Dear Charles Hemenway, MD, phD & Shirley Pulawski (author of the Article New movie portrays teen cancer unrealistically, expert says),
My children and I have been eagerly waiting for The Fault in Our Stars, authored by John Green (#TFIOS) to hit the big screen next week. To watch the trailer of this movie click here. We have all read it. My first read was painful, I’ll admit. Throughout the entire book I found myself praying for these fictional characters to beat the odds and just pull through. Be the exception to the 46/7 rule. If you’re reading this and you are not aware of 46/7: each school day in America, 46 children are diagnosed with one form or another of pediatric cancer. FORTY SIX. That is the average of TWO plus elementary age classroom. EVERY.SINGLE. DAY. Every school day – 7 children will die. Is this a “scare” tactic? NO. It’s the truth. (If you are a detail person and really need to see my history with childhood cancer, please scroll to the very first blog post on this (my personal) blog. If it’s alarming to you, we hope that it propels you into ACTION. If you have never experienced childhood cancer in your family – how lucky you are. But know this, the day before their child received their cancer diagnosis – cancer parents were just like you. They did nothing wrong, This lottery doesn’t discriminate and all babies are entered into the lottery without your permission.
7 pairs of shoes that will be empty by the end of today.
First, let me dispel any of the following myths that non-supporters may form in their minds about myself and the purpose of this blog post. As you’ll see, I’ve gotten this before. I am well-equipped and well-versed with my reply.
MOST COMMON MYTH 1. I am not, repeat NOT – the mother of a cancer child. I am not “sick with grief over the death of my own child” (which therefore makes me emotional and not clearly able to process thoughts). Supporting evidence to prove this myth. 1. Both of my living children (yes, I did lose late term pregnancies; they did not have the chance to get childhood cancer) are indeed healthy and cancer free. Thank-you, Jesus! 2. I know it’s hard to believe, but there are some advocates out there who (no matter what the situation – childhood cancer, school nurse gone wrong, etc) that will do whatever it takes to ensure ALL children are safe, protected and have advocates. Of course any mother could go to prison for any violation of her own children; then there’s those like me – who could go for ANY child.
Now, before we begin specifically, here is another myth that I’ll dispel before your mind even goes there. MYTH: “This woman must be a physician-hater. I read somewhere she had a botched surgical procedure with life-long effects”. TRUTH: Although I did have a botched surgical procedure in 1996 and am the winner-winner-chicken-dinner of post ERCP chronic non-alcoholic pancreatitis, I have devoted the last 21 years of my professional career to the strategical implementation, marketing, build-out, launching and day to day Practice Administration of highly successful private medical practices of not only Family Practice – but also the specialities of Obstetrics & Gynecology, Interventional Pain Management, Endocrinology & Diabetes, Pulmonology & Dermatology. I am educated and well-versed in these specialties and all Federal and State Compliance Programs. It could be said, that I am one of the biggest advocates for the private practice Physician. It has been said, that I am tough to work for, but alas, numbers don’t lie and even with the slippery downward slope of medicine today, my practices bottom lines are thriving.
I am glad that has been cleared up so we can get to the heart (or the point) of this blog post. This morning, I read an article on helio.com titled “New movie portrays teen cancer unrealistically, expert says”. The expert was you, Dr. Hemenway. It has crossed my mind that perhaps Ms. Shirley Pulawski didn’t send you a draft of this article for your review prior to it’s launch. It could have happened that way, but you may review this and ask for a couple of addendums in the name of liability and all.
Dr. Hemenway, this article angered me. Not in a little way. In a BIG way. It began early in the third paragraph where you are quoted as stating that “outcomes for most pediatric cancers are much better than the movie portrays, and the types of cancer the teens experience are rare.” I absolutely can see how your background would lead to a jaded opinion such as this. But let’s tell the truth, shall we? Okay, since your work is in Hematology/Oncology research, I am going to make a laywoman’s assumption that you have vast experience in numbers pertaining to Leukemias and/or cancer of the blood. True? Okay. In fact, Doctor, the reason that the general population thinks that childhood cancer is not an epidemic problem today, is because professionals such as yourself continue to state that these cancers are “rare” and that the “overall cure rate” is 70%. You are wrong, sir. The only reason this number can even closely be somewhat this high is because all Leukemia’s are lumped into this number. Praise God, the success rate of primary Leukemia’s is HIGH. But, let’s back those out. Now – what is the cure rate of all other childhood cancers? NOT 70%. Can you see how this can be misleading? (Yes, for your field of study, this looks fantastic (& may even lend to continued research dollars) but your point was – the movie doesn’t paint a realistic picture.) The movie isn’t portraying Leukemia. Therefore, this movie can not portray rainbows and ponies and “most kids with cancer do very well, because that makes everyone feel better”. I challenge you to review – your numbers aren’t realistic overall either. Please, let’s be real.
