Ty's Story

On October 4, 2007, Ty Louis Campbell came into this world, and our lives changed forever. We never knew love like that before. Then, on August 11, 2010, our lives changed forever again. A mass was found at the base of his skull and Ty was later diagnosed with an extra renal rhabdoid tumor; a very rare and aggressive cancer. Since the diagnosis, we have been flooded with an outpouring of love and prayers. We created this page to keep our friends and family up to date on his progress, and to share our experience with our loved ones. Ty passed away on October 17, 2012, but his legacy lives on. Thank you all for your tremendous support.

Saturday, July 26, 2014

Why We ALWAYS Jump in Muddy Puddles


These are just a tiny fraction of a tiny fraction of the children stricken with cancer who have touched our lives.  Some are survivors, some are currently fighting (and winning!), but most of the children represented here are angels.  Gone too soon.  Never to enjoy the simple pleasures of jumping in muddy puddles and getting messy with finger paint and glitter.  They are the reason why we work so hard to make the Mess Fest so special.  They are the inspiration behind the Muddy Puddles Project - Celebrating kids being kids, in honor of those that can't.

The schedule of activities is truly outrageous (see below).  You will NOT be disappointed!  For those who were able to join us last year, we will have everything you loved, with extended access (no long lines) and so much more.  Everything but food is included with admission, and we hope to see you there.  PLEASE purchase your tickets in advance so we can quickly and effectively shuttle everyone in (there is no on-site parking), we can be better prepared and avoid any lines at check-in, and - most importantly - ensure we don't run out of tickets!  www.messfest2014.eventbrite.com.

There is still time to register for the Dirty Dunk - you will be awarded free admission to Mess Fest for every $100 pledged.  It is a simple fundraiser to get support for jumping in the mud (but, of course, we won't hold you to it if you chicken out!).  Our professional photographers will be there to capture the Dirty Dunk in all it's glory :)  Won't you jump in the mud with me for Ty??
www.crowdrise.com/dirtydunk. Go to the tab "The Team" and click on "Join the Team."

Schedule of Activities
11AM – All Day Activities Begin
Arts and Crafts
Splatter/Finger paint in honor of Princess Warrior Brynlee (Art Tent, AREA 2)
Rainbow Loom against cancer with Learning Express in honor of SuperMax (Art Tent, AREA 2)
Sidewalk Scribbles in memory of Allie (at basketball courts, AREA 6)
Slime Time fun in honor of Gaven (Art Tent, AREA 2)
Food Truck Rodeo in honor of Warrior Wes AREA 1
Sky Rider Zipline in memory of Riley Superhero AREA 3
Amusement Ride/Dixie Swing in memory of Ethan AREA 3
Fire Truck and “Go Gold” Touch-a-Truck in memory of Tanner AREA 6
Mud Pit, Mud Art and Dino Dig in honor of Kai and Ellie AREA 6
Beauty tent/Balloon animals AREA 6
Nail art and hair extensions in memory of Henley Bee
Tattoos and Face painting in memory of Penelope
Swimming pools in memory of Ryan AREA 4
MacaroniKid Bubbles in honor of Sally Sunshine AREA 4
Paddle boats and Kayaks in honor of Erik AREA 4
Bounce Houses by Jumpin' Jakes and Air Pillow in honor of Liam and Baby EJ AREA 3 and AREA 7
Gymnastics hosted by EpicStudios in honor of Chloe AREA 5
TY-Die t-shirts and SuperTy’s Candyland in memory of Ty Louis Campbell AREA 4
Batting Cages in honor of Caleb AREA 2
Climbing Wall in memory Kwesi AREA 5
11:15AM
Pony Rides in honor of Grace until 1:00pm AREA 7
Magic Show in memory of Amazin’ Hazen in the amphitheater – ends 11:45 AREA 6
DJ Charlie B begins AREA 3
12PM
Treasure Hunt in memory of Hazen AREA 5
Live Music Performance by Analise in memory of Zach Sobiek AREA 3
12:15PM
Bingo #1 in memory of SuperTy at the Dance Tent AREA 7
12:30PM
Glitter Bomb/Water Balloon Toss #1 in memory of David AREA 7
Food Fight #1 sponsored by Gallucci’sCatering (under 10 years old) in honor of Mighty Mikey AREA 1
12:45
Q&A with Actress Emily Peachey (The Fault in Our Stars) in memory of Shayla AREA 7
1PM
Dirty Dunk in memory of Ty Louis Campbell AREA 6
Pop Shop (ice cream)and mini-golf sponsored by MCAS Roofing and Contracting in honor of Franky Area 8
Mummy Making Competition in honor of Leslie AREA 7
Hay Rides until 3:30 in honor of Tyson AREA 6
Rescue Animal Presentation in memory of Ben at the Dance Tent AREA 6
Live Music Performance by HaileyKnox in memory of McKenna AREA 3
1:30PM
Whipped Cream Pie Toss (until we run out of pies) in honor of Jared AREA 4
Food Fight #2 in memory of Cole (under 10 years old) AREA 1
1:45PM
Cake Walk #1 in honor of Brooke at the Basketball Court  AREA 6
2PM
Mummy making competition #2 AREA 7
Live Music by Playing with Fire in memory of Rockstar Ronan 2:45  AREA 3
2:30PM
Food Fight #3 (limited to big kids and grown ups) AREA 1
Bingo #2 at the Dance Tent AREA 7
2:45PM
Glitter Bomb/Water Balloon Toss #2 AREA 7
3PM
Cake Walk #2 at the Basketball Court AREA 6
Final performance by Talia Denis in memory of Cashy and SuperTy AREA 3               


