Welcome!

 Welcome_edited-1

Welcome to Four Square Clobbers Cancer!

foursquarecourt2.jpgFour-Square Clobbers Cancer is a conversational blog that is dedicated to improving the outcomes of children, adolescents, and young adults who are being treated or have been treated for cancer.  The goal is to inform, communicate and collaborate with those in the cancer community.

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

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

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

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

Palliative Care Survey

Palliative Care Survey

Please consider responding to this survey if you are a health care worker or have worked with a child or children with a lifelimiting or life-threatening illness. This is a survey of 15 questions and will take approximately 5-10 minutes to complete. The survey is designed to gather information on current programs and services offered to children with a life-limiting illness and their families. Your responses will be useful in improving palliative care programs, and will help assess the need for new programs. The survey is anonymous. .

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

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

Posted in Cancer, Childhood Cancer, Pediatric Cancer | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 3 Comments

Father, Daughter, Date Night

FatherDaughter_edited-1Bella_RobThe other day I decided to take my 7 year old daughter, Bella, out on a date. I found a traveling circus that was in town and recalled how much I enjoyed the circus as a kid and thought it would be a great opportunity to make some memories with my little princess. On the way I asked her to choose what she wanted for dinner and that we were in a hurry so it couldn’t be somewhere that takes too long. She choose Dairy Queen for some unknown reason? Ya right, she couldn’t wait until after she ate her burger for her ice cream. Then I remembered since it was a date, I shouldn’t be scolding her about eating her ice cream first. Shortly after getting back in the car she asked “how did Caleb die?”

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

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

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

Author: Rob Whan

Related Articles:

Dear CalebDearCalibHeader_edited-1

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

Palliative Care Survey

SurveyPalliativeCare_edited-1 The paragraphs below may be helpful in explaining the nature and purpose of the survey.

Being the parent of any child is a full-time job. Being the parent of a child who is clinically fragile is overwhelming in ways most people cannot begin to imagine. This is physically and mentally exhausting. We get that. Trying to give an ill child everything he or she needs without allowing siblings to feel overlooked is a huge challenge. Maintaining relationships can become extremely difficult because of the strain of caring for this child whom you love so very much. We get that, too.

Sometimes, families need a little extra support. Sometimes, parents simply need a day or two to take a break and get caught up on rest. Sometimes, all family members need to escape to a place where they can recharge.

Did you know that in the United Kingdom there are over 50 respite and hospice houses just for children? These houses do not look or feel anything like a hospital. Yet, medically fragile children will go there to simply enjoy a few days or weeks trying to live as normally as possible while still receiving needed medical care. Often, the entire family will stay at one of these respite houses to enjoy family time together while receiving medical support from specially trained professionals. Many of these houses open their doors to the entire family, offering a time of rest, recreation, and much needed support.

Below, you will find a link to a confidential survey being conducted by Patti Sharp, a graduate student at Stephen F. Austin State University. Patti is passionate about designing pediatric medical support facilities that are functional, but more importantly, family-friendly and comfortable. We are hoping you will participate in this confidential, online survey that will provide valuable information to those planning or designing pediatric respite and hospice houses. It is easy for planners and designers to think we know what is needed and desired by families. However, the truth of the matter is we are guessing to some extent. That is why it is so important for parents like you to provide us with your opinions. The results of this survey may be the beginning of providing support and respite care for families just like yours.

If you are or have been a family caregiver to a child with a life-limiting condition please click the link to complete the survey.  More than one adult per household may complete the survey. They need to be (or have been) a family caregiver to a child with a life-limiting condition. It should only take about 15 minutes to complete.

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Related articles:

LadybugHouse_edited-3

Ladybug House, A home away from Home

 

PalliativeCarePalliative Care, Misunderstood

 

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

Immunotherapy

immunotherapy_edited-2I am not sure how many people outside of the cancer research community know this, but it is well recognized that the human body is equipped to fight off cancer on its own. The same immune system that we have to fight infections should be able to fight off cancerous cells and tumors. While all cancers arise from an individual’s DNA damage and thus from our own cells, there are things about cancerous cells that are very unusual. Sometimes they express very high levels of certain types of proteins and other things which make  them stand out from normal cells, and explains why they grow and progress as they do. Our immune system should be able to recognize such cells as foreign invaders and zap them before they become a problem. There is actually a theory, one which I happen to believe, that everybody develops cancer at various points in our lifetime, but that the tumors are eradicated by our immune system before we even know they are there. We all develop DNA damage, every single day, and so it makes sense that cancers come and go in uneventful fashion. Immune system activity is also a very logical explanation for why some patients will have an unexplained “spontaneous remission” in the absence of treatment. The immune system is likely behind such miracles.

immunesys_edited-1But 1 in 2 men, 1 in 3 women, and 1 in 285 children will get diagnosed with cancer, so we know that the immune system is not bullet proof. We know that patients who are in some way immunocompromised, such as patients who are undergoing immunosuppressive therapy because of an organ transplant or autoimmune condition and those with immunosuppressive conditions such as HIV/AIDS, have very elevated risks of developing cancer simply because they are immunosuppressed. But why does someone who is otherwise perfectly healthy, with no predisposition for cancer, get cancer? A deteriorating immune system with aging is thought to play a role in why cancer is so common in elderly patients, but to what extent does the immature immune system of childhood play a role in pediatric cancers? There are no clear answers to these questions, and the topic goes way beyond that of the immune system. However, we know more than we used to when it comes to the human immune system. Medical research has uncovered something really sneaky about tumors: that some tumors develop in ways that in essence get the immune system to look the other way. Unfortunately or fortunately, depending on your perspective, we now know that tumors are sometimes protected from the immune system via checkpoints like “PD1” (stands for programmed death-1; you may have heard of it, it is big news in cancer right now), leading to a new class of immunotherapy drugs called “checkpoint inhibitors”. Think of PD1 and other checkpoints (there are others, like CTLA-4, which was described before PD1) as being a brake to the immune system, telling the T-cells of our immune system to leave the cancer alone. We have these cellular checkpoints in our body to prevent our body from attacking itself (as happens in autoimmune diseases), but they are also offering protection to tumors. These new checkpoint inhibitor drugs are leading to major breakthroughs in advanced/metastatic melanoma, an aggressive skin cancer that had typically been considered a death sentence, usually within 1 year of diagnosis. In September 2014, the first PD1 checkpoint inhibitor was approved in the United States for advanced melanoma (Merck’s Keytruda® [generic is pembrolizumab so just call it Keytruda]); also another PD-1 agent, Bristol-Myers Squibb’s nivolumab (Opdivo®) has  been approved for advanced melanoma in Japan and was just approved for use in the US by the FDA. Other similar agents are aggressively being explored as single-agent therapy and combination therapy melanoma and various other malignancies. The approval of Keytruda® was based on a 24% response rate in this heavily pretreated population in which most patients had stage IV metastatic disease, but even EveryPharmmore noteworthy was that the responses tended to be durable in patients who responded. PD1 agents are not without side effects but are generally more tolerable than chemotherapy, producing mostly low-grade toxicity and not the types of things seen with chemotherapy. This is a big breakthrough for those whom chemotherapy has offered little hope but lots of toxicity.

You might be thinking, why the upfront focus on advanced and metastatic melanoma for these new immunotherapies? Without getting into specifics regarding the biology of melanoma, there are things about melanoma that make it a very good target for immunotherapy, and is one of the cancers for which there has been some success with past attempts with older immunotherapy approaches, known as cytokines (the interleukins and interferons). So starting with advanced melanoma makes a whole lot of sense, from a biologic perspective. Anti-PD1 therapy is still in its infancy overall, but it is important for those reading this to know that pediatric studies of these PD1 agents are planned, per publically available information on the FDA’s website. The manufacturers of these products all recognize the potential of these agents for kids, and studies will be coming. Here is a link for more information; a heads up that there is a lot of info within the documents and slides:  FDA Link

But the subject of PD1 immunotherapy will be continued at a later time, as it was not PD1 that prompted me to write this post. It is something else, called CAR T-cell therapy, for which pediatric data are already available.

