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Posts with tag rhabdomyosarcoma

Miles Levin has lost his battle with rhabdomyosarcoma

I wrote about Miles Levin and his powerful message a few months ago in this post. Since that day I randomly stumbled across his blog and wrote about it, I've been hooked. Miles has a way of writing that is captivating, heartbreaking and above all, moving. His words have caused me to look inside my own life and appreciate the gifts I am given every day.

Unfortunately, Miles lost his battle with cancer over the weekend, at home, surrounded by the comfort and love of his family. His body couldn't fight anymore, but his spirit will live forever -- that much I know is true. For anyone who is interested CNN is planning on airing Miles' story on Anderson Cooper tonight.

In his final interview, Miles said that he wanted to be remembered as 'someone who maintained their light through their darkest journey', and I think he's achieved that with an unbelievable amount of grace.

Cancer by the Numbers: Rhabdomyosarcoma

Rhabdomyosarcoma is a type of soft tissue cancer that is most often found in children. This cancer will usually present itself as a noticeable lump. Since this is a cancer made up of cells that normally develop into skeletal muscles, the lump can appear in different locations of the body. Although most of our skeletal muscles are in our limbs and truck, it is usually found elsewhere.

The most common sites that rhabdomyosarcoma tumors are found:

  • Head and Neck (30%-40%)
  • Urinary and Reproductive Organs (20%-25%)
  • Arms and Legs (18%-20%)
  • Truck (7%)

There are two main types of rhabdomyosarcomas that occur in children, embryonal rhabdomyosarcoma and alveolar rhabdomyosarcoma. The embryonal type (ERMS) is the most common type and usually occurs in infants and young children. The alveolar type (ARMS) usually effects older children and teenagers. Embryonal has a better prognosis than alveolar, which is a more aggressive tumor type.

About 3 percent of childhood cancers are diagnosed as rhabdomyosarcoma. In the United States about 350 new cases arise each year. It is the most common type of sarcoma occurring in the soft tissues, which is tissue that lies between the skin and the bone. It is the sixth most common cancer in children.

The researchers say there are no known environmental risk factors that cause rhabdomyosarcoma. There are some inherited conditions that can increase the risk of developing rhabdomyosarcoma but these are only a small fraction of those diagnosed. L-Fraumeni syndrome, Beckwith-Wiedemann syndrome, neurofibromatosis and Costello syndrome are inherited conditions that are known to lead to different forms of cancer. This information gives the researchers of this disease some key knowledge in understanding the disease and points them in the direction of a genetic cause for this type of cancer.


Continue reading Cancer by the Numbers: Rhabdomyosarcoma

Fit2cure rhabdomyosarcoma

In July I had written a post titled Raising awareness about alveolar rhabdomyosarcoma, about a young adult named Karin who was diagnosed with the disease in December of 2001. Karin created a blog to raise awareness for alveolar rhabdomyosarcoma. She continues to raise awareness and now she is setting her goal even higher, to raise money to research the disease.

In October of this year Karin Isabelle Dubois founded Fit2cure. It is a non-profit organization selling stylish products and apparel. The Fit2cure team is currently in its product development phase for their online store. Karin is realizing how hard it can be to get all this going, however with the help of her family and friends the Fit2cure products will hopefully be available soon.

Save the link in your favorites and check back later to order some of Karin's merchandise to support rhabdomyosarcoma research!

Raising awareness about alveolar rhabdomyosarcoma

Karin was diagnosed with alveolar rhabdomyosarcoma when she was 20 years old. She felt a lump in her breast in December of 2001. The biopsy showed a malignancy but it was negative for breast cancer. At first they thought this must be the result of metastasis since alveolar rhabdomyosarcoma rarely shows up in the breast as the primary tumor. After all the scans and painful bone marrow biopsy Karin was told that she had a localized tumor.

This was great news but Karin still had to endure surgery, chemotherapy and radiation. Karin created her blog to raise awareness about alveolar rhabdomyosarcoma. Karin struggles to find stories of hope for survivors of this disease. She feels hope is very important.

I check Karin's blog regularly and right now she is having what I hope is just a scare. Something showed up on her recent CT scan. It's really small and might be nothing at all. Right now they are doing the wait and see approach and she will have more tests in the coming weeks.

Searching for Shnnoogles

Five years ago, when Michael Dunn's seven-year-old son Steven woke one morning with a swollen left eye, he took him to the emergency room thinking they would come home with eye drops for Steven. Instead, Steven became the 33rd known case of rhabdomyosarcoma, a cancer striking soft body tissue, that had no long-term survivors over the age of 20.

Enter artist Connie Douglas. While doing some work in the Dunn home, she was in awe of Steven's spirit as he battled cancer that would most likely steal his life before he reached adulthood. Inspired by Steven, she contacted Phoenix Children's Hospital, with a proposal to create and donate artwork for the children who visited or stayed at the hospital.

The art project turned into nine wall story panels, and within each painted panel are hidden Shnnoogles. A Shnnoogle, which stands for caring and sharing, hugging and snuggling, giving in goodness and action, are furry snowball creatures with big round eyes. As children look at the panels, they search for the hidden Shnnoogles.

While Douglas was painting the panels, she was diagnosed with MS. To be equally inspired by Arizona Republic Kathleen Quilligan's feature Artist hopes Shnnoogles bring comfort to hospitalized kids, to find out how Steven and Connie are doing, and the book she plans to write, go here.

Tooth Fairy Project: low level radiation link to cancer

The Tooth Fairy Project is part of the Radiation and Public Health Project, RPHP, study into the relationship between low-level nuclear radiation and worldwide increases in cancer. Concerning America's cancer epidemic, RPHP has analyzed official National Cancer Institute, age-adjusted, breast and prostate cancer mortality rates, available since 1950 for every county in the United States, and demonstrated highly significant correlations between high cancer death rates and proximity to nuclear reactors.

RPHP research shows that of the over 3,000 counties in the United States, women living in about 1,300 nuclear counties, within 100 miles of a reactor, are at the greatest risk of dying of breast cancer.

The RPHP Tooth Fairy Project examines the levels of Radioactive Strontium-90, Sr-90, in teeth donated to the project. The chemical structure of Sr-90 is so similar to that of calcium that the body gets fooled and deposits Sr-90 in the bones and teeth where it remains, continually emitting cancer-causing radiation. According to the research, "Most of the strontium in baby teeth is transferred to the fetus by the mother during pregnancy. Because we know when and where the baby was born, and where the mother lived while carrying, we can accurately determine when and where radioactivity was absorbed from the environment."

RPHP has the support of scientists, physicians and citizens directly affected by proximity to nuclear power plants. In an endorsement for RPHP's work, Dr. Patch Adams writes, "As a scientist and physician for 35 years, I am well aware of the research in low-level radiation. We clearly have political leaders indifferent to and ignorant of the consequences. For twenty years I've gone yearly to the hospitals of Russia and have seen first hand the horrors of Chernobyl." RPHP offers a wealth of information and resources regarding low-level, nuclear radiation to cancer.

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