Where are you now, Rock Hudson?

RockHudson_edited-1Are you wondering who is Rock Hudson? Do you think I have lost my mind? Well …..

Since my son Steven’s diagnoses with Stage Four Osteosarcoma over 7 years ago, followed by a diagnosis of Secondary Acute Myelogenous Leukemia, which required a lifesaving Bone Marrow Transplant, I have learned a great deal about PAYA (Pediatric, Adolescent StevenandAngieand Young Adult) Cancer.

  • I learned that cancer is the leading cause of DEATH (from a disease) in children.
  • I learned that there haven’t been any new drugs developed in over 20 YEARS to treat children with cancer.
  • I learned that the statistics for Adolescent and Young Adult (AYA) cancer survivorship has not improved in twenty years.

I tend to obsess over these issues each and every time I hear about another young person being diagnosed with cancer. I obsess when I meet someone who is fighting for their life from cancer that is not the result of life style behaviors.

So what am I getting at? This morning I had a revelation!

rocktaylor-giant_optI was sitting on the floor with  Steven, who was struggling with immobilizing neuropathic pain, cancer treatment one side effect, and I thought: WE NEED A ROCK HUDSON.        HUH?

Rock Hudson was a handsome movie star during the 1950’s and 60’s. During his youth women loved him! For over 30 years Rock was seen in movies and television. He left the public eye for a few years and then attempted to make a comeback. In the early 1980’s he returned to television to star rockhudson1in Dynasty with Linda Evans. Audiences were shocked at his appearance. What happened to Rock? Was he ill? He looked so gaunt! This isn’t the Rock we remember!

Sadly we later learned that Rock had AIDS. The public was shocked.

Rock Hudson provided a catalyst to the AIDS MOVEMENT. His diagnoses and death was the reality check needed for our society to realize that ANYONE COULD GET AIDS. After his passing, the entertainment industry embraced and used the legacy of Rock Hudson to 300.taylor.cm_.32311create awareness about AIDS. One of Rock’s leading ladies of the movie era, Elizabeth Taylor took on the task of creating awareness for this terrible disease. There was a complete and total assault on AIDS in the Media and Entertainment Industry.

Since 1981, 1.7 million people were diagnosed with AIDS. Since 1981, approximately 619,000 have died from AIDS in the United States. Fortunately for AIDS Research, the media and the entertainment industry saw fit to create AIDS awareness which resulted in the development of very effective efforts to fund AIDS research and prevention programs.  Apparently the attention caused by Rock Hudson, and the work of the media and entertainment industry since then were very effective! Today, AIDS is more treatable than ever before, and fewer people are dying each year from this tragic disease.

What does this have to do with Steven and all the other PAYA’s diagnosed with cancer?

Well, our children, adolescents and young adults with cancer have not been so fortunate! We have not experienced a media blitz to raise awareness. Yes, progress has been made for some life threatening cancers, but what about the more rare forms of the disease?

The National Institute of Health/National Cancer Institute (NIH/NCI) budget will provide only $195 million to Childhood Cancer Research (for ages 0-19 years) for 2014 (for 2016, it only increased by $12 million).  This amount has decreased for the last several years.  If you consider the effects of sequestration and inflation, you could say childhood cancer research funding is down 30% over 2008!   To put  aids funding in perspective to cancer funding, consider this: While the entire budget for all cancers, adults and children, is $4.9 billion, AIDS research is more than half at 2.9 billion! An estimated 15,529 people with an AIDS diagnosis died in the US during 2010 compared with 569,490 who died of cancer.  Do you see a discrepancy here?

Every year 2,700 children (0–19 years old) will die from cancer. That’s 17% of the children diagnosed with cancer. What about the survivors? Do you recall Joe Baber’s report last week? To paraphrase Joe “even when a child reaches the 5-year survival milestone (an arbitrary number), they are still at risk of long term effects…When we talk about “cure rate” it never mentions that more than 90% of those “cured” have serious or life threatening side effects or even secondary cancers caused by the treatment.”

What about AYA (adolescents and young adults’ ages 15 – 39 years) with cancer? Cancer is the leading cause of death (excluding homicide, suicide and unintentional injury) in this age group. In males, besides heart disease, cancer is the leading cause of death. In women it is the leading cause of death  (Bleyer, Viny, & Barr, 2006).

StepUpShineWhere is the Media? Where is the Entertainment Industry? PAYA Cancer shouldn’t be relegated to Special Interest Blogs by heartbroken parents who have lost their children or PAYA Cancer survivors sharing their stories. PAYA Cancer shouldn’t be a sound bite on the evening news that highlights a Walkathon by a few hundred parents and children during the month of September (childhood cancer awareness month) or about a young man or woman bike riding across the country to raise money for a specific cancer. MORE NEEDS TO BE DONE!!!

We appreciate last year’s STAND UP TO CANCER television program highlighting Taylor Swift’s awesome song “Ronan” but MORE NEEDS TO BE DONE!!! After the Stand Up To Cancer Program, did you hear the song “Ronan” played on the radio? Did it make the TOP TEN?

We appreciate all of the wonderful childhood, adolescent and young adult cancer organizations raising awareness and providing support to hundreds of families each year…..BUT MORE NEEDS TO BE DONE!!

We appreciate movies like 50/50 creating some awareness (a rather light hearted attempt at that) of the stresses and fears that a young adult experiences when diagnosed with cancer, BUT MORE NEEDS TO BE DONE.

Where is our ROCK HUDSON???

Is there some way the media and our society can come to an understanding that we parents and family members also grieve each time we lose one of our children to cancer?

The other day, I was reminded of parental pain of loss when I watched the news as a couple grieved over the loss of their child who was murdered at Sandy Hook Elementary School.

How often are parents asked to share their grief over the loss of their child to cancer on national television?

Is the grief of parent who lost their child to cancer any less than those unfortunate families at Sandy Hook? Where is the shock? Where is the disgust?

starprofile_edited-2Who will champion the cause of Pediatric, Adolescent, and Young Adult Cancers? What will it take for the media to dig in and help? How many more children will we lose to Brain Tumors (a childhood cancer that is increasing in frequency every year)? How many teenage boys and girls will lose their limbs or life to a Sarcoma (where treatments haven’t changed in over 30 years)? How many young adult women will die of Breast Cancer (as this age group is more likely to die than any other group)?

Where is our champion? Who else needs to die for the cause?

Author: Angie Giallourakis

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Compassionate Use

Compassionate Use_edited-1You may remember the #SaveJosh news articles in the spring of 2014 where little Josh Hardy’s family mounted, as a last ditch effort, a social media campaign to get him into a clinical trial that St. Jude’s doctors said was his last chance.  He had only a few weeks left or he was going to die, there was nothing else that would save him. It seems the entire childhood cancer community came together at once and with the help of several key players, social media, and TV news and talk shows, within 10 days, Josh got his medicine and it literally saved his life.  You may also remember Judson Shepard, a little boy with a similar situation needing the same drug. This time the little boy died because it took too long to get the medicine.  These two incidents occurred and can you believe it, the FDA has a compassionate use program in effect that “should have worked” in both cases. It did not work and it is not working in another case at this very moment.  Frankly, for the most part, it’s not working for children with cancer.

