Infinite Love For Natalie Grace

A Small School With a BIG Heart

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AT THE END OF A WINDING DRIVEWAY set on a scenic hill in Atlantic Highlands, NJ you’ll find Mountain Hill School which is owned and operated by the beautiful Kaiser family. When I first met Lauren Kaiser and saw Mountain Hill I knew in an instant that it would be the best place for Natalie to transition from a year of aggressive cancer treatment to introducing her back into the Mountain Hill-35world of being a kid and going to school. Complete with pushy goats and a very hungry pony, Mountain Hill offers so much more then a peaceful view, it genuinely provides kids with a home away from home. From the Kaiser’s, to the fabulous teachers and office staff that they employ, it’s crystal clear that these wonderful people love what they do and sincerely adore the children that they teach and care for.

Lauren and Andy Kaiser have three beautiful children, Jack (15), Jaime (13), and Ryan who is forever 6. Ryan Andrew Kaiser, a boy who cherished his family beyond measure (along with wolves and pirates of course), was born on December 16, 1996 and was almost immediately diagnosed with Complex Congenital Heart Disease (CHD)…baby Ryan was only hours into his life and yet already he was in a fight to hold on to it. For the next two years Lauren and Andy rode the unpredictable waves of emotions mixed with the medical world as their beautiful, brave boy endured more surgeries and procedures then most adults will experience in a lifetime…but even with all of the odds stacked against him, Ryan pushed through and stunned his doctors by making it past every storm until he finally came through to the sunny beaches of his seemingly good health. Sure Ryan now had a daily regimen of medications, but aside from that he was finally beginning to live his life as a healthy carefree child.

For the next four years Ryan did just that, he lived! He welcomed into the world a baby brother and a couple of years later a sister as well…he began impressing his teachers with his advance math skills (not to mention his uncanny ability to recite the alphabet backwards), he learned anything and everything with passion and drive, and played with all of his 6-year-old energetic might all the while maintaining good manners and grace. On January 25, 2003 Lauren and Andy’s life came to a screeching halt as Ryan died suddenly and unexpectedly on this day. The doctors concluded that he may have had an aneurysm, or that the electric impulse in his heart simply stopped due to the complexion of his heart problem…but whatever the exact cause of Ryan’s death, it doesn’t change the fact that this beautiful boy, thought to be in the clear of any medical issues, is now gone years and years before his time.

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Shortly after his death, the Ryan Andrew Kaiser Memorial Foundation was born. It wasn’t Ryan’s tragic death that showed the Kaiser’s the power of giving back, they’ve known this always, however, they do hold and understand more than most the gravitas behind the saying of never taking anything or anyone for granted. With Ryan’s foundation the Kaiser’s have raised funds allowing them to assist other local families with critically ill children, they’ve contributed towards the research of Congenital Heart Disease (the #1 birth defect in children), they’ve built playgrounds (six and counting) to give kids a safe place to unwind, and most recently they’ve now donated $15,000 in Ryan’s name to help in the fight against childhood cancer! In fact, this is how I first met the Kaiser’s.

I was a little more then half way into my very first Will You Send Us a Dollar fundraiser (around July 2013) when my husband passed along a $5000 check from the Ryan Andrew Kaiser Memorial Foundation (RAKMF). He had been doing some work in the Kaiser’s home when he and Andy began talking about Natalie and Ryan. From the moment Andy heard about our fundraiser and the goal we had set, he spoke to Lauren and the two of them wanted to help. At the time I was thinking that reaching my goal of $50,000 by Natalie’s (then) 4th birthday on September 28th was never going to happen…but then I received this amazing donation from (RAKMF). For the first time I was actually ahead of my weekly goal instead of being 2-3 weeks behind. In fact from that moment on it seemed as though donations began to pick-up and not only was I confident that we’d get to that $50,000, but I knew that we were going to blow right past it and we did. With that first fundraiser we ended up raising $110,000 for The Truth 365 where EVERY single penny raised helped to fulfill SIX research grants for AML (an aggressive form of leukemia). I’ll never forget, and I will always appreciate that first check from RAKMF as I truly believe it’s what propelled us towards hitting that goal!

This photo was taken in April of 2014 after the HUGE success of Mountain Hill's first Hike the Hill to Help fundraiser which helped us towards our goal of raising $150,000 for childhood cancer research via The Truth 365. Can you tell Natalie was a little bit excited?!

