Sunday, September 21, 2014


      What does survival really mean?  Most cancer statistics have a little disclaimer on the end, stating that they are the five-year survival statistics.  This is fine in many adults cancers, where the average age at diagnosis is in the upper 60s, and five years is longer than their average life expectancy.  But with childhood cancer, the average age is 10, meaning a child lives to be 15.  Is this really survival?  To most people, no, but this is the form the statistics take.  Five years.  That's it.
       The overall childhood cancer survival rate is about 80%.  However, since these are averages over all types of childhood cancer (over 100 kinds), they don't actually represent what these cancers are like.  ALL, the most common childhood cancer, has a survival of 87%, and retinoblastoma has a survival of 99% (keep in mind that the treatment is removal of one or both eyes).  However, the survival rates have a downward trend from there: Ewing's sarcoma is about 75%, AML and rhabdomyosarcoma have survival rates of about 60%, and DIPG is terminal upon diagnosis.  Not all cancers were created equal.

Friday, September 19, 2014


  I was thinking the other day about luck.  Someone said to me how my brother was lucky with his cancer, to get such good treatment.  Ii wanted to think about just how lucky we got.

    First, my brother was unlucky.  He got cancer, a 1 in 330 chance.  Specifically, he got rhabdomyosarcoma, which is a 3% chance for a child with cancer.  Rhabdo itself has a five-year survival of about 60%.  However, of the two sub-types of Rhabdo, my brother had alveolar, stage 3, putting him even lower on the survival chances.
    But then my brother's luck started to change.  He had no metastases, as 80% of childhood cancer patients do.  There was a hospital equipped to treat childhood cancer within 40 miles of our house, and our insurance company was willing to cover treatment there.  He completed his treatment without any major complications.  He went into full remission, and even now, nearly 7 years later, he is still cancer free.  The only side effects he has in being color blind (which might just be a coincidence), a bald spot from radiation, and he can't feel his toes very well.  The only thing to worry about now is that annual CT and blood work.
    So, you might wonder why I am so invested in childhood cancer, if my brother was so lucky.  After all, wouldn't some people consider my brother's treatment and outcome best case scenario?  I am invested in ending childhood cancer because this is the best outcome.  Because we don't have a cure, just treatments.  There will always be a treat of recurrence, always the possibility that new late effects will surface.  Because my brother beat the odds with his childhood cancer, I think about the kids in the majority, who weren't so lucky.  That is why I am so invested in ending childhood cancer.

Thursday, September 18, 2014

Photos for Support

    In order to work to raise money for the CureSearch Walk, I am putting my photography up for sale.  You can select from prints here, or comment below if you are looking for a specific kind of print.  Prints are available for the following prices:

4x6 - $3
5x7 - $5
8x10 - $12
11x14 - $25
Includes shipping.

To order prints, email Payments will be collected as donations to the Rhabdo Warriors team page.  You can also donate online without ordering prints to the CureSearch team Rhabdo Warriors.

Wednesday, September 17, 2014

A Childhood Cancer Recap

       September is Childhood Cancer Awareness Month. I wanted to provide a mid-month recap of some childhood cancer information.  Please use these to help spread awareness!
Some Childhood Cancer facts (courtesy of Candlelighters
  • Every year in the US 13,400 children (ages 0-19) are diagnosed with cancer. That equates to 46 children a day.
  • Another way to approach this number: 1 in 330 children will get cancer.
  • Childhood cancer is the leading cause of disease related death.
  • About 1 in 5 children diagnosed with cancer will die as a result of their cancer.
  • Over 60% of those who do survive suffer moderate to severe complications, including infertility, diabetes, heart disease, and secondary cancers.
  • The most common childhood cancers are leukemias, followed by brain and CNS tumors.
  • The average age for a childhood cancer diagnosis is 10 years old.
  • 80% of children has a metastic cancer (meaning the disease has spread and is therefore harder to treat and survive), as compared to 20% of adult cancer patients.
Now some facts about childhood cancer research and funding:
  • While the NIH allocates 5.6 billion dollars to cancer research yearly, only 100 million goes to Childhood Cancer. The NCA gives less than $250,000 annually.  
  • The American Cancer Society uses less than 1% of it's money towards pediatric cancer research, while using 21% of it's funds for fundraising, and another 7% on administration.
  • Over 90% of Childhood cancer drugs are adult cancer drugs that were reapproved for children. They are usually an afterthought of approval.
  • In 2012, President Obama signed the Creating Hope Act into law, allocating additional funding to companies persuing pediatric cancer research.
Now, my plea:
A common saying in the childhood cancer world is that when a child has cancer, the entire family has cancer. This couldn't be more true. Parents, siblings, grandparents and friends are all affected. A child with cancer often misses a year or more of school, setting them back academically. They are also separated from friends and family for long periods of time. Childhood cancers are often more aggressive than adult cancers. Childhood cancers are also usually diagnosed later, as there are very few screening tests, and even fewer are availible. Syptoms os childhood cancer are also syptoms of other childhood diseases, such as headaches, bruises, frequent colds and fevers, limps and soreness, or frequent nosebleeds. These diseases (over 50 different types) are horrible. We need a cure!
What can you do to help?
  • Spread awareness. Tell everybody about childhood cancer. Nobody wants to hear about dying kids. Too bad. You can't escape the reality of childhood cancer. The more people who know and are fighting for a cure, the better chance we will find one.
  • Donate to a childhood cancer research organization, such as CureSearch or St. Baldricks.
  • Wear Gold to support the kids.
  • Volunteer your time at a pediatric hospital or with a childhood cancer group.
  • Donate coloring supplies, gas/grocery cards or other day to day nessecities to families affected by childhood cancer.
  • Participate in a Childhood Cancer awareness event, such as a St. Baldricks festival or a Curesearch walk.
  • Learn more about childhood cancer.
  • Write to your representative in government to tell them how important it is to support pediatric cancer reasearch.
Thank you for supporting childhood cancer!
learn more at these websites:

