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

Dear Charles Hemenway, MD, phD & Shirley Pulawski (author of the Article New movie portrays teen cancer unrealistically, expert says),

  My children and I have been eagerly waiting for The Fault in Our Stars, authored by John Green (#TFIOS) to hit the big screen next week. To watch the trailer of this movie click here.  We have all read it. My first read was painful, I’ll admit. Throughout the entire book I found myself praying for these fictional characters to beat the odds and just pull through. Be the exception to the 46/7 rule. If you’re reading this and you are not aware of 46/7: each school day in America, 46 children are diagnosed with one form or another of pediatric cancer. FORTY SIX. That is the average of TWO plus elementary age classroom. EVERY.SINGLE. DAY. Every school day – 7 children will die. Is this a “scare” tactic? NO. It’s the truth. (If you are a detail person and really need to see my history with childhood cancer, please scroll to the very first blog post on this (my personal) blog. If it’s alarming to you, we hope that it propels you into ACTION. If you have never experienced childhood cancer in your family – how lucky you are. But know this, the day before their child received their cancer diagnosis – cancer parents were just like you. They did nothing wrong, This lottery doesn’t discriminate and all babies are entered into the lottery without your permission.

7 pairs of shoes that will be empty by the end of today.

 

First, let me dispel any of the following myths that non-supporters may form in their minds about myself and the purpose of this blog post. As you’ll see, I’ve gotten this before. I am well-equipped and well-versed with my reply.

MOST COMMON MYTH 1. I am not, repeat NOT – the mother of a cancer child. I am not “sick with grief over the death of my own child” (which therefore makes me emotional and not clearly able to process thoughts). Supporting evidence to prove this myth. 1. Both of my living children (yes, I did lose late term pregnancies; they did not have the chance to get childhood cancer) are indeed healthy and cancer free. Thank-you, Jesus! 2. I know it’s hard to believe, but there are some advocates out there who (no matter what the situation – childhood cancer, school nurse gone wrong, etc) that will do whatever it takes to ensure ALL children are safe, protected and have advocates. Of course any mother could go to prison for any violation of her own children; then there’s those like me – who could go for ANY child.

 

Now, before we begin specifically, here is another myth that I’ll dispel before your mind even goes there. MYTH: “This woman must be a physician-hater. I read somewhere she had a botched surgical procedure with life-long effects”. TRUTH: Although I did have a botched surgical procedure in 1996 and am the winner-winner-chicken-dinner of post ERCP chronic non-alcoholic pancreatitis, I have devoted the last 21 years of my professional career to the strategical implementation, marketing, build-out, launching and day to day Practice Administration of highly successful private medical practices of not only Family Practice – but also the specialities of Obstetrics & Gynecology, Interventional Pain Management, Endocrinology & Diabetes, Pulmonology & Dermatology. I am educated and well-versed in these specialties and all Federal and State Compliance Programs. It could be said, that I am one of the biggest advocates for the private practice Physician. It has been said, that I am tough to work for, but alas, numbers don’t lie and even with the slippery downward slope of medicine today, my practices bottom lines are thriving.

I am glad that has been cleared up so we can get to the heart (or the point) of this blog post. This morning, I read an article on helio.com titled “New movie portrays teen cancer unrealistically, expert says”. The expert was you, Dr. Hemenway. It has crossed my mind that perhaps Ms. Shirley Pulawski didn’t send you a draft of this article for your review prior to it’s launch. It could have happened that way, but you may review this and ask for a couple of addendums in the name of liability and all.

Dr. Hemenway, this article angered me. Not in a little way. In a BIG way. It began early in the third paragraph where you are quoted as stating that “outcomes for most pediatric cancers are much better than the movie portrays, and the types of cancer the teens experience are rare.” I absolutely can see how your background would lead to a jaded opinion such as this. But let’s tell the truth, shall we? Okay, since your work is in Hematology/Oncology research, I am going to make a laywoman’s assumption that you have vast experience in numbers pertaining to Leukemias and/or cancer of the blood. True? Okay. In fact, Doctor, the reason that the general population thinks that childhood cancer is not an epidemic problem today, is because professionals such as yourself continue to state that these cancers are “rare” and that the “overall cure rate” is 70%. You are wrong, sir. The only reason this number can even closely be somewhat this high is because all Leukemia’s are lumped into this number.  Praise God, the success rate of primary Leukemia’s is HIGH. But, let’s back those out. Now – what is the cure rate of all other childhood cancers? NOT 70%. Can you see how this can be misleading? (Yes, for your field of study, this looks fantastic (& may even lend to continued research dollars) but your point was – the movie doesn’t paint a realistic picture.) The movie isn’t portraying Leukemia. Therefore, this movie can not portray rainbows and ponies and “most kids with cancer do very well, because that makes everyone feel better”.  I challenge you to review – your numbers aren’t realistic overall either. Please, let’s be real.