Before I get into the data that have come to light for CAR T-cell immunotherapy for childhood leukemia, I think it is important to jump back and offer a little bit of context. I am an oncology writer who works as a contractor for the pharmaceutical/biotech industry. I have been writing about cancer drugs since 1998, and have witnessed the evolution of cancer therapy and the ups and downs with things like immunotherapy. In the early 2000s, cancer immunotherapy was the greatest thing since sliced bread. One of the big focus areas was therapeutic cancer vaccines. Unlike preventative vaccines (including those that are aimed at preventing cancer, like Gardasil), therapeutic cancer vaccines are designed to eradicate an existing cancer, by boosting the immune system as discussed earlier. In the early 2000s, several different therapeutic cancer vaccines were under development, including some complex personalized approaches that were based on the patient’s own unique cancer cells and others that were designed to be more “out-of-the-box”. Several showed promising early activity, but around the same time several different ones failed advanced-stage clinical trials. The populations that were mainly being studied were very heavily pretreated poor-prognosis cancers, like metastatic melanoma and advanced pancreatic cancer. Although many were speculating that these might not have been the best populations, that better results may have been possible if these vaccines had been tried earlier in the disease or in different types of tumors, many companies jumped off of the immunotherapy bandwagon entirely. Some small biotech companies, which were very dedicated to this therapeutic cancer vaccine technology, were forced to close their doors. I watched it happen. Some of these were my clients. My thought at that time was “Nooooooooo, don’t do it, stick with immunotherapy, we are on the right track but wrong train”. The concept of immunotherapy just makes sense on so many levels, and holds such promise for true cancer cures. But failed trials are an automatic death sentence for products, especially for small companies. Trying to manufacturer personalized cancer vaccines, a new and very complex and expensive process, just isn’t possible without money TreatrmentChart_edited-1and lots of it.

So starting around the mid-2000s, things got very quiet on the immunotherapy front. Cancer became a bigger and bigger area for both large and small pharmaceutical/ biotech companies, but the focus wasn’t immunotherapy but something called targeted therapy. You may have heard terms like small-molecule inhibitors, molecularly targeted agents, tyrosine kinase inhibitors (TKIs), monoclonal antibodies — these terms all fall under the umbrella of the novel concept of targeting the ability of cancers to grow and proliferate by targeting cell survival pathways, rather than killing them directly   via chemotherapy.

Chemotherapy basically works by causing damage to DNA, killing the tumors via this DNA damage (but unfortunately also damaging healthy DNA in the process). On the other hand, targeted agents work by indirect killing of the tumor, not by damaging its DNA but more like starving it by taking away something(s) that it should need to survive.  As I mentioned earlier, cancers express high levels of things that normal cells express at low levels, so modern medicine has been able to exploit those differences and develop these new “targeted agents” that represent “personalized medicine”. However, the term “targeted” is kind of a misnomer. For example, there is a modern class of drugs called EGFR inhibitors, which act against tumors that have identifiable mutations in this thing called EGFR. EGFR mutations commonly occur in certain patients including non-smokers with lung cancer, and these EGFR-targeted agents are being used as a substitute for chemotherapy in these patients. These agents are way more effective than chemotherapy in these patients, assuming that the patient has a tumor that carries an EGFR mutation (this is where genomic profiling comes into play, to be discussed another time),  and more tolerable to

WatchT-Cells_edited-2boot. However, they are not devoid of toxicity. For example, EGFR is highly expressed in normal skin, so these “targeted agents” can lead to skin toxicity, which can be severe and complicate treatment. So the term targeted does not mean that the activity of these drugs is confined to the tumor per se. At the same time, however, these drugs are NOT chemotherapy and generally do not produce the types of severe toxicity commonly seen with chemotherapy, and many of them are available as once-daily oral therapy which is a welcome convenience. Overall, molecular targeted therapy is a good thing and represents a huge leap forward in cancer therapy. It has revolutionized the entire approach to treatment, allowing for a personalized approach that can lead to better efficacy and better tolerability. However, a big barrier to targeted therapy is tumor resistance, either at the start of treatment or after a while of being on treatment. As I said earlier, tumors are sneaky. If you block a cell survival pathway (like EGFR or something else, there are many!), tumors can find ways to eventually adapt and grow without that particular pathway. Tumor resistance is considered inevitable for most patients treated with targeted therapy, although some patients will continue to respond over time. Researchers are still trying to figure out ways to stop this resistance, such as by combining agents. Sometimes this seems to work; other times, not so much. Always remember, every single solitary tumor is unique, being derived by our own DNA. This explains why patient experiences and outcomes vary so much.

Meanwhile, as the pharmaceutical/biotech progress was being made with targeted agents, the field of immunotherapy was not entirely dead, as illustrated by the PD1 example earlier. At the University of Pennsylvania, researchers were focusing on an entirely different type of cancer immunotherapy, termed CAR (chimeric antigen receptor) T-cell therapy. Our immune system is composed of a mixture of T-cells and B-cells, which act in different ways to fight infections and other invaders. The concept here is that you take T-cells from a patient, send them to a lab and use a virus to genetically program the native T-cells to target cancer cells, and re-inject them into the patient in hopes that these “serial killer cells” will do their thing and knock off the cancer. On a fascinating note, the reprogramming is taking place via use of the HIV virus, which is a very effective means of delivering information to T-cells. The HIV virus is of course deactivated so that it cannot 

Screen Shot 2014-12-19 at 2.10.08 PMcause disease. As it turns out, these serial killer cells are actually doing their thing. Not only are we seeing positive results, but a focus to date has been treatment-refractory pediatric acute lymphoblastic leukemia (ALL)!! Check out this video, “Fire With Fire”, but be prepared to be blown away:

The experiences with CAR T-cell therapy have been published in the New England Journal of Medicine, based on a study conducted at the Children’s Hospital of Philadelphia (CHOP).1,2 The first report described the first 2 patients achieving complete remission, whereas the most recent one reported a 90% complete response rate among 30 children or adults with relapsed or refractory ALL, with some durable remissions up to 24 months. Recently, updated data were reported at the Annual Meeting of the American Society of Hematology, with a 92% complete remission rate among 39 children and young adults. Results like this, in such heavily pretreated patients with no other treatment options and such a poor prognosis, are pretty much unprecedented. CAR T-cell therapy is not without toxicity issues. Because you are boosting the immune system so strongly, all patients experience something called cytokine-release syndrome, which can lead to life-threatening complications. The “serial TCellVideo2_edited-1killer cells” also kill healthy B-cells in the process, requiring patients to receive B-cell replacement therapy indefinitely. Also, this particular therapy is targeted against CD19, a certain tumor marker that is not expressed in all ALL. Finally, as explained by Dr. Stephen Grupp from CHOP in the video to the right, patients who are so heavily pretreated have a risk of not having enough T-cells to do this type of therapy. It begs the question, of just how early something like this could be tried? And what will the long-term results be, in terms of “immunity” against recurrence? Answers to questions like that will take further studies, and a multicenter study for pediatric ALL is already planned (yay!). TCellVideo_edited-1Also, because of the excitement around this product, it really resonated with the pharmaceutical/biotech industry, with the University of Pennsylvania’s technology being licensed by Novartis Pharmaceuticals. Novartis is working on building a manufacturing facility to facilitate the expansion of this therapy within the United States and abroad. Other companies have ventured into the CAR T-cell space. This is a huge deal and speaks volumes to the promise for this technology, as this type of personalized product is not the typical type of treatment for large companies to take on. This type of technology is very complex and requires a lot of money and patience, to keep it alive. Research hospitals, even major ones like UPenn/CHOP, certainly cannot go down this road alone, so it is a good thing for everyone that pharma came knocking. It took some time to generate interest. It took groundbreaking results, but CAR T-cell therapy found the home it needs to take it to the next level.

So right now, everybody in the cancer world is talking about immunotherapy as the greatest thing since sliced bread. I tend to agree. We have a long road ahead though. The experience with CAR T-cell therapy has been so positive so far, but responses like that will not be achieved for every patient in every trial. Long-term efficacy and safety data are critical, but that takes time. Nonetheless–immunotherapy is BACK and seemingly here to stay, and I am personally so excited to see what’s next. I follow this area of immunotherapy very closely, not just for children but for adults, and I will be sure to keep you posted too!

Author: Laurie Orloski

References:

  1. Maude SL, Frey N, Shaw PA, et al. Chimeric antigen receptor T cells for sustained remissions in leukemia. N Engl J Med. 2014 Oct 16;371(16):1507-17.
  2. Grupp SA, Kalos M, Barrett D, et al. Chimeric antigen receptor-modified T cells for acute lymphoid leukemia. N Engl J Med. 2013 Apr 18;368(16):1509-18.

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

Five year cure, …really?

5yearcure_edited-1Five-year relative survival rates describe the percentage of patients with cancer that are alive five years after their disease is diagnosed. Use of 5-year survival statistics is more useful in aggressive cancers that have a shorter life expectancy following diagnosis (such as lung or pancreatic cancer) and less useful in cases with a long life expectancy such as prostate cancer.

