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:
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%!
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.
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.
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.
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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Today (January 19, 2014) is no different from any other day since January 19, 2012. Two years seem like forever when it’s a rough moment. Two years seem like a nanosecond when it was the total time you got with an extra special little boy. Just another day to remember an incredible kid who irrevocably changed my world and the world of so many others.
I have had time to develop my list of Clinton lesson’s. Some days I refer to them as “The Clinton experience” because it is almost surreal. I have always believed life is full of paradigm shifts (ie – ideas that may be more or less fashionable during any given period of time, but all regarded as legitimate), I just tend to be on the side of those that believe without seeing much quicker than others.
The world thinks – the best educations are obtained from Ivy league schools with the most astute professors. Not to be argued, but no one can discount lessons taught by a 7-year-old who had only just completed Kindergarten (and half a year of Kinder-grader. That is – part K and part 1st grade in one day).
Clinton taught me –
– patience and kindness on a different and more meaningful level.
– to realize that there really are people who do not deserve my time.
– to push boundaries – almost to the illegal point. (No – wait, allowing a then 6-year-old to drive may have been – technically, illegal.). Prove it. Then, arrest me.
The world needs to know that once you survive the loss of a child, it’s got NOTHING.
– that my professional work and some people “very close” to me – needed me more far more than I needed them, and that they would never be capable of respecting me nor my decisions. It was an ouch moment.
– to stop trying to please those who could never be pleased, but to instead focus that energy on those who need and are grateful for my voice, time and talent.
– that the world STINKS at second chances and that so many judge other’s decisions, yet have no clue what it’s like to make decisions even close to the levity that they are judging.
– how to lose gracefully. I’m really bad at this. Yet, to compete like I would win and never ever give up the hope of winning until your Momma tells you it’s okay to stop.
– how to keep going when everyone except your biggest cheerleaders say you will fail.
– he sealed my belief that the world needs to pay more attention to the wisdom and resiliency of children. Especially children faced with the most agonizing circumstances. Of course, bald-headed kids – but also the children of Africa, orphans – or any war-torn area. Watch them find pure happiness and joy in the simplest of things. It will change you and your ideals of what you think you need.
It’s not just myself that this boy taught. I could never tell and retell the numerous people (complete strangers, never having met Clinton) tell us how he changed their life. It still blows our minds.
I read a quote recently (paraphrasing) that a person actually dies twice. The first time – when their heart stops beating. A second and final time when no one speaks their name. Clinton’s second time is not happening.
Above all, Clinton wished that Cancer kids, could “just be normal kids”. Admittedly, I was not 46/7 aware before Clinton. Childhood Cancer is killing our children far faster and in more number than any other single disease, incident (think terrorism), etc. As Americans, we seem to not care that our federally funded Cancer research dollars are allocated in such disproportion that we spend 99 cents of every dollar on fighting ADULT cancer and one penny of every dollar to childhood cancer. If this means nothing to you – I challenge you to spend 99% of your family’s income on yourself and 1% on your kids and see how long before child protective service visits your home – and takes your children away. Just think. Then DO something. (Please, research those non-profits you give to. Just because they use smiling little bald-headed kids in their marketing, does not mean they give to children). Legend has it, I was known to throw a few breath-holding-until-I-got-my-way fits when I was little. Being the baby and all. Loving a Cancer kid has taken this skill to a whole new level. Childhood Cancer Caucus – you’ve been warned. Since the Clinton experience, I have added a few hundred more children to my list of advocacy. I’ve got your number, I see your little lies. You’ve had a good run at hiding the numbers of incident by labeling childhood cancers – rare. Yeah, we’re not that stupid – anymore. Until you come up with names that distinguish the different types of breast or prostate cancer – you are no longer allowed to call the “rare” childhood cancers – names like: Medulloblastoma, Leukemia, Neuroblastoma, Renal Cell Carcinoma, Wilms, Rhabdomyosarcoma,Retinoblastoma, Osteosarcoma, Ewing Sacroma, etc. To do this and then tell the world that childhood cancers are rare is a lie. Add em up. Then tell the world that the parents of kids with cancer did nothing wrong. Be sure to also let the world know that most (no not all, no hate mail, please) of adult cancers are the result of personalchoices. This is not like the idiom of comparing apples to oranges. This is more like comparing apples to – deep-fried-chocolate-dipped-bacon.
By the time you get to the last word of this blog post, those who really know me will be thinking “oh no – she didn’t! There goes thatWoodard girl”. To fully understand my back story, you can read “The Early Years” one of my first blog posts. Summed up in a sentence – I grew up in a sleepy homogeneous New England town. Very homogeneous. I am the whitest girl of all Anglo-Saxon’s anywhere. Now that we have cleared that up, there is no racial chip on my shoulder. What initiated my thought process around this specific blog post is a rebroadcast of Jase & Missy Robertson’s K-LOVE radio interview about abstinence before marriage. I listened to it, ironically on Martin Luther King day. Why is that ironic? Just keep reading!