After seeing all of this... how can you NOT come, right?  We can't wait to see you there!!                                  

Sunday, July 20, 2014

I promise you, there is something so much more than this...

... And, I am certain it is beautiful.  For those of you that are desperately missing your parent, your child, your loved one; experiencing a wave of grief and despair; I hope this message finds you today. And when I find myself in a place of doubt like I have been for weeks – I hope I can come back here to this place of absolute conviction that I will see my son again.


It has been 21 months since Ty died.  After his loss, I received so many undeniable signs from him.  The ladybug above my head in Vermont in the middle of winter - the one that magically appeared one minute after I shared my ladybug stories with a new friend - was not a coincidence.  I remember at the time I wasn’t even surprised because I was so used to getting such beautiful signs from my special boy.

At the 2013 Mess Fest, there were ladybugs EVERYWHERE!  Hundreds of them!  They were landing in our hair all day.  Again, this was not a coincidence.  The picture my sister took at the Mess Fest that had an enormous orb over Gavin that looked like Ty’s smiling face looking down on him? The time Mely, Lou and I were having a quiet, very, very sad night at home and Ty’s tricycle fell off the shelf in the garage out of nowhere?  The hawk that frequently swoops down right in front of my car windshield before landing on a tree or wire above and watching me as I slow down to make eye contact.  All of these things are not a coincidence.  I feel him on all of these occasions.

But over time, these things occur less and less frequently.  I remember reading somewhere that spirits tend to make their presence known when you need it most, and perhaps this is a reflection on my healing.  That my coping is evolving and I am finding happiness in life again.  But that idea alone has had me so upset lately.  I want to get better, I want to love living again, but I still want to receive these reassuring signs frequently!  I want to know he is always with me.

When we were in Long Beach recently, I took Gavin to play in Magnolia Park.  I sat with Ty’s statue while watching Gavin run around, and I witnessed some nearby children squealing in delight about a couple of ladybugs they found.  My face was practically twitching with jealousy!  I wanted to find the ladybug!  It was meant for me!

This morning Gavin sat on my lap as we both watched TV from "Ty's spot" on the couch.  His absence was so heavy on my mind so I took a break and went outside for a walk in my backyard.  I talked to Ty.  I looked for ladybugs everywhere to no avail - I haven't seen one all summer.  I listened for our woodpecker (another story) but no woodpecker.  I recited “We’re Going on a Bear Hunt” for him as I marched through the yard, just like I used to do when carrying him, and when I was finished I told him how much I needed him and how much I missed him.  I asked him for a sign and at that very moment – I can’t make this stuff up – something significant moved in the flower patch next to me.  A frog?  I don’t know.  I started moving some of the leaves and flowers to see if I could find whatever small creature was there, but I didn’t see anything until something bright red caught my eye.  Right there, sitting on a leaf, was a tiny little ladybug.

Oh, how I cried.  A great, feel good, get-it-all-out cry.  I knew Ty was right there and in between my tears I told him how much I love and miss him over and over again.  I told him how lucky I am to be his Mommy and how incredibly sorry I am that we couldn’t save him.  How sorry I was for his suffering and how sorry I was for being imperfect because he deserved nothing but perfection.  I cried in gratitude for his presence and for the five short years I got to spend with him.  And for the affirmation that he is still with me everywhere I go.  After a minute or so I ran inside to get my camera and when I returned just seconds later, my ladybug was gone.  The fact that she was gone was even better.  A private little message from Ty to me.  I will carry this moment with me with reinforced faith that he is not gone.  That he is still right here.