Cancer is still the leading cause of death from disease among U.S. children over the ripe age of 1. Cancer kills MORE children than cystic fibrosis, muscular dystrophy, AIDS, asthma and juvenile diabetes combined. In the United States in children from birth to age 19, more than 18,000 cases of cancer are diagnosed each year. While progress against childhood cancer has been made, cure rates for most pediatric cancers remain below 40% (not 70%)! This overall number is inflated when blood cancers are included. I’d also point out that NONE of the characters in TFIOS had the dx of Leukemia, therefore your comparison that childhood cancer cure rates are 70% would NOT have applied to the cancers these three teens had.  I guess that makes this work of fiction closer to the truth than perhaps you thought?

For clarity: here are the reported most common forms of childhood cancer:

Leukemia (acute lymphoblastic leukemia and acute myeloid leukemia) – 90% cure rate

CNS, brain, and spinal cord tumors (including Medulloblastomas, Glioblastomas, DIPG) – 30% cure rate

Lymphomas, (including Hodgkin and non-Hodgkin lymphoma)

Skin cancer and melanomas

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

Just a little glitch…

“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 MY Physicians and we know how great/easy of a patient I am. I copied and pasted his post from my Facebook timeline:

Brent Boles, MD ~ Covenant Healthcare for Women

Brent Boles, MD ~ Covenant Healthcare for Women

Brent Boles
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’.”
(You may visit his website at http://www.covenanthealthcareforwomen.com/)
 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 pregnant
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.
Practice_Performance_Graphic_1
  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.)
 GO GOLD
  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!
AmericanEagle_34
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.

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

On President’s Day Leadership

When I hear the word “President”, I think about leadership. I posted the following on facebook this morning:

Today our Nation celebrates President’s Day. Although I do not agree with our current President on much of anything, I do respect the office of the President of the United States. If were in charge, it would be mandatory that any new President go through a minimum of military basic training and one deployment, if they have zero active duty military experience. In addition to the oath of office, I would ensure that they commit their leadership to some of our past President’s thoughts as quoted below:

“As we express our gratitude, we must never forget that the highest appreciation is not to utter words, but to live by them.” – President John F. Kennedy
(How many promises are made during campaign time, then never heard again?)

“No president who performs his duties faithfully and conscientiously can have any leisure.” – President James Polk
(How many costly vacations are there now, with the average American family having zero? This country and those who do actual work for or fought for her owe nobody a vacation. If you are a person that requires this much vacation, this is not the job for you.)

“We should live our lives as though Christ were coming this afternoon.” – President Jimmy Carter

“I leave you, hoping that the lamp of liberty will burn in your bosoms until there shall no longer be a doubt that all men are created free and equal.” – President Abraham Lincoln

(We say we are there, but we are not even close).

 This post has sparked an entire conversation about leadership. The following is my list of leadership observations, which means these are the characteristics I have found successful leaders to have in common with each other:

Leaders get up and are productive early in the day. They do not sleep until 10am.    Ever.

I’m not certain more of a statement is needed – but if I review in my mind the characteristics of the smartest savviest leaders I know, I have never known any of them to be in bed until 10am.

Leaders do not dress like they just rolled out of bed.

Ever.

Leaders are consistent.

Leaders are instinctual decision makers.

They can or are capable of making 30 decisions in 30 minutes – No lie. Decisions that move in the forward direction of productive momentum. This reminds me of my early soccer coaching days. I never allowed the forward offense to “stop” or “trap” the ball that was already headed towards the goal. Instead, I taught them to move to the ball – and continue its momentum.  I watched many coaches with pee-wee players spend a lot of time on drills for “trapping”. It puzzled me. Even the youngest kids show offensive or defensive skill sets early on. Teach the defenders to trap and stop – then send. Teach the offense to move to the send, not stop its momentum. Of course, I also like to make them practice with their arms locked so they moved as one – you know, as a team toward the goal, until they “get it” about team work. Oh yes, that’s right – my generation likes all players to be treated equally, with equal play time and everyone is a winner with a trophy. Yeah.  Because real life is just like that.