I have a habit of saving pod casts, television shows and e-books for times when I travel by air or car. I must have saved the above mentioned radio interview during my research on Duck Dynasty. I live in the South and had no idea what this show was and honestly thought it wasn’t real. I had no idea duck calls were such big business, and I am certainly not a fan of facial hair. In fact, I remove it for a living. However, I have a very open mind, and had to research this show since social media outlets were on fire about their show as well as the fact that Wal-mart dedicates and entire aisle to all of their merchandise. (I tend to be slightly behind when it comes to television shows as they happen. Not only am I too avid a reader to watch a ton of television, I have too little time during the week to tune-in, so I save them up for times I have to be locked into a seat belt). I have a personal rule that I do not watch shows that scare me or “dumb me down” and I am also not the most patient person (gasp!) – so I have a hard time with weekly show cliff hangers. I have been known to watch a season or 8 in one day (Downtown Abbey, Suits, Scandal, Grey’s Anatomy, Private Practice, etc). Duck Dynasty will probably never reign as one of my top-10 shows, but there are parts of the show that are hilarious as well as puzzling. I think Willy is a marketing genius and his problems with motivating his staff are so easy to relate to. Here is a link to the interview:
I am sure the purpose of the video was to contain positive family building content, and I do think it does that, however, it had the exact opposite effect on me. Since this blog post will lack photo’s and some of you may be uncomfortable reading the content, copy and paste the link below and allow it to repeat with your speakers on for the duration of your reading.
Like most of my thoughts – they are normally complex and somewhat-all-over the place so I’ll do my best to organize. As I listened to Jase and Missy talk, I was quite sad over my own realization that the public’s response to the Robertson family, their reality show and the very fact that they are millionaires is overwhelmingly positive (and yes, their wealth is flaunted on their show) – yet, the response to the Murfreesboro, TN filmed reality show about the Tankard family “Thicker Than Water” is not. Why? Why would one family be regarded so well in spite of their obvious success and another somewhat frowned upon? WHY does the world have a problem with Pastoral families having money? What is the issue? Perhaps more families would go into ministry and missions if they weren’t overly pressured into feeling bad about any success they have. Before anyone justifies in their mind that this is not truly a belief, Yes, they are. I can give many examples – from living all over the world – but a couple of local examples are:
People are uncomfortable with the “showy-ness” of World Outreach Church. I have heard it all – they are too big, they spend too much money on their facility, they pay for headliners to come into the community – meaning their members simply have to be entertained. Personally, I think it’s brilliant. Name another church that brings thousands and thousands to the Word? So many of our community leaders attend this church – they are also quietly the medical directors (for free) of local pregnancy support centers, hold leadership positions in many areas and volunteer many hours in the community. They bring a much needed piece of light to the business world. If you are not comfortable with the size of the church, then leave it at that, there is no need to justify your decision further. Carry on Word Outreach Church – carry on!
I participated in a local program (let’s keep it anonymous) and another participant was a Preacher. Other participants commented on the very fact that he was a preacher and drove a nice car. I do not think this needs any more explanation, but I went away from those comments thinking that they would be much happier if he barely drove away in a car older than them. Realistically, if we compare building a Kingdom in today’s world – who would want to attend a church where everyone is barely surviving? Keep it real, people.
Before moving on, in almost every scenario – “church people” lash out and say that God himself instructs His people to live a humble life. I can not argue with that, but I think “humble” lends itself to interpretation. Apparently, to those uncomfortable with a pastoral families success, they mean “give it all away, prosper those who are sitting at home while they work, and for crying out loud, please don’t show the world that Christians can be successful”. In my personal experience people who say this the most are those that have less money than they do. Which translates to “you can’t be a Christian if you have more money than me”. This is jealousy. Jealousy is a sin. Most will also question my knowledge of the Bible in a “bless her heart” undertone. Review: there are parts of the bible, specifically the Old Testament that are simply incredible atrocities. In the Bible, words having to do with killing significantly outnumber words having to do with love – yet, the Greatest of these is Love. Imagine the problems we would have today if we literally applied the book of Genesis alone to the way we live? (God’s arbitrary preference of Abel’s offering to that of Cain’s provokes Cain to commit the first biblically recorded murder and kill his brother Abel; The Israelites kill Hamor, his son, and all the men of their village, taking as plunder their wealth, cattle, wives and children; God is unhappy with the wickedness of man and decides to do something about it. He kills every living thing on the face of the earth other than Noah’s family and thereby makes himself the greatest mass murderer in history & God personally sees to it that Lot’s wife is turned to a pillar of salt (for having looked behind her while fleeing the destruction of Sodom and Gomorrah)). Feeling the Love? Perhaps these situations become problems because they are inherent in a literalist or fundamentalist interpretation. Some of the selections may be resolvable on certain interpretations–after all, almost any problem can be eliminated with suitable rationalizations–but it is your obligation to test this possibility and to decide whether it really makes appropriate sense to do these things today. I presented the examples above where problems may exist given certain allowable (but not always obligatory) assumptions. It should be kept in mind that a perfect and omnipotent God could, should, and likely would see to it that such problems did not exist in a book which he had inspired. It should also be kept in mind that what is and is not an atrocity is to some extent a matter of opinion. So many who sling such words put God in a very small box.
Obviously I struggle with this – so someone please – help me! I adore lists, so let’s review some observations and thoughts, list-like.
