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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
Author Archives: Team Captain
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
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
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
1 Comment
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
9 Comments
Survivor 2nd Edition
In our first edition of Survivor, we followed a typical group of 36 kids that were diagnosed on one day with childhood cancer. We used 36 kids because when the first article was written, in the United States, on average … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease
Tagged Acute Lymphocytic Leukemia, Acute Myeloid Leukemia, ALL, American Cancer Society, AML, Astrocytoma, Brain Tumor, cardiac disease, Central Nervous Syatem, chemotherapy, CNS, Cranial radiation therapy, cyclophosphamide, DIPG, Ependymoma, Ewing Sarcoma, Hodgkin Lymphoma, Joe Baber, Medulloblastomia, Neoplasms, neuroblastoma, Non Hodgkins Lymphoma, osteosarcoma, Ovarian Germ Cell Tumors, radiation, Retinoblastoma, rhabdomyosarcoma, Testicular Germ Cell Tumors, Wilms tumor
7 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
2 Comments
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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Palliative Care
About six years ago, the National Institutes of Health (NIH) announced it’s support for palliative care (pronounced pal-lee-uh-tiv) for adults and children suffering from serious illness. Today, 70% of Americans still do not know what it is. To be honest, for … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, young adults
Tagged American Cancer Society, Better Clinical Outcomes, Boston Children's Hospital, death, Dr. Joanne Wolfe, end of life, Get Palliatve Care .Org, hospice, Joe Baber, National Cancer Institute, National Institutes of Health, NCI, neuroblastoma, NIH, The New England Journal of Medicine
7 Comments
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
1 Comment
iSad, iMad, iPad
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 4, 2014. The next … Continue reading
Smashing Walnuts: A Call to Arms
Editor’s Note: Since this article was written, the Gabriella Miller Kid’s First Act was pass by the U.S. Senate by unanimous consent vote on March 11, 2014. President Obama signed the bill into law on April 4, 2014. It was … Continue reading
Let’s Push Buttons
Would you believe?: 96% of all clothing sold is for adults. 96% of all breakfast cereals are consumed by adults. 96% of all bicycle helmets are worn by adults. 96% of all cancer research conducted by the National Cancer Institute … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged American Cancer Society, FDA, gold ribbon, Joe Baber, National Cancer Institute, NCI
4 Comments
The Small Hero Amongst Us All
Editor’s Note: Jonathan Agin penned this piece two years ago for the Huffington Post. The only things that have changed since then are the additional faces of the small heroes each year. Each year, toward the middle of December, there … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Amy Winehouse, hero, Huffington Post, Jonathan Agin
1 Comment
The Exploitation of Childhood Cancer
You all remember that little government shutdown a handful of weeks back don’t you? The emotional press conferences held by members of Congress on both sides of the aisle talking about how children with cancer would not receive treatments at … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Congress, Jonathan Agin, NIH
3 Comments
it was one of those days
Author: Annette Leslie Related Article: Never Ever Capitalize cancer
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease
Tagged #1 disease killer, Annette Leslie, Brain cancer, Brain Tumor, Carson Leslie
2 Comments
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