I am sure most of the readers of this blog know Ellyn Miller, Gabriella Miller’s mom, and founder of Smashing Walnuts Foundation. She and her husband Mark set up the foundation to honor Gabriella’s wishes to find a cure for brain cancer. Her efforts have resulted in the passing of the Gabriella Miller Kids First Research Act to repurpose Presidential Election and Campaign Funds into research for pediatric disease and childhood cancer. She is now working very hard to ensure that the bill gets funded.

Ellyn, wrote and posted the article below on the Smashing Walnuts Facebook page. In drawing attention to the current case  of  fifteen year-old Nathalie Traller and the barriers to compassionate use for kids, Ellyn sums up the problems as no one else can… a mother who has pursued every avenue of compassionate use to try and save her dying child.

Smashing Walnuts Facebook Page July 30, 2014  by Ellyn Miller

I have attached a link to a blog written by the dad of a 15-year old girl who has been told that his daughter cannot participate in a promising clinical trial because she is a minor. This girl has to wait three (3) more years until she is considered to be an adult.

The problem is that cancer does not wait for someone to come of age. Trust me on this one. It didn’t wait for my daughter. When Gabriella’s cancer started to regrow our options for clinical trials were limited. That didn’t stop me though. I WAS FIGHTING FOR MY DAUGHTER’S LIFE!!! I called all around the country, all around the world, speaking with doctors/researchers. I spoke to everyone that had any promising brain cancer treatments. NIH, Hopkins, Sloan Kettering, Duke, UCSF, the UK, Australia – to name a few… I was told – over and over again – that Gabriella wasn’t a candidate because of her age, she was too far post radiation, her tumor had metastasized … You name it, I heard it. I also heard, “Maybe the trial will open for your daughter in six months or a year. Well, dammit, my daughter didn’t have that long. I needed, my daughter needed, treatment NOW.

But, I have to tell you that this “age” thing (not being old enough for a drug trial) just makes me see RED! Are you kidding me!?! Not old enough!?! So, dear sirs that make up these laws, let me ask you this…WHY are we giving our children drugs that were created for adults? WHY are we giving our children drugs that are 30, 40, 50+ years old? WHY are we giving our kids drugs that are so toxic that the nurses have to wear gloves to administer them? WHY are we giving our children drugs that have known side effects such as causing secondary cancers? And, you’re telling me that you won’t/can’t give our children a new, promising drug because “they are too young”?!? I simply can’t understand that.

My daughter died! She was only ten-years old. Ask any parent of a child dying from cancer if they would let their child try a promising new drug, despite their young age. THE ANSWER IS YES, YES, YES!!! The alternative is too horrible to comprehend. The alternative is a nightmare. Our children die! Do you know how many of us parents are living in that nightmare? Way too many. And, the number grows everyday.

Don’t use age as the reason not to treat our kids. Their age should be the reason why we DO treat them. They have so much to live for…

NathalieVideo_edited-1

The Fault of our Systems

If  I were a member of the FDA, NIH, NCI or Pharma, I certainly would not want to face Ellyn Miller and try to explain why the current compassionate use policy is good for children  with cancer.

Authors: Ellyn Miller and  Joe Baber

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The Fault in Our Systems

NathalieVideo_edited-1by Nathan Traller, Nathalie’s father

Editor’s Note: Nathan’s daughter was diagnosed with Aveolar Soft Part Sarcoma (ASPS) two years ago and he has been fighting to get her into a possible life saving clinical trial for PD1 and PDL1. Time and options have almost run out.

The Fault in Our Systems

I didn’t make up that title. Someone else who knows this road did. But there are some very big faults in what happens if you are diagnosed as a teen with a rare cancer.

It begins with research funding. Younger people tend to have rarer cancers less likely to have been brought on by the environmental wears and tears of modern life. Their cancers are less in total numbers. The “market” is smaller and more diverse. Diseases like Nathaliefightershoppingsarcomas are referred to as “the forgotten cancers.”

I used to think that cancer research was like finding some needle in a haystack, a futile effort no matter how much money is thrown at it. This is not true. In the last few years an increased understanding of the genomic profile of cancer cells including how they avoid detection from the body’s immune system is offering up new targets to stop growth and even kill off metastatic cancer. When we put in the effort, understanding IS coming. Nathalie’s cancer (Alveolar Soft Part Sarcoma) has been identified for at least 30 years but very little research has gone into it. I don’t say this to say “It’s not fair!” I mention this because I am energized to be part of the solution. I am not independently wealthy, but I am a teacher by trade and I can communicate. I can shine the light on people doing good things so more resources are directed toward them. I can stand up for patient groups that need a stronger voice. I can tell a story. I can explain things in new ways.

NIHI can tell my personal experience with visiting NCI (the National Cancer Institute) part of the NIH (National Institutes of Health) in Bethesda, Maryland. Since we basically heard there is “nothing we know to do for Nathalie” at our first biopsy meeting, I began researching and found a Phase II clinical trial run through NCI for ASPS. Work was done to approve her age at 13 and we began flying out to NIH. NIH made me proud to be an American. This facility and what is being accomplished for all diseases including rare ones makes it a true jewel. I know there are many who have issues with wasteful government spending and I typically agree. However funding NIH and the NCI is truly an investment that pays off in new life saving therapies and even economic growth. Time after time I encountered families with children who had hope for their rare disease through a novel therapy being pioneered there. Please do not see this through a red or blue political lens. Nathalie’s favorite color is purple and she has senators on both sides of the aisle battling for her. There are advances in science that should be made whether the market drives them or not.

Children’s cancer perfectly illustrates this. Back to Nathalie, her life was saved by an oncology surgeon at NIH who performed the “can’t be done” surgery for Nathalie. The NCI is continuing research with an ASPS tumor bank and genomic studies of Nathalie’s tumor. The fact that NCI’s budget has been cut by 30% over the last three years is bad news for everyone. The other “fault in our system” is that only 4 cents of each NCI dollar goes to pediatric cancer research. More money will fund prostrate cancer research than all pediatric cancers combined. I’m not motivated to draw away adult cancer research, simply as a teacher I must speak up for those quiet voices that don’t have dollars chasing them.

So what happens when research does result in a breakthrough in the lab? How does it make it’s way to the clinic? And what happens if the patient is under 18? It is said that the drug “pipeline” to FDA approval averages 5-7 years. No longer are clinical trials desperate last ditch efforts. Increasingly they represent the “latest technology” and can NathalieHospital_edited-1actually be a better first-line choice in some instances. Unfortunately our systems create a scenario where the vast majority of trials are set with an age limit of 18. A patient with a rare disease such as Nathalie (now, age 15) loses out on a primary weapon to combat her disease. It is not uncommon for pediatric trials to be launched after the drug has already received FDA approval. Pediatric trials have far fewer patient slots available and often err on the side of highly conservative dosage and inclusion criteria. Our clinical trial models are due for a major overhaul. They are often modeled after past templates that have gained approval. We need more “2.0 clinical Trials” like the Lung MAP trial that uses biomarkers to steer lung cancer patients flexibly down various paths and meds based on their unique tumor.