 In professional settings, I have always enjoyed allowing employees to job swap for a day. In medicine, the clinical back office thinks the administrative/clerical staff does nothing all day long but sit.  They think this – until they sit in that chair for a day and have to multi-task more than an air traffic controller while having a sweet cheerful voice (as in “receive them well”) every time the phone rings out of the 151 calls tracked on a medical Monday morning.  This one day of job swapping can work wonders for team work.

Leaders use excellent language and have great communication skills.

 I believe, really believe that words DO matter.  The words leaders use compel people to follow them. It amazes me when (as a consultant) I receive a call from a very frustrated business owner and he or she rambles on about why nothing works in their business, sighting many examples of poor productivity  Inevitably, I visit their work environment and observe those in charge (or owners themselves) as the most negative people ever. They hate their work, their job – their own company. They hate themselves. They speak ill of their employees – yet they wonder why in the world no one likes to – or wants to work for them. Here’s a hint: if you can’t stand yourself and think your company is a lousy place to work – so do we!

My father hated foul language. He did use an occasional “cuss word” – but rarely did he have to raise his voice. He told me that simple people used simple language, and he felt strongly that if people needed to use foul language to get their point across – they were most likely suffering from very low self esteem or a poor education, and almost always did not see the value or pride in a properly kept self or property. Definition: guilder.

 Leaders Genuinely Enjoy Responsibilities

            Successful leaders just love being leaders – not for the sake of power but for the meaningful and purposeful impact they can create.   When you have reached a senior level of leadership – it’s about your ability to serve others and this can’t be accomplished unless you genuinely enjoy what you do. People who truly possess a servant’s heart will be successful. It just follows a natural path.

            I had a conversation with a local chiropractor last week and as we discussed adrenal fatigue, etc – the subject of vacation came up. I know he’s trained to recommend certain things, but with tact and couth, I vetoed his recommendation.  Specifically – a long vacation – like on a ship. These types of vacations could drive most leaders completely out of their mind. He secretly admitted he felt the same exact way. A ten day cruise would have the exact opposite effect on me, than what I assume is it’s purpose.  I love to travel – I just don’t want to travel slowly, and for the sake of all things good – not on a germ infested ship with little to no chance of getting off safely in case of an emergency. And no food that I could ever eat.  Did we not learn anything from the Titanic? Floating hotels, I just don’t get it. I prefer to spend my money getting quickly to my destination and to learn as much as I can about the people and their customs while I am there.  In other words – leaders work. A lot. They do vacation, but they tend to still engage in learning activities while “at that place of rest”. Although I have not mastered the skill of power napping, I think I do fairly well at “power vacationing”.  Normally, there is so much information flowing and synapsing through my brain – that taking a long lunch or a Friday Funday session feels like a vacation.

 Leaders have positive energy and a positive attitude

As such, they are likeable, respected and strong willed.  They don’t allow failures to disrupt momentum; they expect that they will fail – a lot.

Leaders create, implement and manage systems.

            Not that they don’t recognize the importance of their people, but they all recognize that in general – people are not manageable, but systems are. They build their systems so that a mediocre person with mediocre talent can follow them and are ecstatic when they get a stellar performer. When this is done well, anyone who can follow their systems can work for them. Period.

They “kick non performers” off the short bus – fast.

            It never ends well otherwise. If the best behavior is exerted in the first 90 days, and that behavior is nowhere close to acceptable, they act quickly – and save themselves time, money and headache. it sounds mean, but it is what it is.

 Obviously my observations have been most beneficial when applied appropriately. I also have some personal rules that I apply to almost all situations (both business and personal).

I chose to spend my time:

