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Welcome to Four Square Clobbers Cancer!

Four-Square Clobbers Cancer is a conversational blog that is dedicated to improving the outcomes of children, adolescents, and young adults who are being treated or have been treated for cancer. The goal is to inform, 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.”

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.

Looking for ways to advocate to improve future outcomes of children fighting cancer? THIS is the most important job we have before us today. Both survivor and bereaved parents worked the House and Senate for over four years to get five very effective, low cost measures passed into law. All five passed in the House and were included in the Senate’s year-end, 2024 package. Only one of the five (Gabriella Miller Kids First Act passed. The rest were taken out and not considered. It’s urgent that we pass the remaining measures as soon as possible. If you have a few minutes, You Can Help!

Hope for Conor_edited-1 Nineteen years ago when Conor, my grandson, was diagnosed, at 15 months old, with High Risk Neuroblastoma, a challenging and difficult to cure #ChildhoodCancer. Back then, it had a 30% survival rate. Every night after work, I would get on my home computer trying to find information. What I found was dismal, even terrifying. After a week, I found a story of a 6 year old boy who was diagnosed at 1 yr. old. He gave me the strength of HOPE that I needed to watch Conor take treatments, chemotherapy, radiation, surgery, scans and more. I now have a chance to give HOPE to any parent or grandparent who needs it. You’ll be able to tell Conor is doing great today, so here’s a dose of HOPE. Maybe it will stick with you on your cancer journey with your child. I would love for this to help you as much as the HOPE a little 6 year old boy gave me years ago. Check It Out

“Eleven oncology drugs, maybe 14, are currently in shortage. Four of these — cisplatin, carboplatin, methotrexate and fludarabine — are commonly used to treat cancer in adults and children,” “Patients worry about whether they’ll receive their next treatment, or if switching to another treatment will shorten their lives,” ASCO Chief Medical Officer Julie R. Gralow, MD The FDA is investigating the importation of some critically short drugs from China. Click here for the latest updates

NotSame

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

If 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.

Dear Editor…

Bereaved parents, Gavin and Wendy Lindberg from the EVAN Foundation, recently wrote a very moving letter to the editor of the New York Times. Their letter touched the hearts of the parents and grandparents in the childhood cancer community. Letters to the editors of hometown newspapers get the attention of their locally elected officials and they are the ones who we need to get things done.

“As bereaved parents of a child lost to cancer, we join thousands of other pediatric cancer families in calling on the incoming Congress and administration to enact the three childhood cancer bills that fell victim to year-end government funding politics (one of the four proposed bills, for research funding, was approved). If there is one issue that should unite all Americans, it is combating the leading cause of death by disease in children. A show of bipartisan support for brave young kids fighting for their lives would be a refreshing way for our leaders to begin the New Year. It would be an act of great consequence and symbolism, and it should be done without delay. Children battling cancer do not have time to waste.”

Please consider writing a letter to the editor of your local newspaper.

Here’s a sample letter. Except for your personal story (Shown in Red), cut and paste all of it . The most important thing you can do is write a letter and email it to your local newspaper. Don’t have a local newspaper? Consider sending it to an adjoining town’s paper, or a radio or TV station that services your area. Speak up for kids!

Dear Editor,

In the process of cutting the “pork” and saving time, important childhood cancer bills were cut by Congress in the last day of their legislative year. The clock ran out. One bill, The Gabriella Miller Kids First Research Act 2.0, did make it through at a reduced rate in the very last minute,

Tell Your Story Here I care about this issue because my child Jacob had cancer when he was 10. He was a sweet kid and before being diagnosed he wanted to be a rock star or NBA player. He didn’t have a chance. Had he lived, the cancer medicines would have left him cognitively impaired and never able to live independently. My family will forever be affected by his death at such a young age.

The three important bills, each crafted to NOT require Federal Funding, all landed on the cutting room floor. Now we will have to start all over. What torments all of us the most is that the children who would have benefitted from these bills have been delayed once again.

The Give Kids A Chance Act would help develop new therapies requiring testing of combinations of drugs. Now, the FDA only requires one drug at a time for testing in kids while adults can get combinations and this has shown a lot of success.
Creating Hope Act Reauthorization (PRV Vouchers) Today, the program has expired for the first time in 12 years. Now, there are no incentives for companies to develop drugs expressly for kids with cancer and other life threatening illnesses.
Accelerating Kids’ Access to Care Act allows kids on Medicaid or CHIP to cross state lines to obtain life saving care not available in their home state. Every child should be able to get the care they need regardless of economic status!

I join thousands of other pediatric cancer families in calling on the incoming Congress and administration to enact the three childhood cancer bills that fell victim to year-end government funding politics. This should be done without delay. Like my son Jacob, children battling cancer do not have time to waste. I ask other parents who feel as I do to call and write their Representative and Senators to help us get this done quickly.

Sincerely,

Your Name, City and State

A Gift of HOPE

Hope for Conor_edited-1

Nineteen years ago when Conor, my grandson, was diagnosed, at 15 months old, with High Risk Neuroblastoma, a challenging and difficult to cure #ChildhoodCancer. Back then, it had a 30% survival rate. Every night after work, I would get on my home computer trying to find information. What I found was dismal, even terrifying. After a few weeks, I found a story of a 5 year old boy who was diagnosed at 1 yr. old. He gave me the strength of HOPE that I needed to watch Conor take treatments, chemotherapy, radiation, surgery, scans and more. I now have a chance to give HOPE to any parent or grandparent who needs it. You’ll be able to tell Conor is doing great today, so here’s a dose of HOPE. Maybe it will stick with you on your cancer journey with your child. I would love for this to help you as much as the HOPE a little 5 year old boy gave me years ago. Check it out:

Author: Joe Baber

Really? It’s “rare?”

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, are rare and very valuable. Examples of rare and also more contemporary items range from a penny such as a 1943 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. Often when complex problems are given the label “rare,” it’s because people decided that undertaking exhaustive efforts or expenses are not warranted to correct a problem that does not happen frequently. “The cost of the effort in correcting the obscure, takes time and resources away from the needs of the masses which are obvious.”

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 cancer does not happen to the majority of the adult population, it’s just as inappropriate to label that “rare.”

Childhood cancer can’t be “rare” when it strikes more than 400,000 worldwide every year. How can it be considered “rare” when, in less time that 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 what we spend to find a cure even more “rare.” Maybe, that’s why parents and advocates are always asking for more. Because for years, NCI only spent 4% of their research budget on childhood cancers, advocates complained to the NCI with shouts of, “More Than 4!” Today it’s about 8% and that’s progress, but most advocates will continue to say it’s still not enough. Will we hear shouts of “More than 8” in the future? I’m willing to bet on it.

Author: Joe Baber

updated 8/1/2025

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 watched 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 several 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.

To 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.

Joe Baber, a friend of Jace

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…

Almost 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…

Adam 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