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
Monkey in My Chair
Category Archives: Uncategorized
Rachel’s Place – Surviving Medulloblastoma
UPDATE: Editor’s Note: on May 27, 2022, Rachel gave a speech at her Highlands High School graduation. If you are not aware of Rachel’s story, read along. If you know her story, scroll to the bottom and read her speach. … 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, DIPG, Pediatric Cancer, Rare Disease, Uncategorized, young adults
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
The Patient Choice Act – Providing Choice Instead of Death
I suppose I never truly realized how little choice we have individually with respect to selecting the drugs and treatments we as Americans pursue for own health. This never personally impacted me until the diagnosis of my two year old … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged HR: 2090, Jonathan Agin, Josh Hardy
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We need more than just research
A mother noticed that her six year-old son’s eyelids were not closing normally and when he walked, he was slightly off balance. A few days later, his parents’ worst nightmare became a reality; they were told that their son has … Continue reading
Epilogue -Childhood Cancer, My Road Map Series
Five weeks ago I set out to create what I think is part of the road map for the issues facing the fight against childhood cancer, and the areas I feel could provide gains on this road. The truth is, … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged childhood cancer, funding, Jonathan Agin
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Bringing Us All Together – Part 4
From my earliest entree into blogging in my daughter Alexis’ journal, I learned quickly that the childhood cancer community was a very disorganized and dis-unified group of entities and individuals who all had the same ultimate goal: a cure. I always … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Action, awareness National Cancer Institute, childhood cancer, Collaboration, community, Congress, Dr. Harold Varmus, international unity, Jonathan Agin, legislative agendas, NCI, research, unity
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Welcome!
Welcome to Four Square Clobbers Cancer! Four-Square Clobbers Cancer is a conversational blog that is dedicated to improving the outcomes of children, adolescents, and young adults who are being treated or have been treated for cancer. The goal is to inform, … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged acute lymphoblastic leukemia, adolescents, American Childhood Cancer Organization, asthma, AYA, blood cancer, BMT, bone marrow transplant, Brain Tumor, breast, cardiac arrest, chemotherapy, cognitive deficit disorder, Dana-Farber Cancer Institute, depression, die, disabling chronic healt problems, Ewings sarcoma, fatigue, genomic, gilomas, hearing loss, heart transplant, hospital, immune deficiency disorder, infertility, Kennedy Bougher, kidney transplant, Leukemia, life-theatening, lymphoma, medulloblastoma, memory issues, National Cancer Institute, NCI, neuroblastoma, osteosarcoma, PAC2, People Against Childhood Cancer, precision medicine, radiation, rhabdomyosarcoma, sarcoma, sequencing, solid tumor, survivor, toxic, tumor, vision problems, Wilms tumor, young adults
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The FDA and Childhood Cancer – Part 2
This is part 2 of the Jonathan Agin series, “Childhood Cancer – My Road Map” Being sent to an emergency room to have a CT scan performed on your two-year-old child is frightening. Being brought into a small cramped room … Continue reading
One Son and Two Cancers: A journey, a lesson, a mission
2/9/2020 Update: In September 2019 , Steven was recently diagnosed with two more cancers (now, the total is four) and is now fighting Renal Cell Carcinoma and a Soft Tissue Sarcoma. He is currently in treatment. This story will introduce … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Acute Myelogenous Leukemia, Adolescent, AML, Angie Giallourakis, AYA, Bone Marrow Registry, Cleveland State University, Greek Orthodox, GVHD, immune suppressants, Mohammed Ali, osteosarcoma, Planter's Peanuts, psychotropic, Sonny Liston, Stage 4, Stem Cell, transplant, Young Adult
10 Comments
Engaging the Pharmaceutical Industry – Part 1
This is beginning of a four part series by Jonathan Agin, an attorney and well known childhood cancer advocate (www.jonathanagin.com) in Washington, DC. He is married to Neely Agin and is the father of Alexis, Gabriel Agin and Trevor Agin. Alexis was … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged childhood specific, compounds, Congress, Creating Hope Act, DIPG, DIPG Collaborative, FDA, Food and Drug Administration, harold V arms, Jonathan Agin, lobby, M.D., Nancy Goodman, National Cancer Institute, pediatric cancer drugs, pharmaceutical companies, profit model
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The Funding Conundrum for Pediatric Cancer
My grandson, at 15 months of age, was diagnosed with high risk neuroblastoma. He is a survivor. Although, he endured an incredible six year long journey, this story is not about him, his family, the changes in their lives, or … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Best Pediatric Exclusivity Provision, BPCA, Carolyn Pryce Walker, CDC, childhood cancer, Congress, Deborah Pryce, Dr. Jessica Boklan, FDA, Jack Reed, Joe Baber, Michael McCaul, NCI, neuroblastoma, Norm Coleman
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Give me a big bottle of that stuff!
About this time 12 years ago, I was working on forming a reunion of people who had worked at Roses Stores, a southeastern chain of discount stores. Out of the blue, I walked back into Marion, VA, a wonderful small … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged childhood cancer, Jaws of Life, Joe Baber, Marion, Roses, Virginia
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Effective Public Speaking 101
Want to spread the word about how rare childhood cancer is? Even if you are afraid to talk in front of a group of people, you can do this without giving a big speech! This is how to give an … Continue reading
We are Soldiers of Cancer
Behind every soldier there is a family who makes sacrifices so their spouse, father or mother can serve our great country. Ryan’s family is one such family. Even in the shadow of pain and adversity, they are giving back to … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Acute Myeloid Leukemia, AML, bone marrow transplant, chemo, Children's National, family, four square clobbers cancer, Mikelle G. Raffel, military families, pediatric cancer, PICU, Ryan's Battle Buddies, soldiers, Walter Reed, wounded warrior
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Four-Square Clobbers Cancer 