Monday, February 23, 2015

Tuesday, January 13, 2015

An Open Letter to Anti-vaxers

“An Open Letter to Non-Vaxxers:
Tonight, while enjoying a nice dinner, I got a call from the director of my son’s preschool. She was calling to tell me that they had made the decision to put my son in a different class because two children in the class he was supposed to be in have “opted out” of their vaccines. This may not sound like a big thing. He is still in the Tuesday-Thursday class, and since he doesn’t start school until next Tuesday, it’s not like he has to get readjusted to a whole new class. No harm, no foul. Actually, this is a big deal—a very big deal. You see, my son is immunocompromised. He has cancer. He was fully vaccinated and supporting the whole “herd immunity” thing before his cancer diagnosis, but that darn chemo wiped out his immunity to the communicable diseases against which he had already been vaccinated.
So, parents who choose to not vaccinate because you feel it’s the “right choice for your family”, I would like to thank you. Thank you for adding yet another worry to my plate and my husband’s plate. You see, we already worry about a lot—it’s an unfortunate part of your child having cancer—you worry every night. On top of worrying about things like relapse, organ toxicity brought on by chemo, debilitating late effects of chemo, secondary cancers brought on by chemo, the mental effects of having more than three years of painful treatment, we now get to worry about, of all things, measles. And mumps. And whooping cough. And chicken pox.
Let me explain something about having a child with cancer to you: everything is robbed from your child in some form or another. Friends, Halloween, Christmas, play dates, school. It’s all taken away at some point or another and in some form or another because we have to protect our children from germs, because if they catch the wrong germs during the worst part of treatment, they can die. My son was isolated from everyone except immediate family for an entire year. For parents whose children are going through chemo, the decision to send them to school is a momentous one. It requires a leap of faith and trust in the surrounding community, in your child’s teachers and administrators, and in the families sending their children to school. It requires herd immunity. Now, even though my son is now in a different class than your unvaccinated children, I get to worry about him using the communal bathroom, the playground, and even walking around the halls with them. If there is an outbreak of measles in, say, Austin this winter, I won’t know if you have relatives in Austin and went to go see those relatives for Uncle Bobby’s birthday. I won’t know if your child was exposed to measles at the Austin Chuck-E-Cheese and then showed up at school on Tuesday. Oh, I’m sure you’ll do your due diligence and call the school to inform everyone that your child has come down with a case of the measles once it appears, but, the damage is done—the exposure to my immunocompromised child has already happened. It’s too late. Your choice just earned him a ticket to the hospital. Your choice just earned him a lot of shots and more toxic drugs in the desperate effort to stave off whatever disease your unvaccinated child passed to him. If, God forbid, he does come down with that disease, your choice just earned him a trip to the Pediatric ICU for a while—days, maybe weeks. Your choice may cost us our son. Who knows—it depends on how his already stressed body handles everything.
People like to say that in choosing to not vaccinate, they are making the “best choice for their family”, and that, after all, their children are the ones at risk, not other people’s children. No, sorry, you’re wrong. Choosing to home school is a choice that is made in the best interest of a family—it impacts nobody but your family. Choosing to eat all organic and locally grown food is a choice that impacts nobody but your family. For that matter, choosing to eat nothing but fast food and frozen meals is a choice that impacts nobody but your family. Choosing to not vaccinate impacts my family and my immunocompromised son. It impacts the teacher who is pregnant and teaching your non-vaccinated child. It impacts the man going through chemo who happened to be behind you in the grocery store when your unvaccinated child sneezed. It impacts the mom next to you at the pick up line at school who is on immunosuppressive drugs for her rheumatoid arthritis and who is bending down to hug her child just as your unvaccinated child coughs. Your “choice” has repercussions for your community.
Part of the cost of living in a first world country is that you have to do things that support the community in which you live. You pay taxes to pay for the police that respond to your 911 calls, to pay for the teachers who teach your children, and to pay for roads to be plowed and paved. You obey traffic laws to ensure an orderly flow of traffic. You don’t shout “fire” in a crowded theater because to do so would cause pandemonium and chaos. Sometimes, to live in a place with the privileges we enjoy here in America, you suck it up and do things you don’t want to do because it’s for the communal good. If everyone chose otherwise, we would not be a first world country. We would be a country without laws, roads, and schools. We would be a country overrun with disease. Your responsibility to your community is to vaccinate your child. The number of people who actually, literally, physically can’t have vaccines is extraordinarily small. The number of people who choose to not vaccinate is not—it’s growing. These people cite a vague unease about the number of vaccines a child gets or statistics they learned from Internet memes on autism. They confess conspiracy theories about Big Pharma and how it’s all a ploy to get doctors and pharmacists rich. They share anecdotes of a college friend’s neighbor’s son who got so sick from his vaccine he was hospitalized. They say their child got incredibly sick from the one round of vaccines he or she got at his 2 month visit, and they said they’re not vaccinating anymore. Guess what—if your child is sitting here today, talking, walking, eating, laughing, playing, and learning, he or she wasn’t that ill from the vaccine. He or she got a fever and reacted to the vaccine—it doesn’t mean they had an “adverse” reaction.
I am horrified, non-vaxxers, that you are so quick to forget the lessons of history. You’re spoiled and selfish because you have never seen the horrors of a society in which vaccines are not available. Perhaps you should talk to my mother about her neighbor growing up—the one who contracted German measles while pregnant with her third child. That third child was born deaf and with brain damage, thanks to his mother catching that communicable—and now preventable—disease while pregnant. Perhaps you should talk to anyone over the age of 60 about what it was like when polio was around—how nobody was allowed to go swimming or use public drinking fountains for fear of catching that dreaded—and now preventable—disease. Perhaps you should talk to the parents of a child with cancer whose daughter spent a month in the Pediatric ICU during treatment because she caught chicken pox—a preventable disease—from an unvaccinated classmate. Perhaps you should take a trip to a third world country and explain to them why they should not be lining up in droves to get their children vaccinated by the Red Cross or other relief organizations. Perhaps, better yet, you should keep your children out of school.”

This author's real name had to be removed due to threats from these non-vaccinating people

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.