5yearChart_edited-1When a patient achieves that magical 5 year survival mark, everyone celebrates the milestone and they are considered by most people to be “cured.” That is not necessarily accurate. What it means is exactly what it implies: They have survived five years since being diagnosed, nothing more. The average age at diagnosis of cancer is 6 for children and 66 for adults. While the chart at the right shows great progress in five year survival rates in childhood cancer from one period to another, it is only comparing five year survival rates, nothing more. While it gives some comfort that we appear to be making good progress, it does not really measure survival beyond a five year period. Using a standard five year survival rate for cancer will take an adult diagnosed with cancer up to age 71, but it only takes a child up to age 11. Has the child really “survived” and beaten cancer? Sadly, the answer for a large number of children is, “No.” We need a more accurate “survival” measurement for children. Kids cancer is not the same as adult cancer and survival for children must last much, much longer than just five years.  As we do today, using a five year survival rate for childhood cancer grossly discounts the pitfalls that lay ahead for up to 95% of the survivors. When it is communicated in a way that  others outside of the childhood cancer community can fully understand the long term impact cancer has on children, only then will we finally make childhood cancer a real priority. Let’s stop hiding from the reality of childhood cancer by using  unrealistic five year “survival” rates.  True progress in surviving childhood cancer can not be measured by only looking at the five year period from diagnoses. Today, advocates and medical professionals frequently cite 83% as being  the average survival rate for children.  In reality, the 30 year survival rate is only 65% overall.  A long term survival rate such as this gives a much different and more realistic perspective to the general public who we rely on to help fund research. We’d love to see the American Cancer Society or even the National Cancer Institute to step up and address the need for looking at a more realistic method of measuring survival for children. 

The following article was written by CJ Colton in February 2013. Her son is still fighting cancer today and it appears there is no end in sight. It highlights what a child goes through just to get to the five year “survival” point. Studies have proven that survivors of childhood cancer actually are fighting effects of their “life-saving” treatments for the remainder of their lives:

Five Years Is Not Enough

This article is about how children with cancer are surviving longer. However it also points out the lack of research and funding for pediatric cancer. What the article does not say is that a major number of the children do not live to be adults. 

I am not angry and I am not bitter. I refuse to become that way. Through our Faith we stay strong. However, our children are dying. How can you tell a parent of a 1 year old your child may live for another 5 years and that is considered good, or a mother of a 6 year old your child has 5 years. Both these children would die at a young age. These children would also go through horrible medical treatment to keep them alive. Five years is NOT ENOUGH for our children!

I know this because my son, Tony, was diagnosed with Clear Cell Sarcoma of the kidney at age 11 in July 2011. He finished treatment in February 2012. He lost his hair, had multiple surgeries, had a kidney removed, and was given medication that caused him to be so sick he lost 25 pounds. He was given radiation treatments, he hurt all the time. It hurt to walk or play and he never felt like eating because he was nauseous all the time. He was so sick. He smiled though most days. Most of the children do smile most of the time.

For one year after treatment he still had to go to the clinic numerous times and have radio- active or nuclear meds put in his body along with numerous scans, MRIs, and CTs. He made it one year with no sign of cancer. On February 8th 2013 we were told that Tony had a mass where his kidney use to be. On February 12 he had a biopsy of the mass. His liver bled during this biopsy and he was put in the hospital. On February 13 we were told Tony’s cancer had returned. We were referred to the National Institute of Health for a Phase 1 treatment called Ipilimumab. This treatment will make his T-cells over work to try and attack cancer cells. The effects of this medication are bad autoimmune side effects. This, we hope is his cure. This medication has been used on adults, but not many children. He will be the 8th child to receive this medication at NIH and the first child with Clear Cell Sarcoma to receive it. He may have to have a chemo that is called ICE next.

He will have treatment every 21 days at NIH which means we have to fly to Bethesda, Maryland for treatment. In between treatment he goes to All Children’s hospital in St Petersburg, FL several times during the week. His only complaint since re-diagnosed is he wants to have his port back. You see he has had over 20 blood draws and/or IV’s since February 8th.

Last Friday, March 8th 2013, while we were at clinic for a blood draw and a physical check to see about side effects I listened to what was going on there. I have listened in the past, but this day I realized something, it sounded like we were hearing a torture chamber of children and babies. I heard babies screaming, I heard toddlers yelling and saying “help me”, I heard school age children screaming and yelling “please don’t hurt me.” I heard a child yell “Mommy let me go, help!” I saw children trying to run away and I saw children sobbing. These children were getting port accessed, blood draws, large needles stuck in both their legs at the same time for chemo, and finger pricks to check counts. These are just a few of things these children and babies go through that have cancer. These brave and strong children have to go through this over and over and they just might survive past 5 years, or they might not. If they do survive they will have long term side effects from this treatment.

I will say again I am not angry or bitter. I hurt though, a hurt I could never imagine feeling to my soul. This hurt is out of fear for the life of my son, but also for many other children we have met going through treatment. The pain and suffering these children go through is tremendous and you witness it over and over.

As a nation we need to make sure our children receive the best possible research and treatment for pediatric cancer. It is our responsibility. Cancer is the number one disease that kills our children. We need to save our children for longer than 5 years.
I am just one mother with one child.

fiveyearcurerate_edited-1There are hundreds of foundations out there trying to bring awareness to childhood cancer and raise research money. We all need to unite as one strong group to fight for our children. Numbers bring strength.

What these kids go through to survive the 5 years is horrible and a lot less make it much further than 5 years. Many children do not make it to 5 years. Why would they think a 5 year survival is enough for a child? 5 Years IS NOT ENOUGH!

Author: CJ Colton

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Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , , , , , | 12 Comments

My Calling

MyCalling_edited-1I came into the childhood cancer community in 2013 as a member of the “general public”, having no personal connection to a child with cancer. My journey is different but not without appreciation for what cancer is and how devastating the journey can be, not only for the patient but also those who serve the role as primary caregiver. My mom always said that losing one’s parents makes you feel like an orphan, and she was right on point there. The pain of losing 2 parents by age 35 may pale in comparison to the pain of losing a child, but the pain and loss are enormous nonetheless. My mother was the second to go, right as I was starting my own family, after a 9-month battle with an exceptionally rare carcinosarcoma of the uterus. They are so rare that most oncologists will never see a case. When they do occur, they tend to occur in women with certain risk factors. My mom had none of those risk factors. Many cancers are actually explainable; the unexplainable, random ones (which include most pediatric tumors but also some unusual adult tumors) are just flat-out baffling. I just have to keep reminding myself that sometimes things happen for a reason.

When my mother was suddenly sidelined by cancer, my relationship with her transitioned from being a daughter to being a daughter-cologist, aka patient advocate. I have a professional background in cancer, so I took care of almost everything—getting second opinions, getting discharged from the hospital at the right time, getting her nausea/vomiting and pain medications adjusted, making decisions on an investigational treatment, asking questions, asking more questions. My mom didn’t have to worry about a thing, and she liked it that way. I let her make her own decisions; believe me though, she did not want to manage the rest. She was very sick from the time of diagnosis. When she would start getting upset about the possibility of dying, I would just transition into some sort of scientific discussion about tumor biology and data, yada yada. My intent was to get her mind into thinking “wow, how annoying is my daughter, why won’t she shut up” rather than thinking about dying. There were times in her journey when things weren’t going

Literally 1 single week from this photo op, perfectly healthy Ma called crying.  Blood work came back.  Her "definitely benign" polyp wasn't looking so innocent.  She needed to see an oncologist STAT, and so the journey began...

Literally 1 single week from this photo op, perfectly healthy Ma called crying. Blood work came back. Her “definitely benign” polyp wasn’t looking so innocent. She needed to see an oncologist STAT, and so the journey began…

right, when answers to questions weren’t making sense. And I knew enough to know that she was in big trouble. So I would speak up, I would ask questions that nobody would ever think to ask—very difficult questions. I fought for her life in a way that nobody else on the planet would. “I wish I had a daughter like that”, I would hear her nurses say, with genuine awe that I would jump through so many hoops for my mom despite having a baby at home. Of course I would, she was my mother and only living parent. She needed to be saved. In the end though, her tumor was too aggressive, there really wasn’t anything that could have been done to save her. At the same time, I left that cancer world feeling very disgusted, not only that she died but how she died. I could go on and on but I won’t, other than to say that sometimes things take a life of their own; sometimes things happen that are simply out of one’s control. Sometimes doing the right things isn’t good enough. Sometimes mistakes are made that cannot be undone. If she had had a different tumor, maybe she would have been OK, or maybe not.

When I came out of that fog and then the fog of having my second daughter, I felt this unrelenting pull to get involved in cancer awareness and advocacy—stemming from my ordeal with my mom. I kept thinking about children, but I had no personal experience to childhood cancer so wasn’t sure if/how to get involved. Back in 1997, I had spent 6 weeks at St. Jude as part of my oncology pharmacy training. I remember that most of the kids were extremely sick, being beaten down by their treatments, but that most were considered curable. Two children passed away with solid tumors during my 6-week stay. Those losses were devastating. They were the exception and not the rule. In a lot of adult cancers, certain types, death was the rule and not the exception (still is, in some cases).