  • With those who build me up.  If I am the sum total of the five people or activities that I spend most of my time with and those five people influence the way in which I behave and act in the outer world, and the way in which I perceive, think and feel in the inner world of my mind – I must chose wisely.
  • With a close friend or two that are capable of being my mirror mentors – they tell me exactly what they see in me, about me, with no holds barred, even if I don’t want to hear it – and I usually don’t
  • With those who are far smarter than me. That’s just – well, smart. In opposition, I have watched many bad leaders only allow those not as smart as them under them – so they are never challenged.
  • Not watching television that has any chance of “dumbing” me down. There are a lot of options out there. I have a hard time even understanding why anyone would spend time watching most television and feel completely lost when people speak of “honey boo-boo, duck anything, etc”. I don’t judge others, it’s just not for me and I don’t have the time.
  • Reading. Everything. I don’t believe everything I read, but it’s important to know what’s out there and form my own opinions
  • By only spending my money with people and businesses I like. I watch sales people and meet with many of them. Most of them do not get “it”. Long before I had a business degree, I formulated with a best friend the rule that in order to spend my money with you- I had to like you. Period. It just cannot be painful to spend my own money. In fact, I had an exact example situation of this today. Said stalker rep showed up on site after leaving or being forced to leave his last company. He freaked me out then with his stalker like tactics (private jet, pick me up and take me to dinner, where do I live? Creep) and today’s purpose after several unanswered phone calls and texts (like he’s my friend and can text me) was to show up on site and tell the staff that he knew I was blowing him off, but he had urgent information that was crucial to my business. The only thing crucial to my business is that he is not in it.
  • Raising childhood cancer awareness. Many times I have felt heartbreak more than I previously thought I could bear. This is hard “in the trenches” kind of work that I want to quit every day. I have never wanted to quit anything more or as often. There is nothing natural about personally witnessing a young child die and their mother’s grief – and then most of his friends too. This experience has led me to be ashamed of my generation/adults and the decisions we make. We can and must do better than this. I guarantee that in any other situation (be it a shooter, or terrorist, a drunk driver, a text message sent while driving, etc – if those acts killed 7 kids each and every day, we’d have federal legislation in no time to ban whatever it was – the gun, the texting, the drinking and driving. Point taken?  46/7.

 

It’s just a pair of shoes

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I was introduced to Peach’s Neet Feet (PNF) through Clinton Milliken. Clinton Milliken was a 7 year old Cancer warrior Ninja – who fought Medulloblastoma, a brain cancer, for over two years and stole my heart in an instant. Clinton was only on this earth for 7 short years, one month and two days, but his impact has been powerful. He and his Mom created Clinton’s Club a non-profit organization that supports families affected by Pediatric Cancer in his memory and strives to change the statistic 46/7. Clinton loved Random Acts of Kindness (RAOK) and specifically requested them to be performed on his last birthday with us (12/17). Therefore, it is no surprise that Clinton loved Peach and her mission! Two peas in a pod. (www.clintonsclub.org)

 PNF is a grassroots custom shoe donation project. Madison Steiner and her team of guest artists hand paint and donate canvas shoes for children battling cancer, serious illness, and lifelong disabilities. Shortly after meeting Clinton, he received his pair of PNF’s and oh how he loved those shoes! I remember how amazing they looked, but more vividly I remember how they made Clinton feel. Clinton’s PNF’s brought him Joy and made him smile that smile. He used descriptive words like “cool”, “colorful” and “special” to describe his shoes. You can see some snazzy photos of Clinton’s shoes here: http://www.peachsneetfeet.com/theirstory/57-clinton.Image

 Being introverted naturally lent Clinton to be a thinker and he had an amazing analytical mind. He told me all about the process of painting shoes, and how he had picked what should be on his very own. Clinton’s shoes were sponsored by Fletcher Christian, a complete stranger. We probably never thanked him appropriately, but as I wrote this post I thought about him and decided to message a note of thanks. Better late than never! This is the reply I received today “Well, no thank-you was ever needed. As odd as it may be Clinton had a very big impact in my life, and helped initiate a change for the better. But, I did it in the first place just to help bring a smile to someone who needed it” I’m telling you people – this is where the magic starts! It may seem like just a pair of painted shoes, but it’s so much more. We all knew Clinton as a cheeky 7 year old hero. Our hero, who touched the lives of complete strangers – and still is to this day.

 There always seems to be a story to tell, that is – if you pay attention.  Not just listening, but really putting “feet” to the needs of those around you. I specifically remember my father refusing to hear negative words spoken, and he certainly would not tolerate laziness. I can not recall exactly what prompted this life lesson, but I do remember being very young and riding with him to a place where others had far less than we did. I can still hear his words –“no matter how bad you think your current situation is, there is always someone who has less than you, yet show far more gratitude.” He usually ended these discussions with expectations of ways we should contribute. Perhaps this is one of the reasons I was immediately drawn to Peach’s Neet Feet and Madison’s incredible vision. So after Clinton received his shoes, I quickly checked out the PNF website www.peachsneetfeet.com and began following their efforts via social media. Talk about love at first sight! I knew I had to sponsor shoes for more kids – and spread the word of this fantastic non-profit. Soon, my friends were contacting me, begging me to get them an “in” so they too could sponsor shoes. There really is no “in” – just send them your money!  I have always said – there was just something special about Clinton – and Peach saw it too. She dedicated this piece to our Ninja King. (Watch all the way to the end!)