But what about Compassionate Use Access? Isn’t that sort of a moral safety valve for a company to provide a life-saving medicine to a patient who may not be trial eligible? The process exists and is supported through the FDA but is dependent from the start on a company’s willingness to provide the medicine. Consider the breakthrough area of  PD1/PDL1 checkpoint inhibitors. This class of drug has shown exciting game changing NathaliePortrait2results and has resulted in perhaps some of the largest clinical trials in history. The potential has dominated ASCO’s Annual meeting two years in a row. So how many patients have received compassionate use access of this class of drug being tested by four major pharmas? I challenge you to find a single patient. Unfortunately I can list off those who have died asking. Nathalie’s oncologist requested access for her based on her dire need and scientific clues suggesting efficacy in September 2013. I’ll let you be the teacher and assign this system it’s grade.

It is time to roll up our sleeves. It is said that cancer will touch 1 in 3 Americans. It is time to close up these faults with better ideas and new systems. It’s time to Step Up and invest in research that will pay huge dividends.

Author: Nathan Traller

Nathan Traller is a teacher and patient advocate along with his daughter Nathalie. Find out more at www.4Nathalie.com Read Nathalie’s blog at kickASPS.wordpress.com

Editor’s Note: Here’s how you can help: 

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Compassionate Use_edited-1Compassionate Use 

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Want to Make a Difference?

LauriesMug_edited-1Maybe, I am a little old-fashioned with my “mug shot” and in a few other ways, like this one: It is so amazing to me that in today’s “connected” world, there are so many people who you will work closely with but never meet–or never even talk to for that matter, with sole reliance on e-mail. Very weird to me, but very modifiable.

Cac2PageFortunately, for me, I finally had the opportunity to meet some of my comrades in the childhood cancer community in person, thanks to the Coalition Against Childhood Cancer (CAC2) Annual Summit that was held in Our Nation’s Capital on June 25, 2014.

June was an extremely busy time for me, with both work and family commitments. However, as I always say (and I say it A LOT these days), you make time for the people and things that are important. And attending this meeting was VERY important to me. No way was I missing it, barring catastrophe. There were some people who I just had to meet, and it was where I needed and wanted to be. We shipped the kids off to “grandparent camp”, and off I went.

If you are not familiar with CAC2, it is an organization formed in 2013, or should I say a collection of childhood cancer organizations (and people like me), providing opportunities to form a unified front for such an important cause that does not get enough attention. The main mantra for CAC2 is to put children with cancer and their families first in everything we do, and there are 4 main areas or “pillars” that the organization focuses on: awareness, advocacy, family services, and research.

I am not affiliated with any specific childhood cancer organization but was able to join as an individual member. Most members of CAC2 have a personal connection to a child with cancer, but I do not. I am just someone who believes that children with cancer should be a priority population for research, but I know enough to know that they are not. So I joined the childhood cancer community in general, and CAC2 in particular, to find ways that I could help in some way–any way.

Laurie&BillIt was quite the story, if you can’t tell by all of the moving hands!! That’s me with another individual member, William Burns. He was an invited speaker but also wanted to come to personally thank CAC2 for the outpouring of help that it’s members provided in support of his nephew Josh Hardy, of the #SaveJosh campaign. Josh was dying and needed a drug that was in a clinical trial but not available. Without it, he was going to die.  The CAC2 group ran a successful social media campaign and got the drug released to him in time.

To say that it was worth a trip was an understatement. I got to meet several people who I have been working with over the past year, in a variety of different ways. I got to meet lots of new people, wonderful people who all share the same mission: To put an end to the suffering and loss that comes with childhood cancer, by making the kids the priorities that they deserve to be. There are a lot of exciting things in the hopper, and I believe that there are lots of good things to come—not for me, but for kids with cancer.

The meeting itself was a 1-day event, consisting of a series of presentations by individual speakers. There was also an enlightening panel discussion about barriers to drug development that included representatives from the National Cancer Institute and pharmaceutical industry. The discussion got lively needless to say—some questions made it into a bit of a “hot seat”, but everybody left unscarred with the help of a good, effective moderator.

LauriesPanel_edited-1 Distinguished panel, discussing barriers to drug development for childhood cancers

Overall, in listening to the presentations and discussions, it couldn’t be any more obvious that we are all on the same ship—that every single person in that room was longing for more research into better treatments for childhood cancer, but that insufficient funding is standing in the way. There are so many people who are so passionate about childhood cancer, beyond those who are formal members of the childhood cancer community. But it is equally obvious that there is no quick fix. The “system is broken” and has been for some time. There is a lot more noise that needs to be made via a unified call to action, and that is where CAC2 can and will make a difference. It is so humbling to be part of it, I am so appreciative to those who pointed me in the right direction. An extra loud shout out to Richard Plotkin of the Max Cure Foundation, Vickie Buenger (CAC2 president amazing woman extraordinaire!), and Beth Anne Baber of  The Nicholas Conor Institute (TNCI) and her dad, Joe Baber (Team Captain, Four Square).  Crossing paths with “ya’ll” led me straight to CAC2, and for that I am so grateful!

If you are passionate about childhood cancer and are just learning about CAC2 now, you should join me. Not to be pushy, but you really should join—no better time than the present. You will be expected to get involved in some way, and there are lots of options so you are sure to find a way to be productive and make a meaningful difference. One person can and will make a difference in this setting. And you are sure to meet some real-life heroes, who will inspire you to work harder with whatever amount of time you can find. You can find the time, I did and will continue to do so.

For more information, please contact me directly (laurie.orloski@pharmite.com, or you can easily find me on LinkedIn or Facebook) or check out the very awesome CAC2 web-site: http://cac2.org/

Spread the word by sharing, we need more volunteers, maybe someone you know would LauriesMug2_edited-1want to join CAC2 if they only knew about it! No personal experience with childhood cancer required….

I started with the mug and am going to end with it, because the mug knows best.

Author: Laurie Orloski

 

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Seeing is Believing:

WhyICare_edited-1I am planning to write a series of posts that pertain to clinical issues, like palliative care services for improving outcomes in childhood cancer, but I wanted to take a step back and give some background first, especially about my time at St. Jude Children’s Hospital as a visiting student/intern back in late 1997. As I detailed in my introductory post from last year, “What’s MMMT got to do with it?,”  I have no personal experience with childhood cancer but joined the childhood cancer community after watching my mother suffer from a cac2logovery rare and aggressive gynecologic tumor. Cancer is bad to begin with, but my mom’s ordeal was extra bad on so many levels. No one should go through that—not my mom, and certainly not a child. I am a mother of two young girls and follow the “kids first” mantra. Kids first, always, right? Cancer research being no exception, right? But as you know, kids are NOT first, and that is so WRONG! I cannot understand or accept that, and that is why I am here. In addition to being a blogger, I am also an individual member of the Coalition Against Childhood Cancer (CAC2), where I have gotten involved in several different ways. I don’t know how I find the time, but I do, and I sleep better at night because of it.

