Welcome to Four Square Clobbers Cancer!

foursquarecourt2.jpgFour-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, communicate and collaborate with those in the cancer community.


Four-Square is a very popular game played by children, adolescents and even young adults.   Following the rules and reacting to the constant changing path of a big orange ball, the object is to stay in the game as long as possible.  It’s kind of like the game of life,  where the object is to react favorably to the fast, changing  things that come your way,  stay healthy, live as long as possible and have fun.

Four-Square by definition is also used as an adjective that means firm and resolute, especially in support of someone or something.  “We stand four-square in our conviction to improve the therapies and outcomes of children, adolescents, and young adults with cancer.”bounceball

Clobber is actually a term used in the game of Four-Square and,  coincidently, it means the same thing in the game of life.  It’s what everyone wants to do to cancer!

Complete information about Four Square Clobbers Cancer and it’s bloggers can be found by clicking the “About” tab on the menu bar at the top of the page.



Recently heard the words,”Your child has cancer?” Please read this:

BestCare_edited-1If you found this site because you have recently heard, “Your child has cancer,” this article is a must read if you are trying to decide, “What next?”  The advice given is invaluable and will help you on your journey down this uncertain road.

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 1 Comment

Thankful and Fearful


Because of my grandson, Conor, a neuroblastoma survivor, I have met so many people in our childhood cancer community who want to improve the outcomes of children fighting cancer. We either have children in treatment for cancer or have children who are survivors or have died because of it. We’re all thankful when there are lifesaving therapies and at the very same time, we are fearful of relapse, side effects of the drugs, chemotherapy, radiation, surgery and even death. These contrary and parallel emotions seem to be linked in partnership throughout the childhood cancer experience.

I have been a childhood cancer advocate for over 12 years and involved in promoting awareness and education of childhood cancer to the public and also advocating for improving practices, drug development, research funding and legislation. It’s been years, and while I would like more research and have it move faster, I remain very thankful for the progress I have witnessed. I remain fearful we will not always be able to adapt to the ever-changing political winds and budget priorities. Let me explain…

I am so very thankful for meeting Ellyn Miller and the time and effort that was invested 9 years ago into passing the Gabriella Miller Kids First Pediatric Research Act. The reason we called it “Kids First,” is because kids have always been last. Because of the small population of childhood cancer patients compared to adult cancer patients, kids have been last in funding, last in drug development, last in data collection and last in precision medicine. Our childhood cancer community has benefited greatly since then. With $126 million diverted from a federal fund that will no longer pay for Presidential Political Conventions, the Kids First Act was born and designated as a 10-year program administered by the National Institutes of Health (NIH) Common Fund.

I am thankful that I was initially wrong about it at first. I was apprehensive about NIH administering a childhood cancer program instead of the National Cancer Institute (NCI). As it turned out, it actually worked very well because it allowed building a unique resource with genomes and clinical information across rare pediatric conditions including childhood cancer and birth defects, which is more powerful for discoveries. In addition to publishing 32 scientific publications, and funding more than 70 whole genome sequencing projects to research childhood cancer & birth defects, the Kids First program has generated one of the largest inventories of molecular and clinical data sets for pediatric research. As of today approximately 30,000 genetic sequences from affected children and families are publicly available to researchers across the country and around the world.

I am thankful that NIH developed the Kids First Data Resource Center (DRC). With over 3200 users and over 500 data access requests approved, it is highly valued by the pediatric research community and features a public-facing, free access, web-based, portal. The portal allows dedicated researchers to search, access, aggregate, analyze, and share annotated genomic sequences, variant, and phenotypic datasets. This resource saves its users valuable time. Many of them have measured their time savings not only in days or months, but also in years! Kids First DRC developed and implemented a new connectivity that allows for real-time data to be available on its site. It facilitates analysis across diverse pediatric conditions to uncover shared developmental pathways. The portal helped researchers to accelerate discoveries beyond childhood cancer by identifying potential targeted therapies for persons with Down Syndrome. Under the program, more than thirty pediatric research projects have generated vital genomic data that is shared with the entire research community. The overall goal is to help researchers understand the underlying mechanisms of these conditions leading to more refined diagnostic capabilities and ultimately more targeted therapies or interventions through molecular diagnosis.

I am thankful that because of the successes of the Kids First Program and its Data Resource Center, the House of Representatives in July of this year passed the Gabriella Miller Kids First Pediatric Research Act 2.0 (HR 623) and amended it to a five-year reauthorization of $25 million per year. With a total of $125 million, the Kids First program will, over the five-year extension period, be able to expand a truly comprehensive SHARED-DATA resource for scientists researching the majority of pediatric cancers and rare diseases. It will continue to support development of computational tools to analyze very large, complex genomic, and clinical data sets and could offer expanded molecular diagnosis.

I am fearful that the program will end on the 10-year mark as scheduled. If we end the program because some politicians feel we need to cut back on government spending, we will lose everything, all the good things for which our community is thankful. I am fearful that if there is a lag and we have no funding for even a year or two, it will set the Kids First Data Resource Center back a decade in knowledge because of how fast data is generated in today’s genomic research environment. When data that has been collected is not refreshed and sits dormant, it becomes increasingly useless and less valuable to the user. I am fearful that over time, it will appear that the $126 million already invested in Kids First was wasted. Then we will have a hell of a time trying to revive a program as good as this one. I remember $150 million Caroline Pryce Walker Conquer Childhood Cancer Act of 2008, which was passed and signed by the President, but never happened.


Kids First 2.0 DID NOT PASS in the Senate in December 2022. We will now have to get a simular bill passed in both the (118th) House and the Senate before October 1, 2023  or we we have to shut down the program.  Stay tuned, once the dust settles from the changes that will take place in the Congress in January, we will mount another, more intensive, effort to gain approval and continue this most important program. 

Author: Joe Baber

Posted in Cancer, Childhood Cancer, DIPG, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , , , | Leave a comment

Every 2 minutes?

Every two minutes_edited-1

In our world, when something is considered to be rare, it usually denotes that it has value. Everyone would agree that the Hope Diamond and Leonardo De Vinci’s Mona Lisa, painted in the 16th century, is rare and very valuable. Examples of rare and more contemporary items range from a penny such as a 1944 Steel Wheat Penny, which is worth $110,334, or a 1963 Ferrari 250 GTO automobile that is valued at a whopping $70 million! When labeling childhood cancer as “rare,” contrary to the above, it actually devalues it and all the children it affects.

Today, most large medical institutions and organizations, even the National Cancer Institute use the word “rare” in describing childhood cancers. Yes, compared to such adult cancers as breast, lung, colon, and prostate cancer, kids’ cancers such as neuroblastoma, Ewing’s sarcoma, AT/RT, or DIPG are not seen nearly as often. Referring to the childhood cancer category, which is smaller, as “rare,” is not appropriate. Because it does not happen to the majority of the population, it’s just as inappropriate to label adult cancer “rare.”

Childhood cancer can’t be “rare” when it strikes more than 400,000 every year. How can it be considered “rare’ when, in the amount of time it takes to read this short post, somewhere a child has been diagnosed with cancer?

If we insist on labeling childhood cancer as “rare,” then we must acknowledge and label the funding we spend to find a cure even more “rare.”

Author: Joe Baber


Posted in Cancer, Childhood Cancer, DIPG, Pediatric Cancer, Uncategorized, young adults | Tagged , , , , , | Leave a comment

Jace Ward’s Friends Can’t Wait


We will remember our friend Jace as a wonderful, positive, fun loving, selfless guy who enjoyed life, loved his friends, his family and his God. To some, he may be remembered as an outstanding national advocate for DIPG research, or a pioneer in medical research for a cancer that kills more than 300 U.S. children every year. Jace, in his humble down to earth manner, would often  jokingly refer to himself as the DIPG crash test dummy.


Ask just about any of Jace Ward’s friends and they can tell you what Diffuse Intrinsic Pontine Glioma (DIPG) is, and just about everyone of them will tell you how they hate it with a passion.  Jace was diagnosed with it when he was 20 years old and a student at Kansas State.  About 350 U.S. children, mostly under 10 years of age, will get DIPG each year.  It’s a tumor in the brain stem (pons) and it is considered terminal on diagnosis. It’s not at all a newly discovered type of cancer. Nearly 60 years ago, Neal Armstrong’s daughter Muffie died from DIPG.  The experience devastated the family and left  them feeling absolutely helpless.  We put Neal Armstrong on the moon a few years later, and have JaceNIHwatched everything in our daily life – our cars, entertainment and homes – advance with new science and technology over the decades.  However, for DIPG, nothing has changed in the standard treatment.  DIPG is exactly the same.  Each child receives an outdated 6-week course of radiation and a hug for good luck with a 6-9 month life expectancy.  From what the doctor told him when diagnosed, Jace had 9 months to live. He went home and calculated it; he was “scheduled” to die on the day before he was to celebrate his 21st birthday. He was not about to let that happen! He and his mother began praying and got busy looking for the best treatments and if not one to cure it, then at least something that would prolong his life. They eventually found a revolutionary trial at Stanford in California.

“Share research now. Cures not credit. … Because DIPG won’t wait. It won’t wait to take my mobility, my voice, my sight or my life” … “While we sit around figuring out risks of sharing data, 300 kids are dying”.  Jace Ward, Address at NIH

The trial that is being conducted at Stanford today is the most promising therapy we have seen yet.  In fact, it’s not only promising, it’s exciting! The medical and research teams, using an Ommaya Catheter, are infusing CAR T-cells (Chimeric Antigen Receptor T Cells) directly into the brain stem tumor.  The T-cells target the GD protein that is found in the DIPG tumors and kill the tumor cells. Jace, diagnosed with DIPG two years ago, was the first to use the catheter and has had five infusions. With each infusion, he had improved functions.  Before one infusion, he entered the hospital in a wheelchair, afterwards, within days, he walked out of the hospital. Overall, his tumor volume decreased quite a bit, possibly as much as 60 to 70 percent with the 5 infusions he received.  Each infusion varies in effects, because as the T-cells kill tumor cells, the process causes varying degrees of inflammation that has to be controlled. It has been a learning process with each infusion. If the inflammatory response could be better controlled, perhaps more CAR T-cells could be delivered to wipe out the tumor in a few doses. Due to the inflammation with the infusion process, it is best to use 137210509_735332104031992_7596328741128269446_nseveral infusions over periods of time.  Because of his age, and his acute knowledge of the disease, unlike the very young children that typically have this tumor,  Jace was able to communicate exactly what his body was going through each time he was infused.  Jace knew what his situation was and was acutely aware that the outcome for him would not necessarily work with these early trials. He gladly used his body and treatment experiences to gain as much detailed information as possible. He knew his medical data coupled with his ability to provide pinpoint information was invaluable to the medical and research teams in helping them refine the process for others who would follow him. Jace and many others familiar with DIPG believe delivering CAR T-cells directly to the tumor is the most promising method to find a possible cure for this terrible disease that is killing our children. 

