Updates on the Mess Fest - Music, Activities and More!

The Mess Fest is just over a week away, and we are expecting a big turnout.  I just know that Ty would be SO PROUD!  Before he passed away, he wanted a huge carnival party for his fifth birthday.  We bought all of the supplies, but we never had the chance to give him that party.  Well, this is going to be the type of "carnival" that he dreamed of.  A true MESS FEST.  I just can't wait to see so many kids having fun and getting messy in honor of Ty and all the poor kids like him who are robbed of such opportunities due to childhood cancer and other disabilities.  Thank you so much to all of our friends who will be able to attend!  And a special thanks to our friends at Kiwi Country Day Camp for being such a benevolent host. 

The event will have all of the following, and more - so be sure you come prepared for a fun-filled day and bring a swimsuit!

• swimming
• paddle boats
• muddy puddles at the MUD PIT
• arts and crafts (including splatter paint and glitter)
• whipped cream pie tosses
• treasure hunt
• mummy-making competition
• cake walk
• pony rides
• hay rides
• bingo
• magic show
• rescue animal show
• ziplines
• climbing walls
• bounce castles
• batting cages
• t-shirts and raffles for sale
• food fights (and plenty of food for eating)
• beauty tent and tattoos
• balloon animals
• MUSIC and more...

Speaking of music, I want to announce a beautiful little girl named Talia Denis (http://www.taliadenis.com) who will be performing.  Talia is a true talent.  At just 12 years old, she has also proven to have a huge heart by showing how much she supports the cause and the TLC Foundation.  Thank you, Talia!  We can't wait to watch you perform :)

About Talia:
Talia Denis is a rapidly emerging young singer, songwriter from upstate, NY who creates music that is known for being fun and inspirational  Talia has gained notoriety for being the “Real” kid musician. Talia headlined her own northeast US tour in 2012 and will soon be back on the road again supporting her new record.
Recognizing that in today’s world, more than ever before she needs to act as a role model for other young people, Talia’s lyrical content and image show that one does not need provocative lyrics to make great music and to put on fun, exciting shows that move her audience.
Talia's new album will be released near the beginning of September and there is going to be a special gift for all who attend Muddy Puddles Show.
The TLC Foundation is busy planning a great event.  Please spread the word and we hope to see you there!!  All for you, Ty.  I hope you love it because I am pouring my heart and soul into this.  I can just picture you with that great big smile of yours that continues to melt hearts :)

In our backyard, Summer 2012

Team SuperTy Rocks!

So much has been going on.  A lot of it has been normal life and a busy summer, but a lot has also been planning for the big Mess Fest (12 days!) and trying to pull together some ideas for spreading awareness starting September 1 (for pediatric cancer awareness month).  This is why I haven't had the time or the energy to post as often.  I look forward to the day that things resume to a bit more of a normal pace so I'm not so overwhelmed.  Besides, writing is a therapeutic reprieve for me so I am not as mentally healthy lately as I want to be.  I need to feel that "release" when I am able to just throw my thoughts down on virtual paper! 

We had a great turnout for the Miles for Hope 5K to benefit the Children's Brain Tumor Project.  Thank you so much for all those that donated and all of those that ran for Team SuperTy!!  It was truly a great day for a great cause.  Tara and Danielle - I am so sorry we couldn't find you for this picture!  I hope you know how happy I was that you were there!!

Of course, it was incredibly hard to be at this race without Ty, another first, but it was also uplifting to see how many people still came out to honor him and all of cancer's littlest victims. 

Lately I find that watching the news is just so discouraging.  Not only do I hear about things that take place in this world that are beyond horrifying, then there is the blatant sensationalism and commercial focus that is so incredibly unimportant as far as I’m concerned.  What is the deal!?!?

Truth be told, I know the answer to that all too well.  I was a Marketing and PR professional for 15 years before cancer changed the course of my life.  While I truly do understand the value of my profession and I hold the utmost respect for the industry, I am still allowed to be disgusted from time to time.  I just saw a preview for an upcoming segment on overweight pets and how doggie fat camp is all the rage.  Okay, fine, maybe it’s a good thing that pets now have a fat camp alternative to help them back to health (?) – whatever – but where is the news about kids with cancer?  How are we working to get THEM back to health?  Who is reporting about the funding conundrum and the lack of good researchers in a field that offers few accolades or reward?  Who wants to expose the lack of cross-institutional knowledge sharing and the details about where our greatest hospitals are really spending their money?
 
