Four-Square Clobbers Cancer

Mad as Hell…maybe

Posted on April 3, 2014 by Team Captain

I certainly don’t want to scare you, the blog reader, away– but when provoked by someone or something like the American Cancer Society (ACS), I become one of these ladies. Why would I paint myself in this light, on “the internet?” For better or worse, it is very necessary for proper context…

Just think red hair, green eyes (when not inferno red), and a face full of freckles—then you’ve got yours truly.

Let’s go back to 2008: As my mom was going through the torturous process of wig shopping while waiting to start chemo , we kept hearing about how the ACS has a wig voucher program, and that we should check it out. The call between the ACS and my very sick mom with inoperable cancer was going on and on; I actually left the room to grab a snack. In the end, to approve her for the voucher, they (ACS) wanted her (my mom) to send financial records showing the amount of funds in a money market account, consisting of life insurance money from when my dad passed away. I couldn’t believe it, probing of detailed financials for a stinkin’ wig voucher! I couldn’t make this crap up. I was livid, I was disgusted. I told her “no way, you are not to call them or give them anything, we are buying your wig.”

ACS was officially dead to me from that point forward. I wrote my mom’s obituary, designating any memorial funds to St. Jude—not the ACS. I have told many people to not give money to the ACS, this is all predating my joining the childhood cancer community. My school district in quasi-rural Pennsylvania breaks records in the Relay for Life, this will make some of you cringe, but they raised over $100,000 last year alone, but rest assured that not a single penny has come from me!

Fast forward to December 2013: I learned about the ACS decision to pull funding for the nationwide summer camp program, including Camp Can Do in my own backyard. ACS, it is as though you rose from the dead; but you would have been better off playing dead, as I was livid, disgusted once again and this time it is worse—you are messing with the kids. And you are making me think about that wig voucher debacle of 2008, thanks for those memories.

March 2014: I have an audience now, so I did a little venting about my arch nemesis the ACS and posted “C is for Cancer Camp,” even jabbing with a little Beyonce. I was working on finding information about the other cancer camps. In my googling, I came across information on the ACS web-sites, still touting the camps as a reason to donate! I was livid and so tracked down the Four Square Team Captain Joe Baber, knowing he has some “buddies” at the ACS now. Basically, it was a “who the [bleep] do I contact about this [bleep]?” kind of situation. I got a name, sent an e-mail, and I not only got a prompt reply but also a request for a call for later in the week!?

How productive, right? But oh, how ironic, someone from the ACS wants to chat with the scorned Daughter-cologist turned childhood cancer advocate. While I know the whole “sugar goes further than vinegar” mantra, how will I bite my scorpion tongue? I had a few days to prep thyself, so I spent the time doing one thing and one thing only: telling myself to play it cool for the kids, to not lash out no matter what, that sugar goes further than vinegar, sugar goes further than vinegars, sugar goes further than vinegar…

This ACS contact was Rebecca Kirch, Director, Quality of Life and Survivorship, Cancer Control. I actually had no idea what to expect from the call. I certainly was not expecting to be on the call for nearly 2 hours, like we were. We both like to talk—but she did some listening too and was taking notes, as was I. We started off by talking about the camps, then a whole host of other issues. We talked about her strategic plan for pediatric cancer and some specific initiatives she is working on for childhood cancer. We talked about the low number of grant requests that the ACS receives for pediatric cancer research. We talked about her passion for palliative care and I mentioned my passion for research into immunotherapies for childhood cancer. We talked about how disliked the ACS is by the childhood cancer community, and the firestorm that exploded on Facebook because of the gold ribbon used on the Childhood Cancer report. I talked about my struggles joining the childhood cancer community, as someone who has not personally dealt with childhood cancer. We got into some personal things. About how I lost my mom from a 9-month battle with a rare cancer and how I have 2 young daughters, “who are healthy and hopefully will stay that way”. Rebecca talked about losing her brother from a 9-month battle with lung cancer and how she has 2 sons “who are healthy and hopefully will stay that way”. It was quickly apparent that this is someone that I could relate to on at least some levels and, maybe just maybe, get along with. Each of us used the word “like-minded” several times, and she commented how people like us wind up finding each other. Pinch, pinch–was this really happening? I thought to myself: she seems so passionate about helping the kids, but she is still ACS—that’s too bad. But look at me, who am I to judge? I have made my living, and still do, as a consultant for the pharmaceutical industry. Rebecca is ACS and I am Pharma; however, despite being part of the “evil empire”, we are both very passionate about helping kids with cancer, that is without question despite what are sure to be stark differences between us. Nonetheless, we both see that there are opportunities to make a difference, if we find ways to work in tandem. It is clear to me that there will need to be some agreeing to disagree. In the spirit of doing just that, I would like to dedicate this part of the song “I Won’t Give Up” by Jason Mraz to the childhood cancer community along with to Rebecca Kirch at the ACS—not the entire ACS just yet, just going to start with Rebecca and move out from there:

‘Cause even the stars they burn
Some even fall to the earth
We’ve got a lot to learn
God knows we’re worth it
No, I won’t give up

I don’t wanna be someone who walks away so easily
I’m here to stay and make the difference that I can make
Our differences they do a lot to teach us how to use
The tools and gifts we got, yeah, we got a lot at stake
And in the end, you’re still my friend at least we did intend
For us to work we didn’t break, we didn’t burn
We had to learn how to bend without the world caving in
I had to learn what I’ve got, and what I’m not, and who I am

I won’t give up on us
Even if the skies get rough
I’m giving you [the kids!!] all my love [and hard work!!]
I’m still looking up, still looking up.

This is the “Grandma shrine”—photos, cabinet, and knick knacks included. This is our “touch with permission only” area of the house

I would finally like to share this picture with anyone who made it to the end. My younger daughter Ella will never meet grandma, as she was born about 17 months after grandma had passed. But she knows grandma per this shrine in our foyer, and was so very excited to give grandma her lily that she made at school the day before my anticipated ACS call. This is and was a special personal moment, but I think my mom and Ella would be OK with me sharing it here to communicate how badly I want peace coupled with productive dialogue. Please, everyone, let’s start moving immediately toward peaceful communication, so that we can all be more productive for the kids. I am still no ACS fan and am in no way defending the past and present, but having the ACS be either dead to you (like they were to me) or a prime target for pure anger (even when justified—trust me, I do get it) will never help one darn bit toward a better FUTURE. I have not lost a child to cancer and appreciate that there is pain out there that is far deeper than mine, but I trust that we as a community can work this whole mess out.

Author: Laurie O.

Related Articles:

C is for Cancer Camp

Dear Caleb

Posted on March 28, 2014 by Team Captain

For my friends who may find themselves on a similar journey:

Reflecting on Caleb’s short life:

This is the most difficult thing that I do. It has been so long now. Memories are not as fresh and the emotion is sometimes just numbing. Grief is physical and there are natural hormonal defenses that protect us. This comes and goes. Sometimes we are in better shape than others. It is just like an athlete’s life where conditioning is everything. We all have our debilitating moments when our defenses are down; like mine today.

Is it sad that I sit here reflecting Caleb’s life and all I can speak about is grief? I think not. Everyone suffers from grief, just different levels of it. I have had people sympathize with me about grief. Believe me, it is awkward when someone says they lost their grandmother to cancer so they understand. I don’t get angry. This is just their way of trying to relate to my grief. The loss of their loved one may be the most extreme grief that they have ever experienced. I know what they are trying to say is, “I’m sorry for your loss. I wish I could ease your pain.”

Caleb taught me more in four short years than I can ever sum up in anything I write or articulate here. Besides humility, grace, family, love, and affection he taught me what is really important in life, Time. We only have a fixed amount of time here and we need to capitalize on making the world a better place rather than getting bogged down with the distractions of daily drama.

What I have learned?

This experience has caused me to see things a little bit different and in that, I see things that may help others. The first thing is that although there are intimidating circumstances that we face. I like to think that through my experience and loss I am an authority on what the loss of a child does to people. I have been there and witnessed many that I love dearly come unglued and all I can do is watch like a fatal roadside accident. If I can add a glimmer of hope to those people, I want them to know that there is no one that has “your experience,” you are the expert in your walk. This should empower you to trust your heart and make a difference. Knowing this, I think of my time and its value. We should overlook the fears and own the situation (there is no way around it, so embrace it). No one else’s time is more valuable than yours. We deserve a seat at the table of whomever we choose that may be relevant to our mission. If you were across the table from Bill Gates or President Obama, don’t you think that they may be able to learn just a little something about humanity from you? I do. Our experiences are humbling and if you are in front of people they will listen.

What do I have to offer other people?

I am now in a unique position that I see as a benefit, but it could also be a hindrance. I am guilty of adding to a dilemma. When Caleb passed, my wife and I had no clue what to do. We thought it was a good idea to start a legacy foundation to honor our son and help other families. I wish we had never done this. I wish there was a go-to organization, one that is all inclusive, rather than a member organization or a part time venture. If there had been such an organization leader when Caleb passed away, I would have subscribed to that entity to educate and guide me. I could find no such organization and instead, I was forced to figure it out and take on the world myself. Today, parents may be considering doing the same thing we did with a legacy foundation. I am here to say to them, wait a minute, take a breath, slow down. You may not need to do that. There are foundations just like mine that need other parents to get involved. Like us, many organizations need other parents’ help. Many organizations offer you an opportunity to shape their programs with your knowledge and blend it with what is important to them. We have legacy projects for other families within our own foundation and I challenge other organizations to offer the same kind of value. We are ahead of the curve with our experience and I hate to see future families have to struggle for years to figure out what we already know. In Caleb’s honor, I welcome them to join the fight in memory of their own child and stand with us.

What benefits can this community share with all the other legacy foundations? Simply put, strength. If we collaborate and consolidate our resources, we can overcome anything. Keep in mind the urgency of the situation. Children are dying everyday. People cry when they see malnourished babies in Africa and beaten dogs in cages? There is no reason why we can’t get the same attention and the pull of heartstrings like they do?

Author: Rob Whan

Checkout the new website http://www.calebscrusade.org/

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged Caleb's Crusade, Leukemia, Rob Whan | 6 Comments

C is for Cancer Camp

Posted on March 11, 2014 by Team Captain

Laurie’s mom and newborn daughter, October 2007 – say cheese!

“I’m not sure if it is possible, but if I can send you a “signal” after I go, then I promise that I will.” by Laurie’s mom, August 6 2009, 2 days before her untimely passing from a rare and aggressive uterine cancer/sarcoma with features normally seen only in pediatric sarcomas; her bone marrow was packed with cancer cells, but her mind was free and clear.

I’m going to get right to it, for once. Did you know that the American Cancer Society had been supporting a nationwide summer childhood cancer camp program, consisting of about 25 camps, for decades? Did you know that they are no longer funding these camps for 2014 or beyond, as announced in 2013? They say that the reason was to redirect all funding to research, but I have not seen the words “pediatric” or “childhood” specified. Regardless, do you think it is appropriate and rationale to say this?: Hey kids with cancer and your brothers and sisters, no more camps for you until we find cures for all things cancer, so you are just going to have to wait and sit home while healthy kids enjoy camp on your behalf. One of these said camps is in my area. Appropriately named Camp Can Do, it is attended by children from a wide area in eastern/central Pennsylvania: from Philadelphia to Lehigh Valley to Hershey and now they are fighting for their lives.

