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:

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Immunotherapy

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I 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.

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.

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Click here for more on this article

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 , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 1 Comment

Five year cure, …really?

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Five-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.

2019SurvivalRateImprovements_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 such a way that  others outside of the childhood cancer Diagnosis_edited-1community 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 84% 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. 

There are several pieces of good legislation in play now that would benefit childhood cancers by improving research opportunities and increasing drug development.

Author: Joe Baber

Updated 9/17/2021

The following article was written by CJ Colton in February 2013. 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!

Editor’s Note: In 2017, CJ’s son, Tony was eventually stolen by cancer at age 17

Author: CJ Colton

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

A Pair of Shoes

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One day in September, after my wife Ellie and I visited a Senator in the Hart building, we met up with Ellyn Miller (Gabriella Miller’s mother) 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. Our grandson Conor is a survivor of neuroblastoma and Ellyn’s daughter was taken by DIPG brain cancer. We had a lot of visiting to do on the Hill. 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 for childhood cancer, 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 other mothers who have had a child taken by cancer.
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Hope

hopeHeader_edited-1From his perspective, my then 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 when he was diagnosed with high-risk neuroblastoma at two years old..

Conor’s ordinary life started to unravel when he was about nine years old. Then 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.

Five years ago, Beth Anne decided to bring Conor (then 10 yrs-old) to Childhood Cancer Awareness Week in 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 the very first Golden Lights 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.

This year, the 2020 CureFest  had to be a virual event, but because it was virtual, it reached others around the world.  My hope is that in 2021 we will be able to return to the Mall  in Washington, DC.  If it does, I say, take the kids and grandkids and give them an education of a lifetime…

Author: Joe Baber, Conor’s Grandfather

Related Articles:  Survivor, Survivor 2nd Edition and Help Save Hope

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September’s Child

In 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 6 (as of 2020) new pediatric cancer drugs have been approved for children over the past 35 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

updated 11/22/2021

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

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’s sweet Gabriella was taken by 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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BestCare_edited-1Your child has cancer, what next?

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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.

Update: In September 2019, Steven was diagnosed with two more cancers. Now he is fighting his 3rd and fourth cancer as the same time.
  • I learned that cancer is the leading cause of DEATH (from a disease) in children.
  • I learned that there haven’t been any new drugs developed in over 20 YEARS to treat children with cancer.
  • I learned that the statistics for Adolescent and Young Adult (AYA) cancer survivorship has not improved in twenty years.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Where is our ROCK HUDSON???

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

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

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

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

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

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

Author: Angie Giallourakis

2/09/2020 UPDATE:  In September 2019 , Steven was recently diagnosed with cancer and is now fighting two new cancers, Renal Cell Carcinoma and a Soft Tissue Sarcoma. He is currently in treatment.

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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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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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Want to Make a Difference?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Author: Laurie Orloski

 

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Seeing is Believing:

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

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

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

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

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

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

Author: Laurie Orloski

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Five Reasons Why You Should Join the Fight Against Cancer

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

This Grey Matters Blog

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

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

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

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30% Funding Cuts

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

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

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

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

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

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

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

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

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

Author: Steven Crowley

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

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Ellie’s Hats

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

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

Some feedback that we have received

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

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

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

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

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

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

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

Author: Jay Coakley

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

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A Home Away From Home

LadybugHouse_edited-3

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

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

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

LadybugUtube_edited-1

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

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

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

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

Author: Joe Baber

Last update: 11/5/2019

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Your child has cancer, what next?

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

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

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

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

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

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

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

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

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

Author: Blyth Lord

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

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Related article: Palliative Care – Misunderstood

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Cameron Week

Cameron Week_edited-1

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

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

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

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

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

God bless you Cameron.

Author: Blyth Lord

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