I watched a 3-minute segment this morning on the New Jersey balloon fair, but it was essentially about Kool Aid and how it now comes in easy to use pouches that you can just squeeze into your water bottle.  Oh, and did you know the Kool Aid mascot – the giant pitcher – got a slight makeover after 30 years?  Yes, it looks a tiny bit different, I guess.  Who CARES??  Come on out and do some news coverage at the Muddy Puddles MESS FEST.  That will be a true newsworthy segment.  Come ON!  Makes me crazy.  (On the other hand, I secretly want to shake the hands of the PR professional that secured that segment because I know what a big “win” that was for the client – although they are probably wondering why it was on WPIX instead of Good Morning America.  #neverhappy)  :)

I once dressed like a giant potato on National Television to be with Al Roker for the morning weather segment.  “Spuddy Buddy” (aka Cindy) was there to announce the start of the Idaho potato harvest season.  It’s true   I also walked around Grand Central Station with a “Runny Nose” to get Cold-Eeze on the news during the kickoff of cold season – whatever that means (the “Runny Nose” is a stuffed mascot that was essentially a giant nose with tennis shoes).  This, my friends, gets news coverage.  I could tell funny PR stories for hours, but I digress.  My point is that if I don't see some national news about childhood cancer during the month of September, I will lose my faith in big media!

Friends, Meet SPUDDY BUDDY.  I wasn't kidding, this is real.

On the other hand – I have the greatest respect for WNBC and Tom Llamas in particular, who not only featured Ty’s story several times throughout the course of his treatment, but who also came to pay his respect at Ty’s memorial in Long Beach back in April.  I am also happy to report that the Journal News will be doing a follow-up feature on Ty’s story, and I can’t wait to share it with you all.  Channel 12 News will be sponsoring the Muddy Puddles Mess Fest and we hope all of this can mark the beginning of a wonderful news stream that continues through the month of September and ultimately results in some national media attention!  I may just have to get a group together to "storm the windows" on the morning of September 1.  In PR-talk, that means we show up in matching t-shirts with signs and such to get the attention at the Today Show (outside) and behind the windows at GMA.  Hey, you never know!  Sometimes it works and Al Roker stops to ask you what it's all about!

My great friend told me recently that I was groomed for becoming the founder of a nonprofit organization.  That all those years I invested at various agencies and corporations has provided me with the marketing and PR that is necessary to bring this to the next level.  I hope she is right!  I really like to think she is right.  When she told me that it completely reinvigorated the fire within me to keep on going.  To focus on September being childhood cancer awareness month and to hold hands with all the super parents out there who are doing amazing things to spread awareness.  I hope and pray that this year we will be able to raise our arms in victory for achieving more news coverage, more gold ribbons, more financial supporters and more awareness. 

Childhood cancer is probably one of the saddest things that exists in this world, but I have SO MUCH HOPE for what is on the horizon.  It hurts so much that these potential breakthroughs in immunotherapies, genomics, and targeted delivery of chemotherapy and radiation weren’t available yet to save Ty.  Most aren’t available now, and may not be for years and years.  And it hurts to think there are seven families in the US who are kissing their children goodbye forever today – if only they could have access to these treatments!  But I do believe that children like Ty, five and ten years from now, will have a greater chance at survival because of all the tremendous support we are getting from people like you.  And a greater quality of life during treatment, because what these children endure today is simply unacceptable. 

As I mentioned, yesterday I ran in the annual Miles for Hope 5K to benefit The Children’s Brain Tumor Project.  I was finally able to give Tanner’s Momma a long overdue hug.  I was so happy to have her there, running with team SuperTy in honor of her amazing little boy.  Tanner was the first roommate we ever had at Cohen’s Children’s Hospital, and his beautiful face will forever be etched in my heart.  We talked about how radiation was probably the cruelest treatment of all.  How it was the only thing that gave our boys relief and comfort, made our families feel like we were finally healing, and then how it turned on us and completely betrayed our poor baby boys shortly after – destroying their healthy tissue and robbing them of the gift they were given by ultimately destroying their quality of life more than anything else. 