These early trials are extremely expensive and therefore can only accommodate a very limited number of children. Presently there are only 10 enrolled. In the future, as knowledge of the effects of the therapy is gained, people are trained, additional funding is obtained, it is planned for expansion to other institutions and many more children can be treated.

NursePractitionerTo expand the DIPG Car T Cell trial, Stanford needs a dedicated research Fellow, a Cell Pharmacist, and a research Nurse Practitioner. The Fellow and Cell Pharmacist have been funded and began work this month. The last step now is getting the Nurse Practitioner (NP) funded for two years. The Nurse Practitioner is responsible for gathering the correlative data from patients including blood draws, recording  symptoms, managing  medication for pain and inflammation. Each patient is different and all information is so important to gather. We need to be able to have more kids enrolled in trials as soon as possible to help the children live longer, and perhaps find a cure. We also need to learn from these children. Storm the Heavens, and Arms Wide Open, childhood cancer foundations are leading a group of foundations to fund the NP position. We need to fund the last $50,000 of the NP budget immediately.

DIPG will not wait and neither can we. Please consider helping obtain a Nurse Practitioner now, so this program can be expanded to others as soon as possible, not two years from now. Jace knew being one of the first in this trial meant it may not be the complete answer for him. Jace died on July 3, 2021 from a brain bleed. Since he was older than most children that get DIPG it may or may not have been related to his treatment. The risk of a tumoral hemorrhage increases the further a patient is from diagnosis.  In Jace’s case the brain bleed occurred at the spot with the most past microbleeds in the tumor. These were present prior to Jace starting Car T Cell, a reason Jace avoided avastin and even ibuprofen throughout his journey.  Since the hemorrhage did not occur at the height of inflammation following Car T Cell, Jace’s passing does not appear to be a result of the treatment. However, the Stanford Team will investigate and continue to learn from Jace’s tumor donation, including whether there is anything that could prevent an intratumoral hemorrhage in other patients. The CAR T-cell clinical trial gave Jace an extra 6-8 great months with his family.  He lived 25 months from diagnosis.

Jace believed 100% this treatment approach would be an answer for kids fighting DIPG. He  gave us and others our first real glimmer of HOPE.  His friends and family are commited to carry on Jace’s work. Jace had a shirt that read, “I can’t die, I’m busy,” which showed us how intense he was. With that same spirit, his friends will continue to be busy finding a way to save children from DIPG. 

The funds collected by making a donation below will be collected by Arms Wide Open Childhood Cancer Foundation and will be directed for the purpose of  adding an additional nurse practitioner dedicated to support the DIPG/Spinal cord GD2 Car T Cell Trial at Stanford. 

Make a donation

Joe Baber, a friend of Jace


Posted in Cancer, Childhood Cancer, DIPG, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , , , | Leave a comment

Think about others


Does this coronavirus scare you? I’m concerned because I’m one of those you have heard about. I’m in the “most vulnerable group” (MVG). I’m retired, a grandparent and will be 75 in a few weeks, a congestive heart failure patient for the past 20 years, and on top of that, I have about 50% lung capacity.  Sure I’m concerned, you won’t catch me out of my house or yard unless it’s a real emergency!  So all of us in the “most vulnerable group” to be safe, should do like I do and stay home right? WRONG! 

A lot of people don’t realize it, but the folks in my MVG group are not the only ones that need to worry.  The ones most people don’t think about are those who, regardless of age, have an underlying health problem or a compromised immune system.  If someone is being treated, or has been treated for cancer, this covid-19 virus could kill them!

As I said, I am concerned, but what really scares the hell out of me is what could happen to kids! I am a childhood cancer advocate and this is a very dangerous time.  Because there is a general belief by the public that children are not very much affected, for kids who have been or are fighting cancer, they are the ones who are really in danger. The children and their grandparents are dependent on everyone else to also follow the CDC guidelines, and government directives to keep from spreading the virus. We all have a responsibility to each other. Our actions, or lack of appropriate actions, could kill a child or their grandparent.  We all share a responsibility to keep each other safe even those we don’t know. Act as though you are a MVG member, or all your loved ones, friends and neighbors are MVG’s too. 

Read this Facebook post by a mom with two young children, one has fought cancer and is scheduled to have his port removed this month. This tells is all…

84863141_10157625517410923_4238928748860145664_nAlmost one-year-ago, in April of 2019, our then five-year- old, Tucker, was diagnosed with a cancerous brain tumor and we did not know if he would survive. The ONLY priority we have had over the past year is to save Tucker’s life. We have sacrificed everything and anything to keep him healthy – as I imagine you would also do for your own child if you were ever in this situation. 

So why aren’t you doing it now? Does it take almost losing your child to really understand that nothing is more important than life itself? 

I don’t care about going to the beach. I don’t feel bad that my kids don’t get to hang out with their friends or play sports right now. I could care less that every single plan I had in my calendar is now postponed. Because all of that is a temporary inconvenience to come out of this ALIVE! And by the way, you are LUCKY if this is just temporary! So many children are battling cancer for the second, third, fourth time…

Virus6CDCAdam and I are both working 40 hours from home while home schooling our children without the normal help of my mom – in order to keep her and us, safe! It’s hard as hell but it’s easier than watching them get sick and possibly die. I saw a picture of neighbors in a neighborhood down the street from mine hanging out in their small driveway while all their kids played together. I wish I could be that ignorant. Cancer changes you forever. 

I would not wish the journey we’ve traveled this past year on any one of you. We’ve survived it intact but our hearts are forever with those we know who didn’t (including three children who have died from their cancer this past month). So please stop trying to live your best or even normal lives right now! I know it’s hard to shift gears when your own family seems healthy. I swear to you that until you almost lose a child or do lose a child – you can’t begin to understand the overwhelming grief that lives within you every single day. But if you need someone to remind you why you should take this seriously and stay home – think about Tucker!


Author: Joe Baber with Kelly Mika Tucker Davis

Posted in Uncategorized | Leave a comment

Collaboration to Cure Medulloblastoma


Editor’s Note: In recognition of Brain Cancer Awareness Month, we are publishing an article that was reported in the April 24, 2019 ASCO Daily News. It highlights the massive collaborative efforts by private foundations such as the Carson Leslie Foundation and others to promote research in all types of childhood brain and CNS cancers. Private foundation funding and collaboration will be the key to finding cures in the future.

Carson Leslie was a kind, popular, full-of-life teen who loved sports and spending time with his family and friends. He was a devoted student at the Covenant School, in Dallas, where he was quarterback on the football team, and an active member of Grace Bible Church. He shared a special bond with his older brother Craig, and the two were inseparable. He was “an indominable spirit from early on as a little boy” and “the kid everyone wanted to hang out with on Friday nights,” reminisced his mother, Annette Leslie.

When Carson was 14, he experienced a cascade of symptoms that initially perplexed his physicians but ultimately led to the diagnosis of medulloblastoma. He underwent treatment for 3 years until the family was told there was nothing further that could be done. He died of the disease at the age of 17, in early 2010.

Throughout his years of treatment, Carson kept a journal, which eventually became a book, Carry Me, published 6 days before his death. The book provides a glimpse of what it is like to fight a life-threatening disease as a teenager. He wrote, “I have written a book to give a voice to the teenagers and children who have cancer but are unable to express how such an illness affects their personal, social, physical, and emotional life … I wish to make a difference, and I know others my age want to do the same.”

“Carson was a giver at heart,” Ms. Leslie said. When it became clear that he would not survive the disease, he told his parents to “make sure they study those tumors in my brain, because if those tumors can help some kid someday not die from cancer like I am, I’d like that; it’s hard to have cancer.” His family honored his request, donating tumor samples that were used for mouse models. This was only the beginning of the contributions from Carson and his family.

In 2010, the family launched the Carson Leslie Foundation as the only nonprofit organization in the United States with a focus on finding a cure for medulloblastoma. “Medulloblastoma is the most prevalent of children’s brain cancers, and brain cancer is the deadliest of children’s cancers,” Ms. Leslie said.

Through a collaboration with the Cancer Prevention and Research Institute of Texas, the Carson Leslie Foundation supported the Carson Leslie Awards for Pediatric Brain Cancers totaling $3.2 million for research programs at University of Texas Southwestern Medical Center, Baylor College of Medicine, and Texas Tech University Health Sciences Center. The Carson Leslie Foundation established a #cureMEdullo initiative to further propel its research support. One of the first efforts as part of this initiative was supporting a Conquer Cancer Foundation of ASCO/#cureMEdullo Young Investigator Award in Medulloblastoma Research powered by the Carson Leslie Foundation.

“It is an honor to partner with ASCO and Conquer Cancer by investing in a Young Investigator Award,” Ms. Leslie said. “We have great hope a young, eager, open mind will unlock secrets hidden in the complexity of medulloblastoma and bring less-toxic treatment to this awful disease with an ultimate goal: a cure.”

Gerald J. McDougall, a Conquer Cancer board member and the chair of the Carson Leslie Foundation board, said, “The joining of forces between our organizations represents our synergistic commitment to advancing research in medulloblastoma and ensuring a cadre of investigators focused on this important area. Based on my decades of working with leading cancer organizations, leveraging ASCO infrastructure by supporting the Conquer Cancer Young Investigator Award program makes sense for these organizations.”

Walter M. Capone, MBA, a Carson Leslie Foundation board member and director of its #cureMEdullo initiative, said, “Since inception, #cureMEdullo/the Carson Leslie Foundation’s singular focus has been to accelerate the most promising science and therapeutic advances in our pursuit of cures for children fighting medulloblastoma. The Conquer Cancer Foundation’s mission is exquisitely aligned with Carson Leslie’s, and we are deeply gratified to partner with such a powerful organization on this ambitious journey.”

