Changing the Paradigm for Childhood Cancer: From Cure to Prevention
September is Childhood Cancer Awareness Month, a time dedicated to raising awareness about this insidious disease that is expected to claim the lives of 1,730 children between 0 and 19 in the United States in 2020, according to the Coalition Against Childhood Cancer. This year, we wanted to help shed light on the need for taking a proactive approach towards childhood cancer prevention to help reduce the number of children diagnosed with cancer. That’s why we have dedicated our Eco Maven section this month to three parents who are sharing their very personal stories and their visions for a world where environmental pollutants are eradicated. We thank Jonathan, Anne, and Mary Beth for their incredible work to build a toxic-free future for all of our children!
Executive Director for the Max Cure Foundation
1) As you well know, cancer can touch anyone. In your case, you had the heart-breaking experience of losing your child. Alexis inspired you to continue her battle, and you’ve devoted your time to the inspirational fight to see the end of childhood cancer. What have you learned about cancer through your experience?
More than I can articulate and less than I can understand. Cancer isn’t simply one disease or one identifiable disease process. Within the context of working in the childhood cancer community, what I’ve learned more than anything is that there are so many separate components and issues to the puzzle and unfortunately there are a significant number of missing pieces that have to be found to make any major progress
2) Are you satisfied with how childhood cancer is discussed and treated in the U.S.?
The short answer is no. For many, the picture of childhood cancer is one of little smiling bald-headed children who are treated at a major facility while being visited by celebrities, staying at the Ronald McDonald House, finishing treatment, and living happily ever after. Nothing could be further from the truth and the disinformation presented by this messaging is distorting the realities that children with cancer and their families face. We hear about the successes, but the truth is that for many forms of childhood cancer there have been no improvements in treatment overall for decades.
3) Why, with the funding for cancer research, do we still see an increase in childhood cancer diagnoses?
This is a complex question that has many different layers. First, there is the way cancer research is funded and the underlying metrics that accompany those funds. A significant portion of funded research never leaves the laboratory or goes further than a scientific paper. Secondly, and most importantly for the purposes of this question, there is an insignificant amount of funding and focus on the issue of the prevention of childhood cancer. It is a concept that is often accompanied by significantly charged emotions and it has not garnered the attention on the same level as the “cure”. More funding needs to go into investigating the underlying causes of the rise in incidence rates of childhood cancer and viable solutions.
4) Are other countries doing a better job of preventing and treating childhood cancer, and if so, what can we learn from them?
Not that I’m aware of, although there are certainly better regulations in other nations with respect to the labeling and reduction of hazardous chemicals, as well as better testing.
5) Tell us a little bit about The Max Cure Foundation. What should people know about it, especially with regards to the new cancer initiative that has recently launched?
The Max Cure Foundation was founded by the Plotkin family, in 2008 after Max Plotkin, then four years old was diagnosed with a rare form of cancer few had ever seen before. He underwent intense chemotherapy and thankfully is a 12-year cancer survivor. After learning about the lack of federal funding for childhood cancer research and the financial weight that families must bear, the Plotkin’s began the Max Cure Foundation to help fight against childhood cancer.
With respect to the new prevention initiative, it represents a significant turning point for the conversation surrounding the prevention of childhood cancer. In general, the topic has been discussed in hushed tones for many years. This initiative is a major attempt to solidify a discussion about preventing childhood cancers in a viable manner that brings it in line with the “cure” community, while also seeking to work collaboratively with companies who are interested in the health and welfare of children. This is not an initiative based upon targeting corporate interests. Rather, it is built upon the premise that we as a society can and should rely upon science and evidence and work collectively to protect the most vulnerable population: children, from harmful chemical and environmental exposures that they are exposed to in utero and during their early lives.
6) Is there anything you would like to say to parents who are going through a similar experience of having a child with cancer?
There is way too much to be said than can ever be fully explained. As I’ve expressed before in other spaces, the loss of a child is not something that parents ‘get over’ or ‘move on’ from. You don’t want to move on or away from your child. The most important piece of information I can leave parents who have a child diagnosed with cancer is to never second-guess your decisions or choice of action for your child. Advocate fiercely and never shy away from aggressively seeking what your child needs, while taking care of yourself along the way.
Anne Reynolds Robertson
Environmental Philanthropist, Entrepreneur, Founder of Toxic Free Future for Our Children.
1) As a mother of four, how would you say your children continue to impact and inspire the work you do?