Let me just say this, I am very, very disappointed that the American Cancer Society has decided that these camps can no longer be funded. What they may not realize is the camp program was the one area the ACS shined in showing they had compassion for kids with cancer. I assume the children will see a huge increase in the amount of research the American Cancer Society devotes to childhood cancers. Well…

Let’s get on with survivin’. Here’s the poignant words of Miss Beyoncé and her gals from Destiny Child, with some slight adaptations:

You know I’m not gon diss the ACS on the internet
Cause my mama taught me better than that

I’m a survivor (What?)
I’m not gon give up (What?)
I’m not gon stop (What?)
I’m gon work harder (What?)
Can Do’s Director is a survivor (What?)
Can Do’s gonna make it (What?)
Can Do will survive (What?)
Keep on survivin’

So how did I wind up finding out about this camp problem, considering that I have had no direct personal experience with childhood cancer? Well, it is a funny little ironic story. I came into this community because of one reason—I wanted to do my part to raise money to support RESEARCH funding, knowing all too well that treatment advances for the kids are lagging behind those from adults. Simple mantra: Kids First in all ways, cancer research no exception–PERIOD! I appreciate the importance of CARE-focused organizations, but my mission pertained to better research. But my well-intentioned efforts to start a new, fun local fundraiser have been in slow motion, for no lack of effort on my part. Just lots of totally unnecessary barriers, which I won’t go into here (see song lyrics above, for the time being).

Anyhow, during the holiday period of November-December 2013, I was in deep meditative-type thought about what my path should be moving forward, to maximize my contribution to the childhood cancer community. I hardly talked about it at all, to anyone, was just thinking, thinking, and thinking to myself. And in my head, I had a very short conversation with my mom, granted it was one-sided but here is what I said, “Ma, if you can see things clearer than me and can send me that “signal” that you promised, please point me in the right direction as I cannot see the forest through the trees right now.”

A few days later I went Christmas shopping at a local craft show near my house, something I have never done even though it is a long-running annual event. There, I windup chatting with a former pediatric cancer nurse who was volunteering at the event, whom I met very briefly in September 2013. She remembered me and knew that I was interested in raising funds for childhood cancer research, per our prior interaction, but hesitantly says something along the lines of this: I am not trying to sway you from your mission as I know you are interested in raising research funding, but did you hear about the summer camp program that lost its funding from the American Cancer Society just last year?

“Uh No”, I responded, but I wanted to know more as this is the first I was hearing about it. She passed along the names of some local camps that were affected by this “business decision” (again, go back and read song lyrics above). I did not go home and look up the camps right away, as I was still pondering the research funding problems/solutions and was being swallowed up by the craziness of the holiday season. But when the holiday had passed, I sat down at my computer and found the article that I linked earlier (http://www.pottsmerc.com/article/MP/20130504/NEWS/130509647). Here’s how it started, in case the link isn’t working for ya:

“Camp Can Do specializes in giving kids with cancer a chance at the summer camp experience, and a growing number of people are using their can-do attitudes to save it. For former camper Tom Prader, raising money for another summer of Camp Can Do means saving a camp that saved his life. He started at camp in 1984, right after his second relapse, and he was not excited about going. “I was angry and I thought that I was by myself,” Prader said. But during his week away, he changed for the better. Prader said his mother still talks about how he changed during that week at camp. During his 12 years of treatment, he said, it was people connected to Camp Can Do that supported him. Because of his experience as a camper, he knows what camp means to kids who attend. “I couldn’t live with myself if that opportunity, if that need, wasn’t filled for other kids,” he said.”

Once I read up to this part, there was no need per se to read any further. I was so IN, knowing instantly that I had finally received my long-awaited SIGNAL (!!) that I so desperately needed more than ever; and if my mom really had nothing to do with this, we will just pretend like she did.

Keep in mind that the folks leading this effort to save the camp, who have been breaking their backs to secure enough funding over the past year so that the camp can take place in 2014 and beyond, are childhood cancer survivors. It angers me that they are left to pick up the pieces—they have been through enough in their lives and should not have been thrown into this situation—and the least I can do is help them. So I have something unique and fun up my sleeve, and I’ll be sharing more in a later post…

I still plan to get back into the research funding focus, once the camp gets squared away. For right now, however, my priority is Camp Can Do. I Can Do something.

My understanding is that up to 25 camps were affected, and I do not know the fate of the rest of them. If you have information to share, please contact me directly.

I started with a quote and am going to end with one. But these are my words, written words to Tom Prader—the same Tom Prader who is a childhood cancer survivor who is fighting to save Camp Can Do:

“If you think like a Muppet, good things come. 🙂 The Muppets would never let camp die!”

This gal is on quite the Muppet-like mission, so gotta run but more later…

Author: Laurie O.

Editor’s Note: Want to help Camp Can DO?

While it costs about $1,000 to sponsor a single camper, the camp experience is free of charge to the families of children with cancer or survivors or siblings.

Daniel Boone Optimist Club (Based in PA), a member of Optimist International, has been working since January 2014 to raise funding for Camp Can Do 2014 and beyond.

The Daniel Boone Optimists have pledged a $5,000 donation from their club (and this donation is being matched, for a contribution totaling at least $10,000). They are accepting individual donations of ANY amount from anyone who would like to help. The total operating costs for the 3-week camp, which is an all-volunteer effort and includes a mix of children in active treatment, children in remission (or otherwise in a break of treatment), and siblings, is in the range of $160,000-180,000.

100% of your donation will be directed to Camp Can Do. Optimist International Foundation is a 501c3 non-profit entity, making your donation eligible for tax-deductibility.

Checks need to be made payable to “Optimist International Foundation”
IMPORTANT: the memo line must state “Childhood Cancer Support”, to ensure that 100% of your donation is directed to Camp Can Do
Mail checks to : Optimist International Foundation c/o Daniel Boone Optimist Club PO Box 98, Douglassville PA 19518
Any questions whatsoever can be directed to Laurie Orloski, who is a blogger here, a member of Daniel Boone Optimist Club, and can be reached at laurie.orloski@gmail.com or by phone at 610.385.1689

Click here for a copy the the latest brochure>> CanDoBrochureASide1

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged American Cancer Society, Camp Can Do, Hershey, Laurie Orloski, LeHigh, Philadelphia | 4 Comments

Page A29

Posted on March 10, 2014 by Team Captain

Dear Editor

I would like to direct you to Page A29 of your Sunday, March 9, 2014 edition. This page is the obituary page. This morning my wife shared with me that there was a nice obituary for a friend’s son, who they just lost to cancer. When she finally finished thrashing though the paper to get all the coupons out, she tossed it on my lap to take a look. When I glanced down, the front page was staring back at me with a sea of pink for our local Susan G. Komen, Race for the Cure.

As I looked eagerly though the News-Press I couldn’t help but notice the amount of press and exposure that the Race for the Cure had in our community. With pictures of participants, the entire front page and multiple pages thereafter that were larger than life. The front section of the paper could have been a supplementary insert from the Susan G. Komen Foundation. I applaud the community in standing together for a united cause and honoring all the survivors that graced the pictures that I speak of. Then I stop while my eyes well up and wonder why? I wonder why our community does not give the same support to other similar causes. I know what happened Saturday morning and the money raised is phenomenal and very much newsworthy material. But, it still brings me back to the fact that this little boy, struggled for 2 years with Leukemia and a very small percentage of your readers know about. I would like to share with you what was hidden on Page A29:

In Loving Memory of

Chase Noah Johnson

September 29, 2005 ~ March 2, 2014

Chase Noah Johnson, 8 years old, earned his angel wings on Sunday, March 2, 2014. Chase battled leukemia for two long years with unbelievable bravery. Through all of his struggles you would be hard pressed to find him without a smile on his face and his dimples glowing. He would look for the good in a hard situation and always reminded us to do the same. He loved unconditionally with his whole heart and didn’t expect anything in return. Chase was kind and considerate and spoke from his heart with the utmost sincerity. He loved to laugh, watch funny movies, play video games, and enjoyed time spent with family and friends.

We have been humbled and blessed by the life lessons that Chase has taught us. He has inspired our family and hundreds of people alike to live for each day. At 8 years old he had the courage, strength, and appreciation for life we can only hope to achieve in our adult lives.

Chase is survived by his father Chris, mother Lisa, sisters Cayli (6) and Chloe (12), grandparents, great grandparents, aunts, and many cousins.

A Celebration of Life service will be held on Sunday March 9, 2014 at First Christian Church, 2061 McGregor Boulevard starting at 2:00 pm.

We ask that in lieu of flowers you make a donation to www.GraceforChase.com and we will donate proceeds to childhood cancer research and the various organizations that have helped us along this journey.

– See more at: http://www.legacy.com/obituaries/news-press/obituary.aspx?n=chase-johnson&pid=170039087#sthash.pLuFPPmK.dpuf

I do acknowledge that there were a number of stories run about Chase and I do not intend to sound ungrateful for that. This is simply an observation of today’s paper. You see? I am a staunch advocate for childhood cancer. And when I say staunch advocate I mean it. I can back it up with multiple trips a year to Washington DC to actively advocate for our kids. Some use this term to define that they support a cause, but in this context I eat, sleep and breathe it. This rarely gets covered and some friends say it’s “newsworthy.” I stand here with Lisa Snyder, Chris Johnson, their 2 daughters, family members and everyone else who had the amazing opportunity to meet a superhero sidekick like Chase. I know how influential Chase’s life is and the legacy that the people around him will fulfill.

If anyone is interested in hearing more about how we can build a legacy for local kids with cancer and build a better future for our families that are yet to be diagnosed I invite you all to reach out. I know first hand of what families like Chase’s have endured and the journey that they are now embarking. Please for Grace for Chase, make a difference and get involved.

Yours in Grief,

Rob Whan

Forever ^Caleb’s^ Dad

Four Square Editor’s Note: Rob Whan lost his son Caleb 11 days after his 4th birthday to a rare form of Leukemia and has been a passionate, highly active and visible childhood cancer advocate ever since. He and his wife formed a foundation in honor of Caleb that assists families who have been affected by childhood cancer.

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged GraceforChase, Leukemia, Rob Whan | 2 Comments

comPASSION

Posted on March 4, 2014 by Team Captain

It was 6 o’clock in the morning and I awoke to the all-too-familiar sound of his cough. What would be revealed that day changed and shaped the aspirations of my whole family. We took my congested 16-month-old brother to our family physician, hoping to leave with a prescription to relieve him of his discomfort, but were instead given paperwork for admittance to Rady Children’s Hospital. The x-rays showed a mass in Conor’s chest. At the age of nine, I could not fully appreciate what this meant. What my mother and step-father learned that dark day, and the significance of which I was not able to grasp for years to come, was the grave news that my baby brother had neuroblastoma. The tumor was lodged precariously along the length of his spinal cord and nearly encircled Conor’s heart.

Conor and me before getting ready for Halloween

Conor and me getting ready for Halloween

It wasn’t until several years later that I began to fully comprehend the profound stress my family experienced through this ordeal. I can still picture my weak brother curled up against the cold metal rods of his hospital crib, staring up at me as he clenched the silky blanket I gave him when he was born. Even though he was facing potentially fatal complications, my brother’s innocent laughter and smile lifted our spirits and gave us all hope in the face of a seemingly hopeless situation. He received chemotherapy over a course of twelve months, in adult doses that are usually lethal to a baby. My brother’s ordeal motivated me to want to help children like him.

Conor loved to pull my hair!

I often questioned what good there could be in a world where an innocent, joy-filled baby could get cancer. Over time, and through the accelerated maturation process I experienced as a result of this crisis, I was able to find my passion at a younger age than most. I knew from age nine that I would work in some capacity in science or medicine, focusing my efforts on pediatric diseases.

Over the past eight years, I’ve experienced a myriad of reactions from my peers, as well as adults, when asked the age-old question, “What do you want to be when you grow up?” Often, the response of “pediatric oncologist” garners a polite smile, masking an underlying suspicion that this answer will likely change 15 times before I check into my dorm room freshman year. Until the summer before my senior year of high school, unless the source of inquiry was intimately familiar with my background, his or her reaction would be reasonable.

