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%!
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  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.

Advocacy

 Very early this morning, before coffee #2, even, I was asked a question that stopped me in my tracks. For those of you who REALLY know me, yes, this CAN happen. I do not believe it was a malicious question, but not very thoughtful. I was asked why I was still “so involved” in childhood cancer, and I quote “since Clinton was already gone”.

I promise, dude.

I promise, dude.

 I’m sure I stunned this person when without hesitation I asked “have you ever had a 6 year old look you in the eye and ask you to promise him that you would “help his friends just be like normal kids”? A 6 yr old who chose happiness, laughter, random acts of kindness – and planned for his future every single day, even though he knew his body was betraying him? I know highly educated and well-traveled adults who fail to “get” this.

  Since this encounter, I have gone on with my day – but have experienced every range of human emotion. My best answers are:
~I advocate because it’s the right thing to do.
~I advocate because my peers are not doing enough and I am ashamed of us.
~I advocate, with no compensation, because decision makers find it hard to take grieving parents seriously, most physicians are doing the best they can with the tools they have,  and I can provide an “as close” as possible 3rd party assessment of the truth from all sides. Collectively,  we are failing these families.
~I advocate because I believe true judgement will come from things I could have done, but chose not to – or found an excuse not to do.
~I advocate because I hate – hate – hate to lose.
~I advocate because I have children, and you have children, and someday – far far from now, I will have grandchildren.
~I advocate because I love Keeton, Alyssa, Nick, Leah, Sadie, Ireland, Bishop, Emily, JoJo,Casey, Mark Kelly and so many more.
~I advocate because there is not an hour of each day that I do not think of Clinton, JC, AJ, Noah, Savannah, Tay, Talia, Jessie, Ronan – and so many more in addition to the 7 children who will die today.
~I advocate for all the children who are healthy today – but tomorrow could be catapulted into toxins being pumped into their bodies, yet they never smoked, sun-tanned, fought a war – or even worked in a place that had carcinogenic chemicals.
~I advocate because I know what is over my head, is under God’s feet.

Until you have experienced something like the photo below, you may never understand. I pray you never do.

Where there is the slightest chance at life, there is Hope.

Where there is the slightest chance at life, there is Hope.

 I will be at the next Childhood Cancer Caucus in Washington, DC -and rumor has it – that as the baby of the family – I will be heard, and will stomp my feet if I do not get my way. My tantrums are ugly.

So – please, do not ever ask me this question – ever again.

If you would like to visit foundation websites I love and that make a difference – every single day,  visit:

www.clintonsclub.org

www.live4tay.com

www.negu.org

www.peachsneetfeet.com

www.alexslemonade.org

www.stbaldricks.org

www.rockstarronan.com

* Note: these are my personal thoughts and not meant to be the reflection, mission or endorsement from any of the above foundations. -LLW

Inequality in America

 
GO GOLD

 GOLD

    Many Cancer fighting families and the Physicians who treat them – think that last year our Nation spent $122 million,  let’s say – on the research of one Pediatric (kids) cancer, specifically, Non-Hodgkin’s Lymphoma, and $631 million on just one adult cancer (breast), because kids are not old enough to vote and therefore politicians do not have to answer to kids. I personally have heard these words spoken on too many occasions over the last 3 years. This is complete rubbish. The cancer kid’s parents vote. Their older-than-18 extended families and biggest cheerleaders – vote. But we have a history of asking politicians the wrong questions. What IS on their platform? I made a promise to a cheeky 7 year old, from that day forward – I would know these things, and whether or not my representatives, congressional members and/or anyone I vote for ever – has childhood cancer research on their platform. If it is not even on their radar, they are not on mine. To be on mine they will need to so some research and see what we can do to right this injustice. No, I do not mean lip service. I like written plans. I’ll need to see those too before you get my vote.

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The King

 I challenge local, state and federal legislators to discover why “everyone” says it is big Pharma’s fault that there has only been one new pediatric drug released in over 20 years on the market. “Everyone” says that big Pharma does not develop/manufacture new drugs for kids because they will not make money off pediatric drugs. WRONG! First, drug companies have very savvy business and marketing development leaders – and second – this subsection of consumers has 46 new customers every single day. The parents of these kids and those who love them most (and even complete strangers) will find the funds necessary to treat/cure-  if the drugs that were needed – were out there. We’ve raised hundreds of thousands of dollars for local kids to get to watered down adult treatment centers across the nation – and sometimes out of the country – because it’s the best option we have. Last – the drug companies are already making money off kids with cancer, but they are not earning a good reputation when their drugs are watered down to a kid dose – have horrific side effects and the kid still dies.  I have spoken directly to – and have had incredible conversations with the leaders in “big Pharma”. They have so many amazing potential kid-friendly drugs on the cusp – but they have difficulty getting governmental approval relating to the research/outcome protocols for Pediatric drugs. Now why would our government do that? Because they only want to fund/grant programs that have good outcomes – and they are doing a bang-up job with that across the board aren’t they? The governmental guidelines are too stringent and they only chose the studies with a very high chance of a great outcome (read propaganda garbage). The only drugs to survive this review are made for adults. It’s just not the American way – to take the easy road.  It doesn’t make me feel better about  myself and our government at the end of the day – and it shouldn’t you either.

