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- Every 2 minutes?
- Jace Ward’s Friends Can’t Wait
- New Kids First Research Act 2.0 HR 623 introduced
- Think about others
- Color A Car
- 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
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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: Pediatric Cancer
Mesotheli-WHAT?
Mesothelioma is normally not a cancer one hears about in the childhood cancer community. That may be because, in most cases, because of the long latency period, it is not normally detected until the child becomes an adult. Today, children in older schools may … Continue reading
Shocker of a Vacation
Most people spend their summers doing things like taking vacation. I, on the other hand, spent this summer getting involved in childhood cancer awareness and trying to figure out ways to spearhead a new fundraising effort. As I discussed in … Continue reading
Friends Don’t Let Friends Relay
Editor’s note: Little has changed since Jonathan Agin penned this article for the Huffington Post in February, 2013. There are many amazing charitable organizations focused upon cancer research and support. Most of us can rattle off the big ones … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged ACS, American Cancer Society, John R. Seffrin, Jonathan Agin
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Never Ever Capitalize “cancer”
Every Year in September during the Childhood Cancer Summit and CureFest I remember five years ago, meeting Carson’s mother and Max’s grandfather. Richard Plotkin, a retired lawyer, read a book written by Annette Leslie’s, then 17 year-old son, Carson. He was … Continue reading
Gold vs Pink
“Knowing everything that I know about cancer, I would, in a heartbeat, take any kind of adult cancer—no matter how nasty and aggressive the disease and treatment—over any cancer diagnosis and any chemotherapy for either of my daughters, future grandchildren” … Continue reading
Dear American Cancer Society
Dear American Cancer Society, Good evening. I have always been appreciative of the work and research that the American Cancer Society funds. While I have always researched the organizations I support, it was not until recently that I decided to … Continue reading
The Climb
I have never had to personally deal with childhood cancer but have dealt with losing my parents at pivotal points in my life. My father passed away in 1996, when I was 21, having just completed my 4th year of … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Laurie Orloski
1 Comment
Finding Your Footprints
Have you ever tried to walk behind someone in the deep snow and step right in their footprints? As you take each step, you may or may not hit each plant right in the already trodden snow. And then, coming … Continue reading
What’s MMMT got to do with it?
Editor’s Note: A very special welcome to Laurie Orloski who will be a regular blogger on Four Square Clobbers Cancer. Laurie is an experienced writer who will also be able to provide us with her expertise in the field of … Continue reading
Advocacy and Direction
Lately, I have wondered whether or not the childhood cancer community is on the right track overall. By this, I mean, is the direction of the community in terms of raising money, awareness and the manner of funding research the … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged advocate, ALL, DIPG, HR 2019, Jonathan Agin, Kids First Research Act, Lobbyist, National Cancer Institute
2 Comments
The Rest of the Story…
From Mikelle to Four Square Team Captain: “I wrote again. I realized that I needed to tell “The Rest of the Story.” It’s about the truth of my grief, what I’ve been through. If you choose to publish it, my … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged bone marrow aspirations, Broviac, chemo, cranial fluid, cranial shunt, dialysis, IV pump, meningitis, Mikelle G. Raffel, NG tube, oscillator, pic lines, pneumothorax, port, radiation, spinal drain, Wal-Mart
10 Comments
Together
Our community is built of many similar, yet different and diverse organizations. Collectively, we are looking for a cure for childhood cancer. No one has actually been able to say with absolute certainty exactly how many organizations actually exist in … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged CAC2, Coalition for Childhood Cancer, Joe Baber
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Lessons of losing a child to cancer
As the weeks dwindle down to mark one year of losing my son, Ryan, to cancer, I have been looking back and thinking hard about what I’ve been taught, or should I say, what was thrown in my lap to … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged antibiotics, bald heads, chemo, community, doctors, fever, hospital, Mikelle G. Raffel, nurses, patch changes, protocol
4 Comments
Mr. President, Did We Miss Your Call?
President Obama, perhaps you recall that back in January 2013 I reached out to you to talk about three specific small asks for the childhood cancer community. I know that you have had a lot on your plate recently. For obvious … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Africa, gold, Jonathan Agin, NCI, President Obama, Whitehouse
1 Comment
Lobbyist
Lobbyist… There, I said it! For me, it’s very difficult saying the “L” word. It never has felt good rolling around in my mouth, banging up against my molars and sliding out between my tight lips. I have always hated that … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Alex's Lemonade Stand, Carolyn Price Walker Conquer Childhood Cancer Act of 2008, CHOP, Congress, Defense Department, DOD, Dr. Phil, Gabriella Miller Kids First Research Act, Joe Baber, Jonathan Agin, Lobbyist, Lone Ranger, National Association of Children's Hospitals, National Breast Cancer Coaliton, Nationwide Children's Hospital, Ronan Thompson, St. Baldricks, Susan G Komen for the Cure
6 Comments
We Must Stop Turning Our Backs on Children’s Cancer
When doctors told my wife and I that our soccer-playing, Harry Potter-reading 7-year-old daughter Olivia had cancer, we were struck with panic, dread and challenges we never could have imagined. And once we overcame the shock, we were stunned to … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Capitol Hill, Childhood Action Day, chronic side effects, Conquer Childhood Cancer Act, d d, federal budget, Food and Drug Administration, heart failure, life-theatening illnesses, National Cancer Institute, pharmaceutical industry, prostate cancer, secondary cancers, Stephen Crowley, therapies
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End of Life Equality
Until we needed to enroll my daughter Alexis in a hospice program, I really had no idea how poorly we as a country manage the needs of children who face terminal diseases. Admittedly, having a conversation about children who face … Continue reading
Rachel’s Place – Surviving Medulloblastoma
Today, “Rachel’s Place” is with her family somewhere between Hope and Peace. She actually lives near Bel Air, Maryland, but her real place of comfort and security is anywhere she and her family are together. Each year during Brain Cancer … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Brain Tumor, Cerebellum, Dr. Ben Carson, facial sensory loss, headache, infratentorial primitive neuroectodermal, Joe Baber, Johns Hopkins, malignant, medulloblastoma, PNET, positional dizziness, Rachel Riskin, survivor, tumor
2 Comments
National Cancer Survivor’s Day
National Cancer Survivor’s Day is a day of celebratory status for many children and their families across the world. This day should be celebrated to the extreme! Parties all over should be held. Families should hug and rejoice in their … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged acute lymphoblastic leukemia, AML, Mikelle G. Raffel, survivor
11 Comments
Adrift in the Waters of Childhood Cancer-Arguing to Change the Standard of Care
April 11, 2008 will always remain etched in my memory for one simple reason. It is the day that we heard the words “your daughter has cancer.” They are four of the worst words that a parent could ever imagine … Continue reading