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

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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

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