The Carson Leslie Foundation’s work is not limited to research. Because Carson had cancer for most of his teenage years, the family saw first-hand a need to fill a void in services and activities geared to patients with cancer in this age group. “When Carson was an inpatient, he never left his room,” Ms. Leslie said. “The playroom was full of ‘loud little kids,’ and those were very lonely days for him. So, we built the teen room, we affectionately named ‘ ,’ on the oncology floor at Children’s Health, Dallas, where he was treated.”

Ms. Leslie further recalled, “When Carson was diagnosed, we arrived at the ER with nothing, so we now provide Under Armour backpacks for [teens who are] newly diagnosed or relapsed [that are] full of items that might come in handy during long hospital stays. We are thrilled to have a partnership with the Jordan Spieth Family Foundation to expand our backpack project to additional hospitals.”

“We are honored to work with the Carson Leslie Foundation to make progress against medulloblastoma,” said Nancy R. Daly, MS, MPH, chief philanthropic officer for Conquer Cancer. “The Leslie family’s commitment will make a tremendous impact and bring hope to other children and families suffering from this disease.”

Author Joe Baber


Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , | 2 Comments

Two Little Words

Two words that are used most when people contact Members of the House or Senate are: “I want,” and “I need.” Representatives and Senators hear them everyday. The two words they seldom hear are “Thank You.”

38145872 - portrait of smiling little school kids in school corridorThis year alone, Congress passed the RACE Act, which will improve drug development for childhood cancers. $12.6 million was appropriated for a fifth year for the Gabriella Miller Kids First Act. The Department of Defense, CDMRP, again provided millions of dollars in funding for Pediatric Brain Cancers and the Peer-Reviewed AYA and Pediatric Cancer Research Program. The House and the Senate passed and fully funded the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act and the President signed it into law. It will expand opportunities for childhood cancer research, improve efforts to identify and track childhood cancer incidences, enhance the quality of life for childhood cancer survivors, and ensure publicly accessible expanded access policies that provide hope for patients who have run out of options.

It’s time for our Legislators to hear the words they want to hear most, “Thank You.” By recognizing them for the good they have done for our children, we will leave an everlasting impression of gratitude. In the future when we go back to ask for other helpful legislative initiatives or support, they will be more willing to help.

There are many ways to say “Thank You.” You can call, write, tweet, facebook.and even visit their offices. Thank them and make it personal. Tell them how their efforts will help you, your child, or your community. Use #GoldStrong, #ChildhoodCancer, or #CureFestUSA 

How to contact your Legislators

Everyone has one Representative and two Senators

All you need is a computer linked to the internet and your zip code

Representative: https//house.gov

Senators: https//Senate.gov

Author: JoeBaber

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized, young adults | Tagged , , , , , , , , | 1 Comment

Turn Away… You may not want to hear this

About eleven years ago, I was with my middle daughter, JoAnna Baber on our overnight shift at Rady Children’s Hospital in San Diego, CA watching over my 18 month old grandson and her nephew, Conor after he had lifesaving surgery to remove a neuroblastoma tumor wrapped around his aorta. We were providing some relief for Beth Anne Baber and Nick, parents of Conor. Our job was to make sure he did not pull out any of the wires and tubes that were connected all over his body. In the PICU at 3 AM it’s pretty quiet, mostly beeps from the equipment. I will never forget the night I heard a horrible sound from across and down the hall of uncontrolable crying and sobbing coming from the parents of a child who had just died of cancer. That single incident is embedded in my memory and has driven me to try to find ways to help kids with cancer. My unforgettable experience that night made me very receptive to one woman’s life long mission today. Suzanne Gwynn is a most favorite person of Conor’s mom and me. She is a powerhouse who has been a critical care and oncology RN nurse to children for about 30 years. People do not want to listen to her because she speaks of the very sad and unspeakable… children dying. Not only dying, but most kids are having to die in strange places, like hospitals. As Suzanne says, children dying is unimaginable,  childhood cancer is not your world…until it is, and then when it is, it’s absolutely devastating to you, your child and your entire family. Suzanne is trying to build a palliative care/hospice home for children. It’s not just a good idea, it’s really our responsibility as adults to ensure that our children are well taken care of, even when at death’s door. The typical hospice does not know how to help children die because they are not supposed to. In Suzanne’s Ladybug House​ palliative care /hospice it will never be just about dying, but it will be about living all the way to the last breath.

A former patient of Suzanne’s, Bill Harper who had leukemia 7 years ago and was close to death, came back to interview her and find out more about her project of love for critically ill children. Here is Bill’s interview with Suzanne. It’s 30 minutes long! If you have ever loved a child, you need to put your big boy or big girl pants on and listen to it. It is our responsibility to know about what children have to go through to live to the last breath so that we can change and improve what we are doing. It won’t go away if every one ignores it. Listen here:  https://soundcloud.com/bill-harper-583059533/its-not-about-dying-its-about-living

Author: Joe Baber

Related Articles:

Ladybug House   A home away from home

screen-shot-2017-01-04-at-9-56-04-amOur health system fails terminal kids


Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized, young adults | Tagged , , , , , , , , , , , , | 1 Comment

Cord Blood, a life line


We are living in truly amazing times as scientists are just beginning to understand the power of stem cells. In particular, cord blood stem cells are providing new hope to cancer patients throughout the world. At Save the Cord Foundation, we believe strongly that every expectant parent needs to understand how cord blood is currently used as well as the promising research happening in this field. We want parents to make an educated decision about whether to publicly donate or privately store their future baby’s cord blood.

Cord blood provides a non-controversial source of stem cells. This non-controversial source of stem cells is not only easy to obtain but it is proving to be the “stem cell of choice” again and again for treating many blood cancers. For many children (and adults) suffering from cancer, cord blood is often their only hope.

In fact, some studies now suggest that cord blood may be more effective than bone marrow in treating certain diseases such as leukemia (source: http://www.coloradocancerblogs.org/cord-blood-matched-unrelated-donor-bone-marrow-transplant/ ).

Did you know that there have been over 35,000 cord blood transplants since the first procedure was performed in 1988? Did you know that cord blood has been approved by the FDA for the treatment of more than 80 different diseases including leukemia, lymphoma and sickle cell anemia?

Cord blood registries worldwide have been established alongside public registries for bone marrow donors (example: BeTheMatch). When seeking a stem cell donor for a patient, doctors often search for both bone marrow donors and cord blood donors. For certain patients, cord blood is the preferred option.

Stem cells from cord blood have been shown to have distinct advantages over bone marrow stem cells. Cord blood stem cells are less likely to provoke Graft Versus Host Disease (GvHD) than bone marrow. They are much easier to match than bone marrow thanks to fewer matching criteria.

Cord blood stem cells are easy to store and accessible at any time thanks to the freezing process whereas collecting and using stem cells from bone marrow is quite an involved process for the donor. Cord blood stem cells are more primitive (thus easier to adapt) than stem cells that are found in bone marrow for example and collection of cord blood stem cells does not harm the mother or child since it is done post-birth.

You can learn more on the advantages of cord blood stem cells here.

At Save the Cord Foundation, we have seen first-hand how cord blood saves lives. We would like to introduce you to two wonderful boys. Meet Dylan and Noah.

Dylan Praskins _ Amusement Park Post Cord Blood Transplant_Age 6


Dylan: Being a kid thanks to cord blood!

Dylan Praskins was diagnosed with Acute Lymphocytic Leukemia (ALL) at a mere 2 months old. His cancer was very aggressive and he was considered very high risk because he was not even 90 days old at the time. He was immediately put on chemo and doctors determined that a cord blood transplant would be his best option. Read Dylan’s story which his parents describe as “nothing short of a miracle.”

Noah Swanson_cord blood transplant

Noah: Starting school and enjoying life thanks to a cord blood transplant

Noah Swanson was 10 months old when he started to develop chronic ear infections. A simple blood test revealed that his white blood count was dangerously low. At 2 years of age, Noah was diagnosed with myelodysplastic syndrome (MDS). Find out how cord blood saved Noah’s life.

Today’s children are both key to this evolution in medicine of using cord blood stem cells and potentially its greatest beneficiaries. More than ever, we need expectant parents to be pro-active about saving cord blood (whether they store it privately or donate it). All you need to do is meet someone like Dylan Praskins or Noah Swanson who has been helped by a cord blood transplant and you will see why we consider it such a valuable resource.

In addition to using cord blood to treat many blood cancers, there are numerous clinical trials underway using cord blood to potentially treat things like acquired hearing loss, cerebral palsy, perinatal stroke, autism, HIV and much more. This is exciting science that is quickly becoming applicable medicine for the general population. Find out more about the latest cord blood research.

The debate on cord blood is over. We know now that it is used to treat blood cancers and is highly effective. We know now that it is a non-controversial source of stem cells that is easy and harmless to collect. We know it has distinct advantages over bone marrow stem cells and can be the preferred treatment option for many patients. Yet, currently, cord blood is simply thrown away as medical waste in over 95% of births. Why? Lack of awareness about cord blood is the main reason. Logistics and costs are also major challenges for both hospitals and parents.

Save the Cord Foundation is working to change this through extensive educational outreach and supporting ground-breaking programs to hopefully, one day, make cord blood collection the standard of care for births. Help us to achieve this goal! Join the cord blood movement or make a donation.

So why should you save your baby’s cord blood? We can give you 80+ reasons! Please don’t throw your baby’s cord blood away.  You do have options.  If you are pregnant (or know someone who is), feel empowered and be pro-active.  Talk with your doctors about either privately banking your baby’s cord blood or donating it to a public bank so that it can help someone waiting for a match. If there is not a public donation program at your hospital, a “hybrid bank” may be able to help you donate (visit our site www.SaveTheCordFoundation.org for a list of options).

There is not a bad choice.  However, if you choose to do nothing, your child’s cord blood will be thrown away. . . simply thrown away as medical waste.

Give life twice. #SAVETHECORD

Author: Save the Cord Foundation Staff

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized, young adults | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , | 1 Comment

CAVATICA Genomics Data Sharing


Editor’s Note: CAVATICA completed Beta testing and went live on October 17, 2016.  This is a huge step in the right direction to eliminate silos of data and enter a new world of data sharing. The complete story can bed found here.