This past summer however, I began an internship with the Sanford Burnham Medical Research Institute, in a lab that conducts research on medulloblastoma, the most common malignant pediatric brain tumor. During the summer, I volunteered 30 hours a week and continue working there today. I can only hope that the hours spent learning molecular and cellular biology techniques will contribute in some way to more personalized therapies for children afflicted with these tumors. I have been fortunate enough to be trained in the techniques used by my mentor, a third-year doctoral student. This experience has only served to fuel my passion to work in this field.

I am thrilled to be actively involved in the scientific field and to be taking these first steps to achieve my goal. Today, Conor is a robust, active nine-year-old with no memory of his fragile first years of life and happily ignorant of the role he played in helping me find my passion.

Author: Grace Furnari

Editor’s Note: On December 16, 2017, Grace received her degree in Microbiology. The first step taken on her road to becoming a pediatric oncologist. Today, April 9, 2022 she is a medical student at UCSD School of Medicine studying to be a Pediatric Oncologist.

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged cellular biology, Grace Furnari, internship, medulloblastoma, molecular biology, neuroblastoma, pediatric oncologist, Rady Children's Hospital, Sanford Burnham Medical Research Institute, sibling, tumor | 1 Comment

Thank You, American Cancer Society

Posted on March 3, 2014 by Team Captain

In the past, I have been a huge critic of the American Cancer Society and in September, I wrote a very inflamed blog about all that I felt was wrong with the American Cancer Society’s (ACS) involvement with childhood cancer. I believe in telling it like it is and speaking up for the children who have little or no voice when it comes to cancer. I have never spared any words with NIH, NCI, FDA, ACS, government and others. Fortunately, there are plenty of others in this community that also believe in speaking up for the kids. When it comes to childhood cancer, you don’t have to ask how our members feel, they’ll tell you in a heartbeat.

I had a huge response on that September blog. “Give’m hell, Joe!,” was the theme of many emails and phone calls I received shortly after my furious blog was published. I was very angry when I wrote it. I felt empowered by the response from my fellow childhood cancer advocates’ comments. Shortly afterwards, I attended a conference in Washington, DC on childhood cancer. Right there, in the middle of a huge room in the Capitol Building, filled with other people who were childhood cancer fighters, I saw a young man named David. On closer inspection, I noticed he was wearing an American Cancer Society (ACSCAN) name tag and I immediately wondered why they would let him in the same room with all my fellow childhood cancer fighters. David was like a young Roman gladiator surrounded by lions. I gave David my card and a “too hot to handle” piece of my very inflamed childhood cancer fighting mind. I don’t know how David felt and I didn’t much care, but it sure felt good to get it off my chest.

A few days later, I left D.C. and returned to my quiet little home. It’s great place and when it is quiet and comfortable enough, I begin to do deep thinking. Sometimes, I fall asleep doing so much heavy thinking. I guess for me, at my advanced age, it works that way because when I get busy, I don’t take the time to think too deeply. It’s distracting and I lose sight of my immediate objectives. You could say that I function on instinct, not deep thinking, most of the time.

I thought about my encounter with David and wondered how much I may have advanced the concerns of childhood cancer with the American Cancer Society by acting on my instincts. Back in my old business setting, a huge three story indoor cubicle farm with lots of meeting rooms, that type of behavior would have gotten me exactly nowhere. Rule number one: Recognize the true root of your anger. For me, I was really angry at cancer and what it has done to so many families including my own. I doubt that David or the ACS would want to hurt my family or any others. Rule number two: Determine the best way to funnel your anger to get the needed result. I was mad as hell at cancer and I wanted it wiped away from earth. I can’t do it by myself sitting at a keyboard blogging about it. Rule number three: Take action.

David, gave my information to others within the ACS. This time, I tried a different approach, one that had worked for me in my business career before I retired and got involved with childhood cancer. I sat down and had meaningful dialogs with those who could affect change. Sarah with ACS contacted me and we began a conversation. Later, I was contacted by Rebecca Kirch, Director of Quality of Life & Survivorship for the ACS. She was very receptive and sincere. We met on several occasions and we agreed that the fight against childhood cancer would be much more effective if we worked together. We shared a common goal. There have been plenty of missteps from all sides along the way. I had the opportunity to discuss everything that was important to our community. We shared our visions of what was needed to move forward in partnership. We agreed it would not be easy. Like the business I came from, the American Cancer Society is a large ship and just can’t turn on a dime. It will take time. On the other hand, look at our childhood cancer community. It’s no easy task getting all our sail boats lined up and headed in the right direction. If we are going to help children by helping each other, it will take time. Yes, I realize how urgent it is. Children are dying from cancer. We can’t afford delay, so let’s get started on forging better relationships as quickly as possible.

One, just one of the many, many problem areas we discussed was the data we had used to compare progress. I think members of the community would all agree, we should not be comparing our progress on kids’ cancer in increments of multiple decades. We need more current data, or a “report card” that will measure our progress or lack of progress by site (type). Few other organizations, except possibly St. Jude’s, can excel in gathering data like the American Cancer Society. After months of work, the ACS produced a great report that would give us much better information. This time, it was all together in one, easy to understand, report. We do not have to search through pages and pages of data to find the information we are seeking. By the way, since the report deals with childhood and adolescent cancer, I am really glad to see they included a big gold ribbon on their Facebook post as requested.

Will this report alone change the landscape of the community’s relationship with the ACS? No, but it is a good place to start. I applaud their positive steps in creating a clear and comprehensive report specifically for childhood cancer. The report will be very helpful to all the major organizations, ACS included, that have the ability to make a huge impact. I hope everyone can appreciate the value of the ACS report and all the work that went into it.

If we lash out at the ACS or others and continue to beat them up when they do something good and constructive, we will never form the relationships we need to beat cancer. We can take a lesson from our own kids and like them, find ways we can “play” (work) together. We need to work together. The battle against childhood cancer can benefit by having an organization like the ACS functioning in full partnership with the community. We can’t get partners to the table if they are greeted with sticks and stones. It’s easier to effect change inside a partnership than from the outside.

When someone helps the cause by doing something positive, just a small “thank you” can go a long, long way. We need to beat cancer, not each other.

Author: Joe Baber

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged ACS, American Cancer Society, FDA, Joe Baber, NCI, NIH | 8 Comments

Survivor 2nd Edition

Posted on February 8, 2014 by Team Captain

In our first edition of Survivor, we followed a typical group of 36 kids that were diagnosed on one day with childhood cancer. We used 36 kids because when the first article was written, in the United States, on average 36 were diagnosed each day of the year. Since I wrote the original Survivor article, the number has risen to 46 kids diagnosed per year. We “followed” the group of 36 for 30 years. Along the way, some died, but about 80% survived and some of the survivors would later die in their 30’s, 40’s and 50’s because of something called a late-term side effect. There are slightly more than 500,000 childhood survivors alive in the United States today. Imagine 500,000 survivors of childhood cancer! In the fifties and sixties, the cure rate for just about any type of cancer in children was so terribly low that no one would have ever believed we could have that many survivors over the next fifty years. Isn’t that great progress? Unfortunately, the answer is a hesitant, “Yes.” Hesitant because, while it’s great to have so many people beat childhood cancer, it also brings a lot of questions as to how are we going to take care of nearly half a million people who we now know are virtual ticking time bombs when it comes to their future catastrophic health issues. Yes, catastrophic health issues because the same treatment they received that saved them from cancer may suddenly end or alter their lives due to the long-term effect of the chemicals and radiation their bodies absorbed as children.

A study in the Annals of Internal Medicine found that many primary care doctors feel they’re not prepared to deal with adult survivors of childhood cancer. Most doctors said they felt a little uncomfortable caring for childhood cancer survivors. Most in the study said they preferred to care for childhood cancer survivors in tandem with a doctor at a cancer center. Special thanks needs to be given to the American Cancer Society (ACS). The ACS saw problems with childhood cancer survivors obtaining proper treatment later in life and published a special report in “CA” a journal for clinicians. Using the ACS report, Childhood and Adolescent Cancer Statistics 2014, and other sources this 2nd Edition of Survivor will focus on a discussion of the long-term side effects that childhood cancer survivors will have to overcome with the help of their primary care physicians. It seems when you survive childhood cancer it’s not the end, it’s the beginning of surviving all over again.

Nothing is certain when it comes to late effects, but children who get chemotherapy and/or radiation therapy also have a small, but definitely increased, risk of second cancers later in life. These cancers include bone cancer, leukemia, or other soft tissue tumors. The bone cancers seem to be linked with radiation therapy, while the leukemias are more often seen after treatment with cyclophosphamide and related drugs. Information is provided in the ACS report, but more detailed information for a particular type of cancer can be found on the American Cancer Society website.

Acute Lymphocytic Leukemia (ALL)**: Long-term adverse health effects among children treated for ALL include neurocognitive defects, growth deficiency, and an increased risk of second cancers such as AML or lymphoma. Early forms of Central Nervous System (CNS) prophylaxis (treatment) that combined high doses of radiation and intrathecal chemotherapy resulted in a high risk of neurocognitive defects; less-toxic therapies that avoid the use of radiation have reduced, but not eliminated, these risks. In addition, children treated with cranial radiation therapy (CRT) for ALL in the past had an increased risk of developing CNS and head and neck tumors. High-dose therapeutic radiation is a recognized cause of brain tumors. Children who receive cranial irradiation for ALL or other cancers have an excess risk of brain and CNS tumors. Radiation therapy is now used in only a small fraction of patients with ALL who are at high risk of CNS recurrence. Patients with ALL who are treated with anthracyclines are at risk for late cardiac effects.

Acute Myeloid Leukemia (AML)**: Treatment toxicity and long-term effects for patients with AML are similar to those for patients with ALL; however, AML less often requires treatment or prophylaxis of the CNS, and therefore side effects related to radiation of the brain are not as common. Improvements in survival for patients with AML are associated with the use of higher doses of anthracycline chemotherapy than were used in the past. A follow-up study of 5-year survivors of AML treated from 1970 through 1986 found a relatively low prevalence of cardiac disease; however, there is concern that the prevalence of anthracycline-related cardiac toxicity may increase in more contemporary patient cohorts treated with higher doses.

Hodgkin Lymphoma**: Depending on the treatment received, long-term and late effects of treatment can include pulmonary dysfunction, cardiac disease, thyroid abnormalities, infertility, and second malignant neoplasms. Girls aged 10 years and older and young women treated with radiation to the chest for HL have a high relative and absolute risk of breast cancer. One study estimated a cumulative risk of breast cancer of 10% by age 45 years for women treated with chest irradiation (greater than 40 grays [Gy]) for HL at age 15 years. Current guidelines recommend annual MRI as an adjunct to mammographic screening for women who were treated for HL.

Non Hodgkins Lymphoma**: Depending on the chemo drugs used, fertility (the ability to have children) can be affected. Nerve damage, causing numbness, tingling, or even pain in the hands and feet, can also occur. In rare cases, people may develop leukemia several years later.

