Category Archives: Rare Disease

Giving It All

Editor’s Note: One day, their 9 year old daughter is perfectly normal and healthy. The very next day they heard these words, “Your daughter has cancer and it’s terminal.” It happened just that quickly. About one year later, Mark and Ellyn … Continue reading

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September – #ChildhoodCancerChallenge

This will be PAC2’s 7th September, aka National Childhood Cancer Awareness Month. Starting virtually unaware, except for the worst fact about childhood cancer, over the years we’ve learned that the research funding for all cancers is not the same, and … Continue reading

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Where are you now, Rock Hudson?

Are you wondering who is Rock Hudson? Do you think I have lost my mind? Well ….. Since my son Steven’s diagnoses with Stage Four Osteosarcoma over 7 years ago, followed by a diagnosis of Secondary Acute Myelogenous Leukemia, which required … Continue reading

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Compassionate Use

You may remember the #SaveJosh news articles in the spring of 2014 where little Josh Hardy’s family mounted, as a last ditch effort, a social media campaign to get him into a clinical trial that St. Jude’s doctors said was … Continue reading

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The Fault in Our Systems

by Nathan Traller, Nathalie’s father Editor’s Note: Nathan’s daughter was diagnosed with Aveolar Soft Part Sarcoma (ASPS) two years ago and he has been fighting to get her into a possible life saving clinical trial for PD1 and PDL1. Time … Continue reading

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Want to Make a Difference?

Maybe, I am a little old-fashioned with my “mug shot” and in a few other ways, like this one: It is so amazing to me that in today’s “connected” world, there are so many people who you will work closely … Continue reading

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Seeing is Believing:

I am planning to write a series of posts that pertain to clinical issues, like palliative care services for improving outcomes in childhood cancer, but I wanted to take a step back and give some background first, especially about my … Continue reading

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Five Reasons Why You Should Join the Fight Against Cancer

Originally posted on This Grey Matters Blog:
When we first announced the name of our foundation, people thought we were a little crazy. I understand that the name is unconventional, but so is our goal. It is different. Some might…

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30% Funding Cuts

Just weeks before she died of a brain tumor, ten-year-old Gabriella Miller put it best. When asked what message she would give to the nation’s political leaders about the need for children’s cancer research, she responded in a YouTube video … Continue reading

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Ellie’s Hats

Last year, school had started once again as usual, but for the first time in the PE class that I was teaching, I had a cute little girl who was bald headed. Ellie started kindergarten as a brave, beautiful girl without … Continue reading

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A Home Away From Home

Meet Suzanne Corey Gwynn. She’s going to build a house in Seattle, Washington.  It’s not going to be a small little house, but a big house.  Suzanne is not an architect with a blueprint or even a carpenter with a hammer. … Continue reading

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Your child has cancer, what next?

You have just been told, “Your child has cancer and they are going to need a lot of care.” No doubt about it, they will, but so are you. In order to properly take care of your child, as the parent … Continue reading

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Cameron Week

Editor’s Note: It is with deep respect and profound appreciation for mothers everywhere that Four Square Clobbers Cancer has  chosen Mother’s Day to present Blyth Lord’s touching and tender article from her Courageous Parents Network. Today is Hump Day in … Continue reading

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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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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

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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

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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

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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

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