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.

Monday, February 16, 2015

My Valentine from Ty

I'm always a last minute shopper.  I don’t plan ahead well.  And, I am terrible with the Pinterest-type holiday activities.  I can’t make the crafty Valentine’s day cards, or the amazing birthday cupcake tower.  I do my best, but my mom-crafts just don’t pan out the way I plan and Gavin has zero interest in helping so I throw my hands up in defeat. When we bake, he stirs the batter twice before losing interest.  When we make cards for class he starts moaning about signing his name after the first two. 

This year Gavin made me a beautiful craft to put my jewelry in (he couldn't wait to give it to me when he brought it home from school) and a set of family portraits.  They broke my heart into a million pieces because Gavin drew his brother with a sad face when the rest of us were smiling big.  When I asked him why, he said "because Ty has cancer."  I held back the tears and reminded him that even though Ty had cancer, he lived his life with a huge smile on his face.  "Oh," was all he said. 


So, as usual, I didn’t have much of a plan for Valentine’s Day.  The day before Gavin and I went to the local bakery after school where I noticed they were selling giant heart shaped cookies so I bought one for Lou. It occurred to me that I should go to the card store next door for some Valentine’s Day cards.  While I browsed the racks I was reading through a number of cards for Lou and Gavin and none of them seemed right but they were good enough, I guess.  I thought about Ty and how I need to buy him some blue lollipops and his favorite chocolate truffles.  I opened another card and right there…. inside the card!.... was a ladybug alive and well and crawling up and down.  INSIDE THE CARD - can you believe that?  I have said it a million times, I can’t make this stuff up.  I didn’t know what to do so I just closed it gently and returned the card to the rack as I headed to the register for my purchase.  On my way I spotted these socks and decided Ty wanted me to have them as my Valentine’s Day gift from him.  I’ve worn them for two days straight (I’m gross).  I don’t know what I would do without these incredible signs from my boy.  It’s always just so amazing!


Lou bought me beautiful roses, we opened a great bottle of wine with my favorite Manchego cheese and he surprised me with chocolate covered strawberries (he’s much better at this).  I gave him the cookie, but I guess it cracked in transport and he teased me for giving him a broken heart for Valentine’s Day.  He always makes me laugh and I just love him so. 

www.2015sharethelove.eventbrite.com
We have been extremely busy planning for our big Share the Love event at the Grand Hyatt in Greenwich, Conn.  We hope you will join us because this event is going to be truly a great night out.  We have a lot of incredible fun planned for the night, and we are so happy to have our TLC friends Scott Winters there to talk about his involvement in giving spiritual support to victims of cancer, in addition to presenting our first annual “Heart of Gold” award to our amazing friends at Kiwi Country Day Camp for helping us make the Muddy Puddles Mess Fest a reality beyond our wildest dreams. We will have a charitable casino, dinner, dancing, prizes and did I mention any of the outrageous auction items yet?  This is just a small example of some of the things we will have up for auction:
  • A one-year membership to The Hermitage ski and gold club in Vermont (valued at $15,000)
  • An opportunity for your kids to be the ball boys/ball girls for the Brooklyn Nets
  • Tickets to Saturday Night Live, Jingle Ball 2015, Billy Joel, Yankees, Mets, Rangers, Giants (Coaches Club), Phantom of the Opera, Seth Meyers and so much more.
  • Signed Islanders Jersey, Rangers Jersey and Eli Manning Jersey, along with signed Peyton Manning memorabilia and a signed copy of The Fault in our Stars by John Green.
  • Weekend getaways to Killington ski resort and various golf packages.  Gift certificates from my favorite restaurants and stores (like $1,500 at Theory), items from London Jewelers, MAC Cosmetics and Trish McEvoy, Photography and portrait packages, and so much more.  Our friends at Brother Jimmy's donated dinners as well.  It's going to be an incredible night. 
Email us at info@superty.org to inquire about sponsorship or absentee bidding.
CLICK HERE for tickets, CLICK HERE to book a room overnight. 

NONE OF THIS WOULD BE POSSIBLE WITHOUT OUR INCREDIBLE SPONSORS! Why not ask your company to consider sponsorship?  We hope to see you there!

Dibico Construction
NBC-New York
Liveperson.com
Signature Bank


Tuesday, February 3, 2015

Hugging my boys tight tonight

There was a tragic accident on the Metro North Railroad tonight. 

