Friday, June 13, 2014

Events!

Gavin is growing up so fast.  I just got his class picture and I was really surprised at how much he's grown.  I guess I should just get used to this, it happens every year :)


He continues to keep me laughing, even when he is most inappropriate.  The other day I put short ribs in the slow cooker so they would be ready when we all got home from school/work and when we walked into the house (obviously it smelled like dinner) Gavin said, "ewww!  Smells like FAWTS! (farts)  I am NOT eating THAT!"  Thank you, Gavin.  What a lovely response to my cooking, per usual.

I could tell stories like that for days, but that is not why I am posting today :)  As promised, pasted below is the latest newsletter from the TLC Foundation with tons of information on our upcoming events.  Don't forget that today (Friday) is the LAST DAY to purchase Mess Fest tickets at the Early Bird rate - prices go up tomorrow. And for anyone on Long Island, remember tonight is the night that California Pizza Kitchen is donating 20% of sales (westbury location) to TLC.  So bring the flyer and skip cooking tonight!

THE MUDDY PUDDLES MESS FEST 2014 - Saturday, August 9

Get ready for Mess Fest 2014!  We hope you will you join us at Kiwi Country Day Camp for another wild day of messy, outrageous, non-stop fun and entertainment. All proceeds benefit the Ty Louis Campbell Foundation for childhood cancer research.

Here is just a small sampling of what we have planned: The giant mud pit, treasure hunts on the beach, exotic animals, magic shows, water balloon tosses, zip lines, bounce houses, obstacle courses, carnival rides, games & prizes, pony rides, climbing walls, batting cages, arts & crafts galore, balloon animals, face painting, swimming (4 pools and a lake), boating, whipped cream pie tosses, live music, professional dancers, food fights and much, much more!

We are very prepared for another whopping crowd in the thousands this year.  We added multiple activities, we increased parking, we reserved large shuttle buses and we increased our staff to ensure nothing but pure, family fun.

DO THE DIRTY DUNK!  In addition, we added a terrific FUNdraising component for all ages to get involved in directly supporting childhood cancer research.   We will award FREE ADMISSION to each participant who signs up for the Dirty Dunk.  There is a minimum fundraising requirement of $100 per individual (for example, if your entire family of 4 creates a team, set your goal at $400).  At the Mess Fest, we reserved 1PM – 2PM for all participants to jump in the mud, and our professional photographers will be on-hand to award you with a great photo!  Sign-up is easy: (1) visit www.crowdrise.com/dirtydunk, (2) click on tab that says "the team," (3) click on "join the team," and (4) customize your page and start fundraising!!

DISCOUNTED EARLY BIRD TICKETS AVAILABLE.  Mess Fest ticket prices will go up on June 13, so get your tickets today and save!  www.messfest2014.eventbrite.com.

PLEASE NOTE:
* all parking is off-site in designated parking lots, with shuttle service to event site
* no coolers
* be prepared with swimsuits and change of clothes

If you wish to volunteer at the event, email jbianco@superty.org

***For more information about Kiwi Country Day Camp, email info@campkiwi.com***


ARCHITECTURE TOUR – FRANK LLOYD WRIGHT -- August 23

The Massaro Family has graciously announced an upcoming fundraiser for which they will open their doors to their privately-owned residence inspired by designs of world-renowned architect Frank Lloyd Wright.  Aptly known as “The Massaro House,” the residence was constructed on the heart-shaped Petra Island and shares acreage with “Chahroudi cottage,” the original structure designed and built by Wright in 1951.  Both structures will be open for touring, with registration fees of $100 per individual benefiting the Ty Louis Campbell Foundation for childhood cancer research.

All tours will be taken by boat to access the island.  Not handicapped accessible.

Located just 45 minutes North of NYC, the island is readily accessible by train.  Visit www.petraisland.eventbrite.com for more information.


TYATHLON 2014, LAKE MAHOPAC, NY - Sept. 27, 2014

It's time to start training for our second annual Mahopac TYathlon. Sign up for the Triathlon or the 5K walk/run and your registration fees will directly support childhood cancer research.  CLICK HERE to register.

If you have ever dabbled with the idea of competing in a triathlon, this is the PERFECT race to help you get your feet wet (literally).  It is a Sprint Triathlon, amounting to ¼ mile swim, 10.5 miles on the bike, and a 3.1 mile run.  Relay options are also available (if you wish to pull together a team of 3, each of you can take on one leg of the race).

The 5K walk/run is the perfect alternative for those who look forward to a morning of lighter athletics for a great cause. All of which takes place around scenic lake Mahopac during the most beautiful time of year.

If you are interested in joining our fundraising team – Team Ty – please email dfossati@superty.org.  All Team Ty members get an exclusive race shirt.  Minimum fundraising is encouraged ($1,000 per triathlete, $500 for 5K participants). The greatest reward will be completing the race, knowing how much hope you have created through your unwavering fundraising efforts.  They are fighting the greatest battle of their lives, and we can't let them do it alone.


THANK YOU

We can't thank you enough for your support.  As we watch the multitude of school graduations commence across the country, we must remember how many children were robbed of this opportunity due to childhood cancer.  Cancer is the number one cause of death by disease among children.  At the Ty Louis Campbell Foundation, we are committed to funding innovative childhood cancer research so that some day, this will no longer be true.


Tuesday, June 10, 2014

Hoping for a good night's sleep. Missing my Ty.

Insomnia has plagued me for days, and it has to stop tonight.  Already my anxiety is kicking in over trying to calm down enough to have a good night's sleep - what a vicious cycle.

