Thursday, September 25, 2014

Long Beach Sand in Our Shoes

Living in a beachfront community, there is a common phrase, "I've got sand in my shoes."  It's more than a literal reference to the actual sand that is in your shoes more often than not.  It is representative of the beach being part of you - going with you wherever you go.

Our family has Long Beach sand in our shoes, and we always will.  No matter where life takes us.

When Ty was home on hospice care, some great friends from Long Beach were coming up for a visit and Lou asked them to bring a bottle of water from the ocean, and a jar of sand from the beach.  He kept it in his closet.  I didn't know why.

When we laid Ty in his casket, he was dressed in a white three-piece suit, and a blue handkerchief - his hair was perfect, his feet were bare.  Then Lou pulled out the box from his closet.  He poured the sand over Ty's bare feet, followed by the ocean water.  We believed he was free to go back to the beach, and we found peace knowing he was going to rest with Long Beach sand between his toes.


When we visited his statue after the Luau, I was prompted to photograph the beautiful seashells and lollipops that were left by his feet.  Thank you to all of our incredible friends who paid him an unprompted visit that day.  The way you remember him is what allows Lou and I to continue putting one foot in front of the other.  When I saw the sand between "his" toes, I was immediately reminded of his beautiful feet covered in sand and surf the very last time I kissed them goodbye.  Reliving that day is raw and painful, balanced by beauty and serenity.  I love that we were able to create this statue in his memory.  I love that he will always have Long Beach sand in his shoes. 


I took a walk around the neighborhood today and I became an emotional wreck after just one song on Pandora.  Sadly, I don't listen to much music since losing Ty - not even in the car - because every song, no matter how relevant or irrelevant, seems to trigger some kind of memories of Ty and I end up with tears in my eyes.  The song "Home" by Phillip Phillips doesn't have much significance other than the fact that it was wildly popular around the time Ty died, so when it came on this morning it triggered memories of driving in the car with Mely - heading to the TLC office after he passed away; then rewind to the day he died; relive the exact moment (which, by the way, happens all the time).  Then something happened that has never happened before....

There is a very light and beautiful harmony in that song.  A chorus where back-up singers are making lovely sounds, and all of a sudden I imagined Ty flying.  Soaring through the air with wind in his hair and OMG how he was laughing.  He would turn to look at me as if I was flying right next to him, and then turn sideways and tuck in his knees for a back-flip before zipping upwards into the sky.  Like he was Peter Pan! This vision felt so real, it was as if he was truly home.  That he was free and he was happy and he was not alone.  

I bawled.  I cried and I cried and I wished I had better prepared him to leave.  I thought about how I held onto hope until the very end because I just didn't want to let him go.  I feared that my barely five-year-old son was hanging on to his own painful life simply out of fear because he didn't want to leave me and Lou.  I always worry about him walking into Heaven alone.  I always wonder who was there to meet him?  If it was Granny, how would he even recognize her?  But then there he was, flying.  Like a little boy fulfilling his wildest dream.  His face, his smile, was that of a child who doesn't know pain anymore - like he never knew it at all,  

So, I leave you with that tonight.  I lost my son, the love of my life.  I am left here to be sad and that's okay, because he is soaring across the sky.  He is Peter Pan.  Maybe they all are.  Even Granny :)




Sunday, September 21, 2014

Nothing gold can stay

Nature’s first green is gold,
Her hardest hue to hold.
Her early leaf’s a flower;
But only so an hour.
Then leaf subsides to leaf.
So Eden sank to grief,
So dawn goes down to day.
Nothing gold can stay.
- Robert Frost

I don't think there could be a better color to represent childhood cancer.  Children, in all of their beauty, purity and innocence, are truly golden.  When a poor child is diagnosed with cancer, he or she is immediately robbed of this, while forced to face pain, fear and realities that grown men and women can barely even cope with.

When Gavin bumps his head badly, or skins his knee, or gets a shot at the doctor's office - I coddle him and I try to comfort him with every remedy possible.  Yet, in my mind I know what real pain looks like to a five year old.  I think to myself "sweet little man, you have no idea, thank God"  And for that, I am grateful.  He is still gold and I want him to hold onto that for as long as he possibly can. I want him to be a carefree kid and have incredible memories from his childhood.  I hope Lou and I find ways to create those for him.  Muddy Puddles!!

When I review the stats, I am in as much shock today as I was the moment I first became aware myself.  Ty was diagnosed in August 2010, and it wasn't until we checked into the clinic at Sloan Kettering that September that I saw my first gold ribbon.  It wasn't until then, that I was prompted to investigate more about childhood cancer in general because I had otherwise been focused solely on Ty's diagnosis.  It didn't occur to me that childhood cancer might be as common as it is; yet brushed under the rug time and time again when it comes to funding the research needed to advance toward a cure.