Cancer is still the leading cause of death from disease among U.S. children over the ripe age of 1. Cancer kills MORE children than cystic fibrosis, muscular dystrophy, AIDS, asthma and juvenile diabetes combined. In the United States in children from birth to age 19, more than 18,000 cases of cancer are diagnosed each year. While progress against childhood cancer has been made, cure rates for most pediatric cancers remain below 40% (not 70%)! This overall number is inflated when blood cancers are included. I’d also point out that NONE of the characters in TFIOS had the dx of Leukemia, therefore your comparison that childhood cancer cure rates are 70% would NOT have applied to the cancers these three teens had. I guess that makes this work of fiction closer to the truth than perhaps you thought?
For clarity: here are the reported most common forms of childhood cancer:
Leukemia (acute lymphoblastic leukemia and acute myeloid leukemia) – 90% cure rate
CNS, brain, and spinal cord tumors (including Medulloblastomas, Glioblastomas, DIPG) – 30% cure rate
Lymphomas, (including Hodgkin and non-Hodgkin lymphoma)
Skin cancer and melanomas
Thank you. You have encapsulated everything that I felt and wanted to say in this.
-An childhood cancer angel’s mom
Yesterday I sent Dr Hemenway an email with very similar comments. He returned my email. At this point he is reading and responding to people. You might want to send him your blog post. His email address is email@example.com
He needs some awareness and you phrased everything so well that he should see it!
Thank you for being an advocate. It is rare to find someone who fights for our kids unless they too have a child who was diagnosed. I also shared that it is not uncommon for kids fighting cancer to make friends with other kids who have “rare” types of cancer. I shared with Dr Hemenway our personal story of the friendships my son made and the outcomes of his friends. When we lived at Target House there was only one other child on our hallway who might have survived.
Once more, thank you. If you are on facebook please send me a friend request.
Tammy Jenkins Buchanan – mom, advocate and fundraiser for childhood cancer research
This is everything I’ve ever wanted to say (or scream). I can’t thank you enough for putting my thoughts in writing. Please continue your amazing advocacy for these children. My only wish is that my only son was still here. FIGHT LIKE ZACH. Forever 11.
Thank you so much for your amazing blog post! i couldnt have said it better myself. I am so enraged by this Drs comments about childhood cancer ! It isn’t rare. I lost my youngest son Chase to malignant Rhabdoid tumor 4 1/2 years ago. He passed away less than 4 months after diagnosis. There are so many kids in my town that have either passed away from cancer or have or are battling cancer. We need people to wake up and this Drs article isn’t helping . Thank you again so much
Maureen Olsen, mom to Chase forever 9
You couldn’t of sad it any better & as the founder of Team Jojo I couldn’t be more proud to call you my friend! 💛
Team JoJo..keep up the good work! Never apologize for fighting for JoJo..and all of our other kids! I wish none of us were in this club..but if we have to be here..I’m glad to be in your company!
p.s. for readers..please visit the team JoJo page above and give if you can. We’re in a race to beat a fund raising timeline to get JoJo to Boston for her cancer re-check!
I have been a prayer warrior for all sick children on F.B and wherever. Team Jo Jo is one of them . I have never doubted for one moment these are real children. I am 77 and my children never had cancer, I knew people at church that we prayed for . After all the years I have been a prayer warrior I was suddenly faced with my Granddaughters 12-mo old son being diagnosed with a cancerous growth on his Kidney and was there at birth, undetected. He has had his last chemo treatment and he had one kidney removed. This is just one juvenile illness that is running rampant in our country. we need more research and that takes money. I give as much as I can. We should all be responsive to
these parents plea. I now read everything I can about , cancer, Batten, Krebbs. These are all new to me.
Mr. Price, We too, will be praying for your great grandson. I rely on the fact that what is above our heads is under God’s feet. – Lori
Thank you! I read the article mentioned as well and I almost blew my top. I know 2 lovey 12 year olds with Gus’ cancer and I knew a 16 year with Hazels cancer (Esther earl who the book was inspired by) thank you for clearing it up. Now I can finally show something to my friends who didn’t think it was realistic
In the world I live in, it’s not only realistic…but if some of the teens lived long enough, they may have had the chance to fall in love. Reality is tough for many, and especially to those who have not experienced such tragedy. Thank you for reading and for taking the time to comment. 46/7.