From 1997-2013, I had fallen out of touch with pediatric cancer research, as my career wound up being focused on adult oncology; however, I had assumed that things must be really good now. In the year 2014, the era of novel targeted agents that began about a decade earlier, those exceptions must be even rarer. I thought that kids must be really benefiting from the numerous new biologic and targeted drugs that had entered the marketplace since 1998, from the time when Herceptin first came onto the scene for breast cancer. I knew that many of these targeted drugs had applicability to numerous cancers and was sure that they were being aggressively studied in childhood cancer.

Then I did some quick on-line searches, to gauge the state of pediatric cancer treatment, and found that nothing had changed at all since 1998. These new cancer drugs that I had been writing about for adults had not been making their way to children. Those kids whose bodies were being literally annihilated with chemotherapy in 1997, many undergoing bone marrow or stem cell transplants, were likely suffering some sort of long-term complications. Those very same regimens continued to be used today, in many cases. In the year 2014, there were still pediatric tumors that are regarded as terminal on diagnosis. Not only was my industry, the pharmaceutical industry, paying little to no attention to childhood cancer, but the American Cancer Society and the National Cancer Institute weren’t picking up the slack in any way shape or form. It takes a lot to shock me, but I was floored. How, in the year 2014, were treatments for childhood cancer stuck in circa-1970s and 1980s? How did this happen, and who let this happen?

For me, there was no going back. If I was going to give up time that I don’t even have to volunteer in the cancer world, I was going to devote it to raising awareness and research CAC2Join2_edited-1funding for childhood cancer.

What was I going to do exactly? Well, I had some big ideas but they were not doable on my own. Luckily I made my way to the Coalition Against Childhood cancer (CAC2), which was just in the process of forming. One person told me to talk to this person, that person told me to connect with another person and so on.

I started writing blogs here, from the perspective of the “informed general public”, but also made time to travel to the CAC2 Annual Summit, where I got to meet some of my comrades for the very first time. There was no way that I was going to miss the 2014 Congressional Childhood Cancer Caucus, and I made plans to attend CureFest the second year in the row.

WhiteHouse_LogoThen, despite initially deeming it as spam, I got an e-mail invite from the White House for a closed-door meeting with pediatric cancer advocates. I seriously thought it was spam at first, but it seemed too specific. I thought those hackers were really smart. Then, after deeming it not spam, I just assumed it was some sort of mistake—but no, it was intended for me. I was humbled to have even made it onto the invite list and was not going to miss it, even though it would require some complicated travel logistics.LaurieCapital_edited-1

I won’t go into details now, about what I learned in those meetings in DC. I’ll write about those things later. I will just say that I feel a genuine sense of optimism that good things are going to come for children with cancer. That while there is a ton of work to be done, the door (actually multiple doors, those of pharma, the NCI, and the White House) has been kicked open—now as advocates, we need to open it wider and keep it wide open.

Anyhow, when I was at the CAC2 meeting and sitting in the Caucus and White House, I will admit to getting a tad emotional. The misty-eyed kind of emotion, and it is happening to me right now gosh darn it. I always say that I came into this community without a connection to a child with cancer, but I had a connection to another patient: my mom. In the time it takes to have a baby, her life was taken away in cruel fashion. Her journey, her KidsKeyboardGoldawful journey, took me to a place where I am speaking up for kids with cancer. Sometimes things happen for a reason, right? The reality is, if I had not lost my mom and in the way that I did, I would not be in the childhood cancer community right now. It took a really weird tumor and a really unusual journey to get me here. In the end, I no longer consider myself a member of the “general public” but instead call myself a “childhood cancer advocate”. The last conversation I had with my mom, we joked about how her doctors hated me (some did not like questions), how she was proud of me for that, and how I missed my calling as a patient advocate. As it turns out, I did not miss my calling after all.

Author: Laurie Orloski

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Fixing the Faults

FixingFaults_edited-1This summer I wrote a raw piece entitled “The Fault in Our Systems”. Our family’s efforts to get Nathalie access to immunotherapy treatment (available to adults) seemed to be going nowhere. The inequities were everywhere and the playing field was tilted against us. In high school on the Big Island, I dreaded playing travel soccer games at Hilo High. The soccer field was on a laughable slope. Thank goodness for halftime field switches. Nathalie is still playing up hill – there is no other playing pitch with ASPS, but gaining access to a new therapy is significant.

facebook-pictureLast weekend I was able to take a look under the hood at some of those faulty systems in the world of childhood cancer. Our family traveled to Washington D.C. with the express intent of leveling playing fields- one determined step at a time. Vicki took the redeye flight ahead of us, landed in DC and lasered to the Capitol for the “Hill Day for Medical Research”. She was able to meet with a number of lawmakers, urging support of policies to increase research funding, incentivize pediatric cancer drug development, and remove barriers to access.

The girls and I arrived in the afternoon, quickly changed into DC level attire and joined Vicki at a “Golden Toast: Reception for Congressmen McCaul (R) and Van Hollen (D) Co-Chairs of the Childhood Cancer Caucus“ It was the movers and shakers of pediatric cancer NathanReceptadvocacy. A certain pharmaceutical pediatric oncologist was there, eager to meet Nathalie. Our first introduction had been long ago when he had been on the other side of the phone letting our oncologist know that the the immunotherapy drug would not be available at this time. Through many phone calls and communications we gained a mutual respect, and even as I wished the answer for Nathalie would change, I supported his efforts to bring treatments for all pediatric patients sooner. Today we were both in DC as partners with a similar goal.

He announced that his company had enacted some wide policy changes in the default age limit for their future clinical trials. Unless specifically necessary, twelve would be the new age limit on the “adult” trials. The future pediatric trial of PDL1 will include all tumor types – also a nod to rare cancers like Nathalie’s.

At one point a few months back, Nathalie remarked that it can be lonely in front, pushing for something new, something you believe is right. I told her, “It always is.” I am thankful NathanAutoriumwe get to see this door widen for others.

So many other scenes float past – sitting as a family in the richly appointed congressional auditorium listening to the head of NIH, MD Anderson, Johnson and Johnson give their take on the challenges of pediatric cancer, compassionate use, immunotherapies, and science advancing faster than access. So much had been part of our story – I bit my tongue on the Q & A’s till I couldn’t anymore. The CEO of St. Baldrick’s turned around to thank Nathalie for the trail she had blazed and the reporter who took her story national was typing away in the row behind. The seats were filled with the names of many we’d met from afar on Nathalie’s journey.

Later that day I learned of the triplicate security measures involved in attending a meeting at the White House. The briefing/discussion for Pediatric Cancer Advocates was held in the Indian Treaty Room. I wasn’t in the mood to make treaties (in fact if the suit wasn’t required, I’d have preferred one of StillBrave.org’s “Keep Calm, My A$$! Cure Childhood Cancer” T-shirts) but I sat quietly down in the front row a few feet from the government officials best poised to advance childhood cancer efforts.

RobVarmusDr. Harold Varmus, director of the National Cancer Institute shared how budget instability was turning away young researchers from pursuing funding. A new pediatric MATCH Trial was set to begin, using genetic analysis of non-responding tumors to match them with existing market and developmental medicines – which hopefully pharma would make available as they have with the adult version of the MATCH trial. He was of course pressed on the 4% of the total cancer budget devoted to pediatric cancers. I took some solace in the words of Dr. Gregory Reaman in charge of the FDA’s oncology drug development. He is a former chairman of the Children’s Oncology Group and is very well-placed to question pointless barriers. I overheard the phrase “It’s time to stop “protecting” children from research, and use research to protect them.” What was historic about this meeting was that the administration had made available just about every government official connected to pediatric cancer and had given a forum for the diverse collection of pediatric cancer advocates to have a conversation. There is so much to be done. The many drums are starting to find the same beat.

IMG_4700There were lighter scenes as well, accidentally taking the “Senators Only” elevator, enjoying the “schmoozing” food at receptions, taking advantage of the Smithsonians sandwiched between our business at the Capitol and White House, screening the animated film addressing children’s cancer “Henry and Me” and chatting with the directors, bumping into one of Nathalie’s former NIH doctors who demanded a pic for the team there rooting Traller_HenryAndMefor her, debating the merits of “half smokes” versus normal hot dogs, and participating in the most scenic fundraising walk ever (“so head down to the capitol, turn around The Mall and then circle around the Washington Monument”). We took cabs among the alphabet and number streets and were inspired by the families and foundations that have been in this advocacy effort for years watching it slowly grow. Humbled and inspired was the theme.