We have so much hope for targeted delivery of radiation that can kill the cancer cells without destroying the healthy tissue for kids in the future.   We cried over how much we wish these advances were made in time to save OUR boys, and how hard it is to go on without them.   We watched our babies, Gavin and Chase, play together and eat ice cream on the curb.  I imagined Tanner and Ty sitting beside their little brothers and I tried to hear Ty’s infectious giggles among theirs. 

I hope I never forget that beautiful sound.  My greatest fear is that one day I’ll forget the little details, like his fingernails, or the sound of his voice, or his adorable belly button.    Every night I focus on those details before falling asleep to keep it fresh in my mind always, and at times my mind plays evil tricks on me.  In a panic I can’t remember, or I doubt myself, and I have to jump out of bed and watch some videos or look at pictures.  Those are some of my worst nights.  I need to find a picture of his hands, or his "ninnies" or a close-up of his ears - just so I can be sure I remember them exactly.

 

I recently watched a conversation between grieving moms that broached the issue of how to answer the question, “How many children do you have?”  There was so much pain in the answers and comments from all the moms like me.  So much anger, too.  I wanted to jump through the computer and hug them all.  I wanted to tell them that I understand.  Everyone is going to respond to that differently and while it's okay that it upsets us, nobody is to blame.  That one simple question can result in an entire day ruined.  No one asking that question imagines the answer could be one that is filled with so much anguish so we shouldn’t get angry over an everyday question.  We need to come up with a way that works for each of us.  We need to face this most uncomfortable topic with a response that each individual is most comfortable with.  

Whenever it happens to me or Lou, we say that we have two children.  We usually follow-up by saying that our oldest passed away recently, from cancer.  It depends on whether or not we are emotionally “well” enough to handle the potential follow-up questions at that given moment in time.  Sometimes we are doing well and welcome the opportunity to talk about Ty.  Other times, we just don’t want to go there, so we just don’t.  Since thinking about this, I started talking to Gavin about it, too, because I want to make sure he always talks about Ty in the healthiest way possible.

“Gavin, when someone asks you whether you have any brothers or sisters, what do you say?”
Big, awkward smile.  “Um…. I don’t know.” He answered.
“Well, how do you think you should answer that question?”
“I don’t know.”
“What about Ty?  You do have a brother, right?”
“Yes, I have a brother, but he died.”  OMG – My heart fell into my stomach.  It just sounded so horrible that my poor four-year-old had to say such blunt truth. 
“That’s right, that is a good answer, but I have an idea for another way to answer.  How about this.  Yes, I have a brother.  His name is Ty and he is in heaven.”
“Yes!” Gavin said. 

We are practicing that now.  I am happy with that response.  Because I know that is where he really is, and I find comfort in that.  I always want Gavin to remember that Ty may not be here physically, but that being in heaven allows him to still be with us.  I hope he always talks to his brother and seeks guidance from him for the rest of his life, just as I do. 

Choosing to smile through the rest of this painful life

I hate the phone and I hate myself for always scrolling through the countless messages when I should be enjoying my time with Gavin or whoever I’m with. 

Little Henley Bee passed away yesterday morning.  I was on a lunch date with Gavin when I checked my phone and I couldn’t stop myself from crying at the table.  I asked Ty to send her Mommy an entire window full of ladybugs today, like he did for me the day after he died and like my young cousin did for her mommy the day of her funeral.  A friend recently sent me the pages from a memoir she was reading where the author tells the story of her nephew that died at a young age from neuroblastoma.  She said that family gathered and stood paralyzed around the white coffin before he was laid to rest.  Then a swarm of ladybugs flew in and landed on the coffin.  The young children in the family started laughing and jumping around chasing the ladybugs.  “I saw this as a sign from God that he was welcoming Charlie.  And in the smiles of the children, His reminder that life goes on.” 

On Wednesday, Ty was gone nine months.  Nine long, painful, dreadful months.  The same amount of time that I carried him in my belly and the same amount of time that passed when this picture was taken of him at nine months old. 