I have a rule that I follow—that if a parent who has lost a child to cancer needs a hand, I will find a way to pitch in—no matter what. Of course, life is busy, there are never enough hours in a day; however, those who are fighting to save the lives of children despite losing their own child are given high priority status. So when my friend (who I met via this blog) Amanda Haddock from Dragon Master Foundation asked if I would be interested in LaurieOFBpost61516_edited-1attending the Children’s Brain Tumor Tissue Consortium (CBTTC) Annual Investigator/Foundation Meeting in New Orleans, saying yes to an excursion to the Big Easy was very easy. I figured I could go, take notes and write them up, and thus make a tangible contribution to a cause that I care so much about.

I know so much about so many different types of cancers, but so little about brain cancer. My family has been hit by various adult cancers, but no brain tumors or childhood cancers to date—knock on wood. Little did I know how much I would learn at this meeting. I feel like I’ve gained more than I could possibly give back.

So, just briefly, the CBTTC is a collaborative research program led by leading pediatric brain cancer clinicians and researchers across 8 institutions, with The Children’s Hospital of Philadelphia (CHOP) as the coordinating center. I’ve included a 1-pager (click here), for those who are not familiar with the CBTTC research program and objectives.

The meeting captured a lot of heavy duty science—and I mean heavy, hard-core science—not only with respect to tumor biology and genomics, but also computer science and informatics. I’m sure almost everyone in the audience had some of those deer in the headlights moments, given the subject matter being presented at any given moment. Attendees included representatives from several non-profit foundations, neuroscientists and other laboratory/clinical scientists, pediatric neurooncologists responsible for day-to-day clinical care, and computing/informatics professionals. As someone with a background in oncology pharmacy, the computing/informatics part is most foreign to me, which is likely true for most clinicians and non-computer scientists who speak a very different language than computer scientists.

Untitled-1_edited-1In terms of my note-taking, there was so much technical information that I am in the “process of processing”. But in the meantime, I wanted to share with you – members of the childhood cancer awareness community – some of the big takeaways.

First, unless you have been living under a biomedical rock, you are familiar with the VP Joe Biden-led Cancer Moonshot. If so, you have heard lots of talk about breaking down silos, collaboration, big data, genomics, immunotherapy, and precision medicine. Lots and lots of talk about share, Share, SHARE in the interest of accelerating cures and saving human lives from the devastation that often accompanies a cancer diagnosis.

Well, the bottom line is, that the CBTTC is already doing these Moonshot-esque things—and have been doing these things. This “sharing” is in no way a new concept for the LaurieMeetingImageCBTTC. Not only are 8 institutions working together to break down those silos, they are more than happy to share, Share, SHARE their data with institutions outside of the CBTTC network. Their willingness and ability to do so stems from a genuine desire to save lives—save them while sparing them from the long-term and sometimes life-long toxicity of treatment regimens that are unlikely to help them, based on the characteristics of their own unique tumor biology. We can do things now, in the year 2016, that simply couldn’t be done before. On that note, while the CBTTC has been collecting high-quality biospecimens for several years, simply collecting tumor tissue isn’t enough from a saving lives standpoint. So they have not only been collecting tissue from all brain tumor types, but they have been linking that tissue to long-term clinical and genomic data. Then, by creating an open-access specimen and data informatics system, an environment for worldwide collaboration can be put into place. And it has been put into place already, with the introduction of CBTTC’s CAVATICA—a new cloud-based environment for securing storing, sharing, analyzing large volumes of pediatric brain tumor genomics data. CAVATICA is named after Charlotte A. Cavatica—the LaurieCAVATICAbarn spider of the children’s story Charlotte’s web. It’s not puffery to say that real advances can and will come from this type of comprehensive genomics/clinical database. As I learned at the meeting, the CBTTC already has several commercial partnerships in place to develop what we might call “apps” to make sifting through such large volumes of data more user friendly. They have also partnered up with the Pacific Pediatric NeuroOncology Consortium (PNOC, network of 15 children’s hospitals that conduct clinical trials of new therapies), creating a critical bridge between science and clinical medicine. CAVATICA is so innovative and the partnerships in place are so very timely, fitting right into the Cancer Moonshot.

So takeaway 1 is really that the CBTTC is already doing what researchers should be doing in the interest of saving and improving human life, and that’s very inspiring.

Which leads me right to takeaway 2, which is critical for everyone to know and understand. CAVATICA may have started as a pediatric brain tumor database, but it is being developed to expand to any and all tumor types. This includes not only other types of childhood cancers, but also adult cancers. And this is a truly awesome thing, for reasons that may not be obvious on first blush. First of all, discoveries for children with brain cancer will be further accelerated by the ability to compare and contrast the genomic patterns in those tumor samples with those from other childhood and adult cancers. Without having those other cancers in the mix, critical patterns that can lead to new targets for treatment can be missed. Secondly, I hope that we can all agree that all patients with cancer deserve curative treatment, no matter what type of cancer or what age the patient is at diagnosis. All cancers represent some type of DNA damage. We should be able to reverse that damage, more effectively and user safer patient-specific therapies. Because I am all about “cures for all cancers”, I love the CAVATICA database and the vision behind its pioneers all the more. I believe that now is the time to break down the childhood vs adult cancer silos, so a big Thank You to the CBTTC for seeing the big picture in their big data plans and designing CAVATICA as something that we can all get behind.

Lastly, perhaps the most shocking takeaway for me is this: this high-tech effort, requiring intersection of various types of science and clinical medicine, has been and continues to be Lauriecavaticalaunchfunded in its entirely via donor support. Without the enthusiasm and generosity of the various non-profit foundations, CAVATICA would not exist. And it is not lost on me that children, many of whom have lost their lives, are the ones making this happen—these kids include Kortney Rose (age 9 when she passed away from brain cancer after 4.5 months), David (age 18 when he passed away from brain cancer after about 2 years), Christopher (age 7 when he passed LaurieKennedyquoteaway from brain cancer after 9 months), and Thea (diagnosed with brain cancer at 4 months of age and continuing her fight at age 9, having been in treatment almost her entire life), and so many other foundations, families, and donors who are stepping up to make the vision of the CBTTC a reality. I encourage everyone reading this to learn more about the CBTTC in particular and figure out ways to collaborate on the Cancer Moonshot in general—which is far more complex and for which far more is at stake relative to the regular “Moon” Moonshot. Whereas the moon is one big static thing, curing cancer will require precise rockets specific to millions of big and little people.

Author: Laurie Orloski

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , , , | Leave a comment

The Cancer Moonshot: Are Our Kids Stepping on the Moon Too?

MoonShotAgin_edited-1On September 12, 1962 President Kennedy delivered his famous “moonshot” speech. Screen Shot 2016-02-08 at 5.33.01 PMDeclaring that as a nation, we would focus vast resources to landing a man on the moon and safely bringing that man back to earth. It was ambitious and the roadmap was not fully developed. President Kennedy of course never lived to see that dream come to fruition; however when it did it is now even more fitting and apropos that the man who ultimately first set foot on the moon lost a child to cancer himself. Armstrong’s young daughter died from what most of us in the childhood cancer community now believe was DIPG, the same type of inoperable brain tumor that ultimately took the life of my daughter Alexis.

Fast-forward to the President’s recent State of the Union address delivered on January 12, 2016. He announced that once again the United States would embark upon heading to the moon. Except this time, the moonshot refers to the Emperor of all Maladies; Cancer. With Vice President Joe Biden steering the effort, the goal is to end cancer, as we know it. The cancer moonshot was announced with the hopes of infusing $1.0 billion dollars to the effort. In the 2017 budget that the White House prepares, there will be a request for an additional $755 million increase in funding for cancer research generally as well as the oversight of an additional $195 million in new funding provided to the , . The outline of the moonshot was released by the White House and can be found here.

Screen Shot 2016-02-08 at 5.34.57 PMFor the childhood cancer community, a simple question surfaced: Are our children going to the moon? The news release the White House issued does specifically mention pediatric cancer. The outlined effort for pediatric cancer, as denoted in the release, is aimed at developing new technologies for drug libraries for screening to discover new treatments; efforts to increase tissue and tumor specimen collection for the “rarest” childhood cancers; and the collection and inclusion of increased clinical data to assist clinicians in the future course of treatments. Based upon this thumbnail outline, it is difficult to tell whether or not our children will set foot on the surface or whether they will be like Michael Collins, who stayed in the command module poised to pick up Armstrong and Buzz Aldrin after they completed the first walk on the surface in 1969. In theory the efforts outlined in the release would certainly make a positive impact in the fight against childhood cancer. Creating a larger drug library for increased efforts at drug screening is critical to determining whether or not existing drugs, compounds, and even potentially biologics, demonstrate efficacy upon specific cell lines, tumor types, genetic mutations or other identifiable targets.

There is a more pressing and underlying issue that needs to be addressed, as it exists like a pink elephant in the room. Specifically, it is the issue of drug development and availability for childhood cancer. The ability to conduct more substantial drug screening, dependent upon access to the drugs and compounds, is the first component of unlocking more effective, less toxic treatments (of course backing up even further identification of proper targets to utilize for drug screening and targeted therapies is beyond essential). The secondary component of the equation is ensuring that these drugs and compounds, once the efficacy is demonstrated in the preclinical setting, are available to be initiated in clinical trials or available for clinical use. Anything less in this overall effort, in my humble opinion, ensures that children, like Michael Collins, will remain in the capsule waiting for the others to arrive back inside.

Ensuring greater data sharing either in the research or clinical setting, collection of increased epidemiology data, and tissue collection are of course necessary components to increasing the overall understanding of biology, incidence rates and treatment efficacy. Nevertheless, the key question remains, will more clinical trials be initiated for children with the drugs that are screened if the preclinical data “de-risks” the use of any of those drugs? Children with cancer without a set frontline treatment protocol are usually left without many options. For recurrent or metastatic disease, the options are even more limited.

bicycle-wheelI view childhood cancer like a bicycle wheel full of spokes. There are many spokes on the wheel and individually the spokes represent separate issues to be addressed. No single spoke is sufficient enough that if it was the focus of the moonshot it would be a “cure” for all forms of childhood cancer. Accordingly, placing bets on which spoke to focus upon is obviously very difficult. There are some commentators that have already opined that the amount of money to be dedicated to the overall effort is insufficient. This is probably very true. And, thus as we drill down to where our children fall in this moonshot, it seems likely that the overall impact will not be significant. Of course it is impossible to provide any reasoned assessment of the overall efficacy of this effort at this point in time. It is Untitled-1_edited-2easy to criticize, but such criticism is presently misplaced. In the end, any additional focus and resources dedicated towards childhood cancer is thoroughly welcome.