  • Cancer is the #1 disease killer among children in the US
  • Every three minutes, a child is diagnosed with cancer
  • One out of five children diagnosed with cancer in the US will die
  • Less than 4% of the government funds allocated to cancer research are put toward researching childhood cancers
  • Childhood cancer is under prioritized and grossly underfunded (which is why private, community non-profits like the TLC Foundation are so important to supplement that funding)
  • 9 out of 10 researchers agree that the lack of funding is the top barrier preventing them from finding treatments and cures for childhood cancer
  • The majority of childhood cancer survivors live with long-term effects post-treatment, many of which are life-threatening

And the list goes on and on.  This is why awareness is so important.  Awareness drives people to take action, and results in better funding for research.

This year, I am so happy to say that I have seen a huge positive shift.  I have seen various go gold initiatives making headway across uncharted territory.  I see more and more people sharing the facts and supporting the cause.  Even those are not forced into the world of childhood cancer due to a diagnosis, but who want to make a difference on behalf of all these kids even when the easier option is to look away.  It's beautiful.  The ripple effect makes me feel light and giddy and full of hope - as if I'm being doused with gold glitter, showering in the sparkle of it all.  Thank you so much for your beautiful support.

Over the weekend we hosted a beautiful beachfront fundraising event.  The Long Beach Luau was nothing short of perfect.  Before the start of the day, some incredible friends stopped by to put blue leis on Ty's statue - and when I returned there after the event he also had beautiful seashells and lollipops at his feet.  It was a celebration filled with nothing but fun, yet friends went out of their way to show us that they will always remember the real reason behind the day.  The little boy who inspired it all.  Look at those blue skies behind him.  It was the most breathtakingly beautiful day.



Ty worked a lot of magic that day, not the least of which was the weather.  We could not have wished for a more perfect day.  I believe some of the raffle winners were hand-picked by my angel, like the little girl who was in remission for Leukemia and dreaming of winning the American Girl doll raffle - you had to see her face when she won.  Or our friend who lost her bike to Hurricane Sandy and was saving up for a new one - she won the beach cruisers. At the close of the event the DJ played the same Hawaiian song that I made Ty's video to, and it almost brought me to my knees.  Thankfully, I held myself together and remembered that this was not going to end sad.  It was an amazing day.

We raised more than $10,000 for childhood cancer research in five hours.  It will never get old.  I will always find peace doing this for the next Ty Louis Campbell and keeping Ty's memory alive while doing so.  I am filled with such resolve, and such tremendous gratitude for another amazing day surrounded by incredible people.  Thank you.

I will follow up with loads of Luau photos over the next few days, and updates on Gavin.  Kindergarten life!  In the meantime, I want to leave you with this photo of Amelia.  She is pretty incredible.  Gold is beautiful.  Go Gold for Amelia, and always #SuperTy.



Sunday, September 7, 2014

GOING GOLD and The Long Beach Luau

The Long Beach Luau is less than two weeks away.  We hope you will get your tickets!  Finally, the TLC Foundation is bringing an annual fundraising event to Long Island.  It will be fun for the entire family.  A wonderful way to say goodbye to summer.

Thank you, Brother Jimmy's and The Sands, for hosting this incredible beachfront event.  The food will be amazing, as will the entertainment.  Please join us.

GET TICKETS HERE:  www.tylouisluau.eventbrite.com


In the meantime, September is in full swing and we couldn't be more excited about the incredible campaigns taking place.  This weekend, alone, the adorable Bella hosted a lemonade stand for the TLC Foundation during Pawling's neighborhood tag sale, and the Westlake Wildcats went gold for the second year in a row (check out those socks and bows)!  Arlington High School will be wearing gold shoelaces, and Carmel High School is dedicating September fundraising efforts in support of TLC.  And the list goes on...

You can get gold shoelaces and other SuperTy gear at the PRET*TY store at 30% off for the entire month of September.  http://prettystore.storenvy.com/  Enter promo code GoGold at checkout.

We are just so grateful.  All of these kids should be very proud of themselves for getting behind such an important cause and for making a difference!










Monday, September 1, 2014

Thank you, Empire State Building


“Thank you, Empire State Building. Your refusal to support the childhood cancer community has only created a firestorm of support.  The kind of support we have been rallying for over decades!  Your grossly insensitive decision, and the following bad press that accompanied it, has only helped our cause and raised childhood cancer awareness across our beloved city and beyond.  So, for that and only that, I thank you. 

For anyone who doesn't understand where this message stems from, let me back up a bit.  September is childhood cancer awareness month, and the awareness movement is represented by a gold ribbon.  This is my son, Ty.  He died of cancer 13 days after his fifth birthday.  He was the one, out of every 300 children, who was suddenly and inexplicably diagnosed with cancer.  He deserves your attention and support.  They all do.   