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Follow us to the clubhouse. Where cancer kids can be “normal” kids, even for just a few hours.

 I have worked for over two decades in healthcare and I have a special place in my heart for women’s healthcare. My true passion has always been in this field and I have been blown away by the advances. 21 years ago (and even more recent than that) – a breast cancer diagnosis delivered was almost a death sentence. Today, many women work throughout their entire treatment plan without missing much time from work. Am I angry about that? NO. Please do not misunderstand the semantics of my words. I rejoice in the news that yet another woman has beat this monster. I have two very good friends who have breast cancer right now – and whom I love dearly. I have spoken to both of them on this very subject. They themselves – cannot believe the  treatment options they have compared to the non-existing options for children. I do not want the pink ribbon to go away (unless we abolish breast cancer) – but it should not be that hard to equally see the GOLD ribbon about. Pink is big in October, and every other month.  Awareness works – and the pink ribbon campaign has proven this. GOLD needs to work just the same. September is THEIR month. Let’s see some GOLD. Own a business? Cover it in GOLD this September. Allow Clinton’s Club (www.clintonsclub.org) to place an awareness poster in your storefront – or host an event. You do not need money to do this. Donate your social media presence – even an hour a day can make a big difference. Think you can’t make a difference because you have no money? Wrong. Go to Google, select Google images. In the Search bar type “Clinton’s club”. As of this morning, the first 5 images you will find are either sweet Clinton himself – or a highly viewed photo tagged to Clinton.  I am SO SORRY Bill and Hilary, “I have  never had”…intentions to squeeze you off this page. I did partake in ousting Michelle Obama as the #1 trending hash tag for Nashville, TN the week we squeezed her to #2. It was a small week – in this country we call it – re-election week, in a decade where social media – clearly won an election.  I believe it went something like this #pray4tay.   

Tay

Click photo to go to Tay’s site

 One last note to local community leaders, business owners and legislators perhaps you have been fortunate enough to never personally experience childhood cancer. I pray you never do. But if you are one that clicks fast over another bald kids photo or social media awareness page, stop it. We are not looking for nor asking for empathy. We are so sorry that it makes you sad, or maybe even brings you to tears.  We have enough sympathy – we do not need that. We want you to know that ignoring this fact IS impacting the economic growth and development of our community. I’ll use Rutherford County, TN as an example. I personally know NINE local families who have health insurance and who have to spend $40k or more per year out-of-pocket to obtain necessary care for their kids. This does not count counseling for siblings, care for siblings, etc. It doesn’t affect us right? Well, one parent works for Nissan and continues to miss a lot of work to travel out of the local area for Neuroblastoma care (certain this impacts the production line); one works in healthcare herself – and the staff at her work missed an entire day to attend the funeral of her 7-year old. (only 40 patients didn’t receive their scheduled healthcare in RuCo that day, in a critical field that can have many social consequences); one owns her own business that was once thriving and is now nearly closed; ALL of them have gone from a two family income to one, or a single parent who once worked full-time to not working just so one parent can be with the child 24/7. Many have filed bankruptcy. Almost all – have or will be filing for divorce. Our children will most likely have a classmate during their primary school years who has cancer. If your child or grandchild comes home talking about a “monkey in their chair” the monkey represents their classmate who is out of school because of cancer. They will ask you for a few extra dollars to buy a plastic band with their classmates name on it to wear. Some schools ban these bands as not being a violation of dress code. So – yes, if affects us all. Emotionally, Cognitively, Socially, Economically. So, if you ask me how concerned I am about a new conference center and it’s ability for RuCo to compete in an economic arena – I might discuss this with you after you convince me that you have a plan that will really make a difference in the lives of the people who live and work here.

cfhems

Click to see one of the sweetest faces ever. xxEmxx

 I hope you have your thinking caps on. I hope you do more than just think. Imagine, if tomorrow – a terrorist (foreign or home-grown) walked into Siegel elementary and killed 7 innocent children sitting in their classroom. We’d see action. But that’s not quite the right analogy to use. First, we’d have to gather up all of those who love these 7 children – and force them to watch them be tortured over the next year to several – knowing they will die anyhow. What would we do about that? No, this is not shock marketing, this is the truth. A quick visit to the Pediatric Oncology floor at Vanderbilt today – will prove, The floor is full and there are two kids who’s healthcare is at risk as they “wait” in a germ incubator we call the ER. They are waiting because the rooms are full. They shouldn’t have to wait more than 24 hours. Adult Oncology floor has beds immediately available.

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Murfreesboro’s own sweet girl & Color’s For Hope – Leah Bee. Fighting Neuroblastoma like a BOSS