This photo was taken in April of 2014 after the HUGE success of Mountain Hill’s first Hike the Hill to Help fundraiser which helped us towards our goal of raising $150,000 for childhood cancer research via The Truth 365. Can you tell Natalie was a little bit excited?!

Shortly after the success of that fundraiser Lauren contacted me saying that she and Andy wanted to do more to help with our cause…enter Hike the Hill to Help. In spring of 2014 the Kaisers decided to hold a fundraiser at their amazing school (Natalie hadn’t been attending just yet) where every Mountain Hill child would be asked to “hike” up and down the school hill in an effort to raise funds and awareness for our second Will You Send Us a Dollar campaign (this time our goal was to raise $150,000 by Natalie’s 5th b-day for The Truth 365). With sponsorship forms having been sent home with all of the kiddos, and the kids being informed as to why these children fighting cancer needed their help, they eagerly brought in donations and hiked that hill with pride and excitement in order to help “sick kids get the medicine that they need.” You see, AMAZING, kind families are just part of the territory at Mountain Hill school…and thanks to their generosity, that first Hike the Hill to Help fundraiser yielded over $15,000 towards our goal ($10K was raised by the MH families and the other $5K was once again from the RAKMF)! $15,000!!! So like the previous year, RAKMF had jump-started us towards our goal as did my now fellow Mountain Hill families. Oh, and you might have guessed it but once again we not only reached our goal last year, but we surpassed it by raising $164,000 for The Truth 365 (where we solely fulfilled three grants for Ewing Sarcoma research)!

So here we are at present day, and I’m happy to announce that for the second year in a row, our family of parents and children at the Mountain Hill School have Hiked the Hill once again to help us towards our new goal of raising $200,000 for The Truth 365 by Natalie’s 6th birthday in September. If you can believe it, these AMAZING families have once again raised just over $15,000 for our cause ($10,285.65 from the MH families, and for the third year in a row a $5000 donation via RAKMF)!! I know I’m a broken record with this sometimes, but I mean it from the bottom of my heart…I will forever be grateful to not only the Kaiser family and RAKMF, but also to the MANY Mountain Hill families who have embraced this fundraiser and our family. Just imagine if every school out there mirrored this simple, yet beautiful fundraiser…we’d be fulfilling childhood cancer research grants left and right!

THANK YOU once again Mountain Hill School…small gestures done by good-hearted people can lead to an unstoppable force of selflessness.  

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Lauren Kaiser (far right) with five of her amazing staff members.

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We let Natalie’s big sister Hannah play hooky from school so that she could join us for a day of Hiking the Hill. Some things need to be taught outside of the classroom!

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The kids wanted to keep track of how many times they could go up and down that big hill!

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Lauren Kaiser high-fiving one of the kids at the bottom of the hill.

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Andy Kaiser high-fiving one of the kids after his first hike down the hill.

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READY. SET. GO!!

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The kids were changing “HIKE THE HILL, HIKE THE HILL, HIKE THE HILL!”

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A little rest after a BIG hike!

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Some of the kiddos needed their teachers help to get back up that hill.

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Unspoken Words

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This time last year we had just busted out of the hospital with Natalie.  About a week and a half prior we had returned home from Natalie’s Make-a-Wish trip where we played in the sun for a week at Atlantis (Natalie was 4-years-old).  We had an AMAZING time, however after only a few days of being home Natalie spiked a fever which landed us in the emergency room…turned out she was neutropenic (meaning she had next to no neutrophils which are a type of white blood cell that fight off infections).  This is always very dangerous as the smallest virus or infection can cause the biggest (and scariest) problems since her little body has no way of fighting whatever it is off.

Natalie's Make-a-Wish trip to Atlantis.

Natalie’s Make-a-Wish trip to Atlantis.

Because chemo treatments and “medications” are so toxic, we were no strangers to neutropenia with Natalie as unfortunately this happens often and regularly to kids in round the clock treatment for cancer.  Anyway, having found that out, Natalie was admitted into the hospital where we stayed for about a week.  Honestly though, at that point we were a good four months into her maintenance treatment (meaning monthly IV chemo rather then harsh weekly chemos as in the first ten months) and while no parent wants to be in the hospital with their child, or see them in any discomfort or pain…we hadn’t had to be there with Natalie for nearly six months, so we were grateful that she had had such a “healthy” run of treatment….and touch wood, we haven’t had to be admitted for ANYTHING since!

