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Recent Posts
- Thankful and Fearful
- Every 2 minutes?
- Jace Ward’s Friends Can’t Wait
- Think about others
- Collaboration to Cure Medulloblastoma
- Two Little Words
- Turn Away… You may not want to hear this
- Cord Blood, a life line
- CAVATICA Genomics Data Sharing
- The Cancer Moonshot: Are Our Kids Stepping on the Moon Too?
- Broken Trust
- Fly Me to the Moon
- I Gladly Spoke Up for Kids With Cancer Today
- A 10 year old, Speaking from Experience
- Bereavement Meeting
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The Truth 365 Video
If you have not had a child suffer from cancer, you must watch this video to get the real picture of what it is like. It takes only 8 minutes, but it will be the best 8 minutes you will spend in order to understand what is happening to our kids and what we can do about it.Click photo below to see The Truth365 Video
Category Archives: Uncategorized
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
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
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
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
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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
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged GraceforChase, Leukemia, Rob Whan
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
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged cellular biology, Grace Furnari, internship, medulloblastoma, molecular biology, neuroblastoma, pediatric oncologist, Rady Children's Hospital, Sanford Burnham Medical Research Institute, sibling, tumor
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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 ACS, American Cancer Society, FDA, Joe Baber, NCI, NIH
8 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 ACS, acute lymphoblastic leukemia, Acute Myeloid Leukemia, American Cancer Society, Astrocytoma, bone tumor, Ependymoma, hepatic tumor, Hodgkin, Joe Baber, lymphoma, medulloblastoma, neuroblastoma, Non-Hodgkin, observed survival, osteosarcoma, Ovarian germ cell, reticuloendothelial neoplasms, Retinoblastoma, rhabdomyosarcoma, Testicular germ cell, Wilms tumor
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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
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Laurie Orloski, Notre Dame Football
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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
Turn Foreign Aid into Cures for Cancer
In 2020, the United States spent $51.05 billion on foreign aid ($11.75 billion in military assistance and $39.3 billion economic assistance) Foreign aid has been a hot topic ever since our country slipped into recession in 2008. On any given … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged DIPG, foreign aid, HIV/AIDS, Joe Baber, medulloblastoma, National Cancer Institute, NCI, neuroblastoma
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