Brain Tumors (Ependymoma, Astrocytoma, Medulloblastomia)**: Survival rates vary depending on tumor type, location, and grade. While there has been progress in survival for Central Nervous System (CNS) tumors overall, there has been little progress for some subtypes, such as diffuse intrinsic pontine glioma (DIPG), for which the median survival time after diagnosis remains less than one year. Improvements in survival for many types of CNS malignancies have resulted from advances in neurosurgical techniques, delivery of radiation therapy, supportive care, and use of combination chemotherapy. Nevertheless, children treated for brain tumors have a high risk of long-term morbidity and mortality. Late neurologic complications observed in follow-up studies of 5-year survivors include new onset of seizures, weakness in the arms and legs, blindness, and hearing loss. Children who receive radiation therapy to the hypothalamic-pituitary axis often experience neuroendocrine effects, including growth hormone deficiency, hypothyroidism, and abnormal timing of menarche. Cranial radiation therapy, particularly when used in very young children, can also result in neurocognitive deficits. For this reason, treatment protocols for patients with CNS tumors have been modified so that children aged younger than 3 years usually receive chemotherapy first with delayed and/or reduced radiation. Radiation treatment is associated with an increased risk of subsequent neoplasms in survivors of CNS malignancies, including gliomas and meningiomas. Radiation is not always needed for low-grade tumors.

Neuroblastoma**: – Children who are treated for high-risk disease have the greatest risk of treatment-related complications, including severe sensorineural hearing loss, infertility, cardiac toxicity, and second neoplasms related to high-dose chemotherapy. Overall survival rates for children with neuroblastoma have increased from 54% between 1975 and 1979 to 79% between 2003 and 2009

Wilms Tumor**: Late effects observed among survivors of WT include kyphosis and scoliosis from radiation to the spine, anthracycline-related cardiotoxicity, end-stage renal failure, an increased risk of second malignancies, and infertility and pregnancy complications among girls treated with radiation. The risk of end-stage renal failure is increased among patients treated for bilateral disease and those receiving radiation to the opposite kidney in unilateral disease, as well as those with congenital syndromes and anomalies associated with the WT1 gene region.

Retinoblastoma**: Late effects of retinoblastoma include visual impairment and an increased risk of secondary neoplasms, including bone and soft tissue sarcomas and melanoma.

Osteosarcoma**: Therapy-related late effects can include anthracycline-induced cardiomyopathy, cisplatin-related hearing loss, kidney dysfunction, second malignancies, and infertility, especially in patients receiving alkylating agents. Patients treated for OS may have physical limitations resulting from surgical resection.

Ewing Sarcoma**: ES survivors are at increased risk of developing second cancers, cardiac and pulmonary conditions, infertility, and musculoskeletal problems.

Rhabdomyosarcoma**: Late effects of treatment for RMS vary depending on whether radiation therapy was given and the specific chemotherapy agents received, which have differed over time. Bones and soft tissues that get radiation do not grow very well. Depending on the area getting radiation, it may cause problems such as curvature of the spine, a shortened arm or leg, limited motion of a joint, hardening of the surrounding soft tissue, stiffening of the lungs, poor development of the facial bones, cataracts and poor vision of the involved eye, later problems with sexual function, and other problems. Young children’s brains are especially sensitive to radiation to the head, which can lead to learning problems or other issues, so doctors do their best to avoid this when possible. Second cancers are possible but only affect a small number of RMS survivors, and these are children who most likely would not have survived without these treatments. Treatments for patients with intermediate-risk and high-risk disease continue to be studied in clinical trials in the hopes of achieving better outcomes.

Ovarian Germ Cell Tumors**: The chemotherapy regimens most commonly used for OGC tumors may cause hearing loss and kidney toxicity.

Testicular Germ Cell Tumors**: Survival rates for testicular cancer have improved substantially since the mid-1970s (from 74% to 96% in 2003-2009), and most patients have a good prognosis.

The most important action a childhood cancer survivor can take is to become totally engaged in their own healthcare. They should have a complete and detailed treatment summary or journal of all procedures (radiation, chemotherapy, drugs, etc.) completed during the time they were in cancer treatment. This is something that your cancer care facility should provide for you. The completed journal will be invaluable five, ten, fifteen, or more years down the road. Every primary care physician encountered along life’s path needs to have a copy of the journal and should demonstrate that they are aware of late-term side effects possible with past cancer treatments.

Did you know that there is a free App for Android and Apple phones available just for survivors? Akron Children’s Hospital and Hyundai Hope on Wheels have put childhood cancer survivor resources and tools into your hands. Check it out!

If your child is presently in cancer treatment now, talk to your oncologist or palliative care contact to ensure that you will have a complete record of all treatments.

Author: Joe Baber

** Source: American Cancer Society, Childhood and Adolescent Cancer Statistics, 2014 published in CA: A Cancer Journal for Clinicians, January 31, 2014.

Related Articles:

Survivor, Edition 1

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease | Tagged Acute Lymphocytic Leukemia, Acute Myeloid Leukemia, ALL, American Cancer Society, AML, Astrocytoma, Brain Tumor, cardiac disease, Central Nervous Syatem, chemotherapy, CNS, Cranial radiation therapy, cyclophosphamide, DIPG, Ependymoma, Ewing Sarcoma, Hodgkin Lymphoma, Joe Baber, Medulloblastomia, Neoplasms, neuroblastoma, Non Hodgkins Lymphoma, osteosarcoma, Ovarian Germ Cell Tumors, radiation, Retinoblastoma, rhabdomyosarcoma, Testicular Germ Cell Tumors, Wilms tumor | 7 Comments

Childhood Cancer by the Numbers

Posted on February 2, 2014 by Team Captain

Numbers are wonderful. Numbers are dangerous. Having spent most of my career in management, within the retail sector, I have been conditioned to pay attention to numbers. Numbers can paint a picture. Numbers can be your navigator. They can show at a glance and without prejudice, success or failure. Numbers don’t contain opinions or emotions, just facts. Numbers, like grapes or peaches or tomatoes, are good if fresh and gathered properly, packaged and presented with care. On the other hand, if numbers are stale or gathered without care for accuracy or aren’t processed properly, the navigation they provide will certainly take you in the wrong direction.

Since joining the childhood cancer community, I have paid attention to the numbers that are thrown around everywhere. We’ve all heard the numbers: 80% cure rate for all childhood cancers, 7 children die each day, 36 kids diagnosed daily in the USA, 720 diagnosed daily in the world, 250 kids die every day worldwide, and so on.

To me, the most surprising and irritating numerical unit of measure I have heard in the childhood cancer world happens when very educated people try to measure our successes in treating childhood cancer. They say things like, “In the last three or four decades, we have made tremendous progress in …” In the entire fifty years I spent in retail management, I know for a fact, no one ever used “decade” as a unit of measure to gauge any type of progress. To know where we were headed, our units of measure were: yesterday, week, month, quarter, half, year. Never, “decade!” When you measure the past in decades, you are implying that advancement will also take decades. We don’t have the time to wait that long. Kids are dying!

The best report should be a collection of numbers in black and white, positive, negative, or whatever it is, but factual and clear to the reader so they can make their own conclusions. A good report will be clear enough to have most people come to the same consensus. Having said that, I have to admit, when it comes to childhood cancer, for me there is one element that is always involved. It’s emotion. Pure parental emotion. I can’t help it. I am guilty of mixing my strong parental emotions with everything that involves children. Sometimes the emotions are much stronger than the numbers.

Last September, at the Hyundai Hope on Wheels banquet in Washington, DC., I was seated at a table with Dr. Jennifer Cullen, a board member of the American Childhood Cancer Organization and a cancer epidemiologist who works at the Department of Defense. We had a wonderful conversation. I assumed she was like the other doctors at the dinner, there to show support and to be honored, until I found out that she had lost her daughter Alexandra to medulloblastoma at age five. I will never forget the look in her eyes when she told me. Talk about getting emotional with numbers! This is a mother who lost her daughter and an epidemiologist studying childhood cancer statistics. Can you imagine how that would be?

The American Cancer Society (ACS) (I know I have been a very harsh critic, but please bear with me) recently published a report, “Childhood Cancer Statistics 2014,” in “A Cancer Journal for Clinicians.” I applaud their efforts to clarify the state of childhood cancer today and feel the report will be very helpful. Jennifer Cullen wrote the accompanying article that was introduced with the ACS report. Her commentary is entitled, “Because Statistics Don’t tell the Whole Story: A Call for Comprehensive Care for Children with Cancer.” To me, she brings emotion to the numbers and to the fact filled tables. Regardless of any of the numbers, she makes a strong case in her appeal to improve the care for children with cancer by utilizing better communication skills among the clinicians and utilizing palliative care. She will convince any reader to seek out palliative care for any child with cancer. She speaks with experience and from the heart, just as she did when I first met her. I too am an advocate for palliative care for every child with cancer. It’s not the same as hospice or end of life care. It’s for all children with cancer. It can help in the curing of the child.

I am happy to report the measurement unit, “decade” was not used in the ACS report. Nowhere did I see the offensive statement, “In the last four decades…. Yada, yada, yada.” While I am struggling with comparing all their numbers with my perceptions of what they should be or have been in the past, the twenty-one page report is rather matter-of-fact. I will assume the numbers are correct. One reason numbers seem to vary from one organization to another is because they use different age classes among the organizations. We need to all use the same standardized age groups going forward so the information from one organization is comparable with another. The part I like the most in the ACS report is that it breaks down the five year observed cure rate by specific cancers. That’s important to determine where we are making progress and where we need to place our priorities.

In the ACS report table 3. reflects the five year observed survival rates for the period 1975-1979. As low as these survival rates are, they reflect large improvements over previous years. Survival rates were extremely low before 1975. Here are some examples that St. Jude’s reported in 1962 when they opened their hospital: AL Leukemia was only 4%, Non-Hodgens Lymphoma was only 7%, and both medulloblastoma and neuroblastoma were each only 10% while Ewing Sarcoma was a low 5%. DIPG was less than 1% then as it is today.

Newly reported survival rates for the period 2003-2009 show large improvements over the 1975-1979 period and at the same time, highlight area’s with slower improvement growth.

Reporting numbers in this manner provides better navigation for the future. It gives direction and points out areas of opportunity. To really capitalize on this guidance, we need to continue this type of reporting. Our ability to strengthen our reporting process in the future will affect how and where we set our priorities in treating childhood cancer. We should all be looking forward to the next report in the future. Hopefully, we can have annual reporting so we can compare 2004-2010 with 2003-2009. By reporting in this manner, we are better able to see where we are going. It will be uncomfortable for those who like to use decades because it is easy to see progress but difficult to see current direction.

“Progress in childhood cancer has been dramatic for some sites (types of cancer), but we cannot let that blind us from the fact that progress has been disappointingly slow for other sites, and that cancer remains the second leading cause of death in children,” said Otis W. Brawley, M.D., American Cancer Society chief medical officer. “There is much work to be done to improve outcomes, to reduce side effects associated with cancer and its treatment, and, we hope, to understand more about the molecular events that lead to childhood cancer in order to come up with ways to prevent or detect it early.”

In their report, the American Cancer Society predicts 2014 will see children diagnosed with cancer increasing to 15,720 and deaths of children (aged birth to 19) dropping to 1,960. Numbers are important, no doubt about it, but the most important number to parents will always be the number one. Will cancer occur to one of mine? Will cancer take the one I love?

In order to protect our most important number, we need to gather accurate and timely information, report it properly and pay close attention to all of the numbers and take action where indicated.

Author: Joe Baber

Palliative Care Misunderstood

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged ACS, acute lymphoblastic leukemia, Acute Myeloid Leukemia, American Cancer Society, Astrocytoma, bone tumor, Ependymoma, hepatic tumor, Hodgkin, Joe Baber, lymphoma, medulloblastoma, neuroblastoma, Non-Hodgkin, observed survival, osteosarcoma, Ovarian germ cell, reticuloendothelial neoplasms, Retinoblastoma, rhabdomyosarcoma, Testicular germ cell, Wilms tumor | 2 Comments

Answer in the Sky

Posted on January 28, 2014 by Team Captain

So first off, what is up with this Polar Vortex thing? As if the first stint wasn’t bad enough, it came back!! I often think that I am better suited for Southern California than Pennsylvania, but there is one thing that I do love about winter in the Northeast, and that is running in the snow—assuming it is not practically zero degrees, like it has been. Yes, I am one of those nuts running on roads that are not even fit for cars or even sleds for that matter. I know that some people find such antics really annoying. I just can’t help myself though, running in the snow is very Zen-like for a hyper person like me. I had no intention on running (or blog writing) today, but just couldn’t resist and it spurred this blog post.