Childhood cancer is the number one disease killer of children. It’s time to stop calling it rare. I used to think the lack of progress in pediatric cancers (other than blood cancers) was due to the tremendous complexity of the task. Now after I’ve looked under the hood, I know that it is really no surprise based on the paltry stream of resources. Imagine large NASCAR vehicles representing the most prevalent adult cancers – their hoods are plastered with corporate sponsors such as Merck and Bristol Myers Squibb. Now imagine NathanCar_edited-1a small car with only two small decals, that of the National Cancer Institute and Children’s Oncology Group. Call me crazy but I feel if those big companies want to keep racing to the profit line on the adult cancers, perhaps they can all agree to a small share of sponsorship of the pediatric cancer car that represents future dreams. You won’t find a company that doesn’t profess to be patient first, let’s stop defining that patient by age. Let’s make sure our government removes the speed bumps for the companies with the character and courage to join in. I saw engagement by Genentech, GlaxoSmithKline and Johnson and Johnson this weekend – Know someone with a company that was missing? Encourage them to get in the game. I can personally guarantee that the Traller family will keep pushing up hill. Sometimes it’s the difficult things are the most worth doing.

Author: Nathan Traller

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A Pair of Shoes

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One day in September, after my wife and I visited the Hart building, we met up with Ellyn Miller on a beautiful blue-sky morning in front of the Cannon House Building in Washington, DC. Ellyn had walked there from Union Station. We were there to lobby for medical research funds. During the day, we walked from the Cannon to the Rayburn, back to the Cannon, then to the Rayburn again and on to the Russell and back to the Cannon, not to mention all the walking inside those huge buildings that house our Congressional offices.  For each word we uttered on behalf of medical research, we must have spent a hundred steps walking from one place to another. By that afternoon, we all talked about our shoes and how much they hurt our feet. About a month later, I found this piece and then I realized how much Ellyn’s shoes must hurt her every day. This is dedicated to her and to others who have lost a child.
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Hope

hopeHeader_edited-1From his perspective, my 10 year-old grandson Conor has always had a somewhat normal ConorSkate_edited-1childhood. He lives in California, is good in school, a cool blond-headed surfer dude and a wild and radical skateboarder. In fact, I am amazed when I watch him on his board as he navigates a particular skateboard park in Coronado popping in and out of the deep pools “getting air” and landing safely on the rim. This has been the life his parents wanted for him and even prayed for him to have about nine years ago when he was diagnosed with high-risk neuroblastoma.

Conor’s ordinary life started to unravel about a year ago when his natural curiosity got the best of him. He picked up a Nicholas Conor Institute leaflet on his mom’s desk and asked, “Hey mom, why are they using my name?” Conor didn’t remember, and my daughter Beth Anne and her husband Nick never really let him know that they almost lost him to cancer. They wanted him to have a normal life and did everything they could to make that happen, but now Conor was getting curious and really noticing what his mom was working on.

When Conor asked, Beth Anne told him in a very gentle manner and as time passed, sheConorRibbons gave him more and more details about those early years. He never liked the idea of being a cancer survivor and avoided any and all conversations outside of the family. He did not want to be considered “special.” He felt awkward. He really did not care for the reactions he got from strangers when they found out he was a survivor.

One day in school, during a health lesson with a large group of kids, the instructor asked if any one there had cancer or knew someone that did. Conor could not raise his hand. He did not want to be different from the others. Across the room, a boy in his class stood up and said he had neuroblastoma when he was four and talked about it. BINGO! Conor connected with his new best friend who, like him, was a cancer survivor. Afterwards they compared port and surgery scars and so forth. They are very close friends today and the relationship helped Conor be able to talk about cancer.

Beth Anne decided to bring Conor to Childhood Cancer Awareness Week this September  and involve him in all the activities. It was time to immerse him into the world of childhood cancer. She brought Conor and his sisters, Grace and Cami to Washington, DC where my wife Ellie and I joined up with them. We made a week of participating in cancer 2014-09-24 07.52.52 pmrelated events from the American Cancer Society’s Lights of Hope on Tuesday to CureFest on Sunday.

All during the week Conor watched, listened and talked about cancer. At first there was a lot of hesitation and apprehension. By Thursday, he was doing better. At a Golden Toast reception attended by 150 people for Congressmen McCaul and Van Hollen, co-chairs of the Congressional Caucus on Childhood Cancer, Conor gave a little talk on the gold flashlights that were being given to the guests as a symbol of shining a light on cancer. That was a first for him and he did it well.

ConorWhiteHouse_edited-1It all came together on Saturday night for Conor at a candlelight vigil in Lafayette Park, just across the street from the White House. It was held to honor the children who died because of cancer. First, our little man and other survivors were recognized. Afterwards, I watched Conor listen intently to each parent who spoke about the child they lost. There was complete silence in the huge crowd of about 1,000 as one by one gave very compassionate testimony what their child and their family went through in their own battle against cancer only to lose their child in the end. It was chilling. From there, we all moved silently to the gates of the White House where all of us in unison raised golden flame candles and sang Amazing Grace. It was the most moving and chilling event I have ever seen.

When the vigil ended, we sat on a park bench in front of the White House facing the park ConorBenchwhere all the parents had talked about their experiences. Conor looked up at me with his eyes full of innocence and said, “Grandpa Joe, what do you think about all of this?” Trying to not let my voice waiver, I said, “No one…no one person who was here tonight will ever forget this particular night for the rest of their lives.” I told Conor he was providing hope for others whose children are diagnosed with cancer. He is a sign of hope for others and in order for them to have courage to fight they needed hope and he could provide that sign by just being himself. While rubbing the top of his head, I asked him, “What do you think about all of this?” He looked up and replied, “ I am so very, very lucky.” We hugged, I held him close so he could not see the tears in my eyes and at that moment all I could say was simply, “You’re right.”

On the way back to our hotel we talked more and the next day at CureFest we talked again. We will talk a lot in the coming days, weeks and years.  Not only is Conor lucky, but so are we.

Author: Joe Baber, Conor’s Grandfather

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September’s Child

SeptChild_edited-2In my household, the month of September and the passing of Labor Day used to mean tucking away my white jeans, getting the kids settled at school and ordering Halloween costumes.

After my son’s cancer diagnosis in 2013, September will never be the same …EVER. The month now carries a sacred significance for our family and for all families touched each year with childhood cancer.

September is the designated month to raise National Awareness of Childhood Cancer.   Each September there are families working their hardest to reach out and awaken the general consciousness about this elusive malady that touches the most beautiful and vulnerable part of our society.

goldawarenessRibbonblue_edited-1Yet most people don’t know what the month’s “golden ribbon” signifies: a desperate, unmet need for greater funding to find treatments. Headlines about advances in cancer therapies for adults obscure the astonishing fact that, for kids, there is no treatment revolution. Only 2 new pediatric cancer drugs have been approved for children over the past 30 years, and national and pharmaceutical funding for new therapies is virtually non-existent.

I don’t want to share with you the statistics, the numbers about the stark reality of childhood cancer.  I do want to ask you, have you ever been a child?

I want to ask you to reflect back and remember if you trusted the grownups in your world to make your world safe and just. I want to ask you if you ever felt the presence of a love so enveloping that you knew that no matter what, goodness would prevail and children would fatherSon_edited-1always be a nation’s priority. I want to ask you to remember that grown ups have a sacred duty to be stewards of our children , especially the ones that don’t have a voice or wherewithal to change the status quo.

If you recall the innocence and faith that once defined you…then you must already know much about why raising awareness this month of childhood cancer is imperative. This September, you can do your part in forming an invincible circle of light and love around the child and family affected by cancer.

September summons a golden opportunity for all of us be better advocates for children and to be informed about the varied challenges facing childhood cancer research. Septgirl_edited-1Awareness can come in many different ways. It can be something as lovely and powerful as a whispered prayer for a child and the medical team taking care of the child, being fully present for the family, raising funds for research that is desperately needed, reaching out to the teacher, the politician, the artist, the corporate sector, your social media friend and challenging them to support this cause. If you can summon the child in you, then your efforts will come from an authentic call in your heart and perhaps, as the school year marches on, September will not just quietly slip away.

Author: Asha Virani

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Update: Camp Can Do

CampUpdate_edited-1For decades, the American Cancer Society (ACS) had been funding a nationwide childhood cancer camp program. In 2013, a business decision was made to cut funding for this program in its entirety. This was at no fault of the camps, and certainly not the campers.

I ranted about this before so will refrain from doing so again, mainly because I don’t like repeating myself, but also because I want to keep this post all zen-like, focusing on the camp and the campers and not the ACS.