I hate cancer but love oncology, meaning that cancer is Public Enemy #1 in my book, yet I am fascinated by tumor biology and the nuances of cancer drugs. My degree is in pharmacy, and I was trained as a clinical oncology pharmacist. Many people have never heard of “clinical pharmacists”, who practice in the hospital/clinic setting, but I can assure you that these folks do exist and are very different than the more conventional “retail pharmacists”. Ask any of my former classmates about me, and they probably would say that I was “into oncology.” As discussed in my prior post Gold vs Pink, this interest and passion stemmed from my maternal grandmother’s battle with breast cancer, which did not have a happy ending. Anytime I would hear the words cancer or chemotherapy, my ears would perk up, because I wanted to have a better understanding of what cancer is and why it is so darn hard to treat. So I decided to devote my training to oncology pharmacy. Among the many requirements to obtain a pharmacy degree, a big one is the need to amass hours as an intern at a pharmacy. Most students opt for the typical retail experience, but I did 100% of my nearly 1,000 hours at the outpatient pharmacy of the LaurieChemohoodUniversity of Pittsburgh Cancer Institute. Much of my time was spent “under the hood” mixing chemotherapy and shadowing the pharmacists by checking orders. Because the outpatient pharmacy also housed an Investigational Drug Service, I also got some clinical research experience. I spent lots of time in an old closet with no windows, counting tamoxifen tablets as part of the drug accountability for numerous breast cancer studies. I quickly became very knowledgeable about cancer drugs, despite enduring some of these mundane tasks that nobody else wanted to do—and thus were delegated to the lowly student.

I had gained massive experience in adult cancer treatments during those nearly 4 years as a student intern. I also had an inherent interest in general pediatric medicine. So in planning my 1 year of clinical clerkships/rotations required for my doctorate of LaurieID_edited-1pharmacy(called a “PharmD”) degree, I jumped on an opportunity to travel to Memphis to do a pediatric oncology rotation at St. Jude Children’s Research Hospital. That was the 6 weeks leading up to Christmas 1997.

My time at St. Jude was the most eye-opening, unforgettable 6 weeks of my life. I often wonder, if it were not for my time at St. Jude, would I have made my way to the childhood cancer community as a volunteer? I would say, probably not. I was assigned to the Leukemia/Lymphoma service. All of the children without exception were treated per-protocol in a clinical trial. My job, as a clinical pharmacist in training, was to round with the medical team, review all of the patient charts, and recommend any necessary adjustments to supportive care aspects. I’ll explain more about clinical pharmacy services in a later post, but I will just note that my responsibilities were to work with the physicians and nurses to ensure optimal management of things like pain, nausea and vomiting, diarrhea, bone marrow suppression, and nutrition. I remember our youngest patient on service, a tiny infant diagnosed with cancer shortly after birth, which shocked me because I did not realize until then that babies get cancer. I also remember a boy that I encountered in the emergency room, who was about 6 years old and had been hit in the arm playing baseball, in that exact spot where he had a tumor. It was only discovered because of the imaging done as the result of his injury. I was young, had no children then, but I felt for those parents and was frightened by that chain of events. I remember thinking, how do you deal with something like that, where a child gets injured playing a sport and winds up with a diagnosis of cancer that very same day? During my time on service, the leukemia/lymphoma patients were “doing well” overall, meaning they were fairly stable and tolerating treatment as best as could be expected; however, the acute myeloid leukemia (AML) subset was having a tougher time than the rest. The mood, overall, was tenuous at best. There were some things happening on the Solid Tumor service. Two children who had been fighting for quite some time had passed away. Keep in mind that this was during the holiday season, so it made the unbearable all the more heart-wrenching for the staff who had come to know and love these kids.

I’ll close with the encounter that I remember most vividly during my time at St. Jude. During one of my last days there, I was asked to deliver and provide patient/parent education on some discharge medication, some oral antibiotics and a few other fairly routine meds. As I started yapping, I locked eyes with the child’s mom who looked so beyond exhausted and stared back with the blankest look, she looked utterly traumatized. interior_1_525_350I knew that there was no way that she was really hearing a single word that I was saying, that there was no way her brain could process one more piece of information. That look really stuck with me, how those parents had been through hell and that it was far from over—and they knew it. In my prior rotations, the time of discharge was a fairly upbeat time, people were relieved to be getting their freedom back. In this case, however, these parents were leaving the hospital they had been practically living in – but leaving with a child who very much still has cancer. There was no relief or freedom to be had.

Needless to say, those 6 weeks at St. Jude were emotionally draining. But they gave me perspective that I would never have gained elsewhere, and I am a better person because of it. Somtimes you have to see to believe—by seeing those kids and parents, I know that kids must come first in the cancer research arena. Maybe more people need to see it to believe it too, maybe that would get people like me – those who have not been personally affected by childhood cancer – to see how improving childhood cancer funding needs to be a national priority, not just a priority for those who have been dealt the blow firsthand. It is not like it would take 6 weeks for the lightbulb to go on, 6 minutes would be enough for sure.

Author: Laurie Orloski

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Five Reasons Why You Should Join the Fight Against Cancer

Amanda Haddock echoes the thoughts of a few other visionaries in the cancer arena. “We live in the Information Age, but research information is in silos that are hard to access. We need the power of the data in every researcher’s hand.” Read her very insightful blog post. Team Captain

This Grey Matters Blog

20140629-230537-83137451.jpgWhen we first announced the name of our foundation, people thought we were a little crazy. I understand that the name is unconventional, but so is our goal. It is different. Some might say impossible. So our name reflects not only the enormity of the task, but also that we plan to be successful.

Scientists have been fighting cancer for decades. We have made some advances to be sure, but we are a long way from declaring victory. There are many warriors in this battle, but no united force bringing them together. We live in the Information Age, but research information is in silos that are hard to access. We need the power of the data in every researcher’s hand.

I believe that most people believe, like I did, that there are vast resources available to cancer researchers. That is not the case. There are excellent pockets of data out…

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30% Funding Cuts

30%_edited-1Just weeks before she died of a brain tumor, ten-year-old Gabriella Miller put it best. When asked what message she would give to the nation’s political leaders about the need for children’s cancer research, she responded in a YouTube video that went viral: “Talk is bull___! We need action.”

StepUpsadstate_edited-1Cancer kills more children in the U.S. than any other disease — more than AIDS, asthma, diabetes, cystic fibrosis and congenital anomalies combined. Yet government funding for pediatric cancer research through the National Cancer Institute (NCI) has declined by 30 percent over the last decade, with further significant cuts looming. Even without these cuts, only 4% of the National Cancer Institute (NCI) budget goes to pediatric cancer research.