Natalie felt pretty crappy much of that week, however because of where she was in treatment, her numbers rebounded quickly and the day before we were released she perked up big time.  On this particular day there was about an hour or so where Natalie didn’t have to be hooked up to anything!  That’s pretty unheard of when you’re in the hospital, in the least there’s usually a steady bag of fluids going.  Anyway, Natalie had complete freedom for that hour (meaning no lines connected to her IV), so my girlie wanted to utilize that freedom and stroll about her room without having to drag around an IV pole.  At that point I picked up my camera and just started following her around snapping photos as she went.  As odd as this might sound, it was pretty great because Natalie and I didn’t say a word to each other the entire time, I was merely an observer as she did her thing.  She never told me to stop taking photos, nor did she “act” for the camera…it’s as if I wasn’t even there and Natalie was simply enjoying some quiet time alone.

I would have LOVED to have known what was going through her mind at this time…it took everything in me to not talk to her (especially when she was doing something that I didn’t really like her doing), but I kept my mouth shut for once and just let her be.

Natalie always loved to sit up by the window and look out.  Sometimes it would be a good five minutes before she'd get down or be distracted by something else.

Natalie always enjoys sitting up by the window…sometimes it would be a good five minutes before she’d get down.

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Natalie’s bunny doubles as a pillow often : )

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The nurses dry-erase board is ALWAYS a favorite!

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Peek-a-boo

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My tip-toes girl.

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Not sure what she was doing here, but she just kept reaching.

Getting tired again.

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Getting ready to dose off again.

Wow…just WOW!

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The girls and I presenting to Dena Sherwood founder of the Arms Wide Open Childhood Cancer Foundation and the creator of The Truth 365. Also pictured is Dena’s son 7-year-old Billy who is also a childhood cancer survivor (5 years NED neuroblastoma)! I ADORE the Sherwood family!

Shame on me for ONLY filling you all in on this now (I’ll spare you my excuses)…BUT….our 2014 Will You Send Us a Dollar campaign raised $164,326.03 for        The Truth 365!!!!  WE DID IT, we passed our $150K goal!!!

Because of all of you and your HUGE hearts and your kindness, EVERY, SINGLE, SOLITARY dollar of that money will go towards funding childhood cancer research!!!  And for those of you who are new to our fundraiser, I don’t just mean every dollar on our end (that’s a given)…but on The Truth 365’s end as well…NOTHING is taken out for administrative purposes or salaries, how amazing is that?!

Just like last year, it’s going to take some time before we know exactly what we’ll be funding, but the moment I’m able to share the news with all of you I will fill you in (last year the process took about six months).  It’s important that the proper time be taken to review all grant applications (not by us of course, I’m talking about by some of the childhood cancer community’s leading oncologists)…this way we know that only the best trials with the most potential will be given our donations.  In other words…EVERY DOLLAR COUNTS!

As some of you already know, my own personal goal is to raise at least $100,000 each year supporting a different childhood cancer each time (there are 12 major types of childhood cancer).  Last year the $110,000 we raised helped to fund 6 trials with the main focus being on AML leukemia.  That is NOT the type of leukemia that Natalie has (she has ALL), however it’s the one they know the least about therefore the survival rate isn’t good.  This years $164,326.03 will be designated for Ewings Sarcoma research in honor of our sweet Julianna who died a little over a year ago.  Let me just say that had it not been for the AMAZING community where Julianna lived, we would have NEVER made it to $164K!  I don’t know exactly how much the Woodbury/Monroe communities raised, but from Julianna’s school, to the local Cub Scouts, to the swim club, the local pediatricians office, and MANY, many more…I’d have to bet that in the least they raised over $20,000!  Each of them could have donated directly to The Truth on their own, however it was important to Tina (Julianna’s mom) that they go through our family to make sure that we made it towards our goal of $150K.  She didn’t ask that they do this because I was earmarking the funds for Ewings Sarcoma research to honor Julianna, but because if Julianna were alive today she would have insisted it go to us simply so that we could meet our goal.  In fact, last year when Julianna was alive for our fundraiser, she donated her own money along with some valuable personal items for me to auction off to put towards our fundraiser as well…Julianna by nature and nurture has always wanted to help others (in so many different capacities)…and she is still doing it today.