My journey of discovery on the harm toxic chemicals are causing us all, especially our children, started 23 years ago when I was a new mom and concerned about the health of my young children and newborn baby. While my children are all grown now, they continue to inspire me to do this work because I hope to be a grandmother sometime in the future and that motivates me to rid the world of toxic chemicals and create a Toxic-Free Future for Our Children.
2) You moved into a new home where you learned that several members of the previous family had passed away and you developed a strong curiosity to understand the connection between toxins and health. Can you talk about that process and your findings?
My journey of discovery started when I moved my young family into a new house 23 years ago, at that time I had a 3- year, 2-year, and a one-month-old baby. And it all started because of a serendipitous meeting I had two weeks after moving into that house where I learned that several members of the previous owner’s family had died of cancer while living in the house. At the time, I had no knowledge that there were harmful and carcinogenic chemicals in everyday products, including baby food and baby products. I had many alarm bells that were going off and my consciousness was beginning to wake up, but I had no way to confirm if my intuition or mother’s instinct was correct until two years later when I had another serendipitous meeting with the Executive Director of Healthy Child Healthy World. She confirmed that there was reason to be concerned that indeed there were many unknown health risks from exposure to harmful chemicals in everyday products and food and that there were ways to reduce the health risks for my children.
3) What are some of the biggest eye-opening facts for you about the effects of toxins and chemicals in our food?
Chemicals are used in every step of the process that puts food on our table. From production and harvesting, to the processing, packing, and even transportation, all making consumption of food dangerous to our health. In addition, some of these chemicals remain in our food and many in the environment and our bodies for decades to come. We use over 1.2 billion pounds of pesticides per year in this country and furthermore, researchers have found pesticides in amniotic fluid. Several studies are currently measuring amniotic fluid, also known as cord blood of newborns, but one study in particular identified an average of 200 contaminants, including organochlorine pesticides in newborn cord blood and these are just a few of the biggest eye-opening facts about the effects of toxins and chemicals in our food.
4) What can you tell us about the role that toxic chemicals play in pediatric cancer? Is this a conundrum with real solutions, especially knowing that 80,000 chemicals are currently used in everyday items, and most haven’t been tested for their health effects?
While I am not a researcher or a hard-core environmentalist, I am first and foremost a mom who witnessed first-hand as a child how several members of my family died of cancer. I believe that experience sensitized me to doing everything in my power to help prevent cancer, as well as other serious chronic illnesses for my children and many others. I have now spent the better part of two decades learning the complexities of the problem as well as the solutions, which is why I am launching Toxic Free Future for Our Children, to bring greater awareness of the problem as well as bringing solutions to the marketplace and to the American public.
5) When trying to educate people and organizations about the reality of toxic chemicals, what has been the hardest thing to accomplish or understand?
For me, the hardest thing in educating people about the reality of the harm of toxic chemicals is that the chemical industry, much like the tobacco industry, has spent and continues to spend an enormous amount of money on deceptive campaigns that plant the seeds of doubt about the harm their products are causing. Ten years ago, I read two books that educated me on how the tobacco industry created a playbook that the chemical industry, as well as other industries like Opioid, have adopted to manipulate the science so they can delay regulation, litigation, and in some cases like leaded gasoline banning a product altogether.
A current example of chemicals that some consider to be the tobacco of the chemical industry is PFAS, PFOA, or C8, which is the backbone of the chemical giant Dupont and was the subject of a recent movie starring Mark Ruffalo, called Dark Waters. Until recently, few people had heard about C8, one of tens of thousands of unregulated industrial chemicals in the US. It’s called C8 because of the eight-carbon chain that makes up its chemical backbone and it has gone largely unnoticed for eight decades until recently when according to a 2007 analysis from the CDC it’s in the blood of 99.7% of Americans, as well newborn babies, the cord blood of new born babies and breast milk. So as a result of decades of deception, this chemical like tobacco is a symbol of how difficult it is to hold companies responsible, even when there is scientific evidence that their products are linked to cancer and other diseases.
6) What would you like to achieve this Childhood Cancer Awareness Month?
What I am most interested in achieving this Childhood Cancer Awareness Month is to connect the childhood cancer cure community with the prevention community. I have been part of both for many years and been frustrated that there was little to no awareness and communication between these two communities. This is beginning to change though as a result of the Childhood Cancer Prevention Initiative, and now the Childhood Cancer Prevention Report, but there’s still a lot to do. I would also like to plant some important seeds in the business, policy, investment, and legal communities to raise awareness about the importance of this issue, and that way help to build bipartisan bridges.