In these nine months Lou and I have forced so many things that helped us process our grief.  We travel, we spend a lot of time alone together, and we stay up late talking about Ty and all we’ve been through.  We reach out to other parents like us, because really, no one else can understand.  We talk freely and openly about Ty around friends and family so they know it is important.  And we stare in awe at sleeping Gavin, who now holds Ty’s place in our bed.  We are doing okay.  It goes without saying that we miss Ty in everything we do, but we are figuring out how to keep smiling through the pain.  We have stopped fighting the grief and we are learning to live with it instead.  Like an annoying neighbor who just won’t move away, our grief is always lurking, but we choose to ignore it as best we can and try to enjoy ourselves regardless. 

“Happy” will never be the same for me, but it can coexist with the hurt and it can help me smile when remembering my special boy, instead of breaking down into a puddle of tears.  It’s a crooked, broken smile with a sting in the tail, but it is still a genuine smile and I am proud of that.  I feel blessed and lucky that I am learning to live again. 

I have learned that sometimes, happiness is a choice.  I have been smiling a lot lately.  Laughing.  I can even say that I have had fun this summer.  I was thinking about this today, feeling so terribly guilty, and then I started to wonder if I have a choice about being happy.  I feel like sometimes I do, which is an incredible revelation!  Similar to when I am tired and anxious and Gavin is acting off-the-wall, my first reaction is to yell and become frenzied with anger, but I try to stop and remember that he is only four.  That when he has no patience and doesn’t listen to a word I say – to show him more patience so he can learn by example.   When my tears come rolling in I let them, because I want to remember and cry for Ty every day, but instead of stopping and wallowing in it – I allow it to pass and I think about what he would want if he was watching me. 

I think that I am choosing to smile.  I am choosing to LIVE!  Because that is what Ty would want, and what Gavin deserves. 

I am certainly not naive enough to suggest that one’s mental health can be controlled, nor can one’s physical health.  Ty is a very unfortunate example of just how much control we don’t have over our health.  But I will say that I have a new perspective on grief and my mental well being.  I have found – at least for me – that I have the ability to work through the pain and avoid incessant grief by keeping perspective.  Just as much as I can choose to eat healthier and exercise, I am finding ways to cope “healthier.”  And it’s working. 

On a daily basis, we can feed our bodies and our minds in so many ways.  Get off the couch.  If it’s a beautiful day, take a walk around the yard and smell the flowers – literally.  Think about the people in your life and be cognizant of their differences.  Forgive.  It will free your mind.  Put the cookie down, change into your sneakers and go for a run.  OR – eat the cookie that you have been thinking about for days!  Slowly relish in every little bite and remind yourself that it is a reward.  Shake off your anger.  Kill your anxiety by making a cup of tea, and forcing yourself to sit-down and sip it slowly.  Stop checking your phone every minute and enjoy the company you are with or the silence that surrounds you (I have a lot of trouble resisting this one). After it rains, remember to stop on your way to your car and breathe in the magnificent smell of wet grass.   Look up for loved ones lost.  I do this constantly.  I search the sky for Ty.  I don’t always see him, but I do always see something beautiful.  Then there are the times he smacks me in the face with something like his shining star busting through a cloudy night, or the clouds in the shape of a “T” and “Y” like the other night – unbelievable, I know, but it happened.  I couldn’t take a picture because it was dusk but it was clearly there.  Right above my house.  Reminding me that he is always present.  Remember that our children are little sponges, and that fun is contagious so we should all try to have more fun in our everyday lives.
 
Lou and I have noticed that many people we met over the years are very serious around us.  People who don’t know us well are afraid to crack jokes because we might think it inappropriate.  Sometimes we over analyze our own behavior and worry that others think we don’t miss Ty enough because we are laughing, joking around of visibly enjoying ourselves.  I know it’s a foolish idea, but the thought does cross our minds.
 
On the contrary.  Lou and I prefer to make jokes and to laugh in the face of our pain.  So please, feel free to laugh with us!

Gavin is the main thing that keeps laughter alive in this house.  Thank God for him.  I can’t help but think about how much fun he would have with Ty.  Their personalities were so incredibly different, but together they were still two peas in a pod.   We talk about Ty all the time, and I know Gavin wishes he had his brother to play with.  Being stuck at home is always boring and sad, so instead we send him to camp 3 days a week and he is having SUCH a great time.   Always looking at the empty chair at the table while remembering how important it is to keep living for Gavin.  He deserves it. 