1. Before addressing more of the specifics relating to the show, I’ll take some time to address that the highly emotionally charged Trayvon Martin case brought up a lot of the same emotions for me and I think this is a compilation of my experiences, thoughts and perspective. They aren’t really open to hate-mail opportunities. It makes me slightly insane when America brags that we have come “so far” with civil rights. Really? The specter of racism still lingers, it has simply taken on new forms since the mid-20th century. What we used to know as racism, has thankfully/mostly died. My Princess Katherine can legally sit on any public transportation with her good-pal Lorin, and it is no longer polite conversation in white society to speak negatively about black people as a race. Praise God! Aside from the fact that true racism that will literally only die off with the older generations for whom racism was normative (and I believe this is what Oprah was trying to say) – what we have traditionally called racism has likely receded to as low a level as we will ever see it in our lifetime. Unfortunately, there will always be, and there always have been, people who see their own people group as superior. Xenophobia is a natural human tendency which has plagued every era since the dawn of man. I can recall a few instances where accusations of racism were slung at me personally and/or professionally if an employee I supervised was disciplined by me and they were not white. Fortunately, they fell flat or got lost in translation. Not only because it was simply not true – but because I have African-American friends whom I genuinely love, appreciate and call family. My home has been described in the past as the United Colors of Benetton and – I LOVE it. I believe in the traditional sense of racism, most people aren’t racist. The temptation is to think that because we no longer discriminate solely on race, we have won the war on racism. Mission accomplished. Wrong. We are fooling ourselves if we think we have achieved racial equality or eliminated racial prejudice. We have a long way to go and a lot of work to do along the way. However, we can’t continue with the same strategies that worked in combating racism as we once knew it. Because of our national fascination with crime, the Trayvon Martin case became a sensation with sociological impact. This same situation happens in cities across America, every day but are local stories. It’s a tragedy, of course. Regardless of the narrative that saw Trayvon as an aggressor or the one that saw George Zimmerman as a vigilante, it was an event in a small town in northern Florida. The situation was terrible, and we should mourn the loss of life. When stories like the Trayvon Martin/George Zimmerman case polarize the nation, we should be exploring why and not the color of skin.
2. I mentioned Xenophobia above and I think most logically thinking people can understand this. But, what in the world is going on in African-American culture where – for whatever reason, it is acceptable for members of the African-American community to hurl insults at each other? I am so disappointed to see the negative comments on the Thicker Than Water FAN page (review definition of FAN, please). Simple clicks to the profiles of the naysayers and it’s easy to discover that an alarming number of haters of the successful black family – are black. So, here’s the moment of honesty. Why? Is it because African American’s aren’t supposed to be successful? Smart? Live in a nice home that they have worked for? I’m so completely lost here! It is my opinion as well that owners of such profiles should change their employment statuses and try to build their community up rather than tear it down. I know this is nothing new, but with all of this progress – seriously? Maybe I answered it above – are these unhappy people passing judgment because the Tankards have more than they do?
3. I personally experienced racism at it’s finest when I traveled with hands-down the best female surgeon – ever. We were in San Francisco in 2003 and checking in to a posh hotel. We were registered by our names and titles. The hotel staff looked me straight in the face, ignoring her and addressed me as “Doctor”. I had a near come-apart and she was quick to apologize for them that it was no big deal. Yes it is. I didn’t go to jail over that incident, but I could have. I nearly did go to jail three days later when we were trying on clothes in Ann Taylor Loft and the sales girl made a bad judgement call and refused to wait on the good Doctor, but was hands over feet attempting to be helpful to me. I stomped out of the dressing room half-dressed to get her thin beautiful self a smaller size! I allowed said sales girl to ring up a lot of items, then explained to her why she lost that very sale. Both the hotel receptionist and the salesperson were African-American. Unbelievable. STOP IT.
4. I have known the Tankard family for almost all of the years that I have lived in Murfreesboro. Jewel has been a client of mine for almost all of these years. I do not claim to know her fully nor can I figure out how she does all that she does in one day. Other than any service that I perform for her inside my own business, I am not on this families payroll (before you even think this). Why does the relationship between Jewel and I work? Because she asks for advice in my area of expertise and then actually follows it. She brings new ideas and allows me to push boundaries in treating black skin. In my world, treating black skin with laser is like walking a tightrope over the Grand Canyon with no safety net or learning to drive a stick shift on a mountain. I do not recommend attempting to treat her or sell her on a product if you do not know your stuff. Treatment sessions are also normally business development discussions and/or talks of faith. In a time where I was making a huge professional change, in true Jewel fashion – she offered no excuses and no leniency on doing what was right, even though it was a hard decision. The girl makes my professional endurance look like I’m calling shot-gun in the sofa series. It has been said that she is narcissistic. Please review that definition too. Narcissistic people do not financially support local and national charities. They also do not allow their nearing adulthood children to live under their roof and use their resources. Theory denied. Jewel has led more women to financial success than any other woman I have ever personally known. It would be easy enough for her to walk-away from her own and her step-children, but she doesn’t. She has put her family first and her husband first. She’s an entrepreneur and the local community should be thankful that they chose to search for a rather large home that was in foreclosure and costing many local businesses a lot of money. With a simple public records search, you can find that they paid less for Tankard Palace than many of you in ivory towers did for your modest homes. That makes her sensible, not hate-able.