This photo is actually from our fundraiser last year.  This bank was donated by Julianna and her family, and the inset photo is of Julianna while she was stuck in the PICU.  I wanted to include this photo since at least $20,000 of this $164K raised was donated in her honor by hundreds of amazing people in Julianna's community!

This photo is actually from our fundraiser last year. This bank was donated by Julianna and her family, and the inset photo is of Julianna while she was stuck in the PICU. I wanted to include this photo since at least $20,000 of this $164K raised was donated in her honor by hundreds of amazing people in Julianna’s community!

I will never, ever, ever be able to thank you all individually…but please know that I don’t take a single donation for granted.  Each piece of mail is just as exciting as the first.  I keep EVERY single letter/note that we receive…in fact they go into binders so that when I’m feeling as though I need a little inspiration to keep fighting (we all have our hopeless moments), I can flip through your beautiful messages to get an instant pick up.  So THANK YOU all…..THANK YOU for holding those lemonade stands, those garage and bake sales.  Thank you for your tea, coffee, wine, birthday and Halloween party fundraisers…thank you for your poker runs, your princess, balloon, and music parties.  Thank you for thinking of us when you sold your CAR, when you received your bonus at work…when you ran that 5K!  Thank you for hosting one of our MANY change containers at your restaurants and other places of business….thank YOU for giving us some of the proceeds of your business sales…for attending one of our MANY fundraisers, for being a sponsor, for spending your hard earned money over and over and over again.  Thank you for the gifts + gift cards that we used at one of our many auctions, thank you for VOLUNTEERING your time to help this crazy lady (me)!!  Thank you for being as passionate as we are about helping these amazing kids and for helping to put an end to childhood cancer.  THANK YOU for recognizing that any one of you can be pushed into our crappy boat at any time, thank you for associating with our lives, for listening to our stories no matter how sad, for learning and for passing this valuable education on to others….THANK YOU for joining our fight and for never EVER giving up!!  It might not be around the corner, but until there is a cure, we WILL find better ways to treat our children….ways that are less toxic, ways that wont damage their little bodies further, ways that won’t kill them….ways where they can still be a kid, where they won’t lose their hair, where they won’t have to take up residence at a hospital, where they can go to school like every other healthy child and simply laugh, play and love life without a care in the world.  THANK YOU from the bottom of my heart for all of your small gestures that are actually big ones to me…like inviting me to speak at your events and offices…and for reading, liking and sharing my posts…your endless support means more to me then you will ever know!

As you can see, the girls LOVE getting the mail from our P.O. Box…this day it was stuffed which hasn't happened too often so they were REALLY excited by how much mail we had gotten.  I'm dreaming of the day where there's nothing in our P.O. Box except a slip of paper telling us we have a package…only instead of a package waiting, it's a whole sack full of mail!!  Maybe next year will be our year where that happens!

As you can see, the girls LOVE getting the mail from our P.O. Box…this day it was stuffed which hasn’t happened too often so they were REALLY excited by how much mail we had gotten. I’m dreaming of the day where there’s nothing in our P.O. Box except a slip of paper telling us we have a package…only instead of a package waiting, it’s a whole sack full of mail!! Maybe next year will be our year where that happens!


Please keep in mind that while the 2014 Will You Send Us a Dollar campaign is technically over…my family and I will NEVER stop advocating or fundraising.  Our P.O. Box and our donation site are ALWAYS up and running.  So by all means, if at any point you’re feeling extra generous and would like to contribute to our 2015 goal (which will officially start up in April), then feel free to send a donation our way!  It would be AWESOME to start next year’s fundraiser with money already put towards our goal to help fight childhood cancer (as always via The Truth 365). So thank you in advance for thinking of us!!

You all should be SO proud of everything that you did, everything that your kids did, your community…all to help us reach that goal and more importantly to help these kids!!  Just think, last years fundraiser ran for 5 months and we raised $110K in that time.  This years ran for 6 months and we raised $164K….so in less then a years time, we’ve raised $274,326.03 for The Truth 365!!!  Pretty awesome considering we have no staff and rely solely on the generosity of all of you!

Our love and appreciation to you all ALWAYS.  Thank you for loving our family like your own!