I was riding on the same train line, in the front car, that rode right over the same intersection just 25 minutes beforehand.  I caught the earlier train in a rush to get home to my family. 

A woman in a Jeep drove over the train tracks when the bars were down causing a fiery collision and killing six people including herself - I don't know how many are injured but I can only imagine it was horrific.  The idea of what it must have looked like to be trapped in that train car makes my heart pound outside of my chest.  Sleep is escaping me as my mind races through the scene over and over. 

I can't get the picture of Gavin out of my head.  What would happen to him if I were one of the casualties?  There are children at home right now facing that exact reality and it is such a difficult thought to bear.  Life can be so cruel and unfair.  Just like that, lives are changed forever.

Just the other night I wrote about how I promised Gavin we would die together.  I don't want that, of course, (I hope Gavin lives a long happy life beyond my years) but I have never felt such fear of leaving him here to live his life without me as I did tonight.  His world would be shattered.  His beautiful face would carry nothing but heartache.  I can never ever let that happen!  How can I be sure that it never ever happens?  As much as I couldn't control the cancer for Ty, the reality of an accident any time, any way, is heavy on my mind tonight.  It's just so effing sad. 

At night before falling asleep I always whisper "Good Night, Ty.  I can't wait to see you again."  Because it's true, I really do look forward to the day I die so I can be with him again someday.  But thinking about Gavin here without me is as difficult as thinking about Ty in heaven without me.  Harder even, because life on Earth is so tough and Gavin needs me here so desperately.  At least now, while he is so young and so needy. 

I love both my boys so much it hurts.  I'm heading upstairs to my bedroom to kiss Ty's urn goodnight and watch Gavin as he sleeps while I kiss his chubby little lips and breathe in his sweet breath.  Wish I had them both with me to hug tighter tonight, but I will double up on Gavin so much that Ty will feel the extra snuggles wherever he is. 

Wednesday, January 28, 2015

Bedtime Prayers

Tonight I put Gavin to bed.  99% of the time, that is my husband’s job.  He gets home later from work so it his alone time with Gavin, but tonight he just didn’t get home in time.  Gavin always thinks it’s an open invitation to party if I’m putting him to bed and he just can’t control himself from tossing and turning and TALKING the whole time…

You see, we lay with Gavin every night until he falls asleep.  I know, he is almost six years old, but the habit started when Ty was on hospice care and Gavin just upgraded out of a crib and into a big boy bed.  He was constantly getting up and coming into our room where Ty was sleeping and in pain, so we started lying with Gavin until he fell asleep soundly for the night.  After losing Ty, Gavin took his place in our bed and we don’t mind one bit (except for when his elbow is in my face while Lou and I cling to each side of the bed to accommodate his sprawling position). 

We found ourselves in a routine that works well enough each night, and neither of us want to go through the torture of breaking Gavin of this security.  He falls asleep in his own bed with one of us, we sneak out, then at some point in the middle of the night he climbs in between us to snuggle 'til morning.

For our bedtime routine we read a book, turn on the nightlight and the fan, lay in bed, say our prayers and go to sleep.  When I am with him, he just doesn’t stop asking questions and hugging and kissing me once prayers are over.  I love it so much, but it can make me crazy, too.  The last thing we do is tell Ty something about our day.  

Tonight we prayed for all of our loved ones, and we prayed for a cure for cancer – especially for the children.

“Does that mean Ty will be able to come back to life?”

“No honey, but it means other children like him won’t have to die from cancer.”

“What happens to your body when you die? What does it look like?”

I explained that people die in so many different ways, but no matter what happens their spirit leaves their body and the soul goes to heaven.

“How will I know to go to heaven when I die?  How do dead people know where to find God?”

Duh… I have no idea…

“I’m not sure but I think the other angels and spirits will help you find your way?” (cringing)

“Can you try not to die before me? I want to die at the exact same time as you.  Can we die together?  I would be so scared without you.”

That, Gavin, is exactly what I feared for Ty all those years he was fighting cancer.  It was the first thought I had when the reality of his cancer diagnosis was first explained to me in 2010.  I pictured my curly haired little baby alone in death and scared to let go of my hand.  The idea still haunts me sometimes, even though I am certain he is at peace.  


The only response I could muster was, "Okay."
 





Ty feeding Gavin ice cream.  This was 7 days before his diagnosis.

Baby "GaGa"

Sunday, January 25, 2015

Goonies and a Hockey Game

I started writing this post last Wednesday...