5. The Tankard family, namely Ben Tankard – papa to everyone and Pastor of the Destiny Center Church – does not, repeat after me, does not receive compensation from the congregation. He is a Pastor because he has experienced success and he does not need a salary from the church that he started in his living room. Even if you find a natural tendency to not like the Tankards, use some third grade math. I estimate they have approximately 200 or so members in their church. I am a good a tithing, but 200 of my friends could not solely support the physical church plant, the payroll, the utilities AND the Tankard family. I have two females in my house – they have six. I can not imagine what that costs. Again, simple third grade math. I love how transparent he is – and often he “goes there”. I think the world needs more of this realness that people who have stumbled can see and realize there is hope. Ben is incredibly talented and his gospel Jazz CD’s are in the spa music mix! He still owes me his autograph on his cover of VIP Murfreesboro, but I digress. Ben has over 21 Gold and Platinum Records lining his walls, has earned 13 Stellar Awards, 1 Blue Mic Award, and has multiple Grammy, Dove, and Soul Train Award Nominations and is the best-selling gospel/jazz instrumentalist/artist of all time. Ben has released 19 studio albums and sold over 2 million records worldwide. He also discovered Yolanda Adams. Impressive? Sure – but even more impressive – no lessons ever. Incredible. Why are the Tankards successful? I believe it boils down to extreme faith and focus. My favorite Ben line “There is no Ghetto Heaven”.
6. Those who claim that they will never, ever watch this show, seem to know an awful lot about the show. This means, you’re watching it! Last Sunday, 11/24/13, Thicker Than Water had the following number of viewers according to Nielsen ratings (I believe this is 1.623 million viewers) – just ahead (eek!) of Duck Dynasty. This number represents live viewers – the live plus DVR’d number looks more like 1.86 million. Approximately 28, (as in 28 total, not million) of these viewers are posting repetitive negative comments on fan pages, twitter, etc.
THICKER THAN WATER
BRVO
9:00 PM
1623
DUCK DYNASTY
AEN
10:00 PM
1572
In close, I do not feel the need to defend the Tankard’s, they do not need my protection – but they will receive it, if it comes into my presence. Wait, I do feel the need to defend Cyrene (the youngest Tankard), first, because I just love this girl. She is one of the sweetest girls ever with a face that lights up when she recognizes people she loves. I adore this quality in her. I have watched her grow up second-hand through her mother, and only recently started to get to know her more personally (these kids grow up and get their own cars!) Second, because she is still in high school and kids and teachers – can be mean. Don’t be mean to my baby! I am like a mother bear, and I have many cubs. They do not all look like me – as a matter of fact – only two look like me. Many of my kids are African-American (shout-out to my loves Justin, Jonathan, Katherine Coryse, Imani, Jerome, Jr and Adonis – kids I could adopt in a minute and love and raise in a way their own mothers would wish), some are Asian, hundreds have little bald-heads. I have been known to show up at schools, doctors offices and hospitals and ask what acceptable culture is at their establishment when a child other than my own by birth has been mistreated. Last, I believe Cyrene has a special light that the world hasn’t even begun to see and I can not wait to see what she does. I believe the Tankards are favored, and I believe you haven’t seen anything yet in this regard. I have said this before, but it’s worth repeating – perhaps those who have more can be trusted with it? It is exhausting to see all the negativity – especially on social media. I am sincerely bothered by all the “Christian’s” who post all the reasons that the Tankard’s can’t be “real Christian’s”. To those (and even those who haven’t posted, spoke it nor printed it – but perhaps have thought it) – I’d like to leave you with a thought to ponder just for a moment and hopefully serve as a gentle reminder. Jesus did not come in like a divine Caucasian police officer and throw all sinners in jail, or take snap shots then pass judgement and move on. He came alongside us, experienced our problems, and attempted in a very short life to teach lessons that would only benefit us, even at the expense of His own life. Be very careful. Do you think your thoughts and actions have accomplished His mission? You really think so?
Trifling.
I outlined above why I think Pastoral families are held in a different regard and although it explains some of the misbehavior, it doesn’t address my original observation. The Robertson family is not a pastoral family, so, is that why America is overwhelming positive about their show, or is it because they are Caucasian and the Tankard’s are not? How disappointed would Dr. Martin Luther King, Jr. be? He too, gave his own life.
Links: (all social media clickable from their websites)
* I always feel the need for a disclaimer. The Tankard family have not endorsed nor viewed this post before it went live. It is not intended to be their belief nor their words. This is a personal blog and the contents are mine alone. It is not meant to be the works of the Tankard family, Bravo, The Destiny Center, nor any of their present, past or future affiliates.
You know what is thicker than water? (other than Blood?) – A woven family! I am SO proud of these two and their blended/woven family! I have known the Tankards as long as I have lived in TN and have watched them walk the walk and live real lives for Christ. With Jewel’s permission I’ll share that I have treated her skin with medical laser and Aesthetics (no pressure at all, she’s just on Television and if you haven’t noticed, she has black skin!) She is at the top of my list for clients who just get “it”. She openly shares what she’s doing, what she uses on her skin and how her diet and travel schedule can show up on her face. Together, we have created a treatment plan that is inexpensive, works and stays just ahead of the intrinsic aging curve. But don’t take my word for it – check her out!
Jewel Tankard
Jewel and Ben are so many things and wear so many hats – but, they also carry a lot of burden. Some are envious of their abundant blessings. They wouldn’t be if they knew how hard these two have worked. They raise their children, grandchild, pastor their church, run their businesses and are good stewards. They work HARD. Up before dawn and lay their head down long after many others tune out. Jewel and I may have termed the phrase “not many business leaders can be found sleeping in every day until lunchtime!”, amongst other tales from the treatment room. It is never dull! Did I mention Jewel is also leading the launch of #tankardcosmetics as she coaches her daughters through the business start up process?
