The Fault is in Our Stars and an open letter to Charles Hemenway, MD, PhD.

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

Soft tissue tumors (including rhabdomyosarcoma)
Germ cell tumors
Neuroblastoma
Bone cancers (including osteosarcoma and Ewing sarcoma)
Renal cancer (including Wilms tumor)
Retinoblastoma – (oops this is Isaac’s form of cancer, now how did that make the list since it’s so rare!)
 Since it is still May and May is brain cancer awareness month, I’ll use pediatric brain cancer as my example. It is estimated that 4,500 Pediatric cases of brain cancer are diagnosed each year in the United States alone. Do we want the public to believe that 70% of them survive? Let’s try 30% – in a good year. This example shows exactly what the problem is. 70% is a “feel good” number, but it does not apply to all subsets of childhood cancers. 30% = not winning. That’s a variance of 40%.  Mr. Green hit the nail right on the head. There is a fault in our Stars. The fault is – misleading numbers, misleading cure rates, misleading drugs and drug protocols made for adults and titrated for children. I thought I was riled at your comment “…I think it’s perhaps not appropriate to focus exclusively on that” – meaning, you felt the movie focused on the negatives of childhood cancer, but in your world the outcomes are generally good. Come on out from under that rock! But then, I read the next sentence. “According to the American Cancer Society…” then, I threw up.
 The American Cancer Society. The same one that uses beautiful photos of children in their ad campaigns with a slogan of “more birthday’s, yet gives VERY LITTLE to children with cancer? Doctor, let’s review:
Funding for pediatric cancer clinical trials has gone DOWN every year since 2003.
In 2006, the National Cancer Institute’s (NCI) federal budget was $4.6 billion.
 Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%. Childhood cancer research only gets 2.96% of the money raised by the American Cancer Society.  In dollar terms, NCI’s funding for pediatric clinical trials is $26.4 million while funding for AIDS research is $254 million, and breast cancer is $584 million. Pediatric cancer research is not only grossly under-funded by the government, it is also largely ignored by private drug companies. Pharmaceutical companies fund over 50 % of adult cancer research, but virtually nothing, nada – for kids. Pharmaceutical companies don’t commit resources to childhood cancer research because the adult cancer drug business is viewed as more profitable and less risky. Accordingly, there is an estimated $30 million a year gap in childhood cancer research funding. I have to ask, Dr. Hemenway, why would a Physician such as yourself cite the American Cancer Society as a source relating to an article on childhood cancer, when they could not give more than 2.96% care to this topic? I have read your curriculum vitae, and from the University of Massachusetts Medical School, to the University of Florida in Gainesville,  to Duke University, to Tulane in New Orleans, and finally to Loyola in Chicago. Yes, sir – I expected better sources. After all, it’s just one little online article that perhaps no one would see, and it’s not that big of a deal? Perhaps, someone in the department used your name because that pesky reporter called, AGAIN? Maybe? Clearly, your administrator would never do such a thing, nor would you sign a document you hadn’t read? (If they did, fire them).  Unfortunately, closer to the degrees of separation – I indeed have an extended family member studying pre-med/pediatrics at Loyola. So, what is my problem? Please do not impress on our youngest/newest Physicians-in-training these misleading facts and information such as the above. My unborn grandchildren are counting on these doctors to be able to appropriately identify & diagnose these “exceedingly rare” forms of childhood cancer. That’s my problem.
  For continuity purposes, you state that it is highly unlikely that the three characters would meet each other in a support group. First, because their types of cancers are exceedingly rare, and second – for teens to have them and all meet in a group would be like “lightning hitting three times”. SOMEONE CALL JIM CANTORE – lightning is striking more than three times in the same place – in my little community. Say, what? Yikes! True: Taylor Filorimo knows JoJo Siebert and Clinton Milliken. But that can’t be. Tay’s dx – Renal Cell Carcinoma (you know, “rare” and most commonly dx’s in 50+ year old adults); Clinton’s dx: Medulloblastoma (again “rare” and no where near a 70% cure rate) – and JoJo – Orbital Rhabdomyosarcoma (woah – must be rare!). Correction: these children once knew each other. Both Taylor and Clinton have passed away. JoJo is in remission and we pray, remains cancer free. This brings our survival rate to 33% of this subset of three. Lightning struck and the survival rate was no where near 70%!
   clintoncfh.jpg (636×960) jojolorilikes
  This article continues to give (me a near TIA). You are quoted as saying “Children are more emotionally resilient than the movie portrays,..My experience is that when kids are confronted with serious illnesses like this, they rise to the occasion and put the “Why Me? behind them and get on with getting better.” Phew. I can agree with you on this – children are indeed, resilient. They live in a world where all they know is to trust the adults around them. Without these adults, they have no voice. That’s where we, as American adults collectively, fail them.   Children are used to receiving instruction. So when Mom or Dad says they are going to the hospital to have their head bolted to a table, they’ll do it. They’ll giggle and laugh and right up until the very end, be ever hopeful. You see, their lives have not, until now, been tarnished by the unfairness of the world. Until now, their needs have been met. They believe like children, they innocently trust. I wonder if you’ve ever been intimately involved with a pediatric cancer patient? I don’t mean as in reviewing their chart, or a 10-15 minute bed-side encounter. More like, holding their puke buckets, accessing their ports in the middle of the night to hang their meds at home, on no sleep for the 17th month straight? Maybe, you were spending the day just playing with a just-turned-seven-year-old’s toddler brother, just dancing to the music in the car as you were driving and the little Ninja warrior sitting next to you seized and had a stroke that would, 5 days later, take his life. You see, in our world, outside of Leukemia research – this is not rare. It is not 70% successful. It’s more like that of Hazel, Augustus and Isaac, except some of these kids are younger.