http://www.youtube.com/watch?feature=player_embedded&v=IB8Uvf9JqhM

 Fast forward a year full of connections and opportunities to sponsor shoes. I have experienced an immeasurable amount of joy by sponsoring and watching these kids receive their shoes. At this point, I just go online and send money to Peach and her team works their magic. In a somewhat routine email, I received notification that my last donation had sponsored some rocking PNF’s for not only a Leukemia warrior – but a Down’s Syndrome (DS) Leukemia warrior! If you are not aware – kids with DS are at an increased risk for Leukemia – but it’s a double edged sword. The very genetic mutation that lends itself to better NED rates, are the very same mutations that increase the risk of Leukemia.  It’s hard to put into words exactly what happened next. Somehow through the magic of social media, Keeton’s mom, Misty and I realized that we are long lost sisters or something! In the very short time since Keeton received his PNF’s, I learned that his parents wanted more than ever to have a 3rd birthday party for him –and just have one day of being a “normal” kid. However, going from two incomes to one while fighting childhood cancer just doesn’t save room in the family budget for birthday parties. WHAT? I could provide that! I immediately fell in love with Keeton – from a photo. I printed it out the same day I received it – and there it has stayed on my refrigerator and in my Bible – a reminder to pray for this child each day. Most mornings, Keeton is the first thing I see. Keeton loves Blue’s Clues and my heart was stolen by Keeton. So – with some help from other Clinton’s Clubbers, we planned, created, and crafted our way into creating a Blue’s Clue’s Birthday Bash to beat the band! Volunteers came together with countless hours of crafting and executing. None of our volunteers knew Keeton, nor would get the chance to meet him. At the time that I committed, I didn’t even know where he lived – but anywhere is accessible by aircraft – right? As it turns out, we only live 3 hours apart! I drove from Nashville with my son – and a car loaded full of Blue (and a cake that made it over Monteagle mountain doing – you know, the speed limit!). We had 30 minutes of set up time – never seeing the party location, but with Keeton’s local friends, we pulled off a fantastic Blue’s Clue’s themed party. It was an amazing experience, one that has changed my life for sure. To be able to watch this little guy dance, play and eat cake with that fabulous smile – worth every minute and more. Today, Misty posted this on my facebook wall: “Lori, on days my faith is weak and doubts flood my mind… I know a greater power is there watching and waiting for the perfect time to send a special someone into your life. It’s truly amazing how a pair of shoes could change our life, but those magic shoes have touched our hearts and our life in more ways than I can count. You could’ve sponsored any child, but you fell in love and chose this precious ray of sunshine named Keeton. It was an instant love and connection for all of us with you and your family. It feels like we’ve known each other forever and we are truly blessed & honored to call you all family. God’s ultimate plan♥ Life hasn’t been easy and not having family has been even harder. I’m so thankful for having you in our family. I would be lost without the love and support from our “c” family. Thank you God for blessing us with you♥.

 

 My favorite Keeton story is yet to come, I just know it.  I can not wait for the day that we celebrate his “I Love you’s” spoken to his Mom. During my short visit, Misty told me how she had the chance to take Keeton to Disney on Ice recently. He does not communicate with words, but the joy in his heart and his level of excitement was so overwhelming that each time a new character came on the ice, he turned around and hugged his Mom. I love this. This is a true representation of a PNF warrior. 

 It really is an amazing thing. They are just a pair of shoes. Instantly family through a pair of shoes?  I never set out with the intentions of being thrown into the Childhood Cancer world – but no one ever does. I have been blessed to know these families and what they give to me is far more than I could ever give back. I have loved with them, lost with them – and will fight with them to change this unequal equation of funding for a cure. It’s mind boggling really. There are too many beautiful families to mention in one post, but I can assure you one quality they all possess for sure. They spend their time living. Sometimes moment by moment, but never just waiting for death to occur. Until the last breath their child takes they fight and have hope, they raise each other up. They love like nothing I have ever seen. They celebrate the smallest of things – like band-aid drives and plastic bracelets with each other’s names on them.  I have witnessed more living and more life experiences wrapped up in short lives than some who live 85+ years ever experience.  It’s true, I’m a volunteer – but I get paid. BIG.  As I was pulling away from the party (the first time – Misty led me to the hotel, but couldn’t keep driving home as planned. She had to pull in and get out to say good-bye one more time) little Keeton slapped his hand over his perfect little mouth and blew kisses to me. Misty was stunned. She didn’t think that Keeton really connected with others, but he did.  I have a feeling there will be a lot more of those blown kisses delivered, and I can’t wait to catch them!

 So, yes – it’s just a pair of shoes. A magical love-filled pair of shoes. Thank-you Madison and PNF for allowing us to be part of your tribe.

 “He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.” Revelation 21:4