry (sometimes following the procedure).  We have lots of fun adventures together.
Salt Lake City has a nice light rail system that was built for the 2002 Olympics.  As it happens, my dorm is nicely situated at one end of one of the lines.  So, for fun yesterday, Lizi and I decided to ride the train all the way to the other end, just to see what was there.
As the train started getting closer to the end of the line, we began to notice that we weren't really in the city any more, but more of a barren field with houses in the distance.  We got to the end of the line, and, sure enough, there really wasn't much there.  It's a newly developed suburb south of SLC, called Daybreak.  Coincidentally, Daybreak was named the number one planned community in America.  You can see more about how this place is eerily similar to the Stepford Wive's community.
So, Lizi and I asked a random stranger what there is to do in Daybreak on a Sunday afternoon.  The look on his face was fairly entertaining, similar to the look I give people who ask me what there is to do in my hometown.  We eventually stubbled onto a small shopping center, which, surprise surprise  is 90% closed on Sundays (after all, this is Utah).  We were hungry, so we decided to go to the one place open, a Sports Bar/Grill.  There were about 5 other people in the place, which we assume are the few non-Mormon residents of Daybreak.
The end of the story: Lizi and I are no longer curious as to what is at the end of the line.  Also, we have no desire to go there again.
Later that night, Lizi and I decided to go shopping, because she had a car for the weekend.  I don't usually have a car, so we were going to buy the heavy things that I don't really want to haul on the bus.  While I'm picking out some fruit, Lizi asks how strong I am.  I turn around, and there's Lizi, in the cart.  So, I pushed Lizi in a cart around Smiths at 9:30 on a Sunday night.  Good thing we had the store pretty much to ourselves.   Also, Lizi didn't get out until after we paid and had left the store.  The cashier was a little preplexerd.
Happy Adventures in College!

Sunday, February 17, 2013

Happy Caturday!

Even though it's now Sunday, I meant to put this up yesterday.

These are some of the gorgeous kitties at the Salt Lake City animal shelter.  Because I'm not allowed to actually have a cat in my dorm, I just go pet the ones that don't have owners.  I usually want to take at least two or three home.  Oh well.  Happy Caturday!

Friday, February 15, 2013

International Childhood Cancer Day

Today, February 15, is International Childhood Cancer day.  In truth though, every day should be a day for childhood cancer awareness, because every day, 36 children will be diagnosed with cancer in the US (46 on school days).

Thursday, February 14, 2013

Valentine's Day

Well, happy Valentine's Day everybody.  A few interesting tidbits about V-day:

  • Valentine's Day is also the feast of St. Valentine, who, according to Catholic legend, was imprisoned for wedding soldiers who were forbidden from marriage during the 3rd century in ancient Rome.  Coincidentally, there are 8 other 'St. Valentines', including one woman, spanning from the 3rd century to modern day.  Most were hermits...
  • St. Cyril also died today
  • 73% of flower buyers are men.
  • Cupid is Venus' son.
  • The oldest surviving love poem is from 3500 BCE
  • 141 million V-day cards are exchanged today.
  • Over $1 billion in chocolate is purchased for Valentines day
  • 189 million stems of roses will be sold today
  • On average, there are 220,000 proposals on Valentine's day
  • The LDS (Mormon) movement began in Ohio
  • Congress approved use of the first voting machine 1899.
Enjoy your cheap Valentine's day chocolate tomorrow!