Author Archives: Team Captain

Bear with Me

I was a nurse for 29+ years and have loved the opportunities that I had to care for children with cancer during that time.  Knowing the role of a nurse and what an emotional toll childhood cancer takes on children … Continue reading

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RARE is not a dirty word

Editor’s Note: No one in my childhood cancer community, including me, likes the word “rare” when it used to describe the disease. I met Rob and three others from the childhood cancer community at a three day RDLA event in … Continue reading

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Mad as Hell…maybe

I certainly don’t want to scare you, the blog reader, away– but when provoked by someone or something like the American Cancer Society (ACS), I become one of these ladies. Why would I paint myself in this light, on “the … Continue reading

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Dear Caleb

  For my friends who may find themselves on a similar journey: Reflecting on Caleb’s short life: This is the most difficult thing that I do. It has been so long now. Memories are not as fresh and the emotion … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , | 6 Comments

C is for Cancer Camp

“I’m not sure if it is possible, but if I can send you a “signal” after I go, then I promise that I will.” by Laurie’s mom, August 6 2009, 2 days before her untimely passing from a rare and aggressive uterine … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , | 4 Comments

Page A29

Dear Editor I would like to direct you to Page A29 of your Sunday, March 9, 2014 edition. This page is the obituary page. This morning my wife shared with me that there was a nice obituary for a friend’s … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , | 2 Comments

comPASSION

It was 6 o’clock in the morning and I awoke to the all-too-familiar sound of his cough.  What would be revealed that day changed and shaped the aspirations of my whole family.  We took my congested 16-month-old brother to our … Continue reading

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Thank You, American Cancer Society

In the past, I have been a huge critic of the American Cancer Society and in September, I wrote a very inflamed blog  about all that I felt was  wrong with the American Cancer Society’s (ACS) involvement with childhood cancer.  … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , | 8 Comments

Survivor 2nd Edition

In our first edition of Survivor, we followed a typical group of 36 kids that were diagnosed on one day with childhood cancer. We used 36 kids because when the first article was written, in the United States, on average … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 7 Comments

Childhood Cancer by the Numbers

Numbers are wonderful. Numbers are dangerous. Having spent most of my career in management, within the retail sector, I have been conditioned to pay attention to numbers. Numbers can paint a picture.  Numbers can be your navigator. They can show … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , , , | 1 Comment

Answer in the Sky

So first off, what is up with this Polar Vortex thing?  As if the first stint wasn’t bad enough, it came back!!  I often think that I am better suited for Southern California than Pennsylvania, but there is one thing … Continue reading

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Palliative Care

About six years ago, the National Institutes of Health (NIH) announced it’s support for palliative care (pronounced pal-lee-uh-tiv) for adults and children suffering from serious illness. Today, 70% of Americans still do not know what it is. To be honest, for … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, young adults | Tagged , , , , , , , , , , , , , , | 7 Comments

Washington Lip Service

Editor’s Note: Since this article was written, the Gabriella Miller Kid’s First Act was passed by the U.S. Senate by unanimous consent vote on March 11, 2014. The President signed the bill into law on April 3, 2014. So far, … Continue reading

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Turn Foreign Aid into Cures for Cancer

In 2011, the United States spent $49.5 billion on foreign aid ( $17.8 billion in military assistance and  $31.7 billion economic assistance) .  Foreign aid has been a hot topic ever since our country slipped into recession in 2008.  On … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , | 1 Comment

iSad, iMad, iPad

Editor’s Note: Since this article was written, the Gabriella Miller Kid’s First Act was passed by the U.S. Senate by unanimous consent vote on March 11, 2014. The President signed the bill into law on April 4, 2014. The next … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , | 1 Comment

Smashing Walnuts: A Call to Arms

Editor’s Note: Since this article was written, the Gabriella Miller Kid’s First Act was pass by the U.S. Senate by unanimous consent vote on March 11, 2014. President Obama signed the bill into law on April 4, 2014.  It was … Continue reading

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Let’s Push Buttons

Would you believe?: 96% of all clothing sold is for adults. 96% of all breakfast cereals are consumed by adults. 96% of all bicycle helmets are worn by adults. 96% of all cancer research conducted by the National Cancer Institute … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , | 4 Comments

The Small Hero Amongst Us All

Editor’s Note: Jonathan Agin penned this piece two years ago for the Huffington Post. The only things that have changed since then are the additional faces of the small heroes each year. Each year, toward the middle of December, there … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , | 1 Comment

Races, Carnivals, and Birthdays

I have been doing a lot of two things lately: working (medical writing stuff) and running.  I think I have a touch of childhood cancer blogger-writer block.  I do plan to elaborate about some comments made in my prior post, … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , | 1 Comment

The Exploitation of Childhood Cancer

You all remember that little government shutdown a handful of weeks back don’t you? The emotional press conferences held by members of Congress on both sides of the aisle talking about how children with cancer would not receive treatments at … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , | 3 Comments