Over the past five years, I have watched a lot of failed awareness efforts unfold across the childhood cancer community. It seems the awareness efforts spread across the group of existing parent advocates who are already all-too aware of the realities of childhood cancer, but rarely reaches far beyond that audience.  I have read the long and tired debate over whether or not awareness is effective if it doesn’t result in action.  The bottom line, in my humble opinion, is that if new people become increasingly aware, many of them will be moved into action.  They will commit to donating, or doing something for the cause.  Can you imagine the increase in fundraising success that the breast cancer community has seen since the world started going Pink in October (and beyond)? 

Or consider the ALS Bucket Challenge.  Most people who participated also took the time to learn about this heartbreaking disease, and make a donation as well.  Last time I checked, they raised $14 Million as a result!  Yes, I think it’s fair to say that awareness results in action.  It is not a wasted effort – it is an important one. 

Inspired by the movement that turned the White House pink among hundreds of other renowned landmarks, the childhood cancer community has tried to emulate that success by asking those same buildings to go gold in September.  A petition was successfully submitted to the White House with the required 50,000 signatures in 2012, but it was later denied.  The Empire State Building has said “no” as well, for years on end… but this year, that denial has ignited a fire among us. 

A grieving dad named Tony Stoddard made it his promise to his son Cole to turn the world gold and raise awareness in his memory – and he has made a great impact so far.  This year, Tony made a formal request to the Empire State Building that was recently denied.  When he shared that denial with his followers on social media, dozens and dozens of other parents and non-profits have come forward stating that they, too, had made the request of the Empire State Building and received the same letter over the years (in fact, one of our board members at the TLC Foundation filled out the application and received a letter of denial last February).  Little did we know that the owners of the building were so adamant about NOT going gold for our kids – until we started sharing our collective experiences and hitting social media with the hashtag #empiregogold. 

As a parent who lost a child to cancer, I can’t tell you how deeply insulted and appalled I am.  For years we have been trying to make a difference in September, and the Empire State Building’s refusal to go gold is perfectly representative of the countless roadblocks we face every step of the way.  It’s confusing and hurtful.  How can anyone come up with a good and just reason NOT to support childhood cancer awareness?  It’s mind boggling!  We are talking about children.  With cancer.  Kids.  Babies.  Teenagers.  I just can’t wrap my head around it.  Who is the person behind the anonymity of a computer screen who deleted photo after photo after photo from the Empire State Building’s Facebook page?  How did that person look Sweet Sally Sunshine in the face, and hit the delete button?


On the flip side, as a PR professional, I also recognize that they unintentionally did us a favor.  For the first time since I, myself, became “aware” in the worst way possible – I am seeing the community join hands in a polite, unified protest.  We are demanding an explanation and leveraging the media as a collective group, and it has been incredibly successful.  I am so proud of the parents who have bravely spoken out in front of the camera.  They are reaching an entirely new audience and turning something terrible into something terrific.  What has happened next is a dream come true.


  • Times Square – the crossroads of the world – is going gold on September2
  • One World Trade Center – the tallest building in the Western Hemisphere– is going gold
  • The Helmsley Building will be lit gold in September
  • The Coney Island Parachute Drop, a historical NYC landmark – is going gold Sept. 5
  • The City of Yonkers (Town Hall) will be gold this September
  • Staten Island Hilton is going gold
  • Bay Ridge Brooklyn is going gold
  • The Mid-Hudson Bridge will again glow in beautiful gold
  • Theodore Roosevelt Executive Building in Nassau County is going gold
  • The New York Stock Exchange’s closing bell rang for pediatric cancer awareness
  • The New York Giants have gotten behind the effort (specifically, Mark Herzlich and Tom Coughlin) and will be supporting the go gold movement]
  • Kennedy Square in Long Beach, NY, will be lit up gold

And this is only some of the lightings announced for New York State.  There are many other gold lightings planned across the country and around the world!  This is an incredibly positive movement.  I am proud.  For the first time, I am excited for September rather than disheartened.  I do believe we are on our way to turning the world gold :)

******************************************************************************

Riding the coattails of the ice bucket challenge, I have also seen dozens of adorable new campaigns follow suit in support of childhood cancer awareness for September, and I will support each and every one.  Please check them out and participate where you can throughout the month.

#goldselfie, so fun. 
#gogoldchallenge, learn the facts
#youvebeengolded, a fun version of “ring and run,” leaving behind a gold ribbon to display on the front door
#whippingchildhoodcancer, take a pie in the face and make a donation
#goldmaniCURE, get a gold manicure and post a picture
#beboldgogold, asks you to talk to others about childhood cancer

This September, won’t you please go gold for our kids?  XOXO.  Thank you for your continued love and support.