This lack of government support is hurting children already struggling for their lives. Since the number of children and teens in this country diagnosed each year with cancer is a small fraction of the number of adults diagnosed, drug companies see no profit in children’s cancer, and largely ignore it. Thus, while the pharmaceutical industry provides up to 60% of all research and development for adult cancer, it provides virtually none for children’s cancer, making pediatric cancer research almost entirely dependent on government funding through the NCI.

71LifeYears_edited-3True, there have been tremendous gains in survival rates for children with cancer, from 30 percent some decades ago to about 80 percent today. Such statistics are both hopeful and misleading: “survival rates” for cancer are typically measured after five years. For adult cancers, where the average age of the diagnosis is the late 60s, five years can make all the difference; for children, who on average are diagnosed at age 6, five years means not making it to high school.

What’s more, three out of five children who survive cancer suffer chronic side-effects, and many face life-threatening illnesses such as heart failure and secondary cancers. The reasons are clear: the significant gains in childhood cancer survival rates are the result of giving children “hand-me-down” drugs developed for biologically distinct adult cancers. Children’s bodies can withstand more surgeries, radiation and toxins, but for those who make it through the cancers and the immediate treatments, it is hardly surprising that the long-term side-effects are severe.

Without the profit incentive or sufficient government funding, few if any new drugs are developed for children. Despite revolutionary changes in science and technology, the FDA has approved only two drugs over the last twenty years specifically for pediatric cancer, and one-half of all the chemotherapies used for children’s cancers are over 25 years old.

GabriellaAppropriate_edited-2The response from our political leaders has been talk, but sadly, no action. In reaction to Gabriella’s plea on YouTube, Congress last year did pass the “Gabriella Miller Kids First Research Act,” which would provide about $12 million per year for a variety of pediatric diseases. However, there are reasons to doubt that the act, pushed by now-deposed House Leader Eric Cantor, will ever lead to any actual funding in the present do-nothing Congress. In 2008, both houses unanimously passed the “Conquer Childhood Cancer Act,” which authorized $30 million a year for pediatric cancer research, but they never bothered to allocate more than a miniscule fraction of that sum, and then failed to reauthorize the Act when it expired last year. No wonder ten-year-old Gabriella cursed.

Recent scientific advances have uncovered much of the molecular and genetic makeup of childhood cancers, making it possible to develop therapies – precision medicine – that directly target cancer cells and spare children’s developing bodies. Yet while the NCI will direct tens of millions of dollars in funding this year to take advantage of the latest breakthroughs and technologies for adult cancer, there is no such funding planned for children’s cancer. This is despite the fact that support for pediatric cancer research has provided one of the best returns on investment of government funded medical research.

Children’s cancer advocates are starting to mobilize. Over 250 advocates from 34 states will descend on Capitol Hill this week, representing over 60 childhood cancer organizations. At the same time a coordinated childhood cancer community social media effort will send thousands of advocates virtually to storm Congress under the campaign banner #StepUp: More Funding for Childhood Cancer Research. All advocates are working together to send the message that suffering children must no longer be the collateral damage of partisan budget battles. While it’s too late for Gabriella, we will continue to press on until her call for action is heard.

Author: Steven Crowley

Originally published in TheHill (  @thehill on Twitter | TheHill on Facebook)

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Ellie’s Hats

Ellie'sHats_edited-1Last year, school had started once again as usual, but for the first time in the PE class that I was JayandEllieteaching, I had a cute little girl who was bald headed. Ellie started kindergarten as a brave, beautiful girl without hair. She was on chemotherapy, battling acute lymphoblastic leukemia. She loved wearing hats. When I saw how much she liked hats, I decided to add a few more crazy hats to her collection for Christmas. After sharing my plan with friends , family and neighbors, I found that they wanted to provide hats too. Hats started rolling in, and soon I had gathered more hats than even Ellie could wear. Realizing that many children facing the trials of childhood cancer are treated at Inova Fairfax Hospital, I launched a campaign to collect enough hats for all of the children being treated for cancer at the hospital. Over 140 hats were delivered to an annual Christmas party, where they were handed out to all kids in attendance. Upon leaving the party , Ellie said to her mom, “I think they like my hats!” Seeing the joy the hats brought to Ellie and others was the motivation I needed to start our Ellie’s Hats organization.

Ellie’s father shared his thoughts, “I know it’s easy to look at all this and ask, what is the big deal with giving hats? Of course, our daughter’s hat collection is not going to cure her cancer. But that’s really not the point. It’s an example of something that has helped make SeptCountTwitterthis season in which she is fighting cancer less hard for her. Ellie’s crazy hats have allowed her to feel more like a normal kid when she is experiencing things that are not normal at all, that are thankfully not what most kids will have to experience in their childhoods. These hats mean something to her. And based on what I saw at a Christmas party at the hospital when donated hats were given to all the kids in attendance and what I’ve heard from our clinic staff regarding the numerous hats distributed there, these hats mean something to many other kids as well. After Ellie beats her cancer, I am hopeful that hats will continue to make their way to the heads of other children fighting cancer in the years to come. I haven’t begun to consider how I will view this long cancer season when I look back years from now, but Ellie’s Hats would make a neat legacy.”

Some feedback that we have received

“I just want to say thank you so much for the hats! The patients and parents alike absolutely LOVE them!”

“The kids LOVE the hats…. The nurses think they are beautiful.”

“Dylan and Daniel’s hats came in today and they love them.”

“Thank you for your cause, it is making a difference”

“We received a special little box of hats in the mail today. Oh, were the kids excited! Thank you! “

“My boys love their new hats! I think Ellie’s Hats is an amazing program. We are honored to have received hats. Thanks so much!”Ellie

Since we started Ellie’s Hats we have seen classes and schools hold hat drives, teenagers raise money, workplaces donate, kids request people bring hats instead of gifts to their birthday parties, and lots of other creative ideas! All of these initiatives bring joy, but also spread awareness about childhood cancer and for that we are so grateful. We must be doing something right! I will never forget the little girl who started it all. Thank you, Ellie!

Author: Jay Coakley

Editor’s Note:  Here’s a great example of someone who does not have a child with cancer, but cares and wants to help.  What a great role model for others.  The childhood cancer community thanks you, Jay!  If you would like to help Jay with Ellie’s Hats, you can visit their website and their Facebook page.

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A Home Away From Home

LadybugHouse_edited-3

Meet Suzanne Corey Gwynn. She’s going to build a house in Seattle, Washington.  It’s not going to be a small little house, but a big house.  Suzanne is not an architect with a blueprint or even a carpenter with a hammer.  She’s a registered nurse with a vision and the house she is going SuzanneGwynn_edited-1to build is no ordinary house.

Suzanne has spent the last 32 years being a nurse and intensely caring for children and young adults with life limiting and very serious illnesses. A huge number of the patients she cared for were from other states that do not have a children’s hospital, therefore many   of the families were forced to temporarily relocate to the Seattle area for specific specialized care that was unavailable in the region nearest to their home. She has watched the children deal with their illness and watched their families while they attempted to be there and support their child and live away from home near the hospital.