Mary Beth Collins
Parent advocate in the childhood cancer community for over 21 years and author of the blog, Survivorship Matters.
1) Your view is one that we don’t get to hear often. Cancer not only affects patients while going through treatment, but in many cases, the aftereffects of those treatments include the development of other health issues. Tell us about your story as a parent of a cancer-survivor son, who developed chemo-induced hearing loss, among other health issues.
When you review your treatment protocol with the pediatric oncologist, you are given a huge binder that outlines all of the chemotherapies they will be giving your child, and list related side effects. It is an overwhelming reality of what your child is facing. And quickly the doctor reminds you of the stark reality: “Your child has to be alive, to experience these side effects.” Survival is the priority, and if you are blessed with that success, you worry about the rest later. Then it becomes later. You face the initial side-effects after treatment that you reason will settle out in time. We experienced issues right away: chemo-induced hearing loss, lactose intolerance, speech regression, migraines. We had to worry about asymptomatic strep, because untreated it would become a threat to the remaining kidney after the other was taken in surgery. And Josh contracted asymptomatic strep all of the time. As he got older the lactose intolerance healed, the strep symptoms were no longer a concern, and we thought that finally things could be a bit easier.
Then as he neared puberty, the hormonal changes and the brain exuberance that occurs at this time exposed new areas of damage we didn’t realize. His moderate to severe hearing loss progressed to profound. He also developed the related auditory processing delay and tinnitus, exponentially increasing his challenge to hear. Neurological testing exposed cognitive decline and chemo-induced ADHD. He developed cardiomyopathy. His digestive issues returned, causing issues with his intestines. And with no psychosocial supports in place, he encountered all of these changes without the understanding of a specialist who could help him process and cope with challenges that significantly impacted his quality of life. Additionally, we were aware of the threats of premature aging of his organs, and the possibility of secondary cancers developing. I must add that while Josh’s situation has been a difficult one, survivorship is a spectrum. While the group is small, some survivors experience no side effects at all. And then of course there is a huge group in the middle that have experienced a small handful of issues. And then there are the more concerning cases like Josh. We are still learning a great deal about survivorship now, as more children are in fact surviving.
2) Are the health problems of your son Josh permanent effects of the treatment? How is he doing now?
The challenge with survivorship is that you believe the challenges are over when the treatment ends. Instead, what you learn is that the side-effects you encounter will continuously change. There isn’t much permanency in survivorship. And unfortunately, the news is typically bad because seldom do you see improvements. The profound hearing loss, chemo-induced ADHD, cognitive decline, and migraines make for a very difficult challenges in daily life. He may never be able to live independently but we strive for the best. He is determined to not settle for just surviving but living a life of value. He has created a music mixing studio in our basement and is determined to create a life and a career out of his love of music.
3) How did this experience change you, your two sons, and the dynamic of your household?
Josh was just turning two at the time of his diagnosis. His younger brother was only six months old. We were just at the beginning of our parental journey. So, it is hard to say how it changed a family only in its infancy. I separated with a husband who didn’t cope well with the circumstances while in treatment. It is hard to calculate just how much of these impacts were due to cancer or the single parent experience. What I know for sure is that my family has been a very loving and centered trio. When you can’t enjoy faith in the years ahead, you plant yourself in the present. We’ve made the most of each day, celebrated the best of each other, and appreciate life’s little blessings.
4) What would you like to tell parents of a child diagnosed with cancer?
First, you are not alone. We are all walking this journey together and are here to help one another. Many are available to answer questions, share their experiences, and provide support and hope. And some of the best referrals to resources and information can come from other parents who have traveled a similar path.
Second, have faith in the team you select to treat your child. The decision process for some is hard, but once you have researched and made that decision, invest in your relationship with your team and partner with them as the experts in your child’s treatment at every step of this journey.
Thirdly, take good care of yourself. This experience makes parents and caregivers exceptionally vulnerable to depression. Make self-care a priority, too. Identify your support team. It is an important way to show your child you care by staying strong and centered as best as you can, so you can be there at your best.
And finally, stay in the present. It is hard to tackle all things at once. And some crises may leave you tackling an hour at a time. Keep your focus on what is in front of you and find small everyday gratitude in what is happening, in case the next day is more difficult. We get through this one step at a time. This is one of the hardest things a parent can encounter, but you will discover some of the best in humankind along this journey that will touch you deeply and inspire you to keep going.