Monday, September 15, 2014

Natalie Grace Fundraising

Natalie Grace is at it again, raising money for childhood cancer research one dollar at a time.  Last year, Natalie had a goal of $50,000 and raised $110,000!  This year she has set her goal at $150,000.

 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)

Sunday, September 14, 2014

Rhabdo is personal

       When I was twelve, my world changed.  I was thrown into the world of childhood cancer because my younger brother, Nolan, was diagnosed with Alveolar Rhabdomyosarcoma, an aggressive soft tissue tumor, which was lodged in his sinus cavity.

     The treatment for Rhabdo included nearly a year of three week chemo cycles of VAC - vincristine, dactinomycin, and cyclophosphamid, removal surgery, and four weeks of proton radiation therapy.  We met other families, other kids, who were getting rhabdo treatment at the same time, who had been diagnosed before or about the same time.  My brother is the only one left.  Rhabdo is a killer, with a 60% 5 year survival under good conditions.  Relapses and metastases are common, and many of those who made it to the five year mark died afterwards, more relapses, more metastases, more complications.

      For a long time, even the mention of my brother's cancer made me cry.  I was twelve, and the only experience I'd had with childhood cancer was hearing about my teacher's daughter dying of leukemia complications the year before.  But over the years, the tears gave way to a racing heart and sweaty palms to the ability to talk about my brother's disease without flinching.  Now when I speak up about childhood cancer it's only because I'm not a huge fan of speaking to people in general.  I know that childhood cancer is what I want to study, what I want to work on, what I want to work to end.  This is why I'm here, to help end childhood cancer.

Saturday, September 13, 2014


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 10, 2014

Meet the Players

      As a recap from last year, here are the main players on the childhood cancer field.  On the visiting team, we have:
  • 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. 
And on the home team, swinging for the win we have:
  • Chemotherapy - also known as chemo.  Literally a chemical that treats a disease.  Chemotherapy usually refers to the caustic 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.  while they are often seen as ineffective, they are the only option for treatment in most cases.  
  • Photon Radiation - traditional, high-energy radiation used to shrink cancer tumors and to kill the cells, also known as x-ray radiotherapy.  Photons spread as the impact the body, radiating into surround tissues and causing additional damage.  However, this is a very effective way to nuke tumor cells.
  • Proton Radiation - a newer type of radiation treatment using protons as the radiation.  Proton radiation was first used in 1989, with the first US treatment opened in 1990.  There were 6 US treatment centers when my brother was diagnosed (late 2006), and there are now 14 US centers.  
  • Immunotherapy - uses immunoglobulins (proteins that stimulate the immune system in the hopes to prod it into fighting the cancer.  These include "cancer vaccines", antibody therapy, and cytokines.  
  • Bone Marrow Transplant - the body's immune system is completely wiped out with a heavy course of radiation and chemo.  Bone marrow is the innermost layer of the long and large bones (femur, pelvis, ect) and where blood cells are produced.  The marrow is removed from the pelvis of the donor and is infused into the recipient.  
  • Clinical Trial - a method of getting cutting edge treatments that are being tested.  Since there have been few new drugs for pediatric cancer in the last few decades, a vast majority of childhood cancer patients are part of a clinical trial.  

Tuesday, September 9, 2014

Going Gold

    There are many creative ways to Go Gold in September.  You can paint your nails, wear gold ribbons, decorate your car or front door.  You can make jewelry, wear awareness t-shirts, or join a CureSearch walk.