The vision that Suzanne has is to build a palliative care and hospice home to serve all the families who need it so desperately.  Seattle Washington is a unique and prime location for a home to be established, specifically because Seattle’s premier hospital systems serve   patients from the states of  Washington, Alaska, Montana, and Idaho. This is where her “Ladybug House” will serve a special purpose for these patients and families. It will be a place for families from near and far to live together in community, growing and supporting each other through life-limiting illness.

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Ladybug House is a pioneering service that will add to the palliative care that already exists in the hospital setting by creating an environment where that same level of care can be provided in a community home setting equipped to care for complex diseases.  One priority in current palliative care is enabling people to be cared for in the place of their choosing and the hope is that patients and families will find Ladybug House to be the best choice during this essential time. ladybug_edited-1The model of care at Ladybug House will be holistic, integrative, and life-promoting; these elements together will create a health-enhancing cooperative effect for patients as well as their families and friends.

We salute Suzanne in her efforts to give specialized care to children and adolescents  with life limiting illnesses. The service that Ladybug House will provide is so greatly needed. In the United States there are over 4,000 adult hospice care facilities and over 200 just for pets. Only 3 hospice care homes exist for children: George Mark Children’s House in San Leandro, CA, Ryan House in Phoenix, AZ and Crescent Cove in Minneapolis, MN. In the United Kingdom there are  53 homes and our neighbors in Canada just built their eighth home.  Hopefully, Ladybug House will be the first in the Pacific Northwest   with a long chain of others to follow.

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ladybug_edited-2Editor’s Note: Because of her efforts and the unique home she plans to build, Suzanne was invited to the White House on June 18, 2014 where she was able to collaborate with others and garner more support for her vision.

Suzanne’s dream has already attracted an amazing team of volunteers. If you would like to know more about Suzanne’s vision or be a part of it, she can be contacted at suzanne@ladybughouse.org.

Author: Joe Baber

Last update: 11/5/2019

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Your child has cancer, what next?

You have just been told, “Your child has cancer and they are going to need a lot of care.” No doubt about it, they will, but so are you. In order to properly take care of your child, as the parent you must take care of yourself first. In this article, reprinted from the Courageous Parents Network (CPN), your will learn three key ingredients that will prepare you to give the best care possible to your child. You will also have the opportunity to find a great resource in CPN that you can to use to navigate you on your new journey.  Joe Baber, EditorBestCare_edited-1

Each child is an individual and every family has its own particular patterns, needs, ways of coping and values. Care choices that feel right and work for one family may not feel right or work for another. Thus there is no one formula for caring for a child with a life-limiting or threatening illness. (Yes, the title is misleading!) There are no ‘right choices,’ which also means there are no wrong ones either. However, I am bold to strongly encourage parents to include three ingredients in the care formula they develop for their family, regardless of the specifics of their child’s illness and the treatment protocol. These ingredients are, in my lived experience and that of other parents with whom I have spoken, incredibly helpful in ensuring the greatest peace of mind and spirit and minimal regret when making choices for the child. The addition of these ingredients can have lasting impact on the family experience and how the family writes the narrative of their child’s illness journey, life, and, if it occurs, death.

FlaskBlue_edited-1Ingredient #1: Pediatric Palliative Care  If you have poked around the Courageous Parents Network web site, you know that promoting pediatric palliative care is central to our work. Why? Because we have experienced first-hand the value it adds to the child’s care plan and the impact it has on the entire family. My daughter Cameron received palliative care from her primary care doctor and a team of nurses who cared for her at home. I could go on and on about what it is and why it matters, but you can read about it on the CPN site. However, if you go no further than this blog, here is what I would have you know most about palliative care— Palliative care is NOT END-OF-LIFE care—that is hospice care. It does NOT mean you’ve given up hope for survival or quality-of-life. Quite the opposite: it is an extra layer of care that ideally begins at diagnosis and that helps a family identify their care goals for their child and their family. It looks beyond the disease itself to support the psychological and emotional and spiritual needs of the entire family. It reduces patient and family stress. Its goal is QUALITY OF LIFE. Palliative care specialists share a family’s hope that the child will survive and they also work to hold and pursue the family’s care goals so as to keep the parents oriented when things start feeling crazy or confusing. Palliative care just makes everything better.

FlaskRed_edited-1Ingredient #2: Grief Counseling   You may say that therapy isn’t for you, or that you don’t have time to take for yourself, or that you’re in coping mode and aren’t officially grieving. I would encourage you to think otherwise, to open your mind to the value that grief counseling can offer you, your spouse/partner if appropriate, and thus, by extension your child and entire family.

When your child is diagnosed with a life-limiting illness, you immediately start grieving. Grief counseling is a place to park your sadness and anxieties and to work through your concerns and wishes to figure out what you really want for your child and family. It is a place to grieve, to release your emotions, and to express your wishes. It is an opportunity to get really really dark and to then find signs of light. It is a place for two parents to wrestle with their respective differences in a safe and facilitated environment and hopefully find common ground.

Grief counselors come in many forms: psychologists, social workers, hospital chaplains, ministers, rabbis, other spiritual leaders. You’ll need to find one that works for you. There are some (funny) bad stories out there from parents who had a few false starts in their quest for a grief counselor. My husband’s and my first attempt, for example, was a woman who met us in her home office and started dead-heading her potted plants while she pretended to listen to us. She also told us that she understood what we were going through because her granddaughter had had a scare with illness but luckily the test was a false positive and she was fine (hello?!). Another parent shared with me that in her very first attempt at counseling with her husband the counselor wanted to know what impact the son’s illness was having on their sex life! (Hellooooo???!!!!) Please, laugh at these stories but do not be daunted! We found a fabulous counselor on our second try and we credit her with keeping us sane, keeping us married, and giving us a road map for caring for our daughter all the way through to her end-of life and beyond. She also counseled our older daughter. We first saw her once a month (and turned it into a date), then every other week, and by the end, we were seeing her every week. (I like to joke that I would have moved her into the house if I could have!) There’s no requisite number of visits, of course: once a week, once a month, every-other-month, on-demand as needed. What matters is that you have someone you like who practices active listening and helps you hear yourself, hear your spouse/partner, and find your way. Remember, like the flight attendants say on the airplane, you can’t truly take care of your child if you’re not taking care of yourself. Counseling is a gift you give yourself, your partner, and your family.

