Bibliosphere

      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 rat...

Sometimes a photo is most powerful 

  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 canc...

       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 acco.org) 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 a...

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)

       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 m...

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

      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 ...

    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?

       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 ...

     ...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:  http://www.curesearchwalk.org/saltlakecity/steffi 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

   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. 

     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, ...

   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 treatme...

    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 l...

   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 bethematch.org .  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 ...

     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 cover ,  Simple Go Gold ,  No More Neuroblastoma cover ,  Keep Calm cover ,  Flow-y awareness cover Change your social media (Facebook, Twitter, Instagram, Tublr, ect) photo/avatar to a childhood cancer awareness photo:  Bee Aware ,  Wage a Gold War ,  I'm Aware (simple) ,  Keep Calm and Fund ,  Awareness Stats Post these 7 Childhood Cancer statistics on your social media page (one for each child who died from cancer today): ...

With the end of August, so comes the beginning of my Junior year of college.  It's amazing that it has been two and a half years since I started this blog, that it's my third year of not living at home for most of the year.  I want to reflect on what has changed since I started this blog on April 30th, 2012, and on what hasn't changed. What's changed: I live in Utah for most of the year I'm part of regional SWE - higher level than school or state, a position I was elected to I'm considering a PhD instead of a medical degree, despite below. I have an amazing new collection of friends What hasn't changed: I'm still majoring in Biomedical engineering I still want to be a pediatric oncologist I'm still a Girl Scout My room is always still messy, and I still don't like cleaning it So, all in all, I'm not all that different from when I started this adventure.  In blog tradition, Monday will mark the beginning of September - Chi...

As summer continues, enjoy this list of reads: The Spirit Catches You and You Fall Down, by Anne Fadiman - about cross-cultural medicine in the context of Hmong refugees.  Also has a nice back-story on the Hmong people. Mountains Beyond Mountains, by Tracy Kidder - about the life's work of Dr. Paul Farmer, who started a thorough public health and medical clinic in rural Haiti The Book Thief, by Markus Zuzak - the holocaust, written from the eyes of Death about a little girl living in rural Germany 33 Things Every Girl Should Know about Women's History, edited by Tonya Bolden - a collection of shorts about women's history and political movements Return of the Black Death, by Susan Scott and Christopher Duncan Buffy the Vampire comic books - entertaining, but not my favorite ever Most of these I read in May, since Day Camp is a full time commitment. Enjoy!

This summer has been fairly relaxing so far (although that is partly due to the fact I was furloughed from work for two weeks).  I've been catching up on my reading, and have come across a few gems of scientific and historical note: A 1500 year old skeleton showing signs of Down's syndrome (trisomy 21) was found in France. The child was buried in similar fashion to the others in the site, possibly indicating that the child was treated no different than others.  Read about it at New Scientist . A 50+ year old frozen smallpox vial was found while researchers were cleaning out an old freezer at the NIH facility in Bethesda, MD.  The vial, though unsecured, was still intact and fully sealed.  The CDC has gained custody of the vial.  The contents were DNA tested to verify it's contents (definitely smallpox) and is now being tested to see if it could have infectious.  Read about it on NPR , CNN , and TIME .   Apparently plants can hear themselves being...

      As I have previously mentioned, the NCI gives under 4% of the cancer research budget to childhood cancers, of which there are hundreds of types (dozens on leukemia, scores of sarcomas, ect).  In the past decade, funding has decreased 30%.         In a new campaign, StepUp, we challenge Congress, the NIH and the rest of the government to spend more on childhood cancer research. The goal of the campaign is to reauthorize the 2008  Caroline Pryce Walker Act , as well as to increase NCI appropriations for childhood cancer research.  You can join by visiting:  http://www.soundoffatcongress.org/direct/nY2f .