How will you Go Gold?

Monday, September 8, 2014

Bone Marrow

       The most common type of childhood cancer is leukemia.  While leukemia can often be treated with chemotherapy, some children require a bone marrow transplant.  Siblings and parents are tested first, but if they don't match, the only chance is a stranger match through the bone marrow registry.
       The only way to get a stranger match is to have a large group of donors to choose from.  The best matches are often from donors with a similar ethnic background, so a variety of donors are needed.  Joining the registry is easy, but make sure that you are ready to commit to a bone marrow donation before joining.  These patients are counting on you to help them survive.
      If you aren't able to commit to donating marrow, consider donating financially.  It can cost hundreds of dollars for all of the testing required for donors before they can join the registry.   That also doesn't include costs for the donation.
      Please consider either joining the registry or donating to help those who can't afford to but still want to give marrow.

Sunday, September 7, 2014

Open your hearts...

     ...and your wallet to help end childhood cancer.  In just under three weeks, I will be walking in the Salt Lake City CureSearch Walk as the team captain of the Rhabdo Warriors.  You can help us end childhood cancer by donating:

Who do I walk for?
Nolan - Rhabdomyosarcoma survivor
Per - Angel, Neuroblastoma and Rhabdomyocarcoma
Amelia - ALL survivor
Elizabeth - ALL survivor
Ariel - Angel, Rhabdomyosarcoma
Brittany - Angel, Neuroblastoma
Mariah - Angel, DIPG
Emma - Angel, ALL
Jessica - Angel, Rhabdomyosarcoma
Aiofe - AML survivor
Jack - Angel, Neuroblastoma

Saturday, September 6, 2014

Childhood Cancer Globally

   While the majority of the information I post about childhood cancer is from or about the US, childhood cancer is a global disease.  There are over 200,000 cases around the world annually.  Though the 5 year survival rate in the US and other high-income countries is around 80%, the survival in low and middle income countries (80% of the children diagnosed) survival is under 5%.  While childhood cancer isn't the biggest worry or cause of death by disease in low income countries, it still has a high prevalence around the world.  

Friday, September 5, 2014

Genetics and Cancer, part II

     As promised, a more in depth look at the role of genetics in cancer:

Cancer is, by definition, mutant cells. Somewhere in the cell line, a cell had an abnormality in it's propagation control and it's DNA damage control checkpoints.  This allows the cell to propagate without check no matter what damage it accrues.
     This abnormality happens in two main ways: oncogenes, which cause cell growth and multiplication, and tumor suppressor genes, which prevent excessive cell growth.  Cancers occur when either oncogenes are amplified or tumor suppressors are suppressed.  Usually, these mutations happen in cell line, and then cause a tumor to develop in that specific site.  One example of this is mutations caused by tobacco in lung cells, which causes a lung carcinoma.  Sometimes, these mutations occur when the embryo forms, known as germ line mutations.  These are commonly associated with high incidences of childhood cancer, such as Li-Fraumeni syndrome.

    Lots of research has been done in the past few years about the role genes play in cancer, especially in childhood cancers.  Because there hasn't been enough time for carcinogens to build up to the level of causing a tumor, most childhood cancers are thought to caused by genetic abnormalities.
     Researching the genetics of cancer cells also provides the ability to target treatments to the specific mutations they have.  An example of a targeted treatment is Gleevec for the treatment of Philadelphia Chromosome CML.  With increasing research, it is hoped that many cure rates will be greatly improved with genetically targeted treatments.

Thursday, September 4, 2014

A little bit about Rhabdo

   Rhabdomyosarcoma (RMS) is a form of soft tissue tumor.  It arises from skeletal muscle progenitor cells, and while they can occur in any area of the body, they commonly occur where there is no skeletal muscles, such as the sinuses, neck, and genitourinary system.  There are two main sub-types, embryonal and alveolar, based on the embryo stage they resemble.
    RMS is diagnosed in about 350 children annually, which makes it the most common childhood sarcoma.  By contrast, RMS is very rare in adults, with under 500 cases being documented in the last 30 years in adults in the US and Europe.  The majority of cases are diagnosed in children under 5, who also have the best prognosis.  Embryonal RMS has a higher survival rate than alveolar or undifferentiated, and prognosis also varies with site.
     Treatment can include up to five chemotherapies, along with radiation and surgery.  VAC, a three chemo combination treatment of vincristine, dactinomyocin, and cyclophosophomide, it the most common chemo treatment.  Treatment lengths vary with tumor location, size, and response to the chemo.  Relapse occurs 95% of the time within 3 years of treatment completion, and up to 90% of children who relapse don't survive five years.
     While most of the causes of RMS are unknown, 10-25% of cases have an underlying genetic risk factor, such as Li Fraumeni, Costello, or Beckwith-Weiderman syndromes.