Since the day Jewel shared with me the name of their reality tv series Thicker Than Water, the same chorus has run through my head..
“Why can’t we see the walls we can’t see through
And see what God’s been telling me and you
(and that is) Blood is thicker than water
Oh, but love, love is thicker than blood”
Love in action- is what they do best.
I’m just going to throw it out there – in addition to their hard work, perhaps they are living this life of abundance because they can be TRUSTED with it. Just a thought.
Their Television show series kicks off on Sunday, November 10th at 9 est/8 cst on Bravo! Be sure to tune in to see some of your favorite Murfreesboro, TN locations. I haven’t seen it – but I know it will be real, it will be FUNNY and they will bring it!
To watch some of their trailors and get a sneak peak, click this link!
“Good morning, America, how are you? Don’t you know me, I’m your native son” – Steve Goodman, 1970
First, let me share a fantastic Facebook post from early this morning. I felt it worth not only a share, but a blog post to a few hundred thousand of my friends (and with their help, a few million or more). The post below was made by Dr. Brent Boles who privately practices obstetrics and gynecology in Murfreesboro, TN. Dr. Boles is not only a fantastic, extremely talented Physician, he is also one of MYPhysicians and we know how great/easy of a patient I am. I copied and pasted his post from my Facebook timeline:
So yesterday’s rollout of the healthcare exchange website was filled with glitches. The White House compared the issues with Apple’s issues with the rollout of new technology. Who does he think he’s kidding? HHS Sec Sebelius said the glitches were a good thing because there is demand for the product. Wow. The site was overwhelmed with fewer than three million visitors-and we are supposed to be confident that the government will competently manage a system that will one day provide care for 300 million? Here’s one ‘glitch’ that no one is discussing. When a new health plan hits the market, the company running it has already built a network of providers by contacting all the doctors in the target area and offering them contracts and getting those interested credentialed and ready to see their newly covered clients. Do you know how many of the new exchange plans have contacted me to see if I will accept their patients? Not one. There are over three hundred doctors in my community and do you know how many of them have been contracted by the new plans? Not one…. Where are all these newly covered patients going to get their care? That’s a good question. It is also perhaps the biggest ‘glitch’.”
Initially, I posted a reply on his facebook that reads “I’ll offer my 16 year healthcare consultant advice for free here. They won’t. They’ll package it sweetly into a silent PPO (which they already try), or a TPP, and the health insurance ID cards will be inconspicuous so the staff thinks it a MCO you are already par with. IF they do offer a contract, here’s how we
negotiate this one. “NO” It’s a complete sentence. Reminds me of the former tort reform joke! Start advertising
now . . . “Who in Rutherford County will deliver your baby?”
Of course, my brain has been turning and burning since I read this. Dr. Boles’ point is valid. Critical. Crucial. I have been in the business of strategically managing the non-clinical side of private practice healthcare now for 16 years (eek!). I still have consulting contact with (to my count) 37 Physicians. Of those that I currently step foot into their practice locations, NONE of them have been contacted to credential with any of the plans under the new Healthcare exchange plans. ZERO. But, then, I thought – well, perhaps it’s because they are Medicare providers. But some I know, are not. Let me email those. In the last 6 hours, all but 1 of them have replied to my email with one word “No”. Well then, America – who exactly are these mystery Physicians who will deliver this new healthcare for all? The money you pay in for that service is paying for what? Paying whom? Physicians: READ THIS. If you are a current Medicare provider, they have already enrolled you. If they underwrite with another plan that you participate with –beware of the silent PPO game, or the TPP game that re-prices your contracts without approval nor agreement like they can, and just say NO. You can not see a patient for $38 and pay your staff! Of course, if you need someone to negotiate your contracts, or fill out your opt-out form via PECOS, call me. It. Makes. My. Day.
Consumers: let’s review. The money you and/your employer pays into an insurance company (be it commercial or mandated government exchange) is a contract between YOU and that company that you are paying for a service. Let’s say it’s $800 per month. Part of this $800 is paid by your payroll deduction (out of your pocket), some by your company (total compensation package). Okay, so you pay the tree of life or big blue $800 per month and you go to the doctor once that month. You pay a $40 co-pay and they pay your doctor – perhaps, an additional $49. $49 for your $800? But wait, that is only IF your ever-increasing deductible has been met first. (Still receiving $800 per month while you meet your deductible, they pay nothing until you reach this magic number & $1500-$5000 is now the norm in America). By the way, if you have not met your deductible, your Physician will bill for your service rendered in good faith, and will receive ZERO. Then, in 45 days or so, you’ll get a bill from your doctor. For some reason, most patients feel they should pay their doctor last, or a few dollars per month. Not me! I was gifted with a chronic illness by Walter Reed Army Medical Center, therefore, I pay my Physicians – first. When this happens, smart savvy practices, say, no more services until the medical bill is paid. Does not feel good, but is necessary to run a business.