     This marks the third year of me walking in the CureSearch walk to end childhood cancer.  It's also the second year of the Rhabdo Warriors team at the walk.        I'm super excited to be walking again, and I hope to make an even bigger impact by raising more money and creating a bigger team.  You can donate to me here , or to the entire team here . You can also visit my walk page:   http://www.curesearchwalk.org/saltlakecity/rhabdowarriors .        So, if you're going to be in Salt Lake on September 27th, 2014, come join the rhabdo warriors as we walk to end childhood cancer.   http://www.curesearchwalk.org/saltlakecity/rhabdowarriors

      School ended a couple of weeks ago and I finished the semester with strong grades. I'm back in Wisconsin for the summer, and will be returning to camp as Snickerdoodle.         I've been on a busy adventure on the East Coast this past weekend.  To the right you can see all the places I've been: Penn, Ben Franklin's Grave, Chemical Heritage museum, Mutter Museum, Washington monument, Lincoln Memorial, Vietnam Veterans Memorial, WWII memorial, the White House, the Liberty bell, Independence hall, Arlington National Cemetary, Philly Art Museum, Smithsonian - Natural History Museum, Capitol, and John's Hopkins Hospital.  It was a fun filled weekend.       It's finally starting to green up here in Wisconsin (everything was still leafless and grey when I got here).  We have a robin's nest in our yard, with three baby robins in it.  They hatched last Saturday, so they are 10 days old.  They've gotten their fea...

     Here is a short list of some reliable sources for information on vaccines, many of which were used in my latest series of posts on vaccination ( I , II , III , and IV ). http://www.historyofvaccines.org/  - a site by the College of Physicians and Surgeons on vaccinations, their history and how they work. http://www.cdc.gov/vaccines/  - CDC's website on vaccinations, the related illnesses and immunization schedules.   http://www.ncbi.nlm.nih.gov/pubmed  - The NIH website that allows access to research peer-reviewed articles on a variety of topics, including vaccination.   http://www.asm.org/index.php/colloquium-program/browse-all-reports/91319-adultvaccinesfaq - information on adult vaccinations http://www.vaccines.gov/ - Vaccine information about vaccine science, vaccine preventable illnesses and travel vaccines.   Enjoy!

Myth: Children get too many vaccines – it’s dangerous to get so many. Since vaccines work by stimulating the immune system, they aren’t the same as a by weight dosed medication, such as benydryl, which works by influencing biochemical pathways.  It takes the same amount of exposure for any individual to develop immunity, and more or less exposure doesn’t mean a different outcome.  For example, if I sneezed on a baby and a teenager each once, they both could get sick.  It doesn’t take one sneeze to make the baby sick and five sneezes to make the teen sick.  One sneeze does it for both.  Chemical additives, as previously discussed, are dose specific, and are added in much smaller quantities than is required for any kind of side effect.  Myth: The diseases we vaccinate against aren’t a threat anymore The only vaccine preventable disease that isn’t a threat is smallpox, which was eradicated in 1979.  As a result, we don’t vaccinate against it anymor...

Part III on vaccines Myth: Vaccines cause Autism This is just loads of wrong.  The study that considered this was rejected by peer-reviewed journals and the writer was stripped of his medical license.  The study itself used techniques that were quite harmful to the children involved (unnecessary enemas, colonoscopies and other painful tests were performed).  Additionally, recent studies (2014) have concluded that the changes in brain structure and function that result in autism begin in utero (long before childhood vaccinations).  Vaccines do NOT cause autism.  Myth: The decline of vaccine prevented illnesses wasn't due to vaccines While some graphs seem to show that diseases were in decline, and therefore the decline wasn’t due to vaccines but other measures (from nutrition to sanitation and quarantine).   While these public health measures may have had some effect on the decline of these diseases, they weren’t enough to wipe out or even slow do...

Part two in my series on vaccinations Myth: I’m not a danger to people if I don’t vaccinate myself You are a danger to others if you chose not to vaccinate yourself (or your children).  See that infant? She’s too young to receive the whooping cough vaccine, but she has a 1 in 200 chance of dying from it, as well as a 50/50 chance of needing hospitalization.  Infection could last up to 100 days, and will require supportive treatment, such as oxygen, IV nutrition and fluids, and possibly mechanical ventilation.  See that bald man?  He has cancer, and his body can’t fight infections due to the chemotherapy.  The flu could easily kill him.  See that little boy wearing a mask? He is immune-compromised from a genetic condition.  He can’t be vaccinated because his body doesn’t form antibodies in response to vaccines, so they are not effective for him.  See that girl over there?  She’s allergic to the eggs in which vaccines are grown and can’...

