Sunday, July 28, 2013

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. 

13 comments:

  1. Without a doubt you are the strongest woman I know of. Your family is blessed to have you. And so are all the children who will be helped by your fighting spirit.
    Love and prayers always.

    ReplyDelete
  2. Cindy,

    I have just readen on Phoebe Fair a little 4 year old girl with AT/RT that doctors have told their parents she just have from 2-8 weeks left. Her tumor is back, and also a new one on her spine.

    i m so sadddd so sad ...I hope ty welcomes her in heaven .. so unfair this is!!

    ReplyDelete
  3. Cindy please know that with all that you and maany others are doing for the foundation lives WILLl be saved. even if it takes 50 years.. Please don't be discouraged.. :)

    ReplyDelete
  4. You will never forget, Cindy. You will remember every detail until the day you and Ty are together again. Please God, let there be a cure in our lifetime for this horrible disease taking our children, our future.

    ReplyDelete
  5. Ty has made a huge difference in my life and many others. This is how it starts. People care enough about "children" to start something. It hapened with breast cancer. PLEASE SPREAD THE WORD!!

    ReplyDelete
  6. My daughter died of neuroblastoma recently, and I tell my daughter to say "I have a little brother brother that's 7 months old, and a sister that earned her wings" if the "Do you have any siblings" conversation comes up.

    ReplyDelete
  7. I still dont understand how anything happens. I mourn with you.I look at the post with ty and his brother and I just love that those two are so cute. You will never forget anything about Ty. Ever.

    ReplyDelete
  8. Cindy - I think we need to storm Roger Goodall via twitter and push for Gold for football! Gold before pink. Anyone on Twitter or facebook - please request from Roger Goodall, the NFL Commissioner that the players wear gold this September. He had no problem doing it for pink.

    ReplyDelete
  9. I guess the problem is that no one wants to deal with horrible things like childhood cancer. Nobody wants to be reminded that their kids could become sick, too, so it is not on the media. It's a shame because there should be so much more awarenes on this.

    Sending you hugs!

    ReplyDelete
  10. Cindy, I've been reading your blog for so long I feel like I know you and your family. Forgive me if this sounds overly familiar!

    I think you're absolutely right, but here's the thing - families of kids with cancer could be a big boost to the cause, but not all of us know how to get involved. And many of us aren't wealthy, but we do have time, energy, and passion about the issue. You have PR & Marketing experience, and that is awesome. I'm the parent of a pediatric cancer survivor myself. What can I do to help you in this? I would be happy to assist in whatever way you need, because honestly families with kids who are in treatment spend all their energies on dealing with that. I've tried to get involved with the major cancer charities, but the lack of focus on peds cancers in particular made it something of an odd fit. Trying to explain the funding situation to a layperson is like trying to reinvent the wheel over and over and over again.

    I am very thankful that my daughter is no longer in treatment, but I read stories like Ty's and I know that we have such a long, long way to go. I want to do more than pray and cry. If you want more awareness about pediatric cancer I am absolutely in. I just don't really know how to go about that.

    --Jenna Clark
    PS My email is JennaKaliaC at yahoo dot com.

    ReplyDelete
  11. I saw you and Gavin today at Red Rooster. I was holding my son and as we passed he tried to tell Gavin that he was Peter Pan :)
    I just smiled at you but I really wanted to tell you how much Ty has changed my life and not one day goes by that your precious boy isn't on my mind.
    Laura

    ReplyDelete
  12. Wish I lived closer to you, I would love being involved in all you are doing!! I still can't believe Ty died. I just knew he would beat it. He sure gave it one hell of a fight...
    Love and Prayers, Terri Back here in Illinois

    ReplyDelete
  13. Dear Cindy. No one will forget about Ty. He is the only reason my kids are so fascinated with death. I tell them about Ty and they want to learn more about death and heaven. Its so hard to explain to kids. I can't imagine living with that. I really can not understand your horrible pain. But really, how can you forget his little perfect hands or years. They will forever be in your heart. You will never forget any details. Just remember that he was the most perfect little boy in the world. What a sad picture of Gavin and his friends because its certainly missing Ty and Taylor. What a sad world we live in. And we have to live and laugh and go and pretend that everything is okay while 7 kids are dying each day. Wake up world!!! As always I miss you baby boy.

    ReplyDelete