Leukemia is not a cancer success story. 90% cure is a lie on more than one level. There is an increased survival rate, for which we are grateful, but there is also an increased diagnosis rate. St. Jude, who perpetuates the good cancer myth themselves, reports 2500 leukemia diagnosis’ in the US a year. With an inflated 80% survival rate, that’s 500 American children dead yearly at the hands of leukemia. The second lie is the very word cure. Cure, by definition, is a return to health. Having been immersed in leukemia since my son was lucky enough to “be blessed”, as one Cancer Mom stated on a well known website when making the inevitable “good vs bad cancer” comparision, in August 2008, relapsed 2010 (Acute Lymphoblastic Leukemia is the most diagnosed cancer in children, relapsed ALL is the 7th), I don’t know a single child who has been returned to health. I know many who have survived but they endure a myriad of short and long term side effects from treatment. My son had 21 rounds of cranial radiation and 11 rounds of spinal radiation. He will never be healthy and he is highly likely to develop a secondary cancer due to treatment. Ironically, he’s already counted in the 5 year survivor category even though he’s only been off chemo 4 months. It’s beyond me why people insist on holding leukemia treatment up as the gold standard. I had a first cousin die in 1961 of leukemia while trialing methotrexate for NIH. Methotrexate is still a primary chemotherapy agent. The only difference in the last 50+ years is that we give kids more of it often causing seizures (my son had 2), sometimes causing temporary blindness and usually creating a host of other neurological problems. Our kids deserve better, all of them. Even the “lucky” ones.
Your points are great and valid. Cure and cancer free are used very loosely in language, and I agree. Some Leukemia, not all have a better success rate than others, but the child is very rarely returned to a positive health status. I so agree, they deserve far FAR better. My best wishes to you and your son.
Thank you. You are an amazing, eloquent woman.
Joi Becker, thank-you, but you know that was written in my stars! Someday, to catch my sister!;)
Reblogged this on that MADDENing teacher.
Dear Lord-AND YOU-thank you for delivering these horrible-yet-should-be-known facts. Please, how can I help?..Facebook has sadly enabled me to see what’s really going on..there must be a new word definition for childhood cancer :”rare”=unaware ??? ..thank you..Beth
The best “help” is raising awareness in the general public and writing your local, state and federal legislators along for their support. We desperately need to have a much larger portion of our federal budget earmarked for pediatric cancer. Thank you for commenting.
Sometimes lightening does strike twice. There are only 150-160 cases of infant leukemia diagnosed each year (which does not share the 70% stats — it has on avg 40-50% – my sons type was 10-20% with chemo and 30-40% with BMT ). But we discovered after dx that a friend of a friend who attended the same high school as my husband also has a child with infant leukemia. Boom, lightening — twice.
I had seen posts on fb but never realized the grave statistics this family was given because prior to my sons dx because my perception of childhood cancer was distorted by the childhood ALL stats. Personally after hearing the preliminary dx of our son, I thought “leukemia, we can beat this!” I should have realized it was far worse than that when all three docs had tears in their eyes.
My son died in late July, and the other child has just completed treatment and is in remission (but is by no means out of the woods) — a highly personal example of the grim stats in action.
I have known Chuck (Dr. Hemenway) for over 10 years and I do feel like the article written here unfairly ties two different issues together and place the cause of the issues on him. Firstly, it is a shame that pediatric cancer research receives so little funding. There is a reason for that and hopefully with the current times changing, this may change too. But this issue should be directed towards the NIH/NCI and perhaps ACS itself rather than to place it on him citing the ACS as a source.
I do agree that generalizing all pediatric cancers are curable may not be the correct wording but it is, in all attempts and purposes, a generalization and who has not done that before? We all make generalizations and can take things out of context in terms of quotes. And this is what I feel has happened here. However, this does not mean your article is incorrect either in terms of statistics for all the cancers.
What one always has to realize is several things that are in the physician’s control and what isn’t. And the focus of the article should be pulling to the forefront the issues of funding, focus etc rather than a generalization taken potentially out of context.
Since my e-mail is logged as part of this comment, feel free to reach out to me as you’d be surprised by a lot of things – sometimes it is better to understand a quote and the context in which it was spoken in than to jump to certain conclusions and make potentially false assumption of things.
Thank-you for taking the time to reply. I am certain that Dr. Hemenway has done many great things during his career. I believe, I ever applauded his efforts in his field. I took the time to write to Dr. Hemenway myself. I respectfully disagree about blaming the source that was cited versus the person who did the citing. One should take the time to know one’s source – (ACS) – especially when one is so highly regarded. Honestly, it really doesn’t matter what context the ACS was used in – they have made their stance on childhood cancer – crystal clear.