Neal Armstrong reached those first monumental steps by carrying his grief with him and allowing those emotions to keep him focused. In many respects, children with cancer have already set foot on the actual moon. It is up to us advocates to continue to ensure that children with cancer are always brought out of the command spacecraft and firmly planted on the moon. And it is up to us advocates to continue to work effectively to create opportunities for drug discovery, development and availability. An identified target is key to determining effective treatments, but there is an underlying component to the useful nature of that data. Unfortunately, if those treatments are not made available, then children with cancer can only continue to look at the moon as they circle it waiting for a turn to take that one giant step.

Author: Jonathan Agin
Reprinted from Max Cure Foundation. Follow Jonathan on Twitter @jonathanagin

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FlyMeToo_edited-1Fly me to the Moon

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Broken Trust

BrokenTrust_edited-1I just can’t believe what I read the other day and what I am about to write about right now. This about trust—trust between patients and their healthcare providers. This is about trust that is being broken.

What I read:

The New York Times published an article on January 29, 2016, entitled: Drug Shortages Forcing Hard Decisions on Rationing Treatments. It was actually the subtitle that caught my attention: Such shortages are the new normal in American medicine. But the rationing that results has been largely hidden from patients and the public.

The article was not specific to childhood cancer or cancer in general, but many of the doctors quoted were oncologists. They talked about different approaches to rationing drugs, including decisions based on age. I encourage you to read the entire article, if you haven’t already.

What I’m writing about:

I’m going to reserve comment on the drug shortage problem itself, including the causes behind it and any proposed solutions. I am also going to reserve comment on the complex issue of rationing the drugs, other than to say that I recognize that nobody wants to be in this situation and that such decisions must be very difficult. I don’t want to get into any of that right now.

I’m writing about 1 aspect and 1 aspect only: the decision to not tell the patients and families.

Here are some specific highlights for context, taken verbatim from the piece:

CLEVELAND — In the operating room at the Cleveland Clinic, Dr. Brian Fitzsimons has long relied on a decades-old drug to prevent hemorrhages in patients undergoing open-heart surgery. The drug, aminocaproic acid, is widely used, cheap and safe. “It never hurt,” he said. “It only helps.”

Then manufacturing issues caused a national shortage. “We essentially did military-style triage,” said Dr. Fitzsimons, an anesthesiologist, restricting the limited supply to patients at the highest risk of bleeding complications. Those who do not get the once-standard treatment at the clinic, the nation’s largest cardiac center, are not told. “The patient is asleep,” he said. “The family never knows about it.[…]

Studies have associated alternative treatments during drug shortages with higher rates of medication errors, side effects, disease progression and deaths. For example, children with Hodgkin’s lymphoma who received a substitute to the preferred drug had a higher rate of relapse, researchers found, and adults with a genetic disorder called Fabry disease had decreased kidney function when their medication was cut by two-thirds. One alternative guideline adopted during a shortage of intravenous nitroglycerin “was downright scary from a clinical perspective,” according to Dr. Nicole Lurie, a senior federal health official.

Physicians say that many of the changes they are compelled to make appear to do no harm. But, they acknowledge, typically no one is tracking outcomes in patients who get a drug and others who get a substitute or delayed treatment.

Doctors and hospitals often do not tell patients about shortages and the resulting rationing because they do not want them to worry, especially when alternative drugs are available, or because they feel it would stir up too much anger.

Dr. Ivan Hsia, an anesthesiologist in Ontario, Canada, said many physicians in his field adopt what he called “the paternalistic model — like I’ll inform them when I think it’s unsafe enough to inform them.

When he and his colleagues surveyed hundreds of patients at the Mayo Clinics in Arizona and Florida and others in Canada about their preferences, the results surprised him. Most wanted to know about a drug shortage that might affect their care during elective surgery, even if there was only a minor difference in potential side effects, and many said they would delay surgery.

When the study was published last year in the journal Anesthesia and Analgesia, an accompanying editorial urged health professionals to disclose shortages and their implications. “Patients want to know and they should know,” the editorial said. “There is no ethical ambiguity.”

 Dr. Eric Kodish, a children’s cancer doctor who heads the Cleveland Clinic’s center for ethics, humanities and spiritual care, said patients should be told. “It’s their bodies and their lives that are on the line.”

Indeed, Beverly Smith, a Cleveland patient who has Crohn’s disease, said she had no idea that an important ingredient had been removed from the daily intravenous nutritional treatments she depends on until she developed side effects from the deficiency. “Why didn’t anybody tell me?” she asked. [….]

A recent shortage of a therapy for bladder cancer, BCG, demonstrates how the lack of national guidance can lead to very different decisions. One ,urologist, Dr. Andrew Stephenson, said he came up with BCG rationing guidelines that were used with dozens of patients after being shared with colleagues. “We tried to reserve the BCG for those patients who needed it the most,” he said.

Merck, the manufacturer, said it filled requests from a waiting list in the order received, and left rationing decisions to doctors. Some cancer centers reduced the length of BCG treatment from three years to one, because the benefit may be smaller after the first year. Others restricted BCG to patients whose tumors were mostly likely to spread or recur. And still others decided to reduce the typical dose so that each vial could be used for three patients instead of one, which some experts say raises questions about efficacy. Some outpatient clinics just ran out.”

Wait—what? Patients are not being told about shortages and rationing, citing reasons such as “worry” and “anger”? Is that really what I read? I seriously had to do a few takes and pinch myself.

PrescriptionAs a registered pharmacist who is trained in the hospital setting, I have to say that I am completely and utterly appalled by even the mere suggestion—and this is no mere suggestion, but what it actually says. Good grief.

“Patients should know.” “Patients should be told”. Should, should, should.

With all due respect, what’s with the “should”?

Nothing like stating the obvious here, but there is no should in this argument. Unequivocally, patients must be told if a therapy is being modified in response to a drug shortage.

Then we have this part, which completely blows my mind: “And still others decided to reduce the typical dose so that each vial could be used for three patients instead of one, which some experts say raises questions about efficacy.”

Wow, raises questions about efficacy, you don’t say? Are patients being told about these potentially efficacy-reducing dose-reducing strategies of rationing drugs to spread them around, even if the spreading around is thin? I can’t even find the words for just how QuestionsAboutEfficacyunethical it would be to not tell the patient that a dose reduction to save drug was being made behind their backs. I just can’t even get my head around that so-called strategy.

For many types of cancers, not all but many, alternative regimens exist that are considered equally effective. If I was being treated for cancer or if one of my family members were being treated for cancer, no way would I accept a suboptimal dose or duration of a chemotherapy agent on the basis of a drug shortage. I would explore alternative regimens. I would explore treatment at another center, if that’s what it took. If a dose reduction was ultimately the way to go, that would be for me to decide, after a detailed discussion of risk:benefit with my doctor.

Cancer patients have a tough enough battle without unknowingly receiving a potentially less effective (and possibly more toxic) substitute.

In some cases, reducing the dose a little might be a reasonable option. In other cases, it may be unreasonable.

The bottom line is that patients must be involved in this decision-making process.

I don’t care how busy these doctors and pharmacists are; they need to find time to explain the shortages to the patients and work with them on a solution that everyone feels good about.

So that’s the reality out there. Yeah, it’s scary, but I believe that it is way better to be informed than to live with one’s head in the sand.

I have no way of knowing how pediatric oncologists and adult oncologists may differ in terms of how they are handling the communication surrounding the changes they are being forced to make in response to not having enough drugs to go around.

LackofdisclosureI am in no way trying to demonize anyone.

Again, to reiterate, my gripes are not around the tough choices—but instead about the lack of disclosure to patients and families.

Clearly, it is more important than ever to really be vigilant—like a hawk.

Know the prescribed doses of all drugs to be used over an entire treatment regimen, also verifying that the doses are within the recommended ranges.

Keep yourself abreast of the drug shortage problems. Here are links listing drug shortages by generic name: http://www.ashp.org/menu/DrugShortages and http://www.accessdata.fda.gov/scripts/drugshortages/default.cfm. Check them. Nobody should have to do this on their own, but apparently patients must stay informed about this


Daunorubicin, primarily a leukemia drug and used for a few other cancers, remained in short supply for over 18 months 2014-2015

stuff. If there is any ambiguity or any questions, I would suggest calling the pharmacy at your hospital or clinic. It might not hurt to call them anyway. Form a relationship. If you have any friends or family members who are physicians, pharmacists, or nurses, ask them to help you as well.

Everyone should be doing this anyway, but if you haven’t been then now is the time to start: routinely check the dosing on any prescription bottles or infusion bags. Make sure the dosing has not changed. If it has, ask about why it is different. Sometimes doses might be modified due to a prior toxicity or for some other justifiable reason. It may or may not have anything to do with a drug shortage.

Preventing such an encounter is a much better plan though. So next time you talk to your doctor, pharmacist, or nurse, you may want to open up the dialogue. Be direct. Tell them you saw the New York Times piece. Tell them you are concerned about something like that happening to you or your loved ones—changes being made or drugs being withheld without your knowledge. Make it clear that you want to be informed. Talk to them, openly and honestly, but still stay vigilant!

If it were me or my family member and we showed up at an outpatient cancer clinic, only to find that what we had shown up for had been intentionally modified (whether it be a substituted drug or a reduced dose) without my knowledge or approval, I would go and round up 3 chairs: 1 for the prescribing physician, 1 for the dispensing pharmacist, and 1 for the infusion nurse. All 3 of them hold a responsibility. It would be explanation time. That’s just what I would do.

I would not be happy if it happened to me or a loved one, and I’m equally as unhappy knowing that these things are happening to other patients.