My wipeout in the ice!! Nobody saw that, did you?! Remember–bridges are icier than roads, I kind of forgot about that little fact.

Light snow and a temp of about 20 degrees, which is better than zero, and the verdict that it looks “not too slippery out there”—and the snow run was on! So off I went, had only 1 wipe out (on some snow-covered ice, but no damage except for a dirty glove), and now I write as I literally thaw out. I wanted to share a song, which I do at the tail end, but a little background first.

People ask me a lot, why do you run? It is hard to explain so I usually give them some sort of generic answer. I have been running since the 7^th grade, except during college when I just couldn’t get into it. Today, as an almost-40 year old with a really busy career, 2 young kids, and intense desire to help kids with cancer, there are days when I am really tired, when I don’t feel like “hitting the pavement” whatsoever. But on those days, all I need to do is think about my parents, how they are gone, how I am still here and fortunate to have good health, and how I have no excuse to not go outside and get some fresh air while I still can. I come from a family of Notre Dame Football fans, and so know this phrase well: “Play Like a Champion Today”. For me, the “today” is the poignant part; it does not say yesterday or tomorrow. “Play” may mean work or run or try to help somebody. “Champion” just means someone giving it all that they have in the tank at a given moment.

While I am on the topic of myself (sorry, I actually hate talking about myself but it is relevant), there are two aspects of my personality that I always thought were a major detriment and would always hold me back, but they are turning out to be good things! These traits are: (1) painfully shy and (2) profoundly sensitive. My shyness has improved with time, yet is still a part of me. In elementary school, I was probably a 9 out of 10 on a 10-point scale, and that gradually ticked down to a current rating of I’d say 5. To compensate for my innate shyness, I find that I wind up talking A LOT, way too much. The combination of shyness and an over-talker makes me, what I would call, quirky. I would guess that this quirkiness is either annoying or endearing, depending on one’s own mood and perspective, but it is what it is. Anyhow, when I don’t have an ear to talk to, I channel that energy into writing. And that means that I can write a lot, which is perfect for a professional oncology writer/childhood cancer blogger. So thank you shyness genes, you serve me well by making me prolific. As for being profoundly sensitive, that has not really changed over time, but I express it very differently. Being sensitive used to make me cry a lot as a kid, but I don’t cry very often anymore. My dad would always tell me, over and over again, “the world is a tough place and you need to toughen up”. All that would do is make me cry even more, as I would get so frustrated with myself, that I was not tough. When my mom was in her final days and after she passed away nearly 5 years ago, I cried so much that I would actually wake up with tears. I had no idea one could cry in their sleep. But then the tears suddenly stopped one day, and I just figured that I was dehydrated or that I clogged my tear ducts. But tears like that never really came back, even though I miss my parents now more than ever. Now I see the ceasing of the tears as just part of the healing, part of the toughening up (at least on the exterior!) that seemed like it would never happen. Now I can talk about my mom’s cancer ordeal and other emotional topics like childhood cancer without shedding a tear, which makes me a better, more effective advocate I think. Don’t let the tear-free eyes fool you though, I am no less sensitive or compassionate, especially about children battling cancer. I just cry in a different way.

Finally, after all that babble, I’ll get to the point of this blog post. Because of my aforementioned sensitivity, I am definitely touched and inspired by songs, probably more than the non-sensitive person. On my run today, one of my favorite songs came on, which is Answer in the Sky by Elton John off the very awesome Peachtree Road album. I don’t know if it was a radio song or not, but I am going to guess that some of you may have never heard it. It is one of those songs that I feel was kind of written just for me, and it strikes a nerve with me in a very good way. The words are very relevant to my journey into the childhood cancer community. They remind me how important it is to keep fighting for what I think is right, no matter what other people think or say. When it comes to kids with cancer, I must stay on course because I believe with everything I’ve got that better outcomes are achievable. In times of frustration, and there have been many so far, I can hear my mom say something along the lines of “Forget about yourself. You need to stick with this, you need to help those kids or you will regret it”. Then, a little dose of Answer in the Sky, and I am back to my quirky, spunky self. Anyhow, I encourage you to listen to this song or read these lyrics, think about them, and read them again when you need it. Stay safe everyone, and best wishes for the new year-

Author: Laurie O.

Lyrics for “Answer in the Sky” http://www.metrolyrics.com/answer-in-the-sky-lyrics-elton-john.html

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged Laurie Orloski, Notre Dame Football | Leave a comment

Palliative Care

Posted on January 15, 2014 by Team Captain

About six years ago, the National Institutes of Health (NIH) announced it’s support for palliative care (pronounced pal-lee-uh-tiv) for adults and children suffering from serious illness. Today, 70% of Americans still do not know what it is. To be honest, for a long, long time, I always associated palliative care with death, dying and hospice.

Many of the services offered under palliative care would have been great to have had in the case of my grandson who was 15 months old when he was diagnosed with High Risk Neuroblastoma and has been a survivor going on eight years. I know now that my daughter and her entire family could have benefitted greatly from palliative care during those years of treatment and Conor becoming a survivor. Unfortunately, ten years ago, there was very little offered to help families like my daughter’s (mother, father, older sister, one on the way) in similar situations with a small child with cancer.

Sometime back, I started doing a little investigating on today’s version of pediatric palliative care. “The goal of palliative care is to relieve suffering and provide the best possible quality of life for people facing the pain, symptoms and stresses of serious illness. It is appropriate at any age and at any stage of an illness, and can be provided along with treatments that are meant to cure you.” Cure? Yep, they said cure! I found out that palliative care is mostly misunderstood. It is not the same as hospice, it is not “end of life” care, or anything like it. In December, The New England Journal of Medicine said clearly, “Palliative care suffers from an identity problem. Seventy percent of Americans describe themselves as “not at all knowledgeable” about Pallitive Care Quick Facts_edited-1 palliative care, and most health care professionals believe it is synonymous with end-of-life care.” Dr. Joanne Wolfe, the director of pediatric palliative care at Boston Children’s Hospital, and a respected researcher, sees a lack of knowledge as the greatest obstacle to improving palliative care for children. She says parents need to ask that there be a high focus on the child’s physical, emotional, and spiritual well-being because a child’s day-to-day life during cancer treatment has long-lasting effects. “I want kids to emerge from cancer as children with greater strength and not undue or preventable injuries as a result of treatment.”

How does palliative care work for children with cancer? I found that pediatric palliative care is specialized medical care that uses a team of doctors, nurses, social services people to help family life and other specialists who work together with a child’s oncologists and other doctors. The “team” is focused on providing relief from the symptoms, pain, and stress on the family. The goal is to improve quality of life for both the child, and the family.

I know from my own experience that once cancer knocks on the door, it take’s over the entire family and their individual lives from that day forward. “Quality of life for both the child and the family,” is something that is desperately needed. When cancer arrives, members of our childhood cancer community know what happens. Work suffers, finances suffer, schedules are no more, relationships with spouse and family and friends are turned upside down and worse of all, the brothers and sisters of the child with cancer are thrown into an emotional universe where often their needs become much less important than those of the patient. What everyone needs, including the child with cancer, is a “normal“ family environment, not turmoil and chaos. With the close communication that palliative care provides, families are better able to choose options that are in line with their values, traditions and culture. This improves the well-being of the entire family. The earlier you enter into palliative care, the better, but it’s never too late to start. Pediatric palliative care can help children suffering from cancer and their families.

The conclusion of the New England Journal of Medicine article reads, “Patients who access earlier specialty palliative care have better clinical outcomes at potentially lower costs — a compelling message for providers, policymakers, and the general public.” Notice the words, “better clinical outcomes.” Does that sound anything like “death,” or “end of life?”

Benefits of Pediatric Palliative Care: www.GetPalliativeCare.org is an excellent source for more information and provide the following:

Pediatric palliative specialists focus on your whole child and how your child’s illness and treatment affect the entire family.

The palliative care team supports your child and family every step of the way, not only by controlling symptoms, but also by helping you to understand all of the treatment goals and options.

Working together with your primary doctor, the palliative care team provides an extra layer of support through:

Close communication and time
Expert management of pain and other symptoms
Help navigating the healthcare system
Guidance with difficult and complex treatment choices
Emotional and spiritual support for you and your child

It is important to remember that blending palliative care with curative treatment is essential in providing your child and family with the most complete medical care possible.

Looking back, our family could have certainly used palliative care and I suspect many, if not most, in our childhood cancer community would say the same. If you have a child that is being treated for cancer, I suggest you look into pediatric palliative care for the child, you, and your family. They will help you and your family move through the journey and will even assist after treatment while your child is on the road of survivorship. Speak to your doctor. A list of hospitals that practice palliative care can be found at www.GetPalliativeCare.org

There is a bill in Congress now that has passed the House and is in the Senate and continues to have a lot of bipartisan support. The Palliative Care and Hospice Education and Training Act (PCHETA) aims to establish Palliative Care and Hospice Education Centers, provide physician and nurse training in palliative medicine. It provides Palliative Medicine and Hospice Academic and Career Incentive Awards to individuals to support career development, develop a national education and awareness campaign, and to expand national palliative care research programs. I fully support this bill.

Author: Joe Baber

updated April 14, 2020

Good sources of information on Palliative Care:

Kelly Michelson, critical care physician at Northwestern University has an excellent article on the Huffington Post. Check it out here

NIH

Get Palliative Care .ORG

New England Journal of Medicine

Space

ACS

ACS Article Easing the burden of cancer through palliative care

The American Cancer Society has an excellent video: Palliative Care Video

Palliative Care: Life-Changing Support for Those Facing Cancer by Rebecca Kirch, JD, Director of Quality of Life and Survivorship for the American Cancer Society. A quality care expert, Rebecca’s work focuses on improving quality of life and preventing suffering for all adults, children, and families facing cancer.

Ladybug House: A Home Away From Home

Last update: 1/23/2020

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, young adults | Tagged American Cancer Society, Better Clinical Outcomes, Boston Children's Hospital, death, Dr. Joanne Wolfe, end of life, Get Palliatve Care .Org, hospice, Joe Baber, National Cancer Institute, National Institutes of Health, NCI, neuroblastoma, NIH, The New England Journal of Medicine | 7 Comments

Washington Lip Service

Posted on January 13, 2014 by Team Captain

Editor’s Note: Since this article was written, the Gabriella Miller Kid’s First Act was passed by the U.S. Senate by unanimous consent vote on March 11, 2014. The President signed the bill into law on April 3, 2014. So far, it has not been appropriated. It will be a shame if our legislators do not honor their promise and fail to put this in the budget.

Dear Senators Toomey and Casey:

It is a rare occasion for me to be short and to the point, so when I wrote to you about the House-passed Gabriella Miller Kids First Research Act, it took every ounce of restraint to not go on and on and on about the problems facing children with cancer. To recap, I wrote a short and to the point e-mail to each of you on December 13, as highlighted below.