To find a grief counselor, check with your primary care doctor, the palliative care team, the hospital where your child is being seen, your place of worship, your friends. It can take a few false starts but I promise you will thank yourself for the effort. Grief counseling helps you feel like you’re in control and truly parenting.

flaskGreen_edited-1Ingredient #3: Other parents who are walking in your shoes   Parents caring for children with life-limiting illness need the company and counsel of those who they know really really really understand, people who will answer questions head-on without reservation or platitudes, who will speak frankly about the hard stuff—like how they feel trapped or what end-of-life looks like—who will use inappropriate humor unapologetically to offset the pain. These people are not the professional clinicians who, with rare exception, have not actually walked in these parents’ shoes: rather, they are fellow parents whose children are also living with a life-limiting illness. And it doesn’t even need to be the same diagnosis. The symptoms are only a piece of the puzzle. The emotional roller-coaster, the fear, the sadness, the anger, the anxiety, the impatience, the daily grinding stresses are the other big(ger) piece that all of these parents have in common. In her memoir, The Still Point of the Turning World and a related New York Times op-ed, Emily Rapp refers to these parents as Dragon Parents: “To prepare throughout a child’s whole life for the loss of that boy or that girl, and then to live with it, takes a new ferocity, a new way of thinking, a new animal.” Ideally, Dragon Parents can find each other in actual support groups where they meet periodically to share and support each other as equals. One of CPN’s advisors refer to the active dynamic in peer support as ‘horizontal lines of communication.’ In my own personal experience, we found this peer support immediately in my brother- and sister-in-law whose son (my nephew) Hayden had the same degenerative disease and was a year further along. We also found it in the annual family conference for National Tay-Sachs and Allied Disease. But if physical groups aren’t a possibility, Facebook groups can fill the gap and bring you into community with like parents around the world. If you can find yourself such a group or even one or two parent allies, it will be a life-line that helps to normalize the abnormal.

CourageousParents_edited-1If we could, Courageous Parents Network would personally find each family a palliative care team, a grief counselor and a parent peer-group. Unfortunately, this isn’t possible, and so Courageous Parents Network tries to bring these resources virtually to parents wherever they are: at home or in the hospital. The CPN site includes information about “anticipatory grief”, the value of palliative care, what “complicated living” looks like, and a framework for making difficult decisions. Our video library features a gifted and experienced grief counselor who frames and normalizes the broad range of issues that parents confront. And perhaps, most importantly, the library features parents talking about their experiences and feelings around these issues, providing a virtual and asynchronous support group. (We are also building a CPN group on Facebook. The goal of all of these resources is to shine a light on the dark places and help parents see that they are not alone and that they can do the hard and important work of caring for their child all the way through, with grace and open hearts and faith.

Author: Blyth Lord

Special thanks to Blyth Lord, Founder of the Courageous Parents Network, for allowing Four Square Clobbers Cancer to reprint “#8—Three ingredients for the best Care Formula ever.” From our point of view, we believe there actually are four ingredients and she may have over looked the forth. The forth ingredient is Courageous Parents Network.

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Cameron Week

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Editor’s Note: It is with deep respect and profound appreciation for mothers everywhere that Four Square Clobbers Cancer has  chosen Mother’s Day to present Blyth Lord’s touching and tender article from her Courageous Parents Network.

Today is Hump Day in Cameron Week. Cameron Week refers to the five days in May between my daughter Cameron’s birthday – May 4, 1999 – and the day she died – May 9, 2001. Much like spring in New England where we live, Cameron Week sneaks up on us. One minute we’re going about our business as a family of four, and then Wham! we are intensely reminded that we are a family of five with a hole in the middle. Cameron would be 15 this week, but my husband Charlie and I and our daughters Taylor (17) and Eliza (13) agree that she will always be a beautiful and precious 2-year old to us.

I was having lunch with one of Courageous Parents Network’s amazing advisors yesterday and she asked me how we handle Cameron Week. I told her that this year we celebrated her birthday by eating a delicious chocolate cake at dinner (an exceptional treat as I never bake). We went around the table and each said something about Cameron. I went last but when it got to me, I couldn’t speak. I was crying and there were no words. My longing for Cameron’s physical being overwhelmed me and I was undone. Any parent whose child has died knows this undoing: the painful desire to touch one’s child again and knowing that it is one of the few things in this world that Can Not Happen Ever Again. The impossibility of this can make me feel a little crazy. Indeed, I can see how grief could turn a person mad. Thus, I have learned not to pay much attention to this piece of it – to push the longing aside when it starts to rear its head – because honestly there is absolutely Nothing To Be Done and a person can’t sit around all day crying for the impossible. But on Cameron’s birthday, with her photo sitting in the middle of the table, a piece of chocolate cake to my side, I couldn’t ignore it. It was staring at me, I stared back, and I wept.

The other thing I told this friend about Cameron Week is how perfectly situated I think it is. Cameron Week comes around in early May when spring arrives in New England and the glorious green leaf buds burst out on the trees. I remember taking a walk in the woods near our house a few days after her 2nd birthday and a few days before she died, when we knew she was in her last week, and finding the juxtaposition of spring coming while Cameron was leaving to be interesting. Interesting and fitting. As my first blog “Surrender” notes, when she was first diagnosed with her fatal disease, I couldn’t fathom how the natural world was proceeding as always, heedless of our tragedy. But now, 18-months later, I found Nature’s persistent optimism comforting. Spring is Nature’s most hopeful time of year and this hope was soothing to me. Our grief counselor had helped us understand that as Cameron’s body was shutting down, her spirit was getting bigger and bigger. Soon it would get so big it would leave her body and go mix with Nature’s energy. The notion that her energy would go into the universe and mix with the energy that brought us leaves and tulips and birdsong was a good notion.

CourageousParents_edited-1Cameron Week 2014 is a little different for me in that it marks the one-year anniversary of my leaving my job in television production to found Courageous Parents Network. I have spent the last year meeting the most incredible parents and some of their children, listening to them, learning from them, admiring them. I spend my days talking with parents whose children are living with a fatal prognosis or have died, and I am nourished by their stories and their wisdom. Given all of this, I was a little surprised by how hard I cried on Cameron’s birthday this past Sunday, (and who knows how I will be this coming Friday when we recognize the anniversary of her death). I witness other parents’ grief every day. But this year, Cameron Week has reminded me that I am first and foremost a mom who really misses her daughter.

God bless you Cameron.

Author: Blyth Lord

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Bear with Me

bearwithme_edited-1I was a nurse for 29+ years and have loved the opportunities that I had to care for children with cancer during that time.  Knowing the role of a nurse and what an emotional toll childhood cancer takes on children and their families,  people would often ask, “How can you care for these children?” The truth is that I never wanted to do anything else.

WorldwideDuring my time as a nurse, I discovered several truths: (1) Many people are not aware of the large number of children being diagnosed with cancer until they have a child that receives the awful, and surprising  diagnosis. Today, each and everyday, 43 children will be diagnosed with cancer.  (2) Childhood cancer is not as  rare as most people think it is. Worldwide, close to a quarter of a million children will get cancer each year.  Many children are being diagnosed with thyroid, kidney, and brain cancers that were formally known as “adult cancers.

pinkbaseball_edited-1As someone who has been very closely involved with precious children being treated for cancer and watching what their families have to endure, it has angered me that so many companies have items that promote breast cancer awareness and other diseases, but seem to ignore the number one disease killer of children.  I am also angered that baseball teams do pink on Mother’s Day for breast cancer and blue on Father’s Day for variety of men’s cancer conditions but overlook childhood cancer and it’s gold ribbon especially in September.