It’s been quiet here at the Campbell house.  We just keep on keeping on.  Life has fallen into a very busy routine and of course part of that routine will always include missing Ty.  Thankfully, "our new normal" (or so they call it) has been pretty normal lately.  After some serious rough spots around the holidays, things have fallen into place and we are doing well. 

On Wednesdays, I work at the TLC Foundation all day until I have to leave to get Gavin off the bus.  It is the only day we don’t have anything to do after school so I like to cook a nice dinner and plan for a movie.   Tonight I went with some of my all-time favorites – fried chicken cutlets with sautéed bacon brussel sprouts, followed by The Goonies

We picked up the movie at the library, which is something I love to do with Gavin.  Of course we have Netflix and it’s easier to point the remote, but I still enjoy the act of going to the library with him.  I love the familiar musty smell upon opening the door.  It feels almost like walking into a vacuum - the silence that hangs in the air almost sucks you in from the cold outside air.  We often pick out a book or two and read together in the children’s section before heading over to the DVDs.  The selection is sparse and dated, but there is something about the tangible DVD case that makes Gavin’s eyes wide.  He loves to look at the pictures, to hold a stack of DVDs and to debate his options out loud as I try to shush him the entire time (“quiet, we are in the library!”).    

I recently decided that I want to introduce Gavin to Star Wars.  It is something I’ve been avoiding for over a year because I know that means a whole new world of toys and lego sets and bedroom decorations that he will be begging for.  But after 3 years of super heroes, I’m ready for a change and so is he.  After consulting with my neighbor, it was decided that we will start on 4, 5 and 6 (the originals) before watching prequels 1, 2 and 3.   I was ready to spend the night on the couch with ice cream and Han Solo, but alas, it wasn’t meant to be.  The collection at the library only included the Ewok Adventure and The Clone Wars.  Sigh. That’s the one downside to the library…

Never fear!  While searching for an alternative, I noticed Goonies on the shelf and gasped with excitement.  Gavin looked at the pictures on the back, saw the pirate ship, and he was hooked.  If I were to pick one movie from my childhood that stands out as a favorite – there is no doubt it would be The Goonies.  It stands alone!  Watching it again for the first time in probably 20 years, I could still recite my favorite parts, and Gavin thought they were as funny as I did.  He especially loved how many times the kids say “oh shit!” with the references to "Boobie" traps coming in a close second.  I swear, I still want to be a Goonie.  Don't you?  

Then on Friday night...

We attended a Trinity Pawling Hockey Night in memory of Ty.  Gavin wore his awesome "SuperTy" hockey shirt, and he threw out the puck.  It couldn't have been more fitting that the students and attendees chose to honor Ty by wearing SuperHero costumes of all sorts, and as a result Mellissa had a great idea that we should push to have "Super Hero" fundraisers in schools across the state!  We often have Pajama Day fundraisers but after seeing all of the great kids in costume - all for Ty - we realized we could do better than that.  Super Heroes for SuperTy and all the super kids fighting cancer today.  It's just such a perfect fit.  What an incredible honor it was.  If you are interested in presenting this concept to your school, club or daycare, please email mdivitto@superty.org.





What a great night, and an even greater group of guys.  When I looked around the hockey rink that night, I saw posters hanging that read "We Love SuperTy" and "All for Ty" and I cried a happy tear.  He is remembered, and I can't tell you how much that means to me.  It's all that matters sometimes.  The only thing that keeps me going.  Because I made a promise to myself that his all-too-short life will have greater purpose.  Thank you all, so much, for helping me make good on that promise.  And to Spencer Strauber, who wrote an article on SuperTy in the school paper, The Phoenix... I hope you continue to write.  You have a powerful written voice, and you will continue to inspire others with your words.  Thank you for taking the time to pay tribute to Ty on a day you didn't have to (headmaster called an impromptu holiday) and thank you for choosing to by-pass Tom Brady and "Deflate Gate" and instead write about my son.  

"Ty not only naturally adopted his admiration for super heroes as a young boy, but little did he know he would become one for the whole community. SuperTy was as super as they come."  

I couldn't agree with you more, Spencer.  Thank you.  