Next you say, “self, let’s look at my healthcare insurance companies public listed earnings”. Say what? 2mil in BONUS to CEO’s? Yes, now let’s blame the Physician! Did you pass 3rd grade math? While we’re on this topic – quick, go grab your most recent “EOB: Explanation of Benefits” Some of them list CPT codes (Current Procedural Terminology), which must be used by Physicians to bill for the service they provided to you. In order to do that, they have to first purchase expensive Electronic Medical Record (EMR) systems (and we are talking $30-$80k!), learn the CPT codes that change with no notice (and most often do not even match what they did), pay a medical biller to pre-cert your visit by calling your insurance company where a non clinically trained non-English speaking person in India will answer the phone and either “approve” or “deny” your visit. When they deny, the doctor will pay his staff to call the healthcare insurance companies CUSTOMER to tell them no. The Physician has collected zero. He or she also has paid out an estimated $34 in staff costs to get to this point (not counting EMR software, their own training nor their electric bill). Patient has no care. Lose-Lose-Win. (Doctor-Patient-Healthcare Insurance Company). Here is where we have it all wrong. Patients/consumers: do NOT allow someone you pay a service to dictate your Physician’s treatment plan. Call them and ask them what service they are providing you for your money. They work for YOU. Let’s say they approve your treatment. It might look like this: Your doctor billed $130 for your annual well-woman exam, and your insurance company might-have-would-have-could-have paid $65, but you owe a $40 co-pay. After the billing department argues that yes, it was indeed one year and one day since your last well-woman exam, your doctor will get a check for $25. Physicians: an insurance company may say no but this means no to only to payment on behalf of THEIR customer – not to your treatment plan of YOUR patient. Feel free to use my best script ever (insert whatever procedure you are trying to get covered). Insurance rep: “no cover for a that a service”. Biller “what?”, Insurance rep: “let me transfer you to appeal department”. Biller “Practice Administrator – please pick up this call before I lose my mind”….wait on hold so long you forget who you were holding for…..then – “hello, yes, I am calling to get pre-approval for an in office obstetric ultra-sound”….Insurance appeal-or “I’m sorry, the member must report to ______ radiology for this scan. In office is NOT approved nor medically necessary and the patient may not have it”. Practice Administrator (okay, me) – “It will certainly be my pleasure to let your member know that you are failing to provide a service to her unborn child with whom she pays you for, and that her highly skilled Physician believes it critical because of this (insert diagnosis). But I understand, you are just doing your job. Now, I will do mine. What is your fax number? Yes, I need to fax you a consent form that will transfer the medical liability of both the patient and her baby to your company, because for the next two hours that she will have to wait to be scanned, my medically trained and board-certified ACOG fellow believes that her unborn babies life is at risk and I will not allow him to be responsible for your lack of concern or coverage…..yes, I have a pen handy for that approval number for in-office ultra-sound. Have a great day”. Work out a self pay rate for your patient and provide them with care. Look at fee for service models. Maybe then, patients will carry catastrophic only plans that pay for hospital stays, surgery, etc. After all, you gave up your 20’s and no one helped you pay for your medical school. Read this section on how to “opt-out” of this nightmare if you are a current Medicare provider:
“…(b) Establishment of a Provider Network- (1) IN GENERAL- Health care providers (including physicians and hospitals) participating in Medicare are participating providers in the public health insurance option unless they opt out in a process established by the Secretary consistent with this subsection. (2) REQUIREMENTS FOR OPT-OUT PROCESS- Under the process established under paragraph (1)–
(A) providers described in such subparagraph shall be provided at least a 1-year period prior to the first day of Y1 to opt out of participating in the public health insurance option;
(B) no provider shall be subject to a penalty for not participating in the public health insurance option;
(C) the Secretary shall include information on how providers participating in Medicare who chose to opt out of participating in the public health insurance option may opt back in; and
(D) there shall be an annual enrollment period in which providers may decide whether to participate in the public health insurance option.
(3) RULEMAKING- Not later than 18 months before the first day of Y1, the Secretary shall promulgate rules (pursuant to notice and comment) for the process described in paragraph (1).
(c) Limitations on Review- There shall be no administrative or judicial review of a payment rate or methodology established under this section or under section 224.”
Since the HMO’s saved us all – I feel quite confident that this new Affordable Care Act will work exceptionally well. Here’s what exceptionally well looks like in my opinion: There are always Physician’s who graduate in the bottom of their class, and who are not board certified (lest we suggest, double-boarded) who will bend over and take these bottom feeder plans and rates. They will look like the current Medicaid practices that we all know and can name for each locale. Locations that most of us would never step foot in.
If it were funny, I might have laughed at our highly intelligent and most competent government writer’s use of language in the employer categories. Smallest employer group (10 or less); Smaller (less than 20 more than 10)….Sesame Street did them good too! (Hint: this will force smaller companies to become smallest companies and let go of half of their employees to qualify.)
One last point for good measure. Childhood Cancer Warriors: are you aware that HB 3200 also outlines when and how the government can decide if cancer treatment is approved? First, we know what our current government thinks of childhood cancer (1 penny of every dollar allocated), so we can imagine where that leaves the decision of how this plan will decide to approve childhood cancer treatments. This plan, however, goes further – if over the age of 76, Cancer treatments will not be covered. I guess we should just bury everyone at 75. Think it’s not already happening? Really? Ought to call a friend of mine in TX. Single mother, age about mid forties – can not get her cancer treatment approved because “it will probably just come back”.