If a medication is being modified in response to a drug shortage, and the response is that it won’t affect anything, then ask your doctor for the evidence. Have them back it up just to be safe.

So, be proactively aware. Don’t be afraid to ask questions or speak up. Don’t let concerns get brushed off without evidence.

Trust your instincts.

Author: Laurie Orloski, PharmD


Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , , | 1 Comment

Fly Me to the Moon

FlyMeToo_edited-1President Obama called for an end to cancer in his State of the Union Address to the nation this year. He tasked his own Vice President with the job and since then the buzz word “Moonshot” has offered renewed hope for millions of Americans.  EMoonshotROCKET_edited-1very one in our childhood cancer community is very excited about Joe Biden’s very aggressive initiative. He calls it, the Cancer Moonshot. Mr. Biden’s son Beau died of brain cancer a year ago. Like all of us affected directly by cancer, it’s made him extremely passionate and focused about finding cures for this terrible disease. No parent should ever see a child die from cancer.

Mr. Biden wants to approach cancer research with real gusto, the same way America came together to successfully put a man on the moon in the late 60’s. The Vice President has spent several months visiting a host institutions involved in finding cures and will visit more in the future. Along the way, he has found such obstacles as silos that resist information-sharing, territory wars and competition among researchers. He will also find that some government regulations meant to protect patients and improve drug development, are also a few more major impediments that will need to be cleared to get this “Moonshot” off the ground.

The Vice President identified two major goals:  1.) Increase resources — both private and public — to fight cancer.
2.) Break down silos and bring all the cancer fighters together — to work together, share information, and end cancer as we know it.

He went on to say, the goal of this initiative is simple — to double the rate of progress. To make a decade worth of advances in five years. “Over the next year, I will lead a dedicated, combined effort by governments, private industry, researchers, physicians, patients, and philanthropies to target investment, coordinate across silos, and increase access to information for everyone in the cancer community.”

We are totally on board with the Vice President! But, first we want to make sure all moon mission workers are aware of the major obstacles that childhood cancer has faced ever since President Nixon first declared War on Cancer in 1971.

The Vice President wants to hear our stories of how cancer has affected us and our families. The White House has provided a site to collect all the stories. We would be remiss to not urge everyone in the childhood cancer community to send them in. We need to let Joe Biden know that childhood cancer is not rare, but is a major national problem. One way we can make a point is to have a excellent response in submitting our stories.

Click Here to Submit Your Story

Click Here to Submit Your Story

When writing consider the following points:

First: We need to make sure that everyone on the moonshot mission  understands that childhood cancer is not the same as adult cancer. Kids are dying from twelve weirdly named cancers that have over 100 subtypes and none of them are breast, prostate, lung, colon, or other familiar sounding adult cancers.

Second: Everyone at mission control needs to be acutely aware that childhood cancer is the number one disease killer of kids. It was in 1971 and it still is. As a matter of fact, the rate of incidence has increased since Mr. Nixon declared war on cancer.

Third: When it comes to cancer research funding, all twelve of the childhood cancers lumped together receive less funding from the National Cancer Institute than prostate NCIFundingChart2007_2013_edited-1cancer alone. Nixon’s war on cancer has been going on for 45 years! Our children have been left behind. There have only been 3 drugs developed specifically for childhood cancer in the last 45 years compared to 60 new cancer drugs for adults in the last five years alone!  Today, after all those years, we have to embrace adult cancer drugs which are toxic and cause 95% of the survivors to have very serious health issues. Parents are shaving heads, selling lemonade, baking cookies, organizing walks and races to try to add more research funding. NCI has done little to address the such recalcitrant cancers as DIPG and others that are so prominent in our community and continue to take our children daily. A child whose life is taken by cancer loses nearly 70 years of life!

Forth: We have waited and waited to see progress. We are tired of waiting only to see our government continue to call this disease rare and therefore not a high priority. Children should be our highest priority. We are tired of having leaders point to the “tremendous MoonShotFirstprogress” we have made in childhood cancer survival rates in the last 50 years. Must I remind you that we are comparing today’s survival rates to fifty years ago when we were doing absolutely nothing but sending kids home to die. The truth is we have made little to no progress in the last ten years. To double this progress over the next five years as the Vice President said won’t mean much in the childhood cancer arena. We need to do much, much more than we have in the last decade.

We should take the attitude that we are not going to accept status quo on this Moonshot effort. Children deserve priority placement and a first class ticket to progress that is expected on this journey. It’s about time! We don’t have more time. Enough children have died from this horrible disease!

Author: Joe Baberbounceballauthor

A week after this post was published, the White House issued a Fact Sheet with more detailed information. While we are very pleased and grateful that pediatric cancer was identified as  one of the moonshot’s research opportunities, a fact with which we certainly agree, we will continue to question priority setting while monitoring levels of investment, and breadth of investigations. One thing Nixon’s 1971 War on Cancer taught us is to not take anything for granted.  We can not afford to let our children get lost in the shuffle.


Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , | 2 Comments

I Gladly Spoke Up for Kids With Cancer Today

SpokeUp_edited-1I spent a brrrrrr cold Thursday afternoon in Philadelphia, at a Cancer Precision Medicine Conference in Philadelphia, hosted by the American Association for Cancer Research Screen Shot 2016-01-22 at 8.28.45 AM(AACR) and the Philadelphia Media Network. It was the first time that representatives from 6 Cancer Centers across Pennsylvania (Philly to Pittsburgh) were assembled in this fashion. It was a really cool thing because it represents a new frontier of collaboration toward cancer cures.

The first talk was by Dr. Stephen Grupp from Children’s Hospital of Philadelphia. He talked about what’s known as CAR T-cell cancer immunotherapy, a new approach to treating leukemia — where genetically modified immune cells are generating a response rate of 93% among kids with relapsed/refractory leukemia with no other viable treatment options. This type of response is UNPRECEDENTED in cancer. 93% response in heavily pretreated chemotherapy-resistant childhood leukemia, a population destined to die of their disease before this breakthrough — first documented in 2012 and since extended to 200 patients.

After some additional discussion of adult cancers, the meeting was opened up to questions. I jumped in as question número dos. It went something like this, not exactly but close: “I work in the adult cancer field as a contractor to the pharmaceutical industry but volunteer in the childhood cancer community, so I have several friends who have either lost children or whose children are dealing with the late effects of treatment. I know through my work that immunotherapy is moving to earlier lines of treatment much quicker in adults compared with kids. There are obvious reasons for this, including the fact that chemotherapy is not a good option for things like melanoma. And then there are ethical considerations in kids, because of the high response rates to chemotherapy. Chemotherapy may be effective but causes problems later in the form of late toxicity. Although we are not there yet, I was wondering if you could address the prospects for moving immunotherapy to earlier use in children. You mentioned in your talk the possibility of avoiding bone marrow transplants, but can you comment on the possibly of avoiding chemotherapy as well?”

Well, No, I’m not exactly short and to the point. Nonetheless, I grabbed the opportunity to remind the audience that children do still die from cancer while addressing the huge problem of late effects, which include secondary cancers and the need for things like liver and heart transplants later in life. Dr. Grupp already knows these things, but who knows about the rest of the attendees? My assumption was that most of the audience was in tune with adult but not childhood cancer. Late effects are more prominent in children.

The short answer from Dr. Grupp is that researchers are indeed looking to design trials to address the issues that I raised, including the use of immunotherapy before chemotherapy in certain high-risk patients unlikely to benefit from chemotherapy. That was good to hear. That’s a good next step. I know enough to know that if it works in the high-risk patients, testing in low-risk patients may be a logical next step. We are not there yet, key work “yet”. Chemo damages young bodies, we need to do away with it someday — key word “someday”. Again, not there “yet”, but all signs point to “someday”.

It was a large audience, 100s, mostly medical professionals. I had no idea how many childhood cancer parents and advocates were there, if any, when I stood to ask my question. There were over 20 questions from the audience over the course of the meeting, but mine was the only one specific to kids. My Question #2 was the first and only one specific to childhood cancer — how about that? I was glad that I took that opportunity to speak about kid-specific stuff.

854598_1280x720As I was walking out of the meeting, I spotted a very tall guy who stood out because he was so tall. But that face, so familiar. Then it was obvious — it was Devon Still of the NFL. His daughter Leah was treated at CHOP for a poor-prognosis cancer, and she’s currently in remission after a very public battle. Yay Leah! Her dad has been a very vocal advocate for not only her but also other kids; he has done a ton to raise awareness despite such tough days and keeping a busy work schedule. However, parents of kids who have been dealt the blow of childhood cancer should not have to shoulder that burden alone — it’s not fair. People like me, with healthy kids, can and should speak up too. It’s simply the right thing to do. Being a celebrity is not required.

Of all the “Big Ideas” surrounding cancer, I personally think that replacing DNA-damaging chemotherapy and radiation in favor of cutting-edge novel therapies (immunotherapies, among others) is a HUGE one for the kiddos. It’s critical for all patients, but especially the kiddos because of the survivorship issues that stem from the late effects of toxic cancer treatments. Once again, we are not there “yet” — there is lots to learn first — but it is important to work hard today toward that “someday”, when cancer is routinely treated way more effectively AND safely. So I will continue to stand up and speak up, like I did today. I like to talk — I’m loud —I don’t care if I fumble or stumble — I don’t care about who does or does not like my questions — so might as well put those traits to good use!

Author: Laurie Orloski


Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , , , , , , | 2 Comments

A 10 year old, Speaking from Experience



Natalia Sofia is a childhood cancer survivor. Two years ago, she was only eight years old and diagnosed with Ewing’s Sarcoma of her femur. She has endured surgery, intense chemotherapies and radiation treatments. She suffers from side effects of her life-saving treatments. This is her story written and presented to her school in her own words.

NataliaPresentation _edited-1Did you know that worldwide a child is diagnosed with pediatric cancer every 3 minutes?

Before a child turns 20, about 1 in every 285 children in America will have cancer. Unfortunately I was one of those kids, I had cancer. But fortunately, I am in remission, now and doing very well!

Because of my experience, I think and feel that we need better medicine for the children. The medicine for childhood cancer is from the 1970’s…I know, right?!?  That’s a loooong time ago!  That’s why we need to get chemo that is made for kids, NOT adult chemo. Because the medicine for childhood cancer is really made for adults, that does not mean the kids don’t take it. Childhood cancer medicine is very strong and makes their hair fall off.  We need to donate money, hats, and beanies. I think we should get medicine that doesn’t involve hair falling off.