Dear Senator, I sure hope that the media has it wrong, but I am hearing that the Senate plans to snub HR 2019 Gabriella Miller Kids First Research Act, which would redirect taxpayer convention funding to pediatric research. I am asking that you collaborate with other Senators and do everything and anything in your power to ensure that the proposed legislation is discussed, voted on, and passed. Kids with serious conditions like cancer deserve to be a research priority in this country instead of being relegated toward the bottom, as they have been (with an estimated 4% of the NCI funding going toward pediatric cancers). Please give this your immediate attention, regardless of other priorities. I have not had to personally deal with childhood cancer, as my daughters have been healthy to date (knock on wood), but this legislation is of utmost importance to me. I hope you share my sentiments. Thank you!
Laurie
Laurie Orloski, PharmD

You both came through on your promise for a guaranteed written reply for me, your constituent. Your timing (first full week of January) was not horrible considering the holiday but still could have been quicker, considering that you both sent me back a canned blah, blah, blah response that failed to address my inquiry or merely acknowledge the Gabriella Miller Kids First Research Act.

The content of your “letters” themselves speak volumes, so I don’t have too much to say and will be relatively short and to the point again. Just to be clear, this is where we all stand right now, per my perspective: I wrote to you about a specific piece of proposed legislation to benefit children that is in jeopardy of never even making it to the Senate floor—in which $126 million dollars of taxpayer money slated to support political conventions (including but not limited to meals, goodie bags, and balloons) would be redirected to support research for childhood cancer and other poorly understood and difficult-to-treat conditions like autism and Fragile X—and you wrote me back with generic prose in which you plugged your own politically motivated messages that are not relevant to the matter of importance to me. Yes, you insulted my intelligence by thinking that you could pass off a form letter/template/canned reply for a tailored response letter, but luckily for me I was not born yesterday. Far more importantly, you overtly insulted children with serious medical conditions and their families by allowing a response letter to go out (with your signature attached to it) that failed to mention not only the Gabriella Miller Kids First Research Act but also fundamental words, for instance, children, kids, pediatric, cancer, or autism. I am so taken back by that–no mention at all of “children” or “pediatrics” in a reply to an inquiry about, of all things, the Gabriella Miller Kids First Research Act. Senator Casey, I am particularly surprised that in your laundry list of accomplishments, there was no mention of the Creating Hope Act of 2011, why not?

I don’t need to ask you where you stand on the bill, as I think it is pretty obvious that you are opting to sit back and do nothing. I would like to ask, however, if you personally read my e-mail and thought about it at all, or if one of your staffers or an intern took the lead in pulling the template letter for “healthcare” and adding my name to it. Quite frankly, I’m not sure what is worse: if my e-mail wasn’t deemed important enough to reach your desk, or if it did reach your desk and you made the decision to dance around the subject of the Gabriella Miller Kids First Research Act while taking the opportunity to instead deliver political messages to one of your constituents. Maybe I was too short and to the point, maybe I needed to explain to you what the Gabriella Miller Kids First Research Act is and why, although not an end-all-be-all solution, it is such an important step forward for children in this country. Regardless, please abandon the blah, blah, blah and rah, rah, rah letters and do better the next time someone contacts you about something they are passionate about.

I am not trying to be dramatic or snarky here, but as a life-long Pennsylvania resident (having been born, raised, and educated in the Commonwealth), you really have made me want to pick up and move elsewhere. I have to wonder though; would the grass be any greener across state lines? Unfortunately, I am thinking no, given that childhood cancer has been and continues to be a low priority for funding on a national level–so low of a priority that US Senators like you would, in writing, pretend like it doesn’t exist at all. Kids with serious medical conditions for which current treatment is lacking or inadequate deserve so much better, needless to say, and the Gabriella Miller Kids First Research Act is a means of doing just that. If you agree, you need to speak up and give this bill a chance.

Sincerely disappointed,

Laurie Orloski

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged Congress, Gabriella Miller, Laurie Orloski, NCI, pediatric cancer, Senate, Senator Bob Casey, Senator Pat Toomey, The Gabriella Miller Kids First Act | Leave a comment

Turn Foreign Aid into Cures for Cancer

Posted on January 2, 2014 by Team Captain

In 2020, the United States spent $51.05 billion on foreign aid ($11.75 billion in military assistance and $39.3 billion economic assistance) Foreign aid has been a hot topic ever since our country slipped into recession in 2008. On any given Sunday morning, foreign aid is likely to come up and be debated by the talking heads on the panels of This Week, Meet the Press, Fox News, and others. One argument is that if we are in such sad shape economically, why are we giving so much money away and not using it to improve our economic situation here at home. If our country isn’t healthy, how can we continue to help so many around the world? Another argument is why give billions to countries that hate us, and even would like to do us harm? The government says we need to be generous with our aid to help present and future allies to improve our standing in the world. Of course, everyone debates how badly one party or the other handles and/or wastes our foreign aid dollars.

I have an opinion about the amount we give to other nations. I say we should consider taking five percent of our foreign aid dollars and repurpose them in the form of an investment for the benefit of the entire world. Would it really be a major problem if we reduced our gifts to other countries by 5%, a nickel on the dollar?

Every county around the world has been affected by cancer and spend huge amounts of money to treat it. Most of them depend on us and other developed nations to research and provide diagnostics and therapies because they can’t afford to do any research themselves. Five percent of the foreign aid we give to other countries would amount to $2.55 billion that could be used as an investment that would benefit every country on this planet. In 2020 our National Cancer Institute spent about $6.83 billion on cancer research. All of our politicians agree NCI needs more and would like to give it to them, but can’t agree on a source for the needed funds. Politicians debate on spending cuts from other areas or dreaded tax increases. Imagine if we could increase cancer research 40% without spending an extra dime!

If we reduced foreign aid by only five percent, we could increase cancer research by nearly 40 percent! An extra $2.5 billion going into cancer research would allow us to revitalize our battered and bruised medical research industry and bring it back to being the best in the world. Every dollar spent in medical research adds fifty dollars back into the economy. As a result, over $100 billion going back into our economy would mean more people would have employment opportunities. More people being employed translates into more revenue for our government. More revenue coming in means that we have a better chance to pay down the deficit faster. Our nation could greatly improve it’s economic health with this stimulus.

All these benefits and we haven’t even talked about what it would do for cancer! In the world of cancer research we could make real investments in genome sequencing, precision medicine and immunotherapy research which is not as toxic as chemotherapy and radiation. Childhood cancer could become the highest priority in medical research just as HIV/AIDS did in the 90’s. We’ve already seen where advances in pediatric cancer research have benefited adults. If we can improve children’s cancer, it will benefit more adults than children. For once, we will be able to concentrate on such cancers as DIPG, Medulloblastoma, Neuroblastoma and others that are on the low, low end of the survival scale.

Maybe, just maybe, we can make this investment work and return to the world a cure for cancer. I’ll ask you, “What better gift could we possibly give ourselves, our children and our neighbors around the world, than a cure for cancer?”

Author: Joe Baber

Updated 1/02/2023

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged DIPG, foreign aid, HIV/AIDS, Joe Baber, medulloblastoma, National Cancer Institute, NCI, neuroblastoma | 1 Comment

iSad, iMad, iPad

Posted on December 19, 2013 by Team Captain

Editor’s Note: Since this article was written, the Gabriella Miller Kid’s First Act was passed by the U.S. Senate by unanimous consent vote on March 11, 2014. The President signed the bill into law on April 4, 2014. The next action needed is to have the bill appropriated.

It’s not much fun being old. It’s 2:42AM for Pete’s sake! I seem to get up a lot and vent about it on my iPad. My wife doesn’t appreciate venting to her in the middle of the night, so I choose to do it this way. It seems to help a lot with our relationship and that’s important.

I’m irritated about how I have to take meds for just about everything and sometimes nothing works. I’m really irritated about three of them tonight. I’m on blood pressure pills like most old people, melatonin to help me sleep, and stool softener. None are working at the moment, so I am sure you can understand why I’m irritated. Actually, lately it seems I easily get irritated about a lot of things. Irritated is not good for sure, but it’s a heck of a lot better than “mad.”

While I was laying in bed and unable to sleep, my mind seemed to keep bringing me back to thoughts of little Gabriella Miller and her parents. Most of you know her. She’s the little girl who recently had lots of news articles about all that she did in her fight against cancer. The first time I saw her was on TV when she spoke at the childhood cancer CureFest event on the mall in Washington, DC in September of this year. This cute little pint sized, 10 year-old ball of energy stepped right up to the microphone and said, without any hesitation at all, “Hello, I’m Grabriella Miller and I have brain cancer.” She had me at “Hello,” and I fell in love with her as she went on to tell her story and what she was doing and what she wanted others to do. Sadly, the walnut sized brain tumor that she symbolically smashed with her frying pan finally got her. This makes me so very, very sad. This beautiful little girl, so full of life, taken from her mother, father, and little brother by a tumor the size of a walnut. I am a grandfather of 4. She could have been one of mine. I’m sad and I’m mad as hell when it comes to kid’s cancer.

My grandson is a survivor of neuroblastoma. The clock has been ticking for seven years now and so far, there are no signs of it returning. After I retired, I chose to assist my daughter who has been involved in cancer research and the childhood cancer community for years. We have been working to gain support for the Kids First Research Act long before it was named in honor of Gabriella. We felt that it was a good idea to repurpose the federal presidential election funds into much needed pediatric research. By the way, childhood cancer research is a big part of the pediatric disease research universe. It was a perfect match to have Gabriella Miller attached to this bill that not only benefits kids with cancer, but also benefits other kids with rare diseases. Gabriella was a champion of kids and a childhood cancer advocate at the same time. This bill was one small, painless way to move money to help kids without increasing spending. Do we need additional childhood cancer funding? Yes, absolutely and lots of it. We are working on that too.

This is what really makes me mad. The bill just passed in the House one week ago and already there is talk of it not even making it to the Senate floor for a vote! Can you believe it? That’s ridiculous! I can’t believe we could possibly let something like this go without consideration of all our members of the Senate!

Over the coming weeks, we will join forces with others who feel as we do. We will form an action plan that will get this bill considered and passed by the Senate. Get your frying pans ready! Before it’s over, we may ask you to bring them to Washington so we can crack some nuts up there.

Author: Joe Baber

Related Articles:

HR: 2019 The Gabriella Miller Kids First Research Act

Smashing Walnuts: A Call to Arms

Smashing Walnuts and Barriers

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged Gabriella Miller, Joe Baber, Kids First Research Act, Smashing Walnuts | 1 Comment

Smashing Walnuts: A Call to Arms

Posted on December 17, 2013 by Team Captain

Editor’s Note: Since this article was written, the Gabriella Miller Kid’s First Act was pass by the U.S. Senate by unanimous consent vote on March 11, 2014. President Obama signed the bill into law on April 4, 2014. It was appropriated and the first installment was delivered to the NIH for 2015.

This is an impromptu post prompted by recent discussion and debate over the Gabriella Miller Kids First Research Act.

Overall, in the past few months, I have become increasingly concerned and baffled over the lack of attention to childhood cancer on the part of the US government. I hate to rehash this, but for proper context, in late August the childhood cancer community was snubbed from the White House regarding their request to light the White House gold in honor of Childhood Cancer Awareness month. For me, my frustration with that debacle is more about how the request was denied, rather than the unwillingness to implement gold lighting per se. The response letter arrived in the very last hour and, came off as being something that was thrown together in about 5 minutes at best. It was loaded with all kinds of questionable and insulting verbiage, like we “cannot light it gold” (really, the White House is incapable of buying and installing gold lights?) and “we’re issuing a Presidential Proclamation to help amplify your important cause”, and then the whopper slap in the face came with the White House illumination in pink a short month later to support Breast Cancer Awareness. It was all very disrespectful to the many kids who have battled cancer and those that will be diagnosed today, tomorrow, and so on. I never lost a child from cancer and was genuinely hurt and angry about this snub against kids with cancer, so I could only imagine how personally affected children and the family members felt.