Andrea, Dan, Hannah and our survivor, Natalie

To make a donation towards our 2015 goal you can mail us at (the girls LOVE getting mail):

P.O. Box 4064

Middletown, NJ 07748

℅: Infinite Love for Natalie Grace/ Andrea Verdone Gorsegner

PLEASE make any checks payable to The Truth 365/ AWOCCF

Or donate via Credit Card to:

www.WillYouSendUsADollar.com

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Combining this check with what we raised last year ($110K)…we have raised $274,326.03 for childhood cancer research in less then a year!! I can’t wait to see what 2015 brings!! THANK YOU everyone!!

We even get international donations!!  The girls thought that was pretty awesome and was wondering why our money is so "boring."  : )

We even get international donations!! The girls thought that was pretty awesome and was wondering why our money is so “boring.” : )

I always paint my car's windows when we're doing the fundraiser, you'd be surprised how many people stop to hand us a donation, or simply stick a dollar or two under my windshield wiper…it's pretty awesome!!  Although, since our house was broken into this summer and we're pretty certain we were targeted (likely because of the fundraiser), I'm thinking my car window painting days might be over…but we'll see!

I I always paint my car’s windows when we’re doing the fundraiser, you’d be surprised how many people stop to hand us a donation, or simply stick a dollar or two under my windshield wiper…it’s pretty awesome!! Although, since our house was broken into this past summer and we’re pretty certain we were targeted (because of the fundraiser), I’m thinking my car window painting days might be over…but we’ll see!

Hannah the Brave

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“It’s shave day, it’s shave day” Hannah screamed as she pounced on our bed last Wednesday morning!  I know it’s been nearly a week since Hannah’s beautiful red locks were shaved off that little head of hers, so I’m sorry to only now be posting about it.

7-year-old Hannah Rose is bravely shaved off her beautiful red locks to honor her 5-year-old sister Natalie Grace (who is in remission from cancer, set to be complete with chemo this November), as well as to honor every other child fighting and who has fought childhood cancer.  Her goal was to show these children that they are not alone.

7-year-old Hannah Rose has bravely shaved off her beautiful red locks to honor her 5-year-old sister Natalie Grace (who is in remission from cancer, set to be complete with chemo this November), as well as to honor every other child fighting and who has fought childhood cancer. Her goal was to show these children that they are not alone.

What an evening…it might have been rainy and cold outside, but inside on the floor of the NY Stock Exchange it was filled with warmth and love as 600 people gathered to not only raise money for childhood cancer research, but also to raise awareness as nine men, two little boys, and one little girl shaved their heads at this Arms Wide Open Childhood Cancer Foundation event.  When the shaving was set to begin, Dena Sherwood had asked Hannah if she would say a few words.  Hannah grabbed the microphone and began to explain to the crowd surrounding her why she wanted to give up those beautiful red locks for childhood cancer.  Her goals were simple, to donate her hair, to inspire people, and to show kids fighting that they are not alone….done, done and done!

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Hannah LOVES to blog for The Truth 365. This is Hannah holding her blog entry announcing that she would be shaving her head for children fighting childhood cancer. “I’m going to shave my head in honor of all of the children fighting cancer especially my sister Natalie. And I DO NOT CARE if someone makes fun of me because I am beautiful no matter what!” – Hannah Gorsegner

As most of you already know, I went into Hannah’s classroom the day before the event to talk to the kids about what Hannah was doing and why.  I also read a  book to them called The Famous Hat, and together at the end we looked at and discussed photos of Natalie throughout her treatment.  When all said and done, the kids were so excited for Hannah wishing their little friend good luck.  But even with the success of this visit, I was still pretty nervous about the other 575 kids in school who weren’t there to hear the details of what Hannah was about to do.  I was (and still am a little bit) nervous that Hannah would get teased and how she would handle that.  In fact, back when Hannah was persistent about shaving her head to begin with, I did give her this warning, that it was bound to happen via some child who simply wouldn’t understand the magnitude of this selfless act.  At that time she had responded with “I don’t care, I’m beautiful just the way I am.”  With that Dan and I decided to support her in this decision fully!  At one point I even had a child life specialist try to convince me to allow her to show Hannah alternate ways that she can help kids with cancer, rather then to do something so drastic that she very well might regret…but we stuck to our guns because clearly this was very important to Hannah and quite honestly, it would be a valuable life lesson for the good or the bad.