  Dr. Hemenway, in no way should you take my letter as an insult toward your efforts in the research of Leukemia or any Hematology research. I have a little guy in my life, Keeton – that I adore and who’s diagnosis is designer genes and Leukemia. He is doing well! But, if we’re going to act as consummate professionals, we would mention that the very gene mutations that lend toward DS – make them more likely to get Leukemia, but also – gives them a clear advantage to beat their cancer. Amazing! But not really an attribute of our diligence towards the cure rate of childhood cancer. I would applaud and support any efforts to improving ANY cure rate for ANY childhood cancer subset. I do not support an esteemed professional such as yourself by making statements that strokes parents and/or the general population into believing that childhood cancer isn’t all that bad. I know it makes everyone feel better. The childhood cancer world does not need empathy. They need ACTION. Childhood Cancer isn’t all that bad, it’s much much worse. (We didn’t even touch on the lasting implications, emotional cost, divorce rates of cancer parents, financial out-of-pocket costs to families that are most often led to financial ruin, etc.). I am also very certain, that before commenting above, you did your research and you knew that John Green wrote this amazing piece of fiction based on inspiration of his friend, Esther Earl. Esther did have metastasized thyroid cancer and died from it (what, lightning struck in her town too?). It is NOT uncommon for children/teens to die from cancer, from the treatments of cancer, or from the long-term side effects following cancer treatment. I wish the general population of the world would be a lot more panicked rather than leave a childhood cancer encounter with a whimsical sing-songy heart  because someone painted a picture of happy, smiling bald-headed children who live in a fairy tale world of 70% cure rates. Although they are amazingly cute, this is not their reality.
(To learn more about Esther Earl’s foundation click here).
 You see, Doctor, There is a fault in our Stars. It is us.
In closing, I am THRILLED that the movie is coming out. You’re right, it’s not 100% accurate as it is a work of fiction. The real truth is far too hard for most to handle. Why does this make me jump for joy? Because in store fronts of every mall around the world – The Fault in our Stars ad displays are up. Childhood Cancer is getting attention. It’s easy for the world to turn away when they are not aware. Now, they are. No excuses.
Respectfully,
Lori Woodard-Hoyt
Murfreesboro, TN
Link to original article: here
Have no fear. When adult “talk is bullshit”, a little child will lead us.
To see the message from the amazing Gabriella and the Truth 365 click here. Do not miss footage starting at second 57. What did it take for the President of the United States to listen? A 10-year old.
Visit Gabriella’s foundation by clicking here.
There are so many amazing foundations. If you take nothing away from this other than this pearl – KNOW where your money/donations go. Many of them are small grass roots foundations just trying to find the funds to get kids in their outreach treatment, expenses, and a little bit of joy. I apologize in advance if I leave someone out, but here is a list of non-profits that my personal funds support.
Clinton’s Club – http://www.clintonsclub.org
Liv 4 Tay Foundation – http://www.live4tay.net
Peach’s Neet Feet – http://www.peachsneetfeet.com
Jessie Rees Foundation – http://www.joyjars.negu.org
Ronald McDonald House – Nashville – www.rmhcnashville.com
Team JoJo – www.teamjojo.com
Alex’s Lemonade Stand Foundation – www.alexslemonade.org
Disclaimer: the views above are expressly mine. John Green, nor any foundation or organization above have endorsed, nor reviewed my personal opinions. To read more about my personal opinions, search this blog site for Clinton Milliken, Equality, 46/7 or childhood cancer. There are a few.
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20 thoughts on “The Fault is in Our Stars and an open letter to Charles Hemenway, MD, PhD.

  1. Melanie says:

    Thank you. You have encapsulated everything that I felt and wanted to say in this.
    -An childhood cancer angel’s mom

    http://www.facebook.com/fightformaddie

  2. Tammy Buchanan says:

    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 chemenway@lumc.edu
    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

  3. Tia says:

    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.

  4. 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

  5. Team JOJO says:

    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!

  6. Billie Price says:

    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.

  7. Abby says:

    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.

  8. Joey's Mom says:

    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.

  9. Joi says:

    Thank you. You are an amazing, eloquent woman.

  10. 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.

  11. Kelly says:

    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.

  12. MLLofTUHC says:

    Hi –

    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.

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