Friday, December 26, 2014

All Things "Crimpy" (Christmas)

Last Friday night, the Ty Louis Campbell Foundation was selected to be a beneficiary of the ERJADT light display in LaGrange, NY.  ERJADT stands for the initials of Tim and Grace Gay’s three children, because their passion for bringing Christmas joy to the community was ignited after their first child was born – and it has grown into something truly incredible over the years.  And by incredible, I mean record-breaking!!  The Gay family home holds the Guinness Book of World Records for the most lights displayed on a residential property.  That’s right (as I told Gavin 100 times while driving through it), they have more Christmas lights than anyone else in the entire world! And believe me, it is something to see.  I couldn’t hold back the tears every time I drove through (which was several times) because I just know how much Ty would have loved every second of it.  In one night, cars driving through were presented with a good old fashion bucket and our best Christmas wishes.  By the end of the night, our donations amounted to way more than a drop in the bucket.  We counted $3,892 – and Mr. Gay wrote a check for $108 the next morning to bring the TLC Foundation to an even $4,000 sweep. WOW!  We are still blown away from the incredible generosity of the Gay family and all of the wonderful people who drove through and made a donation. And to the Divitto's for braving the cold to collect for TLC.  It has completely warmed my heart during this bittersweet time of year.  

I like to think Ty has been spending a LOT of time here this Crimpy season
This is our third Christmas without Ty.  It’s hard to imagine that he was only here with us for 5 of them.  His incredible laughter, contagious smile and vibrant spirit could light up a room.  That special little boy changed the way I look at Christmas forever.  It’s like he opened up the box of Christmas magic.  It’s so incredibly hard without him here.  Hard as Hell… but I am so grateful for the memories, and I truly mean that.  My greatest gift was being his Mama.

Every Christmas with him was pure beauty – even after his cancer diagnosis.  He was only 3 months for his first Christmas, but that didn’t stop us from having several different Christmas outfit changes in one day, and about 15 “Baby’s First Christmas” ornaments adorned the tree.  It was so exciting to finally have a baby in the house on Christmas morning!  The next Christmas he was walking, and on his third Christmas he had his little brother crawling around to celebrate with him. In 2010 we celebrated his first Christmas post-diagnosis knowing that he had 3 new tumors in his spine and would likely lose his battle just weeks later.  BUT HE DIDN’T.  Those tumors (or whatever it was on that MRI) miraculously disappeared and our baby began to thrive in 2011.  By the next Christmas he was scooting across the floor to open present after present – practically back on his feet for the first time in over a year. What a gift from God that was! I never believed in Santa Clause more!

Then, by Christmas 2012 he was gone.  Just GONE.  Where is he?  For real?  I know, I know, his spirit is all around us and Heaven is a wonderous place, but I can't sit here and make pretend it doesn't blow my mind to have my baby here with me one day, and simply gone the next.  Leaving me here to keep putting one foot in front of the other and live this life that has turned out to be very different than what I planned.  I have learned that life is like that.  Plain and simple.  Life is hard and bad things happen to good people and I have no choice but to completely accept that.  Life is also absolutely, breathtakingly, beautiful.  A gift.

I don’t remember a single bit of Christmas 2012.  I don’t even know how we did it – but I guess we had to do it for Gavin.  We had a tree, I suppose.  Bought him gifts.  I don’t remember any of it.  Last year was a little better because Gavin was 4 and really started believing in Santa Claus, but it’s still pretty blurry.  Yesterday morning, was totally great; but I would be lying if I said I was genuinely happy. I can’t ever be 100% happy as long as the weight of his absence is all around us (which it will be forever).  Gavin, on the other hand, was SOOOO happy.  He loved all of his gifts and seemed so surprised by all of the leave-behinds from Santa (including the letter he left by the empty plate of cookies, and the footsteps by the fireplace).  It was so fun to watch him open all of those toys.  As he played quietly in his toy room for hours on end, I couldn't help but try to imagine how much louder it would be if Ty was here to play with him.  There is so much less excitement in the house, it’s hard to explain.  The silence is just another reminder of how things are not as they should be.

I am not trying to sit here and write about the gloom and doom of life.  Not at all, and I hope it doesn't sound that way.  Christmas is my favorite time of year, and I love it still.  I love it for Gavin and I love it for TY!  I make sure he is remembered and I smile real smiles when filling his stocking with blue lollipops and chocolate coins.  I close my eyes, shut out the world, and I hear his voice.  It is beautiful and I know I am blessed.  Not the least of my blessings are the people who have surrounded me during my most difficult days.