Fast forward to the day of the shave, I felt the need to give Hannah one final warning, that unfortunately we live in a society where many people simply won’t be as supportive as her close friends and family, and that words can hurt more then you’d know.  Then, just as before, Hannah quickly responded, “mommy, I really don’t care, I’ll be fine,” and simply carried on with eating her Cheerios.  Okay, if Hannah is comfortable then I need to get comfortable with everything too…after all, I am the adult here!

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Hannah sits cool as a cucumber with a smile on her face as the stylist shaves off her iconic (to our family + friends) red hair. Photo courtesy of A Guy + A Girl Photography.

After Hannah gave her speech to the crowd of people surrounding her at The Shave, she calmly sat in the chair with a smile, as the stylist began to shave her hair.  You’ll notice in some of the photos that Natalie was crying as she yelled, “I don’t want them to take Hannah’s hair off.”  The stylist Michele reacted quickly by asking Natalie if she’d like to help.  Normally when Natalie’s upset, talking to her is the worst thing that you can do as an outsider…and picking her up, well that leads to a complete flip out.  However with Michele’s offer Natalie nodded yes, was swooped off her feet, then began assisting Michele with Hannah’s shave.  A few moments later she wanted to get down and as Michele continued shaving Hannah’s hair, Natalie was now calm and began picking up the falling pieces of red hair telling me that she wants to take a few pieces home…so we did.

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Hannah’s sister, 5-year-old cancer survivor Natalie Grace, assists stylist Michele with the first shave of Hannah’s beautiful red locks. Photo courtesy of A Guy + A Girl Photography.

As Michele was nearing the end of Hannah’s shave the crowd began to clap and cheer and Hannah’s smile got bigger and bigger.  I put her little face in my hands, kissed her cheeks and told her just how proud of her that I was.  She replied, “Mommy, this is a very powerful moment.”  Can this beautiful creature truly be my child, and is she really only 7-years-old?

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One VERY proud and inspired mama! Image courtesy of A Guy + A Girl Photography.

The very next day, four of the nine men who shaved (along with 7-year-old cancer survivor Billy Sherwood who shaved as well) came to our home at 8:30am just to escort Hannah into her class and to talk to the kids about her selfless act, and how she is their Hero for being so brave.  I was incredibly moved when Dena told me that they wanted to do this for her, and Hannah was simply over the moon to have this support from the guys!

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The four amazing men from Merrill Lynch who commuted to our hometown in the morning to support Hannah by walking her to class and speaking with her classmates about Hannah being their hero (from left to right: James Beale, Joe, Liam O’Neil, Mark Ulrich). Image courtesy of Mike Gillette.

Hannah’s classmates all clapped when she walked in, and took turns rubbing her little head.  One friend even brought in his favorite cowboy hat for her. My sweet girl has gotten nothing but support from her classmates as kids are asking to high-five her wherever she goes (Thank you NS parents).  I even received an e-mail from the PTA president later that day inviting Hannah to their next meeting so that she can be recognized as her school’s Student Ambassador!

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Hannah’s classmates eagerly listen as she and the guys tell them all about the evening. Photo courtesy of Mike Gillette.

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A friend gives Hannah a BIG hug to show her support. Photo courtesy of Mike Gillette.

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Friends take turns rubbing Hannah’s newly shaved head. Photo courtesy of Mike Gillette.

I have never seen Hannah so proud of herself, and the best part is that  instead of getting wrapped up into all of this extra attention, her intentions remain pure as she asks me if I think Julianna would be proud of her (Julianna is our friend who died of childhood cancer just over a year ago).  She truly did this gesture from the bottom of her heart with the hopes of helping others, and there is just nothing more beautiful then that!

I am one proud mommy to say the very least!

BONUS:

The Today Show wrote a beautiful article about  Hannah shaving her head as well as they created a 30 second video to show you Hannah’s head getting shaved so check it out…so awesome!!

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Photo courtesy of Mike Gillette.

The Balancing Act

Balancing

I feel as though most things in life are a balancing act. We constantly find struggle to meet that middle ground when it comes to all sorts of things. From balancing work and family, kids and spouses, to health foods and sweets…there are many parts of our lives that require balancing, and yet so many of us struggle to find that gray area. While some balancing requirements are obvious, others become acquired when you’re starting something new. For me it was when I began advocating for our kids in the world of childhood cancer.