Just really quick, for context: At least 25 camps were left with the choice: either close their doors or keep going on their own. My understanding is that many of the camps have indeed closed, but not all of them.

One of these still-open camps, called Camp Can Do (Forever), is practically in my own back yard. It is a long-running camp in its 31st year this year. Camp Can Do is held at an Cando2amazingly quaint and equally beautiful campground in Lebanon, PA and brings together children from 3 hospitals in Pennsylvania—St. Christopher’s in Philadelphia, Lehigh Valley Hospital in Allentown, Hershey Medical Center in Hershey—as well as from duPont Hospital for Children in Wilmington Delaware. Camp is for children ages 7-17 who are either in active treatment or in remission from childhood cancer, and there is a separate program for their siblings too.

Fortunately, those who have volunteered at the camp over the decades have an unrelenting passion for the program, knowing that there really isn’t a choice: it must go on. That “Can Cando6Do” attitude has resonated, loud and clear.

The Camp Director himself is a former camper and childhood cancer survivor, who credited this camp for literally saving his life many years ago. He was angry at the time and was literally forced to go to camp per doctor’s orders, but something magical happened that changed him for the better and gave him his life back.

About 90% of the camp counselors are former campers as well, which is so key to the experience for the kids. The adults have many of the same scars, both physical and mental, but can inspire the kids through their own stories of survival. This is also a 100% volunteer effort. This includes a volunteer medical staff, with 2 doctors from Hershey Medical Center plus nurses from various hospitals. They have an “infirmary” set-up onsite, where they administer medication and provide outpatient care as needed.

Cando5I have heard story after story about how invaluable the camp experience is for the kids, to be around their peers and adults who understand their ordeal—and how the positive experience tends to carry over into the rest of the year. It is also invaluable for the parents and guardians, giving them a chance to spend some bonding time with other members of their family. It is like a vacation for everybody, but a potentially life-changing vacation for kids who have been through the toughest of times. A lot of the kids are “city kids”, so the whole roughing-it-in-the-woods thing is a unique experience in that way too.

Some of the camps that were affected by the ACS decision but were able to stay open were weekend camps, which can be operated with a relatively small amount of funding. Cando7However, keeping Camp Can Do open has been a daunting task, as it is a 3-week (not 3 days, but 3 weeks) program. In June, there is a 4-day sibling camp and in August there are 2 separate week-long camps for the kids who have personally battled or are actively battling cancer. The directors are dedicated to keeping all 3 weeks and all that comes with them, as the continuity is critical for the children (keep in mind there are many return guests) and they have a recipe that works.

In all, at least 150 kids come to Camp Can Do summer after summer, a mix of returning guests and new faces. It takes roughly $1,000 US dollars to send 1 child to camp for the week. The families have been through enough–physically, emotionally, and financially. Thus there is no cost whatsoever for families. Now, moving forward without the support of the ACS, the camp is reliant on contributions from organizations and local businesses and individuals.

This year has been a rough road for all who have been involved in the camp, given all the stress surrounding the funding issues. Plus they have been forced to go through the process of getting established as their own 501(c)(3) non-profit entity. Many of the children were worried that the camp would be closing, with rumors circulating on sites like Facebook. But, no, they worked it out for 2014 after a ton of hard work and by the generosity of so many people. Now they must immediately start thinking about 2015, which will be here before everyone knows it.

Cando4I can tell you all about what Camp Can Do is like, as I witnessed it first hand and snapped all of the pics that you see here. I visited camp on August 7, 2014, along with some other folks in my community who have come to learn about the camp and want to help in some way. It was such an amazing day; it really, truly was. I got to watch kids having the time of their life, via a huge selection of activities that include: doing science experiments, dancing, music lessons, arts and crafts, pine cars and rockets, archery, swimming, canoeing, fishing, a volleyball-type game called 9-square, Gaga ball (like dodge ball, in a pit, is all the rage), basketball, and zip-lining that required tree climbing of at least 40 feet (!!). We adult visitors even got to play a game called “steal the bacon” with the kids, and I got schooled by a girl about half my size. And no, I did not let her win. She was sly as a fox! The kids also put on a show for us as well, and we all came together to cook our own lunch ‘dogs via campfire. One of the campers came over to let me know that there were carrots and raisins to be had, in case I was interested. He was so kind, taking care of ME, it was very moving. Whenever the campers saw us visitors coming, they would chant “Camp Can Do is fun, fun, fun… and safe!”. Very, very cute.

Cando1I met 2 of the 3 boys pictured at the right as they were gulping down water, just slightly out of breath, having just returned from a 15-mile bike ride. 15 miles, on rolling hills in central Pennsylvania! They were very tired but very proud of their feat, and that is how I got to chatting with them. What struck me is how kind and polite these boys were. Imagine trying to get 3 teens/preteens to “say cheese” for a picture even. It should have been difficult to get such a great shot, but it wasn’t. They were happy. Then something else struck me. Between all of the time in clinic, hospitals etc, these kids have become quite accustomed to interacting with adults. And it showed. They seemed so mature, having been forced to grow up so fast. All I can say is thank goodness for Camp Can Do, that they are surviving on their own and that they are literally giving these kids their childhood back … while being in the company of such amazing counselors, who I would rank among the most compassionate adults on the planet. They were all super nice too.

I am a supporter of Camp Can Do because I believe in a brighter today and tomorrow for children with cancer and their families, and that this camp provides the best medicine at the right time.

Feel free to contact me if you would like more info on Camp Can Do Forever, or if you have any updates regarding the camp(s) in your own community.

Author: Laurie Orloski

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Giving It All

GivingItAll_edited-1Editor’s Note: One day, their 9 year old daughter is perfectly normal and healthy. The very next day they heard these words, “Your daughter has cancer and it’s terminal.” It 2014-09-03 05.15.42 amhappened just that quickly. About one year later, Mark and Ellyn Miller lost their sweet Gabriella to DIPG brain cancer. From the outset, they decided that they wanted to do something to keep others from going through this horrible disease. They decided that they would donate Gabriella’s tumor to be studied to help find a cure.

iphone_Ellyn_edited-1I received this heart-breaking message this morning informing me that yet another child has died from brain cancer.

As you can see from the note, the parents made the agonizing decision to donate their child’s tumor, his brain.

I am caught up in so many mixed emotions whenever I hear this. On one hand, this is a tremendous gift which will lead to new and more effective treatments. It is such a selfless action on behalf of the parents. Trust me though, when I say that they don’t think of it as a selfless act. I’ve walked in their shoes, I know.

It’s bad enough that our babies, our children are being diagnosed with cancer. Then we throw them into this world where they are tortured by antiquated and ineffective drugs which make them so damn sick that they lose their hair, vomit for hours and hours, become “demented-looking” (as Gabriella called herself because the steroids puffed her up so much), are confined to the hospital or home…. I could go on and on. And we parents do this with the hope that maybe some drug might come along and keep them going just long enough for some other new drug.

I don’t for one second regret the decisions that we made for Gabriella’s treatments. Those treatments gave us 11 1/2 months with our precious girl. If we hadn’t done what we did we would only have had mere weeks. But I will tell you that I am haunted and tortured by the worst possible memories of what cancer did to my daughter. After receiving this message I am reminded of the 24-hours that surrounded Gabriella’s death. We had made the decision to donate Gabriella’s tumor. We were in a good place with that decision. But when someone dies there is not a lot of time before it would be too late to donate. It needs to be done quickly. Our Sweet G died. The funeral home came to our house to get her. They put her tiny little body inside of that black body bag, zipped it up and took her away in the Waiting_edited-1middle if the night. I insisted on going to the hospital the next morning for the autopsy. I didn’t want my little girl to be alone. I also wanted to see her. But, they wouldn’t let me. They said that death isn’t pretty. It doesn’t do nice things to the body. I would have to wait for the funeral home to “prepare” her. So we sat in a room next to where Gabriella was. Knowing that she was so close, knowing that she would never come home with us, knowing what was about to happen. Knowing doesn’t prepare you though. Knowing doesn’t prepare you for the sound of the saw that is used to cut your child open so that they can take the cancer out of her. Too late though, too late to remove the cancer because your child is dead.

And now another child killed by cancer. Another family not wanting others to go through what they have just suffered. Another mom, another dad going home to an empty bedroom…

Author: Ellyn Miller

Editor’s Note: Today, some of the greatest doctors in the world have Gabriella’s tumor, and the tumor of a little boy who, like little Miss G also gave it all. Using these two donations and others like them, these wonderful doctors are currently working on a way to destroy DIPG Brain Cancer so others will be able to live! 

If you find yourself in the same situation and need someone to talk to about making a tumor donation, Ellyn is available to talk to you. Please email all your contact information  to Ellyn@smashingwalnuts.org.