Over the next couple of days I will post significant updates on TLC events and investments.  In the meantime, if you haven’t gotten your tickets to the Mess Fest yet, PLEASE PURCHASE THEM IN ADVANCE.  I promise you, it will be nothing short of an incredible, magical, magnificent day for the entire family.  Everything is included with admission including swimming pools, boating, ziplines, amusement rides, magic shows, arts & crafts, mini golf, bounce houses, pony rides, touch-a-truck, climbing walls, batting cages, live music, games and prizes and so much more!!  Get tickets here (www.messfest2014.eventbrite.com), or join our team for the Dirty Dunk (www.crowdrise.com/dirtydunk) and fundraise for free admission!  (click on "The Team" then click on "Join the Team" to create your own fundraising page).  

Monday, July 7, 2014

Here's to Mely and Making New Friends!

Every night during prayers, we ask Gavin to tell Ty something about his day.  After the fireworks this weekend (which absolutely TERRIFIED Gavin) he said “Ty, don’t ever go to watch fireworks in heaven.  Because they are sooo scary and you might die.  I mean, die again.  And then you would have to go to Chinese Heaven!  Or, heaven in China.” 

Ty and his friend at the parade in Long Beach 2009

If there is one thing I am most grateful for since my son’s cancer diagnosis (aside from the time I had with my son), it is the people who have entered my life and fallen in love with Ty and our family as a result of following through his journey.  Strangers who have become lifelong friends and family.  Kristi, Kathleen, Donna, Mellissa, Tonya, Diana, Audra, Kristine, Ali, Jennifer, Dana, Susan, and many more – not to mention those from email and Facebook that I have yet to meet in person but with whom I feel I’ve shared a lifetime.  I believe every person who I have connected with so deeply has an inexplicable connection with Ty and we were meant to find each other.

Mely is certainly one of them.  Ty had his very first surgery in September 2010, and after three weeks fighting post-op meningitis, his first chemo in October.  Then his first brain bleed.  Then another infection and so on. By mid-November Ty was still in the hospital and poor Gavin, who was 18 months old at the time, had been passed around like a hot potato – from my sister’s house, to Lou’s sister’s house, to Grandma’s house, to Nana’s house, etc.  We were just beginning to realize how life changing this diagnosis would be (truly), not just due to the fear of an unknown future for our son, but because of how unpredictable life became with every passing day. From that day forward, Ty’s illness would dictate and ultimately define our every-day lives.  We needed someone to live with us who could care for Gavin through all of our emergency trips to the hospital and long stays away from home. 

We were desperate.  We learned about a 21-year-old girl who had been working as an au-pair on Long Island for a couple of months, but she was very unhappy.  She was also desperate, because if she didn’t find another host family to live with she would have to return home to Bosnia.  We made contact, invited her to take the train into Sloan Kettering and to meet with us in a small kitchen area on the 9th floor of the hospital (the most depressing place in the world).  She looked sweet enough and we knew that it takes a special person to be willing to live with a family like ours knowing just how hard it would be.  We said yes, she said yes, and the next thing you know she arrived at our front door at our new house in Pawling a few days later (we hadn’t even unpacked yet).  That was the first time she met Ty and Gavin and she was also greeted by my parents, Lou’s parents, our sisters, brothers, nieces and nephews.  It’s a miracle she didn’t run away screaming!

Mely caring for Ty.  So special.
I have always been in awe of Mely.  I think about what I was doing when I was 21 (how self-absorbed and immature I was) and I can’t help but admire her strength and ambition.  I took the summer off after graduating college and I remember my mom rolling her eyes and saying “every day can’t be a party-go-round, Cindy.”  Meanwhile, here is this beautiful girl who is changing Gavin’s diapers, and helping Ty put the “wub” in our coffee with nothing but patience, kindness and a heart full of love.  She became my most trusted confidant, my little sister, and my shoulder to lean on.  She laid with Ty after he died with pain in her eyes as if she, too, was letting go a piece of herself as she kissed him goodbye over and over and over again. 

She went home to Bosnia after Ty passed away to be with her family and to move on with her life.  Our happy home once filled with laughter was changed forever after losing Ty and then Mely.  Our family of five was suddenly a family of three and we had to learn to begin living with this new normal. 