Why is childhood cancer not a priority for the US government or the American public? I don’t really know, but from my perspective, childhood cancer should be a priority for everyone. While childhood cancer is relatively uncommon, “cancer” is the most dreaded diagnosis out there, by far; everyone’s worst nightmare, right? One in 2 men and 1 in 3 women will develop cancer in their lifetimes, so most people will deal with their own cancer or that of a friend or family member at some point. Those who have dealt with cancer know how horrible it is, not only because of its life-threatening nature, but also because of the toxicity of the treatment. After enduring the physical and mental stress of aggressive treatment for a rare gynecologic tumor, my own mom died a horrific death nonetheless. It all seemed so very inhumane, that she would suffer like that after living an honest life. So how on earth can anyone accept that children go through the exact same thing, and worse? Yes, CHILDREN of ALL AGES (babies are not an exception) go through this nightmare, yet most adults are unaware of the problems facing childhood cancer or are aware but opt to sit back and do nothing. Moreover, please do not misinterpret my intention by stating this next statistic; I am not attempting to cancer blame or cancer shame anyone by noting the fact that 2 in 3 adult cancers are thought to actually be preventable in some way shape or form. Poor diet and lack of exercise are big modifiable risk factors, along with certain things like a variety of different viruses, for which preventative measures exist for some (there are other modifiable risk factors, but we can talk about that another time). Then, on the flip side, you have childhood cancers—and very little is known about what is causing kid’s tumors, which tend to be aggressive in CHILDREN of ALL AGES. Yet the majority of ongoing cancer research, in terms of identifying and understanding risk factors and identifying more effective and tolerable treatments, applies to adult cancers. I just don’t understand and can never accept how this can be, and so I am trying to do my part to help. But why am I (a mother to two healthy-to-date kids) a rarity in this community? Why would anyone want to wait for a child they know and love to develop cancer to get involved in an effort that can lead to cures for childhood cancer? As many parents can tell you, better than I ever could, you really don’t want to wait on this.

Now, as I write, another snub of the year appears imminent. Word on the street is that the Gabriella Miller Kids First Research Act, which passed the House after quite a bit of hoopla, has no shot of even being considered in the Senate. Apparently, the Senate Majority Leader (Harry Reid) has his own version of an unwritten House rule referred to as the Hastert Rule, in which bills not favored by the “majority of the majority” are squashed by a majority leader before consideration; ie, tossed rather discussed. This maybe in fear that they might actually pass by having some majority members deflect to the other side. Call me naïve, but I have no idea how something like that is constitutional. How could it possibly be in the spirit of what our founding fathers intended? If I am mistaken and have this all wrong, please let me know and correct me accordingly! If my current understanding is correct, instead of redirecting money to support pediatric research (including cancer, among other conditions like autism), the Democratically controlled Senate would rather keep millions of dollars for political conventions and important things like buffets, goody bags, balloons, signs, etc. Oh no, you don’t. Come on everybody, WE CANNOT LET THIS HAPPEN!! We need to let democracy work here on behalf of the millions of kids in this country, by at least allowing this bill to be considered. To squash, without a vote, this important step forward for pediatric-specific research would be an utter travesty. In July of this year, while working with the House Speaker on student loans, Senator Reid said, “The only way to pass meaningful legislation in either chamber is to do votes with reasonable Democrats and reasonable Republicans.” I hope he feels the same way when it comes to research for children’s diseases.

I am a Pennsylvania resident and wrote to both of my Senators (1 Democrat, 1 Republican) on Friday December 13, for what it is worth. I had this overwhelming urge to do something immediately and used the contact form on their web pages to write a short note, and here is what I had to say. I tweaked it for the second Senator I wrote to, specifically asking that he collaborate with the other Senator.

“I sure hope that the media has it wrong, but I am hearing that the Senate plans to snub HR 2019 Gabriella Miller Kids First Research Act, which would redirect taxpayer convention funding to pediatric research. I am asking that you do everything and anything in your power to ensure that the proposed legislation is discussed, voted on, and passed. Kids with serious conditions like cancer deserve to be a research priority in this country instead of being relegated toward the bottom, as they have been (with an estimated 4% of the NCI funding going toward pediatric cancers). Please give this your immediate attention, regardless of other priorities. I have not had to personally deal with childhood cancer, as my daughters have been healthy to date (knock on wood), but this legislation is of utmost importance to me. I hope you share my sentiments.”

Since I am a constituent, I am guaranteed a written response. If they opt to do nothing, how on earth will they justify that in writing? One of the PA Senators, the Democrat Bob Casey, had introduced the Creating Hope Act of 2011. Will he step up here, for this bill that is in the same overall spirit (in supporting the funding pediatric research) but is being opposed by many of his fellow Democrats as a “publicity stunt” on the part of House Republicans?

Beyond writing this blog post and writing to my Senators, I am not really sure what else I could or should be doing to effectively raise some noise for the Gabriella Miller Kids First Research Act. I am open to any suggestions you might have. This is a crazy time of year and I am very behind in every aspect of my life, but I will make this the priority it needs to be….

Author: Laurie Orloski

Smashing Walnuts and Barriers, an opinion by the Four Square Team Captain

HR:2019 The Gabriella Miller Kids First Act, The latest information available.

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease | Tagged Gabriella Miller, Harry Reid, HR 2019, Kids First Research Act, Laurie Orloski, pink White House, Smashing Walnuts | 1 Comment

Let’s Push Buttons

Posted on December 5, 2013 by Team Captain

Would you believe?:

96% of all clothing sold is for adults.
96% of all breakfast cereals are consumed by adults.
96% of all bicycle helmets are worn by adults.
96% of all cancer research conducted by the National Cancer Institute is for adults.
96% of all lunch boxes are carried by adults.
96% of all crayons and finger paints are used by adult artists.

If you doubt any of these statements, you are correct to do so because all of the above statements are false, except for one. Care to guess which one is true?

Sadly, I hate to tell you, but number 4 is true. 96% of all cancer research conducted by the National Cancer Institute is for adults.

The gold ribbon is the primary symbol used to promote Childhood Cancer awareness. In the past, I have spent a lot of time and effort to promote the use of the ribbon and have spent hundreds of dollars passing them out in September, National Childhood Cancer Awareness Month. I have been active in promoting the ribbon on Wednesdays to increase awareness during the year. I believe the ribbon is a good idea, but after a couple of years, I am beginning to believe it to be a very passive and possibly a rather ineffective way to promote awareness. It’s pretty and it is fashioned just like the famous pink breast cancer ribbon. When I wear my ribbon, I get very few people to ask me what it is for and sometimes, because of my age, I wonder if people think that I trying to promote breast cancer awareness for grandmothers. I’m thinking that we may need a more direct, in your face, approach to promoting childhood cancer awareness than just a lone gold ribbon.

There are plenty of things that make all of us angry and very non-passive when it comes to childhood cancer. NCI only spending 4% of it’s research budget on childhood cancer is one that makes me angry. Every time I bring up the subject with people involved with cancer, there is always someone who wants to explain how the National Cancer Institute apportions it’s money. They want to justify it by using charts, graphs, news articles and such to show the reason behind it. My response is always the same. In my best, raised “grandfather’s voice”, I say, “I DON’T GIVE A DAMN!” I could care less how they figure it! You must admit, 96% for adults is just WRONG! Children command a much bigger slice of my life than a measly 4%. I believe that anyone who has or ever had children would want to make sacrifices for them, especially when it comes to research.

To improve childhood cancer awareness, I think we should concentrate on the things that make us “mad as hell!” Put a spotlight on things like NCI’s dumb-ass budget, the American Cancer Society’s lack of action related to childhood cancer, the fact that seven kids continue to die each and every day, only two new drugs have been developed since the FDA was formed way back when I was in the first grade. You know the “hot button” issues that make you and the rest of us mad. I think it’s time to push other people’s buttons for a change and by doing so, enroll them in our efforts to end childhood cancer.

When we wear a gold ribbon, why not back it up with a button that will cause those that see it to ask questions? Once they ask about the button, you can jump in and start creating lots of awareness. Let’s make buttons on the stuff that makes us mad as hell. I bet we can make others mad enough to help us and create enough adverse public opinion to shame certain people into allocating more money for children’s cancer research.

Should we push buttons? Let me know your thoughts…

Author: Joe Baber

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged American Cancer Society, FDA, gold ribbon, Joe Baber, National Cancer Institute, NCI | 4 Comments

The Small Hero Amongst Us All

Posted on November 16, 2013 by Team Captain

Editor’s Note: Jonathan Agin penned this piece two years ago for the Huffington Post. The only things that have changed since then are the additional faces of the small heroes each year.

Each year, toward the middle of December, there is a lot of discussion about who has been a hero in the last twelve months. Who is a hero, what have they done?

It truly amazes me the people who we gravitate towards and idolize and place on this list. I suppose that ultimately it is a matter of personal preference and outlook on life; however we place way too much emphasis upon those individuals who are undeserving.

I am not a fan of Amy Winehouse’s music, yet I can appreciate the fact that she had an amazing voice and incredible talent. Nonetheless, the fact that so much outpouring was expressed about her death frustrated me. Here we are as a society idolizing a woman who took an amazing gift and destroyed every last bit. She killed herself through a lifetime of drugs and alcohol despite the efforts of many to save her. Despite this knowledge, she is celebrated and remembered essentially as a hero. Tributes are paid to her almost on a daily basis.

Contrast someone like Winehouse with a sick child who never asked for her disease. Spend one hour in a pediatric oncology ward at any hospital across the United States and you instantly will come to understand the word “hero.” Watch as a child, bald and gaunt from the ravages of cancer, smiles and does laps around the ward as the most toxic substances drip into her veins. That is a hero. Sit amongst several children as a nurse tries to find a vein over and over again, the children not fighting, but rather sitting there as they are stuck two, three, four and five times, simply to be given medicine. That is a hero. Watch as your child is sedated for the seventieth time with propofol and does not complain.That is a hero.

You see, we idolize celebrity in this country. We watch as the Kardashians prance around endlessly displaying an inane sense of entitlement. We grieve for the loss of Michael Jackson who used propofol as a sleep aide. And yes, we look past Amy Winehouse killing herself and pay tribute to her, forgetting completely how she died.

My daughter, Alexis Agin, was a hero. Diagnosed with terminal brain cancer at 27 months old, she never once complained, accepted all the treatments we put her through, and sat by while she was poked and prodded for 33 months. She battled with bravery against a disease that has a 99 percent mortality rate, and she did so all with a smile and a grace that we as adults rarely demonstrate. She faced odds that have not changed in over 30 years, yet she prevailed on so many levels. That is a hero.

As we wind down this year and look to see who has inspired us over the course of the past 12 months, I would suggest to you that there is no need to look too far or to create false idols. There is no need to canonize those who are not deserving. And, although this may be just my personal opinion, when we start idolizing those individuals who have chosen not to live, but rather destroy themselves, we fail to provide positive role models for the future. Yes, heroes do exist; they walk amongst us in very small packages, never trying to be heroes. They simply just are.

Author: Jonathan Agin

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged Amy Winehouse, hero, Huffington Post, Jonathan Agin | 1 Comment

Races, Carnivals, and Birthdays

Posted on November 11, 2013 by Team Captain

I have been doing a lot of two things lately: working (medical writing stuff) and running. I think I have a touch of childhood cancer blogger-writer block. I do plan to elaborate about some comments made in my prior post, about competition in the childhood cancer community, but I am not in the right mindset to do that right now. I am going to take this opportunity to talk about the month of October, as a follow-up to my Shocker of a Vacation blog last month. I’m not going to talk about October in the context of Breast Cancer Awareness month, as I already voiced my stance on that (Gold vs Pink).