   Today I'm going to start a series on vaccinations and immunizations.  I'm appalled by the amount of misinformation out there, and I want to address some of the common myths from a science/bio-engineering side.  If you have any additional myths you would like addressed, please comment on this post and I will address them. I will also provide reliable sources for the facts I discuss. I feel the need to write a post about vaccination, due to the insane amount of mis information out there on the internet.  Vaccination/immunization shouldn’t even be a debate, in my opinion.  It’s a no-duh kind of situation, yet an inordinate amount of people, nearly all unqualified to do so, feel the need to vehemently disagree with vaccination.  I shall now offer an argument of my own, as well as some refutations of commonly cited issues. I did go through a questioning phase, where I wondered about the science behind vaccines, which prompted me to do my own research...

     Ask the majority of people about genocide, and they will tell you about the holocaust.  You might ask them if they know of any other genocides, and a few might tell you about the movie Hotel Rwanda.      What the majority of Americans don't know is that there have been many more genocides.  There have been hundreds of crimes against humanity, some of which are still going on now.  243 Nigerian girls were kidnapped from school two weeks ago, yet I see very little on the news.  Today, 30+ people were killed in a Syrian marketplace, and on Tuesday 14 children were killed and 80 injured when a school was bombed.  These things should be making the news, but instead I see profiles on sports stars and celebrity gossip.      Crimes against humanity still happen.  They didn't stop with the Holocaust.  Be aware that not everything is as America-centric as we may think.

" Consider going into a classroom and looking around, and you’re the only man there. Even if you’re totally ok with that (heck, you expected it), you notice. You feel all the women in the room notice you and see that a lot of them are glancing over at you or making comments about your presence. Ok, you knew that might happen. A woman next to you says, “Hey, cool, a guy in a CS class, good for you.” When it comes time to form a study group, half the women in the class don’t want to work with you because they assume men aren't as good at CS. The other half jockey to work with you, some for the novelty (“Hey, I’m in a group with the guy, “) and half because they want to ask you out. When you go to apply for an internship, a lot of companies seem really interested in you, but you’re not sure if it’s because they like your resume or just because you’re a guy in CS and they want to look open and forward thinking by having lots of male interns coding. You meet up with a group of ...

   Recently, 9 year old Kamryn shaved her head at St. Baldricks in support of her friend Delaney, who is battling cancer.  In response, her school kicked her out until she either got a wig or her hair grew back.    This is the response that a young girl who took a brave step in loosing her hair was given.  She should be applauded for shaving her hair to support her friend, not ostracized from her school.  This is the response of St. Baldricks: "Kamryn, by your sacrifice and willingness to be bald like Delaney, you’re demonstrating that love is more powerful than fear and that life’s most valuable lessons are often learned outside the classroom." Kathleen Ruddy, St. Baldrick's CEO, shares her support in an open letter to Kamryn Renfro and Delaney Clements. After a massive social media campaign, Kamryn's school board voted 3 to 1 to allow her back into school.  This still means that there was an adult who thought she shouldn't be allowed back. ...

So, the last two months have been pretty busy.  I'm taking some really cool classes this semester: Diversity and Evolution of Life, Drawing for Non-majors and French Conversation.  I've been spending a good amount of time in my lab.  This semester I'm going to be presenting in the Undergraduate Research Symposium, which is pretty exciting. Last night was Girl Scout Night with SWE, the third one I've organized in the time I've been here.  We had 110 girls, which is a huge event, the largest I've ever organized.  It was a bunch of fun, and we really reached a lot of girls.  We also had a forum for the parents with some of our female engineers, so we got to educate the parents too. Next week I'm going to San Diego, which is going to be awesome.  It's the SWE region B conference.  There's a big career fair, lots of workshops and keynote speakers. I'm going to apply to present at Annual conference next year, so I'm hoping to pick up some pointer...

Be a voice for children with cancer.  In the time since this video was made, four of the children have passed away.  What does that say about how "treatable" childhood cancer is? https://www.youtube.com/watch?v=rS5T_3OUoZo

   Yesterday, I was notified that I was approved for a grant for an awesome event for middle and high school aged girls.  I'm organizing an into to Engineering event: Edible Engineering.  I'm really excited my grant got approved, so I can reach even more girls.