I started Natalie’s Facebook page back in January 2013 with the thought that I’d be able to not only keep friends and family up to date on her progress, but that I’d also be able to educate them (and hopefully many others) along the way. The more and more that I learned about childhood cancer and its lack of funding for research, the more I desperately wanted to pass this vital information on. It didn’t take me long to realize what was well received on Natalie’s page and what wasn’t. For example, the more truthful I was in regards to the harsh realities of childhood cancer, the less “likes”, comments, and overall views that I received, not to mention the more page

UN-likes that I noticed. I understand that generally speaking, people don’t tend to “like” upsetting posts…but I’m referring to any real interaction at all with the message (having a public page allows you to see detailed stats). Anyway, I quickly recognized that I needed to tap into my editorial background and carefully balance the information that I was sharing on Natalie’s page. I discovered that about once a week or so it’s okay to inform people when yet another beautiful, innocent child dies from their cancer, but the post to follow needs to reflect hope in one way or another. Too many negative posts in a row and your audience will decide to get up early and leave. I know what many of you are thinking, well then who gives a shit, screw them…as they say, if you can’t stand the heat, then get out of the kitchen. While I think in most cases that euphemism makes perfect sense, to me personally I don’t feel as if it works in this particular case. If I scare too many of the customers away from my kitchen, then who besides myself and my coworkers am I left to serve? What good does it do if amongst the childhood cancer community we’re only talking to ourselves?

You see I need you all, to listen, to like my posts, to share things…we all need YOU. And whether you want to believe it or not, YOU need us too.   Keep in mind that as of August 15th 2012 I had a seemingly healthy child too, as did my 40,000+ fellow parents whose children are currently in treatment today…that is until we all discovered that our “healthy” child had cancer. What you all need to keep in mind is that we’re not “talking” to hear ourselves speak, we’re not after those “likes” because we want to win some non-existent popularity contest, we’re doing this not only for the sake of our own child, and the children currently fighting, but for all of YOURS, not to mention your grandchildren, your nieces, your nephews, your best friend’s kid…you get what I’m saying. So you see, if I’m ever going to get through to you, and hopefully thousands more (eventually), I can’t lose your attention. So, I will continue to balance Natalie’s page to the best of my ability with the hopeful, the bad and the ugly…and all that I can long for is that you’ll keep listening, learning and sharing these truths with your own friends and family with the hope that enough people will stand with us in our fight resulting in a unified demand for more funding in the childhood cancer research division. There HAS to be a better way of fighting childhood cancer then saturating our children’s small bodies with life-threatening poison and radiation…not to mention all of the children who require having limbs removed for the sake of their survival.

While it’s important to not scare the non-cancer parents/people away from the ugly truths that is childhood cancer…I also can’t be too optimistic about it all either or I’ll upset/insult my fellow cancer parents. For those of you who don’t know what I’m talking about when I say this…I’m referring to the annoyance that many of us cancer parents feel when we see someone or a group, etc. making too light of childhood cancer and all that our children go through. Many, myself included, will use the example of how childhood cancer is much more then the cute, beautiful, little bald seemingly happy kids that you see in a St. Jude’s commercial (and that is NOT a stab at St. Jude’s or those amazing kids in any way, shape or form). We cancer parents often discuss how we feel that by marketing to the masses with the smiley bald head, it’s not only doing our children a horrible injustice in regards to the true suffrage that our kids feel during treatment, and to the children who die, but that also this positive spin feeds into the general publics perception that childhood cancer is not that bad…that it must have come a long way with treatments (even though it hasn’t). Trust me I GET these thoughts as I’ve discussed and felt them myself hundreds of times myself…I GET IT!

But on the flip side, look how successful St. Jude’s is at securing the annual funds that they need in order to keep their amazing research hospital going. Clearly going the more delicate angle is working…as they say, you catch more flies with honey. If they showed only the hard to look at imagery, the hopeless sad side that we often feel and see in this community, then how much do you think would really end up getting raised, how many people would really want to help? I’ve had many people flat out tell me that if something’s too heavy, then they will change the channel, or they’ll scroll quickly past the post. So there’s something to be said about taking the more approachable angle. I’m not advocating that on a regular, everyday basis we should all be positive and upbeat when discussing or sharing any of the childhood cancer issues, OR that we shouldn’t share those more difficult images + videos (they have their importance and impact too)…I’m merely saying that I understand the need of BALANCING the hard truth with HOPE, I’ve certainly done it with my own photos of Natalie. We need to first engage new people, bring them into our world…THEN once they’re there, little by little they WILL see and learn the truth for themselves. They’ll know more about childhood cancer then they ever cared to know…but the difference is, that they won’t change that channel immediately because they didn’t even realize that they’ve been watching and listening (does that make sense). Maybe I see things this way because I’m fortunate enough to be able to say that my child is surviving cancer…or maybe it’s because in comparison to the suffrage that I’ve seen some of these other kids (and their parents) go through, again and again and again…Natalie’s experience can’t be compared.   Ahh, there it is…my survivors guilt rears its ugly head again, but that’s another post for another day (coming soon to my blog near you).