This morning I ran the Annual the Oley Valley Country Classic 10 miler. I was not planning to run this race but just can’t resist it. It is like runner’s nirvana, a rural course nestled in the heart of Pennsylvania Dutch farm country in the midst of fall foliage season. I ran this particular race twice during the late 2000s, prior to having my 2 daughters, and again last year. Last year’s race was a doozie! I was coming off of 20 months of breastfeeding my younger daughter and was still in the process of losing the 60+ pounds of pregnancy weight, but I decided to subject my out-of-shape self to this race as a “challenge” to myself. Oh, and a challenge it was. The good news is that I finished, and with an “OK” time considering where I was at fitness-wise. The bad news was that I felt so incredibly ill during the entire 10 miles, and the entire day, and also for practically the entire week afterward. My time and ranking were not a priority to me, but I did notice something in the results. A 73 year-old woman had come in right before me! I will admit, that this was a bit of a blow to my running ego but, at the same time, it really served to motivate me to get into much better shape so that I could someday be THAT lady. I don’t want to be gone from this earth at age 50 like my dad or at age 62 like my mom. I want to be running 10 miles at 73 and counting and coming in ahead of 38 year olds like moi!!! My parents were relatively healthy and had no real medical history to speak of, yet they still died young; however, they were not runners and not nearly as active as me. Maybe, just maybe, running will be my key to a long, healthy life, or maybe not. Honestly, who cares? Not me. I absolutely LOVE running irrespective of the health benefits and, if I had the choice, would opt to be scooped up from the side of the road after suffering a mid-run heart attack than spend my final days suffering from cancer like my mom did. Anyhow, today’s run was amazingly awesome! I have to say that I have worked hard to get myself back together and it has paid off. I ran much stronger and faster. Yay, maybe I will make it to 73+ after all! Last year, making it from 38 to 39 was seeming to be a stretch!

I ran in the 2^nd Annual Steph’s Fall 5k, which was a big deal for me. The race was held about 2 miles from where I grew up. I have a general “no visiting the Wilkes-Barre, PA area” policy because of the emotional toll: both of my parents spent their entire lives there, and now that they are gone, I vowed to never return. But time does heal, as they say, and it became apparent that it was more important for me to support this race than to avoid the past. So I trekked my butt up there and put a big smile on my face in doing it. As for this race, Stephanie Godri-Johnson was the much younger sister of my former high school classmate, Maria. Stephanie had passed away in May 2012, at age 32, from a colon cancer of a very rare histology. She was an avid runner, former student athlete, military wife, and the mother to two young children. She was diagnosed 3 months after having her second child and battled for about 18 months. I encourage you to read her story here: http://stephsfall5k.com/index.php/about/stephanie-story.

A giant THANK YOU to Stephanie, for being such an awesome person and for inspiring others to follow her lead, and for her wonderful family for putting together such a lovely race to honor her memory while helping others. I’m just not sure that I would be here right now, in the midst of childhood cancer advocacy and fundraising, if it were not for this untimely loss of such a vibrant life. I became a sponsor for her run and, by doing so, it instilled in me a nagging want and need to do even more. My mother was not a runner and actually despised running, so a memorial run in her memory would have been blasphemy. In my search for a different avenue, I decided to focus my attention on the kids and develop an event where kids could do their part to help their fellow kids with cancer.

I attended a childhood cancer fundraising event on October 13th, which was the Get Well Gabby Foundation’s Carnival for a Cure in Phoenixville, PA. Gabby was 5 years old when she developed and passed away from a DIPG. Gabby was preparing to start Kindergarten when she was diagnosed. When I first read about her, I was in the midst of Kindergarten prep for my older daughter. Needless to say, that struck a nerve. Both of my daughters came to the carnival, and I have never, ever seen them both so happy at the same time. Very bittersweet, as they say.

Yippee for me, October 21st was my 39^th birthday. I have reached the final year of a crazy decade, during which I gave birth twice and lost my mother in between. I can only hope that my 40s are less eventful. October 21 is not just a birthday. It has a different meaning for me, as it was the day that I personally broke the news to my mom that she had cancer. She had surgery that day, and nobody was around except me when she emerged from the anesthesia. She pressed me about what the verdict was, “how did it go? what did they say?” she kept asking. I was forced to tell her the truth: that she had very advanced stage III cancer, that the tumor was firmly attached to many of her organs so the surgery could not be completed as planned, and that she would need to start chemotherapy ASAP and make another attempt at the surgery in a few months. Her surgeon tried to put a positive spin on the situation, but I knew in my heart of hearts that this was the beginning of the end for her. So I cried a continual stream of tears while delivering this news, despite trying so hard to keep it together. In my mind, I was giving her a death sentence. Well, how’s that for a Happy Birthday (I was 34), yowza! But after that heart-wrenching day, I managed to put on the most positive face possible, even though I still thought she was doomed. She only saw tears one other day, and that was toward the end.

Author: Laurie O

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged Get Well Gabby Foundation, Laurie Orloski, Oley Valley Country Classic, Steph’s Fall 5k, Wilkes-Barre | 1 Comment

The Exploitation of Childhood Cancer

Posted on November 7, 2013 by Team Captain

You all remember that little government shutdown a handful of weeks back don’t you? The emotional press conferences held by members of Congress on both sides of the aisle talking about how children with cancer would not receive treatments at NIH, and new trials would be shelved. The votes to piecemeal fund clinical trials at NIH. Doctors in lab coats stood behind members of Congress as we all worried about children currently battling cancer and those newly diagnosed. One member of Congress, in a now regrettable moment, made a declaration about helping out just one kid with cancer versus other groups impacted by the shutdown. And then, it went away and kids with cancer were no longer front and center or a national priority. Children with cancer in this country were shelved for the next time they are politically necessary. There was no further need to do any type of news coverage either. And that is the problem. The message that we receive is that kids with cancer are only really important when they have a larger impact or play a valuable role to those using them for gain. When they are politically beneficial or useful for raising money through a Relay for Life advertisement or large endowment, then you see childhood cancer.

If you watched the press conferences on the Hill, you got the sense that many members of Congress believed that childhood cancer research and access to clinical trials was in fact a significant priority. You were left with the belief that members of Congress on both sides of the aisle wanted to ensure better treatment of children with cancer. But now that it is all over, it is quite easy to pull the curtains back on Oz and see the real truth. The same members of Congress who were so quick to use children with cancer as tools are more than accepting of Harold Varmus, M.D.’s four percent allocation of the National Cancer Institute budget for research of all forms of childhood cancer combined. Pull the curtains back a little more and learn that the FDA has approved only one new drug specifically for childhood cancer in the past 20 years.

Once the crisis was over, for the time being at least, and it was safe to put children with cancer out of sight again, it was business as usual. The days moved on, the White House turned pink for breast cancer awareness month, despite the childhood cancer communities’ request that it be lit gold for September and Childhood Cancer Awareness Month, and yet again there was nothing to be gained from kids with cancer. So really, what message does this send to the childhood cancer community? In essence, we sit stranded on a desert island waiting for rescue. We may as well be waiting at the top of Everest for a rescue party. Unfortunately, it simply is not coming anytime soon at this pace. You see, childhood cancer is simply not a convenient priority for those who control the budgets, the appropriations or the development of new pediatric specific drugs. This despite the fact that it remains the number one disease killer of kids in this country. It sits in the corner, the red-headed stepchild to its more famous adult brethren. Rather then having its own place on stage, it plays a role as a background dancer as the world focuses on other forms of adult cancers with the hopes that treatments trickle down to the smallest warriors. This is simply not acceptable.

When my daughter Alexis was first diagnosed in April 2008 with an inoperable brain tumor, it scared the living hell out of me. Those words, “your child has cancer,” simply will never leave my collective consciousness. But then I took a step back and thought about all the amazing advancements of medical science in this country. Naïve, uneducated and simply dazed and confused, the voice inside my head thought, “they will be able to remove the tumor, and she will be O.K., just like all the other kids you see in the St. Jude commercials.” But the reality did not match this dream scenario, and in fact, there was no surgery available, no proven treatments and Alexis was marked for death with a sentence of six to nine months, maybe a year, with standard radiation therapy. Imagine that reality. It stunned me more than anything else. Here we are, a country that sent a man to the moon over 40 years ago, a country that can spend billions of dollars moving a remote controlled vehicle on Mars, and we cannot eradicate a tumor from my daughter’s head that rested comfortably no more than three to four inches inside her skull? Alexis battled for a long 33 months and was considered a long-term survivor of DIPG. In that time, I began to pull the curtains back on the great and powerful Oz, and I found that childhood cancer is simply not a priority for this country on a federal level. There are so many talented and amazing doctors and researchers who have dedicated their lives to finding real and lasting cures who struggle on a yearly basis to find funding. It is truly maddening.

And that brings me back to the shutdown again. What happened to the sense of urgency for children with cancer in this country after those press conferences? It was gone. In an instant, children with cancer did not represent an opportunity for publicity anymore. Children with cancer were no longer politically sexy. And thus, the community took two steps forward, and five back again. I suppose it is up to those of us in the advocacy world to once again press the issue and demand better for our kids. Ultimately, this is not just an issue of children with cancer. This could be any other disease population. It could happen to you and your family. It is imperative that we send the message loud and clear that children with cancer are not pawns to be used for political gain. That simply is wholly unacceptable.

Author: Jonathan Agin

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged Congress, Jonathan Agin, NIH | 3 Comments

it was one of those days

Posted on October 15, 2013 by Team Captain

Author: Annette Leslie

Related Article:

Never Ever Capitalize cancer

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease | Tagged #1 disease killer, Annette Leslie, Brain cancer, Brain Tumor, Carson Leslie | 2 Comments

Mesotheli-WHAT?

Posted on October 11, 2013 by Team Captain

Mesothelioma is normally not a cancer one hears about in the childhood cancer community. That may be because, in most cases, because of the long latency period, it is not normally detected until the child becomes an adult. Today, children in older schools may be exposed to asbestos which causes this type of cancer. Notice the fact sheet below.

If your child attends an older school, you should be aware of information that should be made available to you. Older schools that contain asbestos need to have a management plan on record detailing how the asbestos is going to be contained or removed and a plan for taking care of any problems arising from any building damage, repairs, remodeling or new construction. Parents have a right to examine these plans. If you have any concerns about your school, contact the school administrator.

More information about asbestos and mesothelioma can be obtained at www.mesothelioma.com

Author: Joe Baber with Special Thanks to Emily Walsh, Community Outreach Director, Mesothelioma Cancer Alliance

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged asbestos, Emily Walsh, Joe Baber, mesothelioma, Mesothelioma Cancer Alliance, old schools | 2 Comments

Four-Square Clobbers Cancer

Mad as Hell…maybe

‘Cause even the stars they burn
Some even fall to the earth
We’ve got a lot to learn
God knows we’re worth it
No, I won’t give up

Dear Caleb

C is for Cancer Camp

You know I’m not gon diss the ACS on the internet
Cause my mama taught me better than that

I’m a survivor (What?)
I’m not gon give up (What?)
I’m not gon stop (What?)
I’m gon work harder (What?)
Can Do’s Director is a survivor (What?)
Can Do’s gonna make it (What?)
Can Do will survive (What?)
Keep on survivin’

Page A29

comPASSION

Thank You, American Cancer Society

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updated April 14, 2020

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Editor’s Note: Jonathan Agin penned this piece two years ago for the Huffington Post. The only things that have changed since then are the additional faces of the small heroes each year.

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it was one of those days

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