So, how will private practices survive? Without strategically fantastic professionally trained medical practice administrators, they will not. Wise Physicians recognize that the business side of the house is as important as the clinical. I visit so many practices where (when we had paper medical records) – the medical records clerk stayed long enough to work at the front desk. Then she worked there long enough to become the front office manager – and if they were lucky – stayed long enough to be promoted to the practice manager. The positives are – she’s loyal, knows the business well, and can speak words just as the Physicians might, knows the patients and has a cheerful sing-song voice. The bad news is – she most likely can not save you. Obama care and some before him, has put the practice of medicine in peril. Without strategic planning, forecasting, cash flow acceleration, a close eye on compliance plans (this year alone, major changes in (T)OSHA, OIG, HIPAA Privacy/OMNIBUS, HIPAA Security, HITECH, e-verify, New Hire Registry, State licensure, Sunshine Act, CLIA, COLA, EEOC, DOL, Meaningful Use, STARK, and we barely survived e-scribe) as well as the trickery contained there-in, private practices will not survive. Remember those Electronic Medical Record (EMR) incentives they promised if you just spent $60k on all the software, hardware and training? You know, the little big-brother game of “Meaningful Use”? Yeah. Well, they got their data – which they then used for the Affordable Care Act, and now the coffers are dry. SHOCKER. At least the practices that I had oversight of got $15k for year 1 stage 1. This will pay for the paper we had to purchase in a paperless EMR environment. That in and of itself might just kill me. Somewhere in Maryland there is a time capsule. In which has a piece of paper where I called this day back in 2003 when I had just watched in disbelief a failed tort reform. I wrote something along the lines of “healthcare in America – will become one of the “haves” and the “have not’s, be sure to be on the side that has (and I am not talking about money)”. One could say, I am ever so slightly, pro-physician. Why? Because socialized healthcare is NOT a good thing and there are so many great Physicians out there who could and do make a difference every single day. They are simply giving up in alarming numbers because their every move is dictated by policy makers that have no medical training. We have to do something or we are going to lose them. But, it’s all good in the hood, right? No one needs a doctor anyhow! Until something goes WRONG.
To read HB 3200 in all it’s glory http://www.govtrack.us/congress/bills/111/hr3200/text. Please read it. The above are highlights from simply the first 500 pages of the Healthcare bill. Contact your Representatives and let them know how you feel about this. We, as a country, cannot afford another 1000 page bill to go through congress without being read. Another 500 pages to go for me!
America, WAKE UP.
Tiny disclaimer: the thoughts above are not those of Dr. Brent Boles, nor any current, past or future private practice physicians. They are mine alone. Those of you whose blood may have almost boiled, don’t even yell STARK. No contractual information has been disclosed.
It’s okay ~ people still like you. No one has blocked you (well, perhaps some have) – but really, there is no need to panic or place your paranoia flag at code-red-level. Unless… you own a business or a MLM (multi-level marketing) business and have noticed your social media activity lacking lately. Have you noticed that you are only seeing updates in your news feed from the same-old people lately? Have you also noticed that when you post things like status messages, photos and links, the same circle of people are commenting and everyone else seems to be ignoring you? I always know when something changes, because my mother becomes my only “likes”. (kidding!). Perhaps, you’re like me – and your banker asks you if you post on Facebook any longer; or if 5 people in the last 2 days have asked you why you are no longer in their news feed?
I’ve been meaning to write this post for a while but what prompted me to write it today, is the fact that the last two to ask me this question are sweet southern women, who first – would never ask unless they were concerned and two because I too have noticed that site hits and interactions have dropped since May – on all 34 sites I monitor. (Perhaps, also since my work email server is currently being migrated and I am not actively receiving email, maybe.)
First, a social media primer. Social media is meant to be social. Social media refers to the means of interactions among people in which they create, share, and exchange information and ideas in virtual communities and networks. Therefore, if you are an habitual “face-stalker”, meaning you only view posts in your news feed – and never visit anyone page, nor interact with them – you may find you have less and fewer people to face-stalk. Or maybe they know you are just a face-stalker (again, kidding!). The problem is that a large chunk of your friend/fan list can’t see anything you post and here’s why:
In May 2013 Facebook started rolling out their post-sorting algorithm, and not everyone is a “fan”. There were two back-to-back changes that not everyone noticed. First, for those on the “new Facebook timeline” there was a news feed setting that by default is automatically set to show ONLY posts from people who you’ve recently interacted with or interacted the most with (which would be limited to the couple of weeks just before people started switching to the new timeline). In other words, unless your friends/fans commented on one of your posts within those few weeks or vice versa – you became invisible to them and they of course were invisible to your timeline. It was at this time, I stressed the importance of creating “lists” to put your friends, fans and contacts in. Personally, I have grown to love the list feature. I find it incredibly helpful. I sorted my just less than 5 thousand friends, family and fans into lists such as : GHS, family, military family, New York, Vermont, New Mexico, England, Maryland, Tennessee, (each business name) – and my personal favorite “restricted” . By taking the time to complete this task, I am able to use one profile for multiple purposes – I can post something that is military specific and only those in that list will see it – and so forth. If you own a business and/or have a down-line this is how you can communicate with them without alienating the rest of your friends list.
More recently, facebook developers deployed their smarter algorithm software that determines News Feed placement based on facebook friends whom you would most likely engage. If you’re trying to see more of your best friend’s Facebook posts, or fewer from an habitual over-poster, there is a way to set these preferences, too.
