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 rates have a downward trend from there: Ewing's sarcoma is about 75%, AML a

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 cancer free.  The only side effects he has in being color blind (which mig

       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 and survive), as compared

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 me cry.  I was twelve, and the only experience I'd had with childho

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 (leiomyosarcoma).  While these cancers are rare, 1

    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 for the donation.       Please consider either joining the registry or donat

     ...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, such as Li-Fraumeni syndrome.     Lots of researc

   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

    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 o

   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 allowing them to join without paying for their typin

     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): 1 in 330 children will get cancer before age 20 20% of c