 

 

Who do you Stand Up for?

Last night, Lou and I attended the Home Run Derby and proudly stood up for Ty.  Thank you, Stand Up 2 Cancer, for making ground-breaking discoveries in cancer research, and for putting them into the real hands of cancer patients so quickly and with so much promise.  I look forward to the amazing things your Pediatric Dream Team will discover!  The TLC Foundation is so proud to support this organization.

When the entire stadium stood up for a moment of silence, everyone holding up a placard in honor of a loved one, I just couldn't help by cry my eyes out.  It was breathtaking and beautiful and oh so tragic.  I only wish the placards were larger so I could have covered it with names.  Aunt Mary, Aunt Connie, Annemarie M., Bernice F., Bill K., Mike M., Debbie M., Amanda D., Rosemary S., and those are just some of my friends and family who have fought this demon.  Then there are the kids I have met, followed, read about.  Oh my God!  Sadly, there isn't a placard big enough. 

Bryce Harper -- who reminds me of Ty all grown up with his incredible hair :) -- stood up for 12 year old cancer patient Gavin Rupp.  Amazing. 

I am so blessed and lucky to have such wonderful opportunities, and to be able to share these experiences with Lou.  He and I do so much together, and would be lost without one another.  I am so lucky to have him by my side, to catch me when I fall, to embrace me when I feel overwhelmed, and to wipe my tears in a crowded baseball stadium, looking me in the eyes with complete love and understanding.

The mess fest is just weeks away, and September will be here before we know it.  I have been so incredibly busy trying to prepare for both.  I've been writing a LOT, but press materials instead of blog posts.  It is taking a toll, but I hope to have tons of great things to report in upcoming weeks, and ways in which you can all support the cause.  Thank you so much for continuing to care so much, and for honoring Ty.  XOXO. 

Max, Mckenna and Talia Joy

I have been offline for over a week!  Sorry I’ve been so out of touch but it has been so busy - with both work and with the long holiday weekend – I just haven’t been able to write.  Nor have I been inspired to write about anything in particular until today. 

A couple of days ago, I heard the terribly sad news about Talia Joy Castellano.  She probably won’t be with us much longer.  She is a light and a love and a beautiful soul.  She has fought Neuroblastoma for more than six years, and I have been following her fight for years.  She created a You-Tube channel where she bravely sits in front of her web cam and forces viewers to see past her bald head and instead fall in love with her energy, her spirit, her sense of humor and her incredible talent as a make-up artist.  She has been an inspiration to thousands of other young girls fighting cancer, and she even appeared on Ellen with the grace, dignity and maturity of a grown woman.  She is only 13 years old and she isn’t all that much bigger than Gavin as a result of all the treatment she has endured over the past six years.  But her tiny size is irrelevant when considering how incredibly big her heart is.  Where does she fit it all?   Please pray for her. 

You all know that childhood cancer is completely different than adult cancer.  Most often, it cannot be attributed to environmental factors that hurt the body over time.  Nor is it something that tends to “run in the family.”  It happens completely at random and spares no age, race, geography or socioeconomic group.  Most adult cancers occur in the lining of the organs and it can be theorized that toxins are a factor (i.e. the lining of the milk ducts in the breast, the lining of the colon, the lining of the lungs) therefore cancer in adults usually occurs from environmental exposures to these cells over time.  On the contrary, childhood cancers often occur or begin in the stem cells, which are simple cells capable of producing other types of specialized cells that the body needs. A sporadic (occurs by chance) cell change or mutation is usually what causes childhood cancer (ref: cancer.stamford.edu).  Cancer is the devil, regardless of whether the victim is young or old… my only reason for explaining the difference between childhood cancer and adult cancer is to support my battle cry for better research that is specifically geared toward treating children.  To stop using adult hand-me-down treatments at higher doses.  They are very different and should be treated differently. 

My reason for pointing out how random childhood cancer is isn’t to scare you – NOT AT ALL.  It is because I want to make the point that even though it is so random, all the little fighters I have gotten to know are the most beautiful, courageous and inspiring children in the world.  I don’t believe that God “gives you what you can handle,” and I don’t believe for one second that God chooses to give any innocent child cancer.  But I do believe that cancers littlest victims share one very distinct similarity and that is pure beauty.  They are beautiful souls, inside and out, and their eyes show a sense of knowing and maturity that many will never achieve. 