I’ve written about Mely before and another incredible person who – at the time – was a complete stranger, wanted to bring some sunshine back into our home by sending Mely a ticket back to the States for a visit with us.  Kristi, who is a dedicated childhood cancer advocate, saved her money for months while working at a restaurant in the Hamptons in order to surprise us with one of the greatest gifts imaginable; and last week that gift was fulfilled when I picked up Mely at the airport for a 2-week visit. !!!!!  We are SO HAPPY to have here here!!!!  XOXOXOXOOOOO!!!!!



It wasn’t until the car ride home that I realized just how much time has stood still since Ty died.  Life has been 100% stagnant.  Nothing.  No movement.  No real energy.  Aside from the visible proof that Gavin has grown so much, you would think it was yesterday that I was running my fingers through Ty’s hair.  When Mely opened our storage refrigerator in the basement to help me put away groceries she spotted the Max & Ruby cake from Ty’s 5th birthday and looked at me with tear-filled eyes.  I said, “I know it’s totally weird.  And totally gross.  Who knows what kind of fungus in growing inside that cake but I just can’t bring myself to dispose of it.”  She nodded and said, “It’s not weird.  That is where it should be.”

Any parent in my shoes can understand the fear of forgetting, and the phenomenon of life standing still.  Because it is that impossible to imagine living – moving on – without your child.  The days pass just as quickly, but I don’t seem to feel it happening.  And when I do realize how many months it’s been and how many minutes have passed since I thought of Ty, I start to panic.  I close my eyes to make sure I can remember every detail of his hands, his fingernails, his freckle foot, his belly button, his hair, his smell, his voice, his scars... In fact, Gavin just started watching Max & Ruby DVDs during our long car ride to camp and as I drive down 684 hearing those familiar episodes I pretend it is Ty in the seat behind me and we are heading down to the hospital for our routine oxygen therapy or bloodwork or what-have-you.  In my head I silently recite “I spy with my little eye something…. blue!” as a tribute to those peaceful drives we used to have together. 

So when Mely is in the passenger seat next to me, it feels exactly the same for just a brief moment.  As we drive through Dunkin Donuts for coffee and laugh over something totally immature and silly, it feels as if she never ever left and Ty is still in the back seat laughing along with us.  Until we simultaneously remember he is not and that reality steals back a small piece of our laughter. 

While she is visiting, we wanted to see Kristi and spend time with her family, so we decided to visit with her in West Hampton Beach over 4th of July weekend.  It was such a beautiful and peaceful weekend and we could not have asked for better weather.  We enjoyed time at the beach, at the pool, and fireworks, and we all quickly became lifelong friends. 


 Kristi is a wildly compassionate person with a beautiful family and her friend, Tara, who hosted us, is equally amazing.  Tara and I are one in the same.  As I struggle to keep Ty’s memory alive with Gavin as he grows older and his memory fades; Tara sadly does the same with her two beautiful young girls to remind them of their Daddy after she lost her husband in a car accident 5 years ago.  The girls were just babies and Tara is an incredible Mother and Father under the most difficult and unfair of circumstances.

Life is hard.  This I know.  But there are truly beautiful people in this world, and I thank Ty for helping me find so many of them. 



A month passed since updating here on the blog because we have been so busy, but I have tons and tons to share and will be posting much more often over the next few weeks.  So please check in on us, share, remember Ty, fight for the other children with cancer and sign up for any of our upcoming events.  Our latest and greatest includes the Long Beach Luau scheduled for Saturday, September 20th at the Atlantic Beach Club.  All of our Long Island friends, please check it out and share with friends!  www.tylouisluau.eventbrite.com 

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 :)








Wednesday, May 28, 2014

Everything is bigger in Texas...

... including their hearts!  Back in December 2010, I received a gift in the mail from a stranger in Texas – a Superman Christmas ornament – and it marked the beginning of a great friendship that I will cherish forever.  Kathleen always knows what to say, she never hesitates to reach out to me, and she sends the all-time funniest cards and the most thoughtful gifts I have ever received.  I truly believe she is one of my many gifts from Ty. I am so grateful for her, and so proud that she is an integral part of the TLC Foundation, heading up our Dallas Chapter (you didn't know we had one, did you?).  Last week while we were setting up for her fundraiser, Ty sent a ladybug to show us he was there and he was proud.