5) As a passionate and determined advocate in the prevention, survivorship, and psychosocial support, what can you tell us about the financial effect on so many families after going through cancer treatments?
It’s termed financial toxicity and it affects all families to one degree or another. The fight is difficult and long. It requires significant medical intervention. While in the fight you think to yourself “If it would take millions, I’d go into debt if my child could be saved.” And then you get the bills, and it feels like millions. My son’s treatment was back in 1999, when we still had life caps on insurance payouts. By 2000, at age 3, Josh had exhausted almost 2/3 of his lifetime insurance cap. And we’ve seen specialists and had other medical interventions since then. Paying off the treatment bills, managing current medical needs, supporting your survivor with academic accommodations, and just wanting to be there for your family is a monster of a financial challenge.
21 years later, we are still in debt and I’ve developed PTSD to managing money. Dollar bills can only stretch so far, and years of barely making it work take its toll on you. I was a corporation communicator and events planner prior to having my children. When I needed to return to work, now a single mother, I had to find a job that worked around the school schedule so that when schools were closed, I could be with my children. I also needed a job that I could leave at any time because of my son being sick and needing to come home from school, or not going into school, or needed to be rushed to the hospital. The reality for me was to work in the more flexible non-profit world. Unfortunately, that decision is also accompanied by accepting lesser salaries and almost no benefits. I’m 51 years old, with intimidating debt and no retirement. That is financial toxicity.
6) There are many organizations and hospitals dedicated to the treatment of cancer. What are the options for patients and their families to cope with the long-term effects of chemotherapy and other treatments to combat the disease? Are there resources that you know of providing support after treatment?
Our doctors have done a wonderful job of moving treatment forward and saving more children now than ever before. I am looking forward to days when that same tenacity targets survivorship side effects. Currently, there is a spectrum of acknowledgment of side effects. Some survivors at “survivor clinics” hear that the job of the evaluations is to document side effects, not treat them. While it is a clinical approach to study the after-effects of treatments, our survivors are human beings, not lab rats. I personally have had to support survivors in tears struggling with that statement.
Other survivor clinics do a better job with supportive dialog but little promise to help with side effects. We personally have spent so much time with doctors and evaluations that Josh is exhausted with it all. But further, he has lost faith in the medical experts. He has stopped regular evaluations and not shared current symptoms. “What’s the point,” he’ll say. “If I confirm I have a new symptom that isn’t currently in my file, the first thing they want to do is test me. Most of the time that is a half a day at the hospital. Then we have to return on a separate day. Both days I have to cancel other things I want to do. Only to hear that the results are bad, that they can’t do anything to help, and that they want to continue testing to keep track of how bad it gets. I got the message. My health is horrible. I don’t need them to keep telling me over and over. I’d rather spend that time doing things that are good for me. Especially if I’m feeling good that day.”
Survivor clinics could benefit from some enrichment. But more importantly, they would benefit from adopting standards already set. There are 15 standards outlined in the Standards for the Psychosocial Care of Children with Cancer and their Families. My family has not benefited from receiving any such support. But this is not to say that we do not have the luxury of some incredibly knowledgeable and caring people doing their best for our survivors. You can find a hearty list of long-term survivor clinics listed and discuss with your own team what they may offer post-treatment.
We have had the incredible pleasure to have Josh’s care managed by a woman who was part of the diagnosis team in January 1999. Josh has grown extremely close to her, and when he is concerned about an issue, she is happy to have him text her and discuss what needs to be done. These days, those texts are mostly related to dire circumstances when he is afraid of larger symptoms. Our team is always ready to respond to the best that they can. But for a growing group of survivors, over 500,000 to date and growing yearly, we need to do more. These teams are ill-prepared to be an expert in cancer and survivorship. We need to develop this necessary niche and create experts in the multitudes of challenges that rob survivors of their quality of life.
We need more parent education to prepare them for the challenges of survivorship. We need self-advocacy development for survivors to start at 14 years old, so that survivors become more familiar with their health, how to report on their symptoms, and how to successfully advocate for their needs. HIPAA commands that they operate independently at 18 years old, and those with complex health issues are overwhelmed by the burden of navigating it entirely on their own. And we need more support and services in all areas for our survivors.
We have fought hard to keep them alive, but they are forgotten in their survivorship. My son has told me three times: “Mom, there is a fate worse than death, it’s this.” I didn’t fight for my son to survive just to keep struggling every day. I fought for him to thrive in a life worth living. These survivors deserve the support and services needed to do just that. Our survivors deserve so much more.