NataliaTreatmentDid you know that childhood cancer is more deadly than asthma, cystic fibrosis, and pediatric AIDS combined. The month of childhood cancer awareness is in September, the ribbon is gold and people wear gold tshirts to support childhood cancer. But when that month is gone, the awareness is gone and so is all the support from the people wearing the gold tshirts. But that doesn’t mean pediatric cancer leaves…IT DOES NOT STOP.

That’s why I am here today. I am asking YOU to help bring more awareness to our community. What can you do to help raise awareness? You can first promote more research to be done in the community. More research brings better medicines for kids like me. Lastly, you can organize a fundraiser in your neighborhood. We need more funding to help cure pediatric cancer. Most kids don’t die from cancer, they die from the chemo side NataliaSupergirleffects. That is how strong and harsh it is. Chemo side effects are mostly kidney failure, heart failure, and liver failure. And for most part secondary cancers. Also, only 4% of 100% of funds go to funding for childhood cancer research. Let’s make that into a 100%!!!
Put yourself in someone else’s shoes that has been through cancer or is still in it. See what it’s like for yourself. Think about it, seeing and going to doctors almost every day. Missing friends at school. If you have a fever, you’re in the hospital, sometimes for a month! It’s NOT fun. So, if you were an 8year old girl or boy in the hospital on Valentine’s or Halloween or Christmas Day…what would you feel like??


Author: Natalia Sofia





Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , | Leave a comment

Bereavement Meeting


Last night I went to a bereavement group. It’s for parents that have had a child die. I actually like to go to these meetings. There are no pretenses. We are all walking down the same path. We understand each other’s pain. When we ask, “how are you?” it has quite a different meaning and context than when someone who hasn’t had a child die asks the same question of us.

We had such a large crowd last night that we had to break into two different groups of moms and dads. Some with a spouse, others without. Some were young, first time parents whose child died as an infant. Some, like me, have more than one child. Others had a child(ren) after the death of their first. We had several elderly people (one gentleman was 90 and his daughter died years ago when she was 55).  Some kids died from disease while others were from car or motorcycle accidents. We have quite a few suicides in our group. We would have never met outside of this bereavement group. Our lives wouldn’t have crossed paths. But tragedy brought us together.

This group has made me more compassionate. I had read about the death of a teenager who jumped off the ninth floor of a parking garage a couple of months ago. Now, her mother and I are sitting next to one another. Her daughter is no longer some abstract story that I read about in the paper.  Now she is real. Her mom is a living (or trying to), breathing person that can’t fully grasp her circumstances. I feel her pain rolling off her. I understand her need, to avoid, acknowledge her new reality. She looks to me for solace. I’ve walked her path.

Some of the children have been gone for 15, 20 or more years. I look to those parents for solace and guidance. These are the people that give me the most comfort. I’ve had more people than I could count tell me to “give it time,” “it’ll get easier as time goes on,” “time heals all wounds”…  I could go on and on with all of the asinine cliques that have been said to me about feeling better the further away we get from Gabriella’s death. The simple truth is that it doesn’t get better. I think that “it gets easier” for the people that are saying those things to me because it’s not so fresh and raw for them. But, as I turn to the parents whose 11013206_957904817565003_3095121134372874505_nchild has died a decade or more ago and as I hold their hand or pass them a tissue as they cry, I feel relief with their grief. Relieved, because my feelings are validated that my love for Gabriella won’t fade as we get further from her death.

All different but, the same. The same grief. The same despair. The same longing to hear our child’s voice and laughter, to hug and kiss them, to have another conversation. We miss our kids.

#GabriellaMiller #TalkIsBullshit #SmashingWalnuts

Author: Ellyn Miller


Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease | Tagged , , , , , , | Leave a comment

Open Letter to Congress

OpenLetter_edited-1Dear Member of Congress,

As you are preparing to make decisions about 2017 funding for the National Institute of Health (NIH) please consider a few things.

  • Childhood cancer is the #1 disease related killer of kids in the U.S.
  • The incidence of childhood cancer has been steadily rising over the past several decades
  • Currently 1 in 285 children will be diagnosed with cancer before they reach the age of 20
  • 20% of children diagnosed are terminal on diagnosis
  • 60% of children diagnosed suffer life altering impacts of treatment
  • 95% of survivors will suffer serious health impacts before they reach the age of 45

Despite the fact that thousands of children are suffering and dying each year, the NIH continues to defend its position of basically ignoring childhood cancer research. They say that childhood cancer is rare, they hold childhood cancer research hostage – telling Congress they could do more with more funding.

NIH supports their position by using a 90% cure rate statistic for one childhood cancer to distort the entire childhood cancer picture. Ironically, this statistic is related to a childhood cancer that has been the recipient of the majority of childhood cancer research since the 1960s. The picture is not the same for other childhood cancers where there has been little to no investment, these childhood cancers continue to kill and maim our children.

NIH recognizes that childhood cancers and adult cancers are different. They acknowledge that studying adult cancers does not result in treatment options for kids, but often the opposite is true. In spite of this awareness, we continue to use downsized adult protocols to treat the majority of childhood cancers, often with devastating impacts because there are few, if any, other options. The lack of research in childhood cancer means there are few pediatric protocols, treatments and drugs.   We need significant Federal investment in childhood cancer research now to address the growing incidence of cancer, to reduce tremendous costs to kids and society as a result of secondary impacts of childhood cancer treatments, and most importantly to give kids cures they deserve.

Congress has been aware of the steadily rising rate of cancer in children for the past couple of decades. Congress passed the Children’s Health Act of 2000 as a direct result of government’s concern about the steady increase in childhood diseases.   Title XI of this act required the Secretary of HHS through the NIH to study risk factors for childhood cancer and improve outcomes among children with childhood cancers and secondary conditions. Title X created the Pediatric Research Initiative requiring the Secretary to establish an initiative at NIH conducting and supporting research directly related to diseases in children. Since childhood cancer is the #1 disease related killer of children in the U.S., it seems reasonable to assume that the Pediatric Research Initiative would be fostering childhood cancer research and increasing pediatric clinical trials. This initiative has been funded by Congress for the last decade. It is difficult, if not impossible, to understand the outcomes. The public deserves transparency in order to understand how HHS has complied with this Act.

The Children’s Health Act authorized NIH to conduct the National Children’s Study (NCS) which was funded for over a decade at a cost of over $1 billion to taxpayers. One might wonder, at the possibilities if there might now be more pediatric treatments for childhood cancer if these funds had gone to childhood cancer research instead of the administrative debacle that was the result of this taxpayer funded investment. Where is the accountability? In 2014, the same Director of NIH that provided oversight of the NCS, cancelled the study discounting advice of internal and external panels that completed reviews of the study. Congress allowed that same Director to provide a plan for reallocation of funds appropriated for the NCS.   In the private sector, if a CEO mismanaged $1 billion, I think it would be fair to say that the CEO would not be making decisions about funding investments moving forward. It seems that the reallocation might have gone directly to childhood cancer research since this was one of the original intentions of the legislation but as far as we know, childhood cancer research did not receive any of the reallocated funds. Despite much external pressure on NIH over the past couple of year, NIH seems to dig in its heels even more about their position that childhood cancer is rare.

Congress has been asking questions about how NIH sets priorities. Over 20 years ago Congress passed legislation requiring agencies to develop strategic plans that helped agencies set priorities, identify goals, objectives, and outcomes of funding decisions. Legislation intended to improve public confidence in government, provide accountability and transparency to the public about investment of taxpayer dollars.   In 2014 Congress required GAO to investigate how NIH set priorities and that same year required that NIH complete an overarching strategic plan by December 2015. It is hard to understand why an agency with a $30 billion budget does not have a comprehensive strategic plan. NIH goals, priorities, and transparency seems to be obscured by the giant HHS budget. Stakeholders waited patiently for NIH to conduct stakeholder outreach as they were developing the strategic plan but that outreach was limited to a 3 week comment period at the end of July. It feels like the outreach was only a façade, going through the motions without considering stakeholder thoughts.

How does NIH set priorities with the $30 billion provided by taxpayers?  NIH, our country’s largest research organization estimated funding for 2016 (RCDC) shows

  • Drug Abuse = $1 billion
  • Obesity = $1 billion
  • Alcoholism = $0.5 billion
  • AIDS = $3 billion

We understand the importance of these issues, but it is difficult for taxpayers to understand how these research investments would be of a higher priority than the childhood cancer that is killing our kids year in and year out. Let me say again, childhood cancer is the #1 disease related killer of kids in the U.S.

Since 2007 Congress has provided report language and encouraged NIH to increase funding for childhood cancer research. Around this time NIH began to show that childhood cancer research received around $180 million per year. Even this amount is not a true representation of childhood cancer research. The number is derived by asking grant recipients to denote any percentage that might benefit childhood cancer and that is calculated as childhood cancer research.

NIH may continue to defend their position in spite of devastating impacts to kids and families, and society as a whole. Statistics can be twisted and turned to assist the defense, but there is no doubt that the incidence of childhood cancer is increasing. We need significant investment of Federal research dollars into childhood cancer research now – the kids are waiting.   Members of Congress we ask you to stand up for children and make childhood cancer research a legislative priority in the NIH budget.


Donna Carroll Carmical



Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , | 4 Comments

Why Motorsports?

WhyMotorsports_edited-1Why is it important for the teams, drivers and fans of the motorsports racing communities such as NASCAR, NHRA, IndyCar, WoO, IMSA and others to display “Gold in September?”

Because motorsports races are, as a whole, the No. 1 spectator sport (over 75,000,000 fans) and the races are always among the top sporting events attended in the United States. The big  NASCAR, NHRA and IndyCar races are broadcast in many countries and attract a lot of television viewers! With this kind of reach, a lot of awareness could be raised about childhood cancer! As an example, NASCAR teams and track owners receive a lot of corporate sponsorship support and displaying Gold in September, would have the potential, to not only raise public awareness about childhood cancer, but also reach many huge corporations, that might be willing to help fund childhood cancer research. NASCAR had one major sponsor who helped in the past. Aflac which donated over 87 million dollars to childhood cancer research since 1995 played a big role in promoting awareness. Sadly, they will not be a sponsor this year. We need other big sponsors to fill the NASCAR gap left by Aflac.