Awareness is needed for childhood cancer just as it was needed for HIV Aids, and Breast Cancer.  It is the awareness that will eventually lead to the funding that is so desperately needed for pediatric cancer research. If people were fully aware of the plight of children with cancer, I am sure the National Cancer Institute would be spending more than 4% on pediatric cancer.

bearcure_edited-1Many times when a child is diagnosed or in treatment, friends and families don’t know what to do, so they send  or give them stuffed animals, mostly bears.  The child gets attached to his bear and it goes wherever he goes.  It provides comfort. Sarah Chana Radcliffe, M.Ed., C.Psych. Assoc said, “A teddy bear can provide comfort through hard times. When a child suffers a loss or when he or she is feeling BearWhy_edited-1fearful or upset, the inanimate object has the power to soothe and comfort. The animal “looks” as if it understands and cares, which allows a child to feel supported while he or she is all alone.”

Additionally, a bear for childhood cancer awareness would be a bear that could be purchased for children to provide comfort during their treatment or a family could purchase to honor a child that has lost their life to the monster known as childhood cancer. No kid can fight cancer alone and with the recognition that a bear or “special friend” can be so important to children during 2014-04-18 10.48.26 amtheir treatment for cancer, I decided  to do something. In order to improve awareness, and to benefit children with cancer, I started a petition and Facebook page (so far, we have shipped 350 bears to kids). I want to appeal to a company to manufacture a childhood cancer awareness bear. If you have not already done so, please sign our petition by clicking on the  photo to the left. As of March 30, 2015, we only need 750 more signatures to reach our goal of 20,000!

BearMarket_edited-1If they made an awareness bear, companies that profit from the sale of stuffed animals could do themselves a big favor and also help children with cancer at the same time.  I believe they don’t realize the profit potential in having a childhood cancer bear. Potential manufacturers may only be looking at the annual diagnosis rate. They may not even be aware that there  are over 40,000 children undergoing treatment now and there are 400,000 survivors in the United States alone! Can you imagine how many bears could have been sold if they were available at the time of diagnosis?  If they offered bears in blue, pink, yellow and brown, each with a beautiful gold ribbon, think of how many they could potentially sell?   A lot of kids would want to own all of them. The possibilities are endless!

Author: Lynne Stieflerbounceballauthor

Editor’s Note: Lynne is an unusual person. She has no children or grandchildren with cancer, but she is totally involved in helping them. She even shaved her head for the St. Baldrick’s cause on April 19th, 2015, at Mickey Finn’s in Victor, New York! This was her seventh year in a row!   Thank you Lynn for all you do for children with cancer.

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RARE is not a dirty word

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Editor’s Note: No one in my childhood cancer community, including me, likes the word “rare” when it used to describe the disease. I met Rob and three others from the childhood cancer community at a three day RDLA event in Washington, DC. One of the speakers I listened to at the conference was a reporter from the Wall Street Journal and she spoke of a really, really rare cancer her mother had. She said only 7,000 people, yes that’s right, only 7,000 people per year were affected by the type of cancer from which her mother eventually died. At that moment, I realized my grandson’s neuroblastoma which affects 600 kids a year was in fact rare. My experience at the conference mirrored Rob’s which he very eloquently describes below. By  the way, at the conference we met Danielle Leach  from Inspire.Com and she suggested the title for this article.    Team Captain

rdd-logoThis was my second consecutive year at the Rare Disease Legislative Advocacy Days and the experience did not disappoint me. RDLA has the same challenges with rare populations as we do with childhood cancer, some of them being FDA reform, low or nonexistent funding and lack of drug development. The atmosphere at RDLA is very comfortable for the childhood cancer advocate. We are welcome  as part of the team and it seems that they recognize that our challenges are much in line with theirs. Statistically, the childhood cancer community fits within the scope of rare disease with the guideline being less than 200,000 diagnoses per year and includes 7000 other diseases. There is a lot that this group does well but there are a few in particular that the childhood cancer community can embrace and aspire to. The 2 things that I wish to highlight from the experience are education and access.

The schedule surrounding the RDLA week was a busy one. At some times choices were offered of topics at different venues to fit your interest. We attended as many as we could and the education that was offered through the sampanel discussions and presentations were unprecedented in my 6 years of advocacy experience. The opening night was a documentary on “progeria” that educated us about this disease that had no treatment. The documentary is a case study of how a single family rallied around this disease and pushed a drug through to market that is actually adding about 5 years to these kids life expectancy through drugs that improve their vascular strength.

After the documentary, the panel discussion opened with introductions, panelists included Dr. Francis Collins, Director, NIH. I am proud to announce that the 5 attendees from the childhood cancer cause in the audience lead the Q & A session with Dr. Collins and no one was holding anything back but we were all respectful at the same time.  I actually had a short conversation with him after the event and he was very receptive to our challenges and assured me that our advocacy efforts are necessary to get the changes we need for our patient population, for our kids.

rdla logoIn conclusion, I can attest that the first year I was a bit star-struck. This year I knew what to expect and was ready to engage. The experience that was led by RDLA is one that all serious advocates should attend to shape their advocacy tools and experience how another well organized cause does things. I encourage everyone to get involved with RDLA and they will open doors for our childhood cancer community.

Author: Rob Whan

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Mad as Hell…maybe

Mad_edited-1I certainly don’t want to scare you, the blog reader, away– but when provoked Untitled-1by 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!?

BlackboardwearHow 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.
LaurieLittleGirl

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:

CookieCamp_edited-1C is for Cancer Camp

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Dear Caleb

 

DearCalibHeader_edited-1

DearCaleb_edited-1

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

CalebFrame_edited-1Reflecting 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?

CalebWhanShelf_edited-1 Author: Rob Whan

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

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Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , | 6 Comments

C is for Cancer Camp

CookieCamp_edited-1
Laurie’s mom and newborn daughter, October 2007 – say cheese!

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 candologoon 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
survivorI’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 ICamp Can Do group  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.

CanDoSave_edited-1I 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.

CampCanDoHelp
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

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

Page A29

PageA29_edited-1Dear 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 KOMEN_Maniafinished 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:

 2014-03-10 08.17.30 amIn 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. 

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comPASSION

CompassionIt 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!

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 phototechniques 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. One step taken on her road to becoming a pediatric oncologist.

Screen Shot 2017-12-17 at 11.54.56 AM

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

Thank You, American Cancer Society

ACSThankYouIn 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’ gladiators-and-lion-1927comments.  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.

12136817_sI 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 ACSFactsbe 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

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Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , | 8 Comments

Survivor 2nd Edition

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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 43 kids diagnosed per year. We “followed” the group of 36 for 30 years.  Along the way, some died, Tensurvivebut 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 420,000 childhood survivors alive in the United States today.  Imagine 420,000 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 annals-of-internal-medicine-coverFan_edited-1children.

A new 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 CAjournalspecial 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.

Cured?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. The illustration at right shows possible long term side effects if the child’s treatment involved chest radiation. Long term effects are discussed below by cancer type. This information was 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 32e39_20120907_052634_ssjm0909growtumor90_300vary 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.

10881919_sThe 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.

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