Okay, so at this point you must be wondering where the hell I am going with all of this talk about balancing! Well here it is. Very recently there was a media outlet released covering a small glimpse into what it was like for all of us during Natalie’s fight against her cancer (high-risk acute lymphoblastic leukemia). When I originally decided to write you all today, I had every intention of sharing this particular story that I’m referring to…however after speaking to some close friends whose opinions I regard highly, I decided not to. Instead I want people to come across this piece organically and with an open, untainted mind…this way they can react, feel, and form an opinion all on their own. So far the reviews have been mostly positive…I’ve had people reach out to let me know how moved they were (all from the parents of healthy children), and I’ve had the opposite reaction from some of my own childhood cancer community parents. While the idea of letting my fellow cancer parents down really bothered me at first, my mother always taught me that you will NEVER please everyone, so don’t waste your time and energy trying to do the impossible…also, things in life may not always come out the way you expected them too, well so what…make the most out of any opportunity and keep moving forward. Anyway, once I pushed past that initial disappointment of feeling as though I had let some people down, what really started to bother me more was the simple fact that something meant to help the childhood cancer community, and something that had derived from genuine, caring people was being used to instill a negative light (and by the very people whose side that I am on).

Some of my fellow childhood cancer parents saw the piece and were angry calling it all fluff (exactly what our community tends to hate). The thing is, I saw where they were coming from…but as I thought more about it, and as MANY people reminded even me, this piece isn’t meant for the parents of childhood cancer patients…we don’t have to be made aware…we are already WELL AWARE. It’s for people who are NOT in the childhood cancer community directly…they are the ones that we are trying so desperately to reach. At any rate, some of these people shared their knee-jerk reactions by making comments such as “well she only has leukemia” as if to say leukemia is not so bad. This in turn angered some of the parents of leukemia children…remember, that while ALL leukemia is the one childhood cancer that researchers know the most about, and it does have an 80% survival rate (unlike other childhood cancers)…there are still 20% of children battling ALL who experience significant complications, and who WILL NOT survive their leukemia…not to mention that there are many different forms of leukemia, one being AML (acute myeloid leukemia) which researchers still no very LITTLE about, therefore that 80% survival rate excludes those children entirely. So please, before you dive in with your opinion, think about the power of your words and how they may deeply hurt another mother or father feeling your exact pain (or maybe even the ultimate pain of having lost their child)…and remember, WE ARE ALL ON THE SAME TEAM regardless of strategy! My child is a survivor (in November officially), and yet every time this is applauded I graciously say thank you before diving into my usual dialogue about just how many children and their families do NOT share our same fortune.

Anyway (don’t worry I’m wrapping this up), the real issue at hand here is the fact that I’m having to talk about balancing the education of childhood cancer at all! Why the hell do I (or any other parent in this community) have to continuously walk on eggshells when talking about childhood cancer? Why is it that I feel as though I am constantly having to sell this pertinent, life saving information? Why is it still more or less taboo to talk about and discuss childhood cancer? Of course I already know these answers actually, it’s because people are scared, they don’t want to think for a second that it might happen to their child. Well guess what, you should be scared…childhood cancer is the NUMBER ONE disease killer of our kids and guess what else? It spares NO age (clearly), region or ethnicity, and researchers still don’t know the main cause of most childhood cancers. I hate that I have to be a damn gymnast when I can’t even touch my toes…balance, balance, balance, it’s mentally exhausting in all honesty. However at the end of the day, if I have to upset a few people here and there in order to secure 1000 new voices for our kids, then I’ll do it because at the end of the day I know that WE are all fighting for the same thing…and even though I truly believe that we are stronger in numbers, if some of us need to divide and meet at the end to conquer childhood cancer, then I’ll happily see you there.

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