That first Christmas with cancer, our life was a complete whirlwind of hospital stays, clinic visits, chemotherapy, at-home care, scans, bad news, more bad news, moving into a new house, frantically rushing off to Disney for our Make-A-Wish trip, welcoming Mely into our family, and relishing in the generosity of friends and strangers who loved us and took care of us in any way they could.  I rarely cooked because meals were constantly delivered to our front door (thank you!).  I was spared having to go shopping during the frantic holidays because our incredible friends in Long Beach sent us boxes and boxes of gifts for Gavin and Ty – already wrapped – and that Christmas morning, Lou and I enjoyed the surprises just as much as the boys did. We didn’t have to decorate our house because when we pulled up to our new house after our Disney trip it was lit up from top to bottom in the most elaborate decorations I’ve ever had (I can’t even begin to tell you how much Ty loved that). PEOPLE ARE AWESOME, RIGHT?  Now that is what Christmas is all about.


This was the first year we had Ty's urn.  It took a long time for the artist to complete it, and he sits on our bedroom dresser - exactly where he belongs.  On a whim, I remembered this tiny hat and scarf that adorned a bottle of wine that was gifted to us last year (thank you, Mellissa!) and I placed it on him.  It's totally silly, I know, and maybe you think it's weird.  All I know is that Ty would have thought this was sooo funny, and that alone makes me incredibly happy.  This is sure to become a tradition of sorts :)  On Christmas morning we visited his statue in Magnolia Park and did the same thing.  Ty, baby, I know you love it!  We do, too...




Merry Christmas friends.  Thank you always for your love and support.  XOXOXO.

Wednesday, December 10, 2014

What's YOUR Muddy Puddle?

My eyes are filled with happy, sad and excited tears.  This is the most beautiful thing I have ever seen.  Thank you, PBS #cancerfilms, for seeing the beauty in the Muddy Puddles Project, and explaining it in the most perfectly simple way I could have ever imagined.  Thank you for making sure Ty was remembered, that his incredible perspective is being shared so widely, and that all children with cancer - all everyone with cancer - are being honored in your work.  Click below and watch the video in full screen.  I bet you can't keep a dry eye, either :)



http://cancerfilms.org/blog/muddy-puddles-of-joy/

“Everybody says to me, ‘I can’t imagine, I don’t know how you could stay so strong.’ The truth is, when you’re faced with a child with cancer, you don’t have a choice.”
Ty Campbell was two and half years old when he was diagnosed with cancer. The diagnosis was a complete shock to his mother and upended the life of a healthy, athletic young boy.
In the midst of his fight against cancer, Cindy asked her son, “What are we going to do when you get all better?” Ty defiantly declared: “I’m going to jump in a muddy puddle.”
Cindy’s story is the latest in a series of intimate video profiles from PBS and Cancer: The Emperor of All Maladies about the impact of cancer on countless individual lives.
You can join the conversation and share your story of how cancer has impacted your life by connecting with us on Facebook and Twitter using #CancerFilm. You can watch more profiles like Cindy’s on The Producers’ Blog.
Video produced by Redglass Pictures for PBS and Cancer: The Emperor of All Maladies.
Thank you, Redglass Pictures.  You all are amazing.

Tuesday, December 2, 2014

TODAY IS #GIVINGTUESDAY!



Now that Black Friday, Small Business Saturday and Cyber Monday have come and gone, we thought it would be appropriate to reach out to friends of the Ty Louis Campbell Foundation with our annual appeal for donations on the day that is now dubbed, Giving Tuesday.
Giving Tuesday is a reminder to make a charitable contribution at the start of the holiday giving season.  Thank you for continuing to support childhood cancer research by donating to the TLC Foundation in memory of Ty and in honor of all children fighting cancer.
We set up a fundraising page specifically for Giving Tuesday with a year-end goal of $10,000.  Last year we far surpassed our goal of $5,000If everyone on this distribution packed a lunch or skipped the Starbucks and instead made a donation, we would reach that goal in no time!  We will be giving out prizes to random donors throughout the day including t-shirts and PRET*TY bracelets!
All donations are tax-deductible.  Be sure to claim your donation if your company has a corporate match program to double the impact of every dollar donated. 

$25: funds a researcher in the lab for one hour - let's keep them working toward a cure
$50: if your company matches 100%, a $50 donation could equate to 4 hours in a lab
$100: helps fund the purchase of innovative lab equipment and technology

TY - Thank you.  In memory of Ty and all of the children who lost their lives to cancer.  In honor of all the littlest fighters who are currently in the trenches of treatment.  And, in support of those children that will be diagnosed tomorrow.  Thank you for your support.  

www.razoo.com/story/givingtuesdaytlc