51 Childhood Cancer organizations strong and growing!
Missing Kylie by Mark Myers
" Never capitalize the word, "cancer." It does not deserve it. " Carson Leslie, 17
Better Angels by Sadie Keller and Michael McCaul
Better Angels by Sadie Keller and Rep. Michael McCaul
How my daughter embraced life with cancer as an unexpected adventure. Catie was just one of those unique people who had the ability to touch people and make them live a little more splendidly. This is Catie's story - and how she changed the world one brilliant moment at a time.
Click photo below to see The Truth365 Video
The book, "Grace" by Melinda Marchiano
Provide Chemo Ducks for Kids
Great for young school age kids
Category Archives: Rare Disease
A Pair of Shoes
One day in September, after my wife Ellie and I visited a Senator in the Hart building, we met up with Ellyn Miller (Gabriella Miller’s mother) on a beautiful blue-sky morning in front of the Cannon House Building in Washington, … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease
Tagged Ellyn Miller, Gabriella Miller, Joe Baber, Loss of a child
1 Comment
Hope
From his perspective, my then 10 year-old grandson Conor has always had a somewhat normal childhood. He lives in California, is good in school, a cool blond-headed surfer dude and a wild and radical skateboarder. In fact, I am amazed … Continue reading
So, It Begins:
I have been actively engaged in the advocacy fight for more federal funding for childhood cancer since my first trip to Washington DC in June of 2008. This began less than 3 months after I lost my only son, Caleb, … Continue reading
September’s Child
In my household, the month of September and the passing of Labor Day used to mean tucking away my white jeans, getting the kids settled at school and ordering Halloween costumes. After my son’s cancer diagnosis in 2013, September will … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease
Tagged Asha Virani, Childhood Cancer Awareness Month
1 Comment
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
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
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
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
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
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…
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Amanda Haddock
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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
Posted in Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged acute lymphoblastic leukemia, hats
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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
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
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged anticipatory grief, Blyth Lord, Courageous Parents Network, degenerative disease, dragon parents, Emily Rapp, emotional needs, end of life care, Grief, grief counseling, Grief counselor, hospital chaplains, life-limiting illness, ministers, National Tay-Sachs and Allied Disease, palliative care, parents, pediatric palliative care, primary care doctor, psychological needs, psychologists, quality of life, rabbis, resources, social workers, The Still Point of the Turning World, video library, Your child has cancer
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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
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
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease
Tagged breast cancer, HIV Aids, Lynne Stiefler, nurse, oncology, Sarah Chana Radcliffe, stuffed animals, Teddy Bear
5 Comments
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
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 Caleb's Crusade, Leukemia, Rob Whan
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 American Cancer Society, Camp Can Do, Hershey, Laurie Orloski, LeHigh, Philadelphia
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 GraceforChase, Leukemia, Rob Whan
2 Comments
Four-Square Clobbers Cancer 