I am not alone in knowing that kids who battle cancer are so incredibly strong and simply better than most, and I am so grateful for the other cancer moms who have found me after learning about Ty.  Mckenna’s mom is one of those wonderful people who I now call my friend (www.mckennaclairefoundation.org).  As is Max’s mom (www.givemaxlove.org). In the midst of their own pain they have reached out to me with kindness, comfort and understanding.  Both families live on the West Coast but I was lucky enough to meet up with Mckenna’s Mom during my recent trip to San Diego.  Mckenna suffered from DIPG – a children’s brain tumor that is always terminal. July is a very difficult time for her family, having lost Mckenna at this time in 2011, and because Mckenna’s birthday is in August, yet her family still hosted an incredible fundraiser for the Mckenna Claire Foundation for childhood cancer research over the holiday weekend, and they had a huge float dedicated to all the cancer warriors – they even included a photo of Ty among all the wonderful fighters honored.  They are just such a wonderful family. 

Then, just last week Max chose to travel to New York City for his Make-a-Wish trip and I had the privilege of finally meeting him and his family and giving them real-life, in-person hugs, as well.  We took the kids to the museum of natural history (where Gavin and Max were instant friends), we enjoyed a wonderful lunch, hit the toy store and then let the kids blow off steam at the playground until dinner time.  It was one of my favorite days in a very long time. 

I fell in love with Max the second I saw his beautiful picture.  Max is just like Ty, so much so that when I finally saw him in person I would tear up often when watching him play and even more so when hearing his voice.  I am so filled with hope for him.  He is living with a brain tumor and he is doing well, thank God.  But for the rest of his life his parents have no choice but to hope and pray for a better, more effective alternative in treatment.  And as they wait, they have to cross their fingers and hope and pray that his tumor otherwise remains stable.  But Max’s Mom and Dad have vowed to do more than sit and wait.  They are passionate about helping other children with cancer, and about raising money for childhood cancer research.  Rather than wait for a doctor to tell them what else they can do in the meantime, they choose to proactively explore alternative options for Max through anti-cancer foods and nutrition, and they openly share what they have learned with other cancer families through their “thrive against cancer” campaign.  They approach their fundraising with collaboration in mind, not competition.  They share my thoughts about having a stronger voice and making a bigger impact if we openly share information and ideas, if we support one another’s initiatives, and if we combine resources and knowledge to help other childhood cancer foundations make the very best decisions when investing.  Max’s mom is one of the “46 Mommas that Shave for the Brave” and I think that is totally badass. 

Max has magic in his eyes and when he speaks to me I can close my eyes and imagine those words are coming out of Ty’s mouth.  Not only does Max look so much like Ty, but to watch another little boy who is living with neurological defects and who DEFIES them without a second thought forces the biggest, most painful and fearful smile across my face.  I smile big because it truly makes me happy to see Max tackle the climbing wall on the playground even though it is so challenging for him and he has to try so hard.  And I hurt because he reminds me of how Ty might still be here overcoming the same challenges if only his cancer didn’t come back so soon.  And I’m paralyzed with fear because I am scared that change isn’t happening fast enough, and the pressure of seeing Max and knowing the sheer uncertainty of his future makes my heart palpitate and my head swim in the helplessness all over again.   Why does research take so long?  And when there are promising medical breakthroughs, why does it take so long to make those options available to families like Max’s?  Something has to change.  My hope prevails!!!! :)

I just have to keep reminding myself that we are not helpless.  And that we are making baby steps every day that I walk into the TLC office.  I am so hopeful knowing that Max’s family and McKenna’s family, among so many other powerhouse families, are joining hands and fighting the fight right alongside one another.   All of you who continue to read this blog and to support Ty’s foundation for so long… I know we ask for a lot from this incredible community and we are just so grateful.  I wrote about Talia and Mckenna tonight to remind you of how tragic this reality is, and I shared Max with you so you can see why our efforts to continue fighting for our children is far from hopeless.  That there are so many children whose lives depend on what we are doing, and we couldn’t do it without your unwavering love and support.   Please continue to support childhood cancer awareness by sharing Ty’s story.  Thank you.