Aflac and driver Carl Edwards support Childhood Cancer Awareness Month each September

Gold in the most popular racing series, NASCAR, might get the attention of the NFL and other sports, who have also been reluctant to join in to promote “Childhood Cancer Awareness” month, inspiring them to help! One of the biggest problems, is the general public thinks of childhood cancer, as cute, smiling bald children in St. Jude commercials, that go there and get cured! And while St Jude does an amazing job treating children and doing research, many times, this is not the reality. Most people are unaware, that childhood cancer is the No. 1 disease killer of children, that childhood cancer research is grossly under funded, that it’s called rare, yet 1 in 285 children in the US will get cancer before age 20 and that there is a huge need for less toxic treatments! Most of the chemo drugs used on children are more than 20 years old and were made for adults. Even if a child survives cancer, many times they suffer life long problems or shortened lives because of the treatment. A lot of the awareness and research funding, is raised by hundreds of childhood cancer organizations, like St Baldricks, Alex’s Lemonade Stand, and Cookies for Kids Cancer, shaving heads, selling lemonade and cookies! They do an awesome job, but they need help!

ToyotaNewHamp_edited-1Wouldn’t it be great if all car manufacturers (Ford, Toyota, Chevy) involved with September racing, stepped up and furnished a pace car or with a big gold ribbon? Toyota stepped up in 2015 for two September races to promote childhood cancer awareness month!  Richmond International Raceway had a gold finish line and gold ribbons on the walls in addition to a big pre-race ceremony featuring childhood cancer kids leading the crowd in the Pledge of Allegiance. We would like to see other tracks where September races are held could even promote awareness by using the gold theme.

September 1, 2013 Atlanta 500 Race

September 1, 2013 Atlanta 500 Race

The last few years, Chevy and the American Cancer Society have teamed up, to run a pink pace car for breast cancer.  The childhood cancer community has no problem with a pink pace car and does support breast cancer awareness month, but just not in September. Gold is for September and Pink is for October!


WoOSchedule_edited-1NASCAR, NHRA and World of Outlaw teams, their drivers and sponsors raise awareness about many great “causes,” like autism, diabetes, COPD and breast cancer. What greater tragedy and cause, than children dying from cancer and very little being done NHRASchedule_edited-1about it? Everyone has the power to make a difference in our world, some use their words, some use their talents and some use their resources. We need Gold in all September races in  2015!

How can you help? Share this post with all your friends. join our Motorsports Go Gold Facebook page and stay informed on our progress.  Since NASCAR is the largest racing series, consider writing to your favorite owners, drivers, sponsors, and tracks and let them know how you feel. DO NOT WAIT UNTIL SEPTEMBER. START NOW! 

Author: Greg Puryear

Join us on Facebook and help us achieve our mission for childhood cancer awareness.

FAcebookClick_edited-1Like Motorsports Go Gold Facebook page


Posted in Cancer, Childhood Cancer, NASCAR, NHRA, Pediatric Cancer, Rare Disease, Sprint Cup, World of Outlaws | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 8 Comments

Texas Proud!

TexasProud_edited-1Annette Leslie, Executive Director of the Carson Leslie Foundation and a Four Square Clobbers Cancer blogger, has served on The Cancer Prevention and Research Institute of Screen Shot 2015-03-25 at 11.51.32 AMTexas (CPRIT) Childhood Cancer Advisory Council since 2010 and couldn’t be more Texas Proud!

Annette explained to 4-Square, “CPRIT has deeply listened to the pleas of our Childhood Cancer Advisory Council by moving to action and funding over $17,988,088 specifically for childhood cancer research.

This investment is a whopping 31% of the funds during this investment cycle that are directed toward childhood cancer research. And this is in addition to the $3,200,000 called, The Carson Leslie Research Grants for Pediatric Brain cancer that are now a year into their 3 year study.

Testof Morality_edited-1Leslie addressed CPRIT’s Oversight Committee recently stating, “Our committee is so grateful CPRIT has heeded our pleas and has moved to action to make childhood cancer a priority.  She challenged the Oversight committee to think about it this way,“After CPRIT has carefully invested the 3 billion they’re charged with and the books are closed, CPRIT will have a legacy; I hope that lAnnetteLeslieegacy will be the change for childhood cancer patients. not only in Texas but across our whole planet.”

Bill Rice, Chairman of CPRIT’s Oversight committee recently stated, “CPRIT’s grant support is intended to vastly accelerate progress for prevention and research of rare and hard-to-treat cancers, including pediatric and adolescent cancers. We hope the awards will help provide the impetus for Texas to become a global leader in childhood cancer research.”

Annette couldn’t be more Texas proud and humbly honored to be smack dab in the middle of directing millions and millons towards childhood cancer research.


If we had nine more states like Texas, we would match the entire amount that the National Cancer Institute is spending on Childhood Cancer research today!

Author: Joe Baber


Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease | Tagged , , , , , , , , , , , | Leave a comment

#MoreThan4 NCI Email Exchange

EmailExchange_edited-1The National Cancer Institute recently sent a response to an email sent to them containing a selfie and a #MoreThan4 flyer. You may have received one. Below is the NCI email and our response.

Thank you for taking the time to reach out to us. We know far too many children suffer from cancer and we are fighting this terrible disease alongside you.

We also recognize that children are not just small adults and children with cancer need new approaches and tailored treatments that allow them to live long and healthy lives. In addition to our efforts to understand this disease so that we may better prevent and treat all cancers, NCI has a number of research initiatives specifically for childhood cancer. To learn more, please visit http://www.cancer.gov/researchandfunding/areas/childhood and follow us on Twitter.

Thank you again for your passion and commitment. We never lose sight of the patients we serve and your picture is a powerful reminder that there is still much work to be done.

Kelley Landynci-logo-english.gif
Office of Advocacy Relations
National Cancer Institute
31 Center Drive, Suite 10A28
Bethesda, MD 20892
(301) 594-3194 | NCIadvocacy@nih.gov

Dear Ms. Landy,

Thank you for your response to our email where we expressed our displeasure with the NCI only devoting 4% to childhood cancer research.

First, we want to let you know that we are very appreciative of all of the efforts made daily of the hardworking men and women of the National Cancer Institute in the fight against all cancers.

Regarding childhood cancer:

We applaud the developments that are being generated under the TARGET program.

We support, and very much appreciate the great work that the Children’s Oncology Group does and we look forward to the benefits to be gained from the Pediatric MATCH program.

With nearly half of a million-childhood cancer survivors alive, and most suffering from late affects of their treatments, our community surely welcomes and supports the Childhood Cancer Survivor Study (CCSS).

Immunotherapy work that you are doing offers tremendous opportunities for our children! We are extremely excited and fully support this area. We appreciate the hard work your researchers are doing to get effective results as quickly as possible.

We want to see all the above programs operate at FULL potential. For years, childhood cancer has been the unintentional victim of budgets developed using such factors as best scientific merit, potential impact, and likelihood of success. What we are saying is this: With all the potential that has been unlocked in genomics, and the vast area of knowledge that has been obtained in the last few years, you are not applying enough financial resources to the above areas that will hasten impactful successes that will generate major increases in life years for children affected by cancer.

In short, we have not been satisfied with the 4% in the past several years when NCI used the same budget methodology as outlined above. We are not going to be satisfied in the future unless NCI either changes its priorities, or changes the way they determine how to finance their “best science.” Once that is done, we are certain that the result will be more than the 4% we have seen in the past.

4%20X30Sign_edited-1We look forward to the day we see change.  We look forward to real progress. We also look forward to a day where the increasing number of survivors will not have to fear living only to 35 or 40 years of age, but can look forward to living a full life rather than an abbreviated one because we did not invest properly in the opportunities that have been uncovered in the last few years since we mapped the human genome.

We respectfully remain unsatisfied,





Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , | 4 Comments

Father, Daughter, Date Night

FatherDaughter_edited-1Bella_RobThe 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 would be a great opportunity to make some memories with my little princess. On the way I asked her to choose what she wanted for dinner and that we were in a hurry so it couldn’t be somewhere that takes too long. She choose Dairy Queen for some unknown reason? Ya right, she couldn’t wait until after she ate her burger for her ice cream. Then I remembered since it was a date, I shouldn’t be scolding her about eating her ice cream first. Shortly after getting back in the car she asked “how did Caleb die?”

Bella_Caleb copyYou see, Bella doesn’t remember her only brother. Caleb was diagnosed with a rare form of Leukemia that sadly took him away just after his 4th birthday when Bella was only 9 months old. After the question sunk in, I asked her why she wanted to know how Caleb died. She said “because he was my brudder”. Touche’ I thought. Then I asked what she wanted to know? She knows he died of Leukemia. She said “what happened to him to make him die?” I asked do you mean what happened inside of his body? She exclaimed “Yes.”

Against my better judgement, and after probing with a few anatomy and physiology questions to see at what level I would be communicating, I reluctantly explained. “Caleb had Leukemia which is a blood cancer”. Bella said, “I know, his bones make his blood and his bones were making blood that was making him sick.” Then I explained “blood carries all the food and energy to all the cells in your body and that when your blood is sick it doesn’t do that.” “What happened was the blood wasn’t supplying the necessary stuff to keep the organs in his body going, so what happened was his system began to shut down and organs started failing and stopped working.” Bella wanted more answers “then what happened daddy?” I explained, “he was sleeping and breathing very shallow” and I demonstrated how he was just barely puffing with his breath, “and he just stopped Bellabreathing and was gone to heaven.” She said “that’s very sad and I wish I was older so I could remember my big brudder.”

I don’t share these personal thoughts and moments of my family to make you sad. Its just real. Childhood cancer has devastated my family but it did not win. We continue to fight this beast and someday hopefully in my lifetime, if not, certainly in my daughter’s lifetime, we will make a difference and bring better life saving treatments to families like ours. We do this in hope that future families will not have to have a conversation like this with their 7 year-old child. We had an amazing night at the circus with a keepsake photograph of a real life mermaid that was wearing a fake tail, ice cream and a story about big brudder Caleb.

Author: Rob Whan

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