The other day we had a bunch of kids over to play with Gavin.  One inquisitive friend noticed some pictures of Ty and asked "does Gavin have a little brother?"  I have been completely and utterly floored by this question ever since.  It completely took me by surprise that Ty would be mistaken for the younger brother.  That simple question has triggered so many flashbacks of things I haven't remembered in a long time, and I can't seem to make them stop.  Really, really sad memories.

I guess enough time has passed now that as Gavin keeps growing, the reality that Ty never will becomes more and more evident.  Gavin, my baby, is now my big boy.  And Ty, the watchful big brother, is now the younger brother because he doesn't get to grow any older than 5 years, 13 days.

Oddly, I keep having flashbacks to my phone calls to Ty's teacher at Kids by the Sea (Miss Beryl) and to Sissy, his nanny who we loved so, so very much.  I don't remember how I managed to get the words out or what I said to tell them that Ty had a brain tumor, but I do remember that Miss Beryl was literally choking on her response and that Sissy...  Oh, Sissy.  I can't stop replaying her words in my head.
"Not Ty.  It can't be Ty.  Please don't let it be Ty.  Not Ty!  NO!!!"

That was the day my life changed forever and I guess I just keep going back to that place, wishing for a do-over.  I was forced to trade in my simple life to spend what felt like an entire lifetime caring for my precious boy when he was so sick.  As hard as it was, my life was entirely complete during those difficult times.  As long as I had him, I did not want. Now, in the blink of an eye, it's like I woke up to a life I don't even recognize.  I'm mom to a big boy, who's five, and who will graduate preschool on Tuesday. And all I have left of my other son is pictures. How did we get here?  Didn't I take this picture yesterday?  Where did he go?  For real, where is he?
Taken one week before diagnosis.  This kid?  Has a brain tumor? Still, even now, it seems impossible.
Running this non-profit has saved my life, but it also wears me out sometimes.  My heart has been so heavy lately, while my mind is on overdrive planning for upcoming events and new initiatives - like the locket project on PRET*TY.

I friend everyone I find in the childhood cancer community in order to maintain a community of support. On Mother's Day, I witnessed post after post after post about how difficult it is to be a bereaved mom on that day especially, and I was inspired to launch a program in the PRET*TY store that allows a stranger to sponsor a locket for a mother who lost her child. The same locket I wear for Ty. We include a photo of the child and send it to the mom with a note that bears the poem "I carry your heart" by E.E. Cummings, while the donor receives a different card with a photo of the sponsored mom, and a link to a Facebook page or blog where he or she can learn more about the family.  Today, Jen and I were working like crazy to fill a bunch of locket donations, and as I was printing the photos of children who died, and writing the stories about their families, she kept sighing audibly. She said:
"It just takes my breath away, how sad this is.  Do you feel that way, too?"
"No, I don't.  Not the same way.  I live this.  That feeling you have - needing to catch your breath - is a constant for me and all these moms.  I never thought I'd get used to it, but I guess I did."

Then, this morning, this was posted on Facebook and I know we did something good.  In honor of Riley and because of Ty.  These beautiful boys are forever in our hearts, never to be forgotten.


Yes, I am glad I got out of bed this morning and came to this office despite wanting to hide under the covers all day.  It is such a special place and it fixes me.  Magic is happening here!  In fact, every time the UPS guy comes with more packages, I feel like a kid on Christmas.  I swear, this Foundation saved my life.  You all did, with your tremendous support.  Can you believe our Wish List on Amazon is almost completed!  The Mess Fest 2014 is sure to be a HUGE success, thanks to all of the terrific people who are making Ty's dream a reality year over year.  Laura Viceroy, MaryRose Hackett, Melissa Terrazas, Kate McGrath, Donna Tine, Terri Zumato, Michelle Ott, Steven Kelly and many, many more have sent loads of supplies.  We are buried (literally) in boxes filled with your kindness :)  And they just keep coming.

In the past three weeks, the Foundation has:
  • secured a Mess Fest sponsorship from the fabulous Doctor's at TLC Pediatrics for $2,000
  • received a check for over $1,300 from Riley Damiano's Blue Lollipop Project
  • benefited from the second annual "Ty Tuesday" fundraiser in Lynbrook, that totaled more than $2,300 - what an amazing group of kids!
  • announced a generous donation from our friends at Best in Backyards who is allowing us to raffle off a Dream Swing Set valued at $2,500 (winners announced August 9)!
  • visited Mahopac Middle School and met the incredible team of young change makers who launched Muffin Mania Mondays resulting in over $2,000 in donations
  • benefited from the second annual PJ Day fundraiser at Matthew Patterson Elementary School/Carmel that raised more than $1,750 for childhood cancer research in memory of Ty and in honor of three incredible young students who are fighting the fight!
  • received a check for more than $2,500 from Sierra Lily in Poughkeepsie, who chose to donate 5% of their Mother's Day proceeds just because they are awesome
  • attended the Backdraft Motorcycle Club's 2nd annual "Ride for Ty" which raised $1,000
  • attended the first Goals 4 Gold soccer fundraiser in Pawling, that raised $1,000 and brought together a wonderful group of kids - we hope to see this initiative spread across various soccer clubs!
  • announced the "Pizza with Purpose" fundraiser set for this Friday at California Pizza Kitchen, Westbury, NY.  Long Island friends, please print the flyer below and bring it with you!  

And this is only the beginning.  Later this week I will be posting a copy of our June Newsletter that provides more details on three of our biggest upcoming events... (1) Mess Fest, (2) Frank Lloyd Wright Architecture Tour and (3) the TYathlon.  Stay tuned :)