Category Archives: Cancer

Father, Daughter, Date Night

Posted on February 20, 2015 by Team Captain

The other day I decided to take my 7 year old daughter, Bella, out on a date. I found a traveling circus that was in town and recalled how much I enjoyed the circus as a kid and thought it … Continue reading →

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged Bella, Caleb, Leukemia, Rob Whan | Leave a comment

Immunotherapy

Posted on December 21, 2014 by Team Captain

I am not sure how many people outside of the cancer research community know this, but it is well recognized that the human body is equipped to fight off cancer on its own. The same immune system that we have … Continue reading →

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged acute lymphoblastic leukemia, ALL CLL, American Society of Hematology, autoimmune disease, biotech, Bristol-Meyers Squibb, CAR, CAR T, CART, checkpoint inhibitor, chemotherapy, Children's Hospital of Philadelphia, chimeric antigen receptor, cytokines, DNA, Dr. Stephen Grupp, EGFG, FDA, Gardasil, HIV Aids, immunosupressive, immunotherapy, interferon, interleukins, Keytruda, Laurie Orloski, Leukemia, Melanoma, Merck, metastatic disease, molecularly targeted agents, New England Journal of Medicine, nivolumab, Novartis Pharmaceuticals, Opdivo with r symbol, PD-1, pembrolizumab, personalized medicine, pharma, pharmaceutical, small-molecule inhibitors, spontaneous remission, T-cells, toxicity, tyrosine kinase inhibitors (TKIs), University of Pennsylvania, vaccines | 1 Comment

Five year cure, …really?

Posted on November 11, 2014 by Team Captain

Five-year relative survival rates describe the percentage of patients with cancer that are alive five years after their disease is diagnosed. Use of 5-year survival statistics is more useful in aggressive cancers that have a shorter life expectancy following diagnosis (such … Continue reading →

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease | Tagged American Cancer Society, autoimmune, biopsy, chemo, Cj Colton, clear cell sarcoma, CT, Ipilimumab, Joe Baber, kidney, MRI, National Cancer Institute, radiation, survival statistics, T-cells | 19 Comments

A Pair of Shoes

Posted on September 28, 2014 by Team Captain

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

Posted on September 26, 2014 by Team Captain

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 →

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease | Tagged American Cancer Society, Beth Anne Baber, Cami Boddy, Conor Boddy, CureFest, Ellie Baber, Golden Toast, Grace Furnari, Joe Baber, Lafayette Park, Lights of Hope, McCaul, neuroblastoma, Van Hollen, White House | 7 Comments

So, It Begins:

Posted on September 24, 2014 by Team Captain

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 →

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged Capitol Hill, Congressional Childhood Cancer Caucus, CureFest, DC, Dr. Francis Collins, Dr. Harold Varmus, Lafayette Square, NIH, Office of Public Engagement, Rob Whan, Washington, White House | 5 Comments

September’s Child

Posted on September 14, 2014 by Team Captain

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

Posted on September 3, 2014 by Team Captain

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 →

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease | Tagged autopsy, Brain Tumor, DIPG, Ellyn Miller, Gabriella Miller, Smashing Walnuts Foundation, tissue donation, tumor donation | Leave a comment

Where are you now, Rock Hudson?

Posted on August 24, 2014 by Team Captain

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 →

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease | Tagged Acute Myelogenous Leukemia, Angie Giallourakis, AYA, Brain cancer, CAC2, Carolyn Pryce Walker, chemothrapy | 4 Comments

Compassionate Use

Posted on July 30, 2014 by Team Captain

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 →

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged Brain cancer, Compassionate use, Ellyn Miller, FDA, Grabriella Miller, Joe Baber, Nathalie Traller, NCI, NIH, pediatric diseases, Pharna, Smashing Walnuts | 4 Comments

The Fault in Our Systems

Posted on July 29, 2014 by Team Captain

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 →

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged 2.0 clinical Trials, ASCO, ASPS, Aveolar Soft Part Sarcoma, Bristol-Myers Squibb, Clinical Trials, Compassionate use, FDA, Genentech Inc., genomic profile, Lung MAP trial, Merck, metastatic cancer, Nathan Traller, National Cancer Institute, National Institutes of Health, NCI, NIH, PD1, PDL1, pediatric trials, rare disease, tumor bank | 3 Comments

Want to Make a Difference?

Posted on July 23, 2014 by Team Captain

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 →

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged #SaveJosh, Bill Burns, CAC2, Coalition Against Childhood Cancer, Laurie Orloski, Max Cure Foundation, National Cancer Institute, The Nicholas Conor Institute, TNCI | Leave a comment

Seeing is Believing:

Posted on July 3, 2014 by Team Captain

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 →

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged Clinical Pharmacy, Investigational Drug Service, Laurie Orloski, PharmD, St. Jude | Leave a comment

Five Reasons Why You Should Join the Fight Against Cancer

Posted on June 30, 2014 by Team Captain

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 | Leave a comment

A Home Away From Home

Posted on May 21, 2014 by Team Captain

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 →

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized, young adults | Tagged Crescent Cove, George Mark Children’s House, hospice, hospice care facility, Joe Baber, palliative care, rare disease, Ryan House, Seattle, Suzanne Gwynn | 12 Comments

Your child has cancer, what next?

Posted on May 18, 2014 by Team Captain

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 | 1 Comment

Cameron Week

Posted on May 11, 2014 by Team Captain

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 →

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged Blyth Lord, Cameron Week, Courageous Parents Network | Leave a comment

Bear with Me

Posted on April 22, 2014 by Team Captain

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

Posted on April 11, 2014 by Team Captain

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 →

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged Dr. Francis Collins, progeria, Rare Disease Legislative Advocates, Rob Whan, Sam Berns | 1 Comment

Dear Caleb

Posted on March 28, 2014 by Team Captain

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 →