Childhood cancer is not contagious if you support the cause.  Getting involved won’t ruin your day or make you sad all the time.  It will empower you!  It will make you feel like you are driving change!!  Kathleen and her husband Rocky understand this.  They look at their three healthy boys with gratitude, and they aren’t afraid to embrace the cause. This year Kathleen recruited an incredible team of friends to host her second annual “Rock for Research” event at Rockhouse Studios, and it was a huge success.  We are so grateful to all of the wonderful people who came out to eat, drink and dance while celebrating progress, honoring Ty, and supporting all children currently battling cancer (and those who will be diagnosed in the future).   

Everyone was so warm and loving, and so passionate about the cause.  It was an incredible night with incredible people.  The auction was a huge success and the music was terrific.  The “Rock for Research” event breathed some new life into me and Lou after a tough couple of months.  It was an amazing little getaway where we were surrounded by wonderful, loving people and where we knew we were raising money to help our mission.  We danced, we drank, we laughed and we felt surrounded by love. 

The TLC Texas Team - we love you!
These days life is just a balance of ups and downs.  I guess it always has been, but since losing Ty and being so intimately familiar with pain and sadness, I feel the “downs” that much more intensely, and consequently the ups are that much more liberating.

I was so tired today.  It was one of those days where I started thinking about bedtime around 3PM and planned on getting to bed as early as possible.  I made a big dinner and packed lunches for tomorrow even though I didn't want to do any of it.  I folded laundry until almost 11 and even though I’ve wanted to write for days upon days, I certainly didn't have the energy tonight.  Not until I walked down the dark hall, last one still awake in this big quiet house, and upon entering my room I felt for one split second that Ty would be there in the bed.  For one sweet second, I forgot he was gone.

I used to always be the last one to bed when Ty was sick.  Lou would bring him to bed and I would enjoy the quiet time on my computer until the late hours of the night when I just couldn’t keep my eyes open anymore.  I guess it felt so similar walking down the hallway tonight that I forgot he was gone for just one tiny fraction of a second; and when I remembered I climbed into bed and could not stop the tears and the sobbing.  I couldn't control it and didn’t want to wake up Lou, so here I am.  Back downstairs, looking at a blurry screen because I still want so badly for it to be true.  A familiar burn in my eyes, and as much as it hurts I don’t ever want it to go away because that would mean more distance between me and my Ty. 

Spring has been painful in the childhood cancer community.  So, so many children I have grown to know and love on social media have died over the past few weeks.  I guess that’s why I have been so quiet on the blog.  What can I say that I haven’t already said?  We are trying so desperately to drive change for these children, but sometimes it feels like we are beating a dead horse!  It’s painful, it’s horrific – but I know it is not hopeless no matter how long this continues.  I simply have to believe that someday we will find new, safer and more effective ways to cure cancer – especially among its youngest, most innocent victims.  After all:
  • 1 in 2 men   
  • 1 in 3 women  
  • 1 in 300 children  

WILL GET CANCER!  1 in 4 people will die of cancer.  How can we ever give up?

Spring has finally sprung here in New York.  I recently watched Gavin blow dandelion wishes and passionately yell “I wish my bru-ver never died!”   My eyes fill with tears as I silently wish for the same.  Watching the hummingbirds out my window and the butterflies in my garden bring me bittersweet happiness.  Life goes on, and it is beautiful, but I will never stop bleeding over his loss. In the wake of my sadness, this guy makes me smile every day.  He is getting so big and he is a constant reminder of how lucky I am. 


There have been incredible breakthroughs in childhood cancer, and of course I am grateful for the progress that has been made – but it is not enough, not even close.  While researchers have made tremendous strides against pediatric acute lymphoblastic leukemia (ALL), raising survival rates from just 4 percent 50 years ago to 94 percent today (thank God!), the deadliest childhood cancers continue to destroy our children and little to no progress has been made over the same 50 years.  Yet, the incidence of these cancers – Brain tumors, Neuroblastoma and Sarcomas – has increased by 29% and continues to affect more and more children as the clock ticks on.    


The keyboard helped me let out some frustration tonight and my sadness has dissipated.  I guess I needed that.  I am ready to go back upstairs, lie in my bed curled up facing the place where Ty should be, and wait for Gavin to join us as he always does.  There are so many exciting things in the works at the Foundation, I just know Ty would be so proud.  And that brings me peace tonight.  Thank you for your continued love and support.  I still believe in miracles.  I hope you do, too.  

THIS FACE!!!