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September – #ChildhoodCancerChallenge

Moon_edited-1This will be PAC2’s 7th September, aka National Childhood Cancer Awareness Month. Starting virtually unaware, except for the worst fact about childhood cancer, over the years we’ve learned that the research funding for all cancers is not the same, and that funding for childhood cancer research is severely lacking, especially from some organizations not directly focused on kids. We’ve learned that kids need their own specialized research because they are not just little adults. We’ve learned that awareness can lead to funding which leads to research which leads to better treatments. We’ve learned that industry funds 60% of all adult cancer research but virtually no childhood cancer research (it’s ‘rare’ and non-profitable). Federal funding makes up the majority of funding for childhood cancer research, yet it barely cracks the $200 million level from a government with a total budget of $3.6 trillion and makes up less than 4% of NCI’s budget (adults get 96%).

We’ve learned that if we look at childhood cancer in terms of young lives cut short, or person-life-years lost; overall, curing childhood cancer would be about the same as curing breast cancer. Incredibly, seemingly without notice or concern from media or the NCI, we’ve learned that the incidence of childhood cancer has increased over those seven years, increasing from 1 in 330 to 1 in 285 kids under 20. We’ve learned that the 80% ‘cure’ rate is for five years and only means a 3 year old will live to be 8….not necessarily 80 or even 30. We’ve learned that the long-term survival rate is less than 80%, maybe as low as 66% on average, and of course for some kid’s cancers it’s virtually 0%. We’ve learned that 20% of the five-year survivors subsequently die from their cancer, a secondary cancer, or long-term effects of the “cure” or the treatment over the next 25 years, the gross term excess mortality. We’ve learned that 98% of the five-year survivors face long-term health effects from the treatment, with about half suffering severe or moderate life-long effects.

We’ve learned that so much more needs to be done.

But, we’ve also learned (early on!) that the childhood cancer community is made up of incredible people who bring diverse backgrounds and talents to the fight. We’ve learned that these people want to collaborate to cure childhood cancer faster; and we already knew that together we could change the world.

We’ve learned all these numbers and facts; but it’s so much less complex when your child has cancer or if you’ve lost a child. It’s really very simple: We as a country, as adults, are still not doing the best we can to save our own sons and daughters from the disease that kills more kids than all others combined. We need to challenge U.S. Capitol Building, Washington D.C.our leaders to do better, we are way past the awareness stage…..

So, if there is any way we can get a word in edgewise during the upcoming Congressional Childhood Cancer Caucus featuring Dr. Francis Collins, Director of NIH, on behalf of the 83 million kids under 20 we promise to issue the #ChildhoodCancerChallenge.

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Please consider joining us in DC this September:
On September 19 (9-10:30 am), the 5th Annual Congressional Childhood Cancer Summit will be held. Rep. Michael McCaul and Rep. Chris Van Hollen, the co-chairs of the Congressional Childhood Cancer Caucus, are pleased to host Dr. Francis Collins, the Director of the National Institutes of Health (NIH), who will deliver the keynote speech. We hope you will join us for this exceptional event. Please feel free to pass this invitation along to others who may be interested. Visit the Congressional Childhood Cancer Caucus at http://childhoodcancer-mccaul.house.gov.

The CureFest for Childhood Cancer Walk will be held in Washington, DC on September 21 from 9:00 a.m. – 1:30 p.m. The walk is an excellent opportunity for the childhood cancer community and the general public to stand together as one voice against childhood cancer (united!). The event includes an organized walk from the U.S. Capitol to the Washington Monument and back. Over 60 organizations have registered and hundreds of families will be in attendance. Kick off CureFest Weekend with the CureFest Welcome Event on September 20th. This family-friendly gathering is designed to welcome you to Washington, DC. The event will feature a short speaking program, live music and activities for the children. At the end of the event we will travel as a group to the White House for the “A Night of Golden Lights” candlelight vigil and rally.

Let us know your thoughts at info@PeopleAgainstChildhoodCancer.org.

Thanks, PAC2

Author: Bob Piniewski

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A complete schedule of childhood cancer events taking place during September.

 

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

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.  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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Lock Up September

lockup_edited-1We all know that September is Childhood Cancer Awareness Month. It’s a 30 day period each year that is set aside for the children, or is it?. It’s a chance for us to make the world pay a little attention to our community, or is it?. Each year in October, we converse among ourselves about how we did not have all of September to ourselves because the breast cancer people took some of it from us. Let’s think about that for a minute or two. Do people actually take some of September away from us? I submit that we may be  giving it to them?

Most of our friends and relatives know our personal cancer stories and, for the most part, support us. Creating awareness and asking for support is a lot like selling life insurance, Avon or Tupperware. If you have ever done this, you know it’s easy until you exhaust your supply of friends and relatives, then it gets very difficult. For most of us, when our child was diagnosed, our friends and relatives came running to us. Also, for the most part, all of them, because of their close association with us, now know as much about childhood cancer as we do. Here’s our problem. We facetoface2need to reach outside of our social circles! The childhood cancer community is mostly talking to each other on Facebook and we are not reaching the general public.  It’s a great tool for spreading awareness, but we seem to lack the ability to reach outside our own community or our normal social circles. Nothing, absolutely nothing, beats talking face to face!

This may help in creating awareness and gaining support. Develop an elevator speech. It’s a short talk that you can give, in a minute or less, to a total stranger. Seek out people you don’t know to get them interested in childhood cancer, tell them your story in a nutshell and then give them your Facebook page to “like.” Exchange contact information if possible. Use business cards (printed on both sides) with your information to pass out. Hand them something! Do not let them go away empty handed!

Child's DrawingTake some time off Facebook and go on a shopping field trip!   Contact everybody you buy stuff from and tell them how much it would mean to you and your family, child, hero, and or survivor to see GOLD in September.  Give them your cardLet them know that childhood cancer people shop in their store and would appreciate some consideration in observing Childhood Cancer Month by posting a sign or making a display.  Ask them now. You could even get kids to make signs  (they would love to) to give to the merchants. Think about it. How can a merchant turn you down? Think about how many people will see the message if you are successful in getting a sign in that high volume store or restaurant!

When it comes to seeing gold ribbons on store windows, or in advertisements, that’sBlackboardwearRibbon another story. Sorry to burst anybody’s bubbles here, but the people who make or sell the very stuff  you use and spend your money on everyday do not read our Facebook posts. They do not “like” our Facebook pages, much less our posts. They like our MONEY!  They are not aware that childhood cancer is a problem because it has not yet affected their business.  For the most part, until something has a measurable or perceived effect on them financially, businesses will not act. We must show them with our words and actions that it will have an effect on their future business.If you haven’t done so already, it’s really too late for 2014, but during the month, you can look for opportunities to write to companies (Pampers, Huggies, Enfamil, etc.) who have a vested interest in children and market their products toward them.   All the things children use should be targets of contact by email or letter. Maybe in September 2015 we can see more gold on the merchandise that is marketed for children. Write them this September and tell them how disappointed you were that they did not participate even though they market to children. We should fully support any business that is promoting childhood cancer awareness.

flavorIceCompanies like FlaVorIce  should be supported for their efforts to help increase awareness of  childhood cancer.  Use them as an example of what we would like to see on products they market to kids. By the way, FlaVorIce does this 365 days a year, not just in September. Why not ask those that aren’t, “Why not?”  We need to be heard OUTSIDE of our own community! Read the contact information on their package and CONTACT THEM and tell  them to have some gold stuff in SEPTEMBER. Many of the businesses you know well have Facebook pages. Think of the possibilities!

Get ready, this should not be a shock, but you are going to see more of the stuff below in September.  When you do, don’t get mad at anyone except ourselves. We did not create the noise that the pink folks did.

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Nothing is impossible If we stick together and get loud.

Author: Joe Baber     

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See what is happening in our nation’s Capitol in September!

 

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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…

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

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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Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , , , , | 3 Comments

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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September in Our Capitol

SeptinWash_edited-1

PGMAP_edited-1September 2014 in our nation’s capitol will be full of activities that will highlight the need for more medical research and an opportunity to show our government that we need to make childhood cancer a national priority.

Below is a schedule of activities that you may find interesting.  As additional information is received, this page will be updated weekly.

A handy Free PocketGuide with maps and locations of all the activities below is now available to print and take with you for all the week’s activities.

Tuesday, September 16, 2014, 7 p.m. to 9 p.m.

The American Cancer Society Cancer Action Network (ACS CAN) will be honoring those who have been touched by cancer and remembering those lost, with a Lights of Hope 8393404216_550b3d4f64_zceremony during the 2014 Leadership Summit and Lobby Day in Washington D.C.