Sources: X, X, X

Wednesday, September 3, 2014

Life as a Cancer Sibling

    To help share my story, I want to talk about what it's like to be a Cancer Sibling.  You might ask why this is important.  After all, we aren't the ones with cancer.  It's important to remember everybody left in cancer's wake.  It's important to realize that childhood cancer effects an entire family.

     I was 12 when my brother was diagnosed with Rhabdomyosarcoma.  The only experience I'd had with childhood cancer was my teacher's daughter dying of leukemia.  At the age of 12, I was forced to face mortality, the idea that my brother could die in the next year, the idea that this could happen to anyone.
     We siblings stop living our lives for the one, two or three years our brother or sister is on treatment.  We don't see our parents for days or weeks at a time, and our lives revolve around keeping our sibling healthy and safe.  We don't bring friends home, we don't go out.  My sister and I lived with my grandparents for 10 months in our own house.
     We feel guilty.  Was this our fault?  That one time we said or even thought "I wish I was an only child," was that the reason this happened?  And what if we get sick while our sibling is on treatment?  We hide it, it's not as bad as cancer.  I broke my foot, wrapped it in a bandage myself, and only told my mom when the middle school got involved because I was limping.
     We often live with mental health problems for our teenage years and beyond, especially if we were over 10 when our sibling was diagnosed or in treatment.  Depression, self-harm, low self-worth, and other mental health problems are common.  We lived terrified of losing our sibling to a monster we couldn't even understand.  That takes a toll.
     After treatment though, we become crusaders.  We fight back, whether it's one year or five years after treatment, as long as it takes for us to be ready to fight back.  We run blogs, solicit donations, speak out.  We want to become what cancer fears, because we've seen it's ugly face.  We are going to end childhood cancer.

Tuesday, September 2, 2014

Ways to help

   There are a ton of ways that you can help children with cancer, and they all take less than an hour of your time:

  • Donate blood.  Childhood cancer patients require blood throughout their treatment.  In my brother's year on treatment, he had 27 blood units.  Many patients, especially those with blood cancers, require even more blood.  
  • Get your vaccines.  As a result of chemotherapy, children on treatment are immuno-compromised.  This means their bodies cannot fight even the most common of infections.  The flu could be deadly.  By getting vaccines, you can preserve herd immunity and protect these vulnerable children.
  • Join the Bone Marrow Registry at  If you are ineligible due to health or age, please donate.  It costs about $100 to test and tissue type each donor's sample.  Many donors, especially the younger, preferred donors, can't afford this cost, and your donation will help grow the registry by allowing them to join without paying for their typing. 
  • Post on social media to raise awareness - see yesterday's post
  • Donate to CureSearch or St. Baldricks to support research.
  • Donate to ACCO (American Childhood Cancer Society) to provide support and resources to childhood cancer families, or find your local support group here to donate directly to area families.  

Monday, September 1, 2014

Media Monday

     To kick off this year's Childhood Cancer Awareness month, I thought I'd start with some social media advice on spreading awareness.  There are many ways to use media to spread awareness about childhood cancer. We've all seen the Ice Bucket challenge lately.  How can we help make childhood cancer awareness go viral?

  • Post about childhood cancer on your blog/microblog (see the majority of posts on this blog for types of posts and ideas)
  • Change your Facebook cover photo: Go Gold coverSimple Go GoldNo More Neuroblastoma coverKeep Calm coverFlow-y awareness cover
  • Change your social media (Facebook, Twitter, Instagram, Tublr, ect) photo/avatar to a childhood cancer awareness photo: Bee AwareWage a Gold WarI'm Aware (simple)Keep Calm and FundAwareness Stats
  • Post these 7 Childhood Cancer statistics on your social media page (one for each child who died from cancer today):
    • 1 in 330 children will get cancer before age 20
    • 20% of children diagnosed will not survive
    • 30 - 50% of survivors have serious complications from their treatments
    • Each day 7 children die from cancer, and 42 more are diagnosed
    • Pediatric cancer is the leading cause of disease death in the US, more than asthsa, cystic fibrosis, and pediatric AIDS combined.
    • Only One new treatment for pediatric cancer has been approved in the last 25 years.
    • Childhood Cancer research receives only $230,000 of the NCI budget annually - about how much it cost for my brother's treatment.
  • Use social media to solicit donations for CureSearch or St Baldricks - the two leading childhood cancer charities, each giving more than the NCI's allotment by at least triple.
  • If you use Blogger - hit reblog.  
Thank you in advance, and let's turn this September Gold for Childhood cancer awareness!