On the Facebook timeline, mouse-over the area, or click the button on the right side of the cover photo that says “friends”. From the drop-down menu – first make sure that “Get Notifications” is checked, and show in news feed is checked. From this same drop-down you can add the person to one of your custom-made lists (see add to another list), suggest more friends for them, and/or change what types of updates you get. You can even unfriend them this way, if you want or need to in the future.
Click show in news feed – then – Settings
Then select all updates (below)
You can select all updates to see everything your friend posts in your news feed, or select fewer posts, but all photos, etc – by checking or unchecking from the drop down under all updates.
The good news – if you listened in the past and set-up friends lists, this task will not seem so cumbersome since you can select the list and right-click on the profile photo to open each persons profile. If you did not set up lists, then – yes (the bad news is) you’ll have to visit each profile of the people whose posts you’d like to see in your news feed.
If you are a MLM person and need to remind your team – simply posting an update about this won’t do any good because most of your friends/fans already can’t see your posts by default! (The default is to only see “most” posts).
You’ll either have to send out a message to everyone on your list, or post an event page and invite all your friends with one click – explaining the situation. Even better, pick up the phone and call your down line and invite them for coffee or lunch!
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’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.
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:
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.
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.
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.
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.
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.
Murfreesboro’s own sweet girl & Color’s For Hope – Leah Bee. Fighting Neuroblastoma like a BOSS
I have really had to work on developing my capacity for awareness to the extent that it’s “personal” to my brain – to survive. I believe I was born with a strong awareness center in my brain which leads me to also “feel” at a much higher sensitivity level. I automatically feel the need to not only label everything I observe, but to categorize it in every way possible – look, feel, smell, sound, positive, negative, feels good, or does not feel good – and please- logical! As a child, in the absence of emotional maturity, introspection, reasoning, nor any understanding of real life, this awareness center was not always a positive source. Until I learned how to make it personal to my brain, my awareness center got mixed with my thoughts, and Lord knows I cannot believe everything I think! It is much like being supercharged all the time. I have always been somewhat envious of those who seemingly are oblivious to every little thing around them.
Looking all stressed out with my cousin
There are many people like me who feel that we were suddenly plugged into a higher voltage of everything, including the force of negativity, which can lead to being overwhelmed, most of the time. I did not realize until I was almost 26 how unconsciously I was living. This coupled with my ordinal position taught me that awareness (done well) is the foundation of how to start coming out of the dysfunction of negativity – and how to stay there. I had to teach myself the mastery of being a pure observer (leaving out judgment/interpretations) without needing thoughts. It’s quite powerful.
This awareness became my light that I have used to identify negativity, and letting it go is an attitude that allows me to dissolve it. This is HARD work. For me, letting go simply means to stay in a space of allowing the inevitable negativity of others to run out of momentum and fizzle away. Letting go is similar to “doing nothing” or “not engaging”. Just be – and the negativity will soon dissolve. In my life, I have applied it to situations and people. The science behind my theory is simple – life is a space of pure positive vibration and hence it does not support low vibration (negative) states. The only way to sustain a low vibration state is for ME to give it the energy it needs to survive by my beliefs/attention/focus. In short, negative people have neither power nor influence over my life.
If I simply stay in an “open awareness” state – negativity will automatically dissolve since it’s not supported by my life. It takes time, conscience effort and an attitude of allowing what comes – to come fully. I believe that my generation has not done well with allowing their children to fully feel bad things. It’s normal to want to protect them, but in real life not everyone gets a trophy and not everyone can be first. This can only come from a place of love – not fear or hatred.
When I was very young, I recall being taught that sin was the measurement of “getting in” or not. As in – in to Eternity. I don’t believe this to be true. I believe it puts our Creator in the smallest box ever. I think He knew we were born to sin, its how me made us. I don’t believe sin is weighted. I don’t believe in degrees of sin. I don’t believe Jesus stuttered. Just ask my kids – I do not believe in rewarding expected behavior. Rather, I believe we will be judged to a higher degree on work that we could have done, but chose not to do. If you can do it – do it. If you can make something better, make it. Always leave a place better than you found it.
Sometimes bad things happen to good people. Until the Clinton experience, I almost always felt that letting go was quitting, giving up. Then I realized that this boy was ready to go. That wanting him to stay here beyond all costs and measures while his little body betrayed him was the most self-centered thing to do. That by witnessing his mother allowing him to go and telling him that he could go and she would be okay was not only the right thing to do, but what he needed to hear. “Allowing” or letting go has become my definition of unconditional or “agape” love.
Then there are things I can not let go of…like for example: I have friends that think they are hysterical. They bought me a t-shirt that says “Jesus is a Red Sox Fan”. I countered with a “Jesus loves you, but I’m His favorite” tee. I don’t want to burst their bubble – but Jesus loves everyone, that’s just his thing. Revelation 22:13 reads “I am the Alpha and the Omega, the First and the Last, the Beginning and the End” – and post note – he wears Heavenly Pin Stripes. I seriously hear Glory Land type music when I see #2 in pinstripes. It’s better than that. Are you aware?
Dear Charles Hemenway, MD, phD & Shirley Pulawski (author of the Article New movie portrays teen cancer unrealistically, expert says),
Woodard Girl Out 