Lights of Hope bearing the names of those touched by cancer will line the Capitol Reflecting Pool the evening of September 16, 2014 in an experience to fight back against cancer at the Nation’s Capitol. For additional information, please contact David Pugach at david.pugach@cancer.org .

Wednesday, September 17, 2014,  3 p.m. to 7:30 p.m.

Rally for Medical Research Hill Day Training Session and Reception

2014-07-07 12.12.54 pmThe Rally for Medical Research (www.rallyformedicalresearch.org) is both a call to action for Congress to make medical research a national priority, and a means by which to raise awareness with the general public about the importance of continued investment in medical research through the National Institutes of Health.  For more information, contact Mary Lee Watts (marylee.watts@aacr.org) or Jon Retzlaff (jon.retzlaff@aacr.org).  Register to attend here!

 Thursday, September 18, 2014,  8 a.m. to 4:30 p.m.

Rally for Medical Research Hill Day Breakfast Program and Congressional Meetings.  

Meetings will be held for participants with their individual Senators and Congressional Representatives. It’s a great opportunity to meet the people from your state and district that are representing you in Washington. This is your opportunity to let them know how valuable research is to you, your family, and our economy.  For more information, contact Mary Lee Watts (marylee.watts@aacr.org) or Jon Retzlaff (jon.retzlaff@aacr.org). Register here to attend.

Thursday, September 18, 2014,  4:30 p.m. to 6:30 p.m.

 A Golden Toast Honoring Congressman Michael McCaul and Congressman Chris Van Hollen, Co Chairs of  The Congressional Childhood Cancer Caucus.

Toast

This is a invitation only event to be held at Bar 201 in Washington, DC.

The child friendly event marks the fifth year of the cancer caucus and will  honor the Congressmen and their staffs for the tireless work they have invested over the years.

For more information, contact Annette Leslie (carrymecarson@gmail.com)

Henry&MeA special showing of the film, “Henry and Me,” will be held at the above  location immediately after the reception (6:30 pm). This animated film stars Richard Gere, Cyndi Lauper, Chas Paliminterri, Paul Simon, Luci Arnez and others, including present and former players of The New York Yankees and members of management. The story depicts young Jack, an avid Yankee fan, with the help of Yankee Magic, as he battles to overcome the cancer that afflicts him. The movie premiered in New York City on August 18th and has been shown in theatres in New York City and Los Angeles, with the sale of DVD’s and downloads to commence on September 30th. It is anticipated that Henry & Me will raise awareness throughout the country to the needs of childhood cancers. If you do not have an invitation to the reception and would like one and be able to see the film, please send an email listing those to be attending to reception@tnci.org.

Thursday, September 18, 2014,   6:30 p.m. to  9:30 p.m.

2014 Hyundai Hope on Wheels Gala

IMG_2902This is a invitation only event.  Hyundai Motor Company will be celebrating sixteen years involvement and over $87,000,000 in grants and contributions to childhood cancer research they have made during that time. For this wonderful event, Hyundai will bring together some of their top participating dealers, researchers, oncologists, representatives of major medical institutions and the object of everyone’s attention, the children and their families that have been affected by cancer.

Friday, September 19, 2014   9 a.m. to 10:30 a.m.

Childhood Cancer Caucus Summit

Keynote Address: Dr. Francis Collins, Director of the National Institute of Health

U.S. Capitol Building, Washington D.C.The Childhood Cancer Caucus (www.childhoodcancer-mccaul.house.gov) is a bipartisan caucus serving as a public policy clearinghouse for information on pediatric cancer and to be a forum for Members of Congress to work together to address this critical issue. The Caucus of over 100 congressional members strives to raise awareness about pediatric cancer, advocate in support of measures to prevent the pain, suffering and long-term effects of childhood cancers, and work toward the goal of eliminating cancer as a threat to all children. Congressmen Michael McCaul and Chris Van Hollen serve as the Co-Chairs of the Childhood Cancer Caucus.  The event will be in the Congressional Auditorium, Capital Visitors Center. For more information, contact Andy Taylor (Andy.Taylor@Mail.House.Gov) or Erika Appel (Erika.Appel@mail.house.gov)

Saturday, September 20, 2014  Tentatively 3:30 p.m. ~6:30 p.m.

CureFest Welcome Reception

nationals_park_entrance_343x189A welcoming event the night before at Nationals’ Stadium. This is the home of the Washington Nationals baseball team. This event is intended to be a casual family-friendly event being hosted by a group of foundations from the Washington-area. The cost of this event is $15 and includes dinner and dessert. The welcome event is sponsored by Stillbrave Childhood Cancer Foundation, Arms Wide Open Childhood Cancer Foundation/The Truth 365 and Kyle’s Kamp.

Saturday, September 20, 2014  7:30p.m ~8:30 p.m

A Night of Golden Light

WhiteHouse_LogoA Night of Golden Light is a CureFest candlelight rally to honor the children taken by cancer and all those still in the fight. Children, their families and advocates will gather in front of the White House holding gold lights. The mission of the rally is to generate public awareness for childhood cancer. For more information, contact Tony Stoddard (goldinseptember@comcast.net)

 Sunday, September 21, 2014  9 a.m. to 1:30 p.m.

CureFest Event

CureFest is an annual festival in Washington, DC that is the key component of the growing childhood cancer movement. CureFest is held in the Nation’s Capital in an effort to make childhood cancer a national priority. It is an opportunity for the childhood cancer community, the general public and elected leaders to come together as One Voice against childhood cancer. The ultimate goal is safer treatments and better outcomes for children diagnosed with cancer.

Curefestmall_edited-1Over 100 childhood cancer foundations and groups are expected to attend CureFest. (Last year 51 foundations and groups attended.) Over 1,000 individuals have indicated they will be attending, including over 300 volunteers. It is a family-friendly event with games and activities for all ages. The event will include live music, entertainment, and speeches by prominent pediatric oncologists, elected leaders, as well as children and adults impacted by childhood cancer. Dr. Peter Adamson, the Chair of the Children’s Oncology Group (COG, a pediatric cancer clinical trial network) will provide a keynote address. Featured will be moving tributes for children who have or have had cancer. The National Park Service agreed to allow us to host CureFest on the newly-renovated main Mall close to the U.S. Capitol. This is a much more prominent location and is very close to public transportation, food vendors and public restrooms. Go to the CureFest Facebook page and “like” the page so you can be updated on all the information as it happens.

Registration is now open for CureFest for Childhood Cancer 2014! Be a part of the growing childhood cancer movement and attend this important event on the National Mall in Washington, DC on September 20th and 21st.CureFest Walk. Go to www.curefestdc.org

For the first time, CureFest will include a 3-mile walk on the National Mall. Participants will enjoy historic views of the U.S. Capitol, the Washington Monument, The World War II Memorial, The Lincoln Memorial and The White House.

372469d4208597ea4c29e2dc005a1395The CureFest Walk was added for several reasons: One reason was to increase participation by the general public. Successful charity walks in the Washington-area typically start small but eventually attract several thousand participants within a few years of being established. There is a $20 per person registration fee to help offset the costs of the event. Register and get a free T-Shirt. Fees are waived for families directly impacted by childhood cancer.  A second reason is to provide foundations with a way to raise funds for their individual missions. When participants register for the Walk they will be have the option to raise funds for any childhood cancer foundation or group that endorses CureFest. Foundations do not have to attend the event but must be an established 501(c)3 charity in order to receive funds. Payments will be distributed to foundations through Crowdrise.

Online Auction

Last year half of the 51 organizations that attended CureFest indicated that they could not afford to pay an event registration fee of any kind. This meant that two foundations (Journey4aCure and Arms Wide Open Childhood Cancer Foundation) had to use their funds to cover the bulk of CureFest’s costs.

To pay for the operational expenses of CureFest (permits, security and rentals of tents, tables, chairs, generators, portable toilets, a stage and more) we are hosting an online auction through 24 Auctions. Our goal is to raise approximately $30,000 though the auction which opens on August 7. In order to reach this goal we will need the support of several childhood cancer foundations and advocates. Donations to the auction are being accepted at this time at https://www.24fundraiser.com/curefest

All proceeds from the auction and walk registration fee will be used to help offset the costs of CureFest. All foundations will have the opportunity to benefit from funds raised through the CureFest Walk and from donations received at the event on September 21, 2014

You can register for the CureFest Walk and the Welcome Event at: www.curefestdc.org. Registration is not required for CureFest attendees not participating in the Walk and for “A Night of Golden Lights.” These are both free. For more information about Curefest, contact Mike Gillette (mike@thetruth365.org)

Author: Joe Baber

Related Articles: On Capitol Hill is a summary of proposed legislation that may have an effect on childhood cancer.

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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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