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.

Wednesday, April 22, 2015

Happy b-EARTH-Day, Gavin!

Zero through 5 years old

The Big Boy is SIX

Today, Gavin is six.  It is almost impossible to believe.  I know every year and every milestone tends to result in the same feeling of "where did the time go?" but there's something about SIX that seems so surreal.   Even he thinks so!  For days upon days leading up to his birthday he would talk about turning six and just how big a number it was.  He was so excited for this day, that I think he actually woke up pretty disappointed.

"Mommy, what's it supposed to feel like when you turn six?"
"Gavin, it feels kind of the same as when you were five.  When you are growing up, the changes seem to happen gradually."
"What do you mean?"
"I mean you really don't feel much different on your birthday than you did the day before, but if you look back and think about one year ago you'll realize how much you've grown!"
"Oh.  I just thought I would feel bigger.  I thought I would be able to do stuff."

Maybe it's impossible to imagine Gavin is six because Ty isn't here. Because I don't even know what his big brother would look like at six years old.  It's such a complex balance between trying to celebrate Gavin without choking back tears over Ty every single time there is a milestone in his life. It's just that with each milestone, his brother's absence is that much heavier.  It is ALWAYS there, even when I have the biggest smiles.

Gavin was very excited when they started having Earth Day lessons in school.  He felt so special that his birthday is on the same day and he came home with so many questions for me. He thinks it's weird that I refer to our planet as a "her" and he had a hard time grasping the concept of how deep the ground goes and how high the sky goes, which also led to a lot of questions like:
"If God is everywhere, is he even underground?"
"Do you think there's a separate Heaven for dinosaurs?"
"Is the Earth alive?"

Gavin also proved that he takes after me when it comes to crafting.  He was very excited to show me some of the ways he learned to re-use every day household trash.  Like turning a water bottle into a scooper, or turning a jelly jar into a flower vase.

He refused to listen to me when I explained that I think the water bottle needs to be a gallon with a handle ("just watch me, I know how to do it." he insisted).  He also decided to make a flower vase out of something that was already a flower vase.  Not exactly the kind of "re-use" i had in mind.

The Jug Scoop

Gavin NAILED IT
The Painted Mason Jar

Gavin NAILED IT
 I can't wait to put these puppies to good use.  Especially the scoopers.  The possibilities are endless?

Thanks so much for your love and support over all these years.  I can't believe it's been almost five years since Ty's diagnosis.  Mind blown on many levels today.  I love that Gavin is getting big - I love being around him and all the adorable things he says and does - but it's so bittersweet when your youngest starts to tie his own shoes, take showers, help himself to a drink and a snack.  I ask him all the time, "Where did my baby go?" and then he climbs into my lap and says, "right here."  :)  I am lucky to have such love in my life.




Sunday, April 19, 2015

The Land of a Thousand Flashbacks

Last summer, I was so honored to appear on the Today Show with Kathie Lee and Hoda to talk about the Muddy Puddles Project.  At the end of our segment, they surprised us with a 3-day trip to Disneyworld.  We were approaching the one year mark in May (when the trip expires) so Lou and I thought it would be a great treat to surprise Gavin with the trip for his birthday (he turns 6 on Wednesday, can you even believe it?).


It was absolutely NO surprise to Lou and I when Gavin was less than impressed with his surprise.  We waited until we were at the airport to tell him where we were going and his reaction was, well, mediocre at best.  He rolled his eyes and told us we were wrong, Disneyworld is not a magical place, because there’s not even any such thing as magic. 

Well, okay then…  Guess that video won’t be going viral! Kathie Lee and Hoda won’t be playing a cute clip of the excited little kid relishing in their generosity!  Nope.  We’ll save that for when he’s older so he can see how much he goaded his parents growing up. 

The last time we were in Disneyworld, it was for Ty’s “Make a Wish” trip in December 2010.  Gavin was 20 months old, Ty was just three, and Mely was very new to our family.  Lou and I knew it might be a difficult trip, but the severity of the flashbacks, even all these years later, was something we just hadn’t anticipated.  As always, we felt so incomplete without Ty and Mely there.

Flashbacks are funny like that.  I might never have remembered eating vanilla ice cream with Ty in my lap right on a particular bench in Universal had I not walked right by it.  I forgot how he held his camera and took pictures while we were on the train at Animal Kingdom until we boarded a similar ride in Disney – then I could remember every detail from that moment.  The red sweatshirt he was wearing, his hood was up to keep his bald head warm, batman blankie was on his lap, he was sitting to my left as I had my arm around him to make sure he was comfortable and safe.  I could hear his little voice in my ear again.  See his little hands gripping his rubber camera.  Feel the little bit of fuzzy hair and hint of dampness on my lips as I kissed his head.  I can’t even hold back the tears writing about it, I must have looked crazy being the only person wiping away sad tears on and off all day at the happiest place on Earth. 

I spent so much time thinking about what it would be like if they were both there, six and seven years old, running around together.  Gavin absolutely LOVED the roller coasters!  The faster, the better.   Some of the simulation rides freaked him out a bit and the Jurassic Park log flume scared him to tears (which Lou and I teased him about endlessly until he did it again and loved it).  He totally appreciated the humor during the Simpsons ride at Universal Studios, which made me so proud :)



I think Ty would be exactly the same as Gavin.  Neither of them would have been impressed with the characters in the parks.  Neither of them ever liked Disney movies or characters in particular… it’s all about the superheroes and of course, Max and Ruby for Ty.  And after such a long winter, the hotel pool was also just as appealing to Gavin as a day in the park. 

We were staying at a new boutique hotel in Orlando that did not have a lot of kids, so it made it even harder to watch Gavin in the pool, so excited if another kid showed up that he could play with.  Lou and I wondered if Gavin was able to sense how mixed up we were between genuinely having tons of fun and being completely slammed with sadness at the same time.  We don’t think he was aware, but maybe subconsciously he knew because he would say “Mommy?  I love you.  Daddy?  I love you” 20 times a day.  He showered us in hugs and kisses for 4 days straight.  It was amazing. 

We are driving home from the airport as I write this.  It's early in the evening and I am just so physically and emotionally spent.  I don't even know how I'm going to find a way to get back into routine tomorrow with work and school.  Post-vacation hangovers are always like that, I guess, but this time it feels worse than ever.  I just have so many emotions to digest and it's simply exhausting.  Gavin is feeling it, too :)


I don’t want my memories of Ty to be so painful, but they always are.  I can’t experience such detailed flashbacks without simultaneously feeling intense longing for him.  I want to jump right back to that place and hold him and talk to him and kiss him and never, ever, ever let him go. 





ice cream break with Ty at Islands of Adventure

Thursday, April 2, 2015

National Jump in Muddy Puddles Day - Thank You!

As many of you probably noticed via social media, we decided to declare April 1stNational Jump in Muddy Puddles Day” on behalf of the Muddy Puddles Project.  I had a blog posted on Scary Mommy yesterday that was shared over 18,000 times (READ ITHERE).  We created a Facebook page that has more than 1,050 likes in one week.  And we collected more than 150 photos in 24 hours – and counting.  

I took off from work for the majority of the day and I took Gavin and his buddy on a hunt for Muddy Puddles.  Since it was April Fool's Day, we also made some mud soup for the Daddy's for dinner :)  My favorite part of the day was when they broke into a muddy puddle dance party - their idea.  



I didn’t know what to do with all of these incredible photos – how best to share them, so I created a slideshow (forgive my poor video editing skills).  Eventually we will convert the new Facebook page to be solely dedicated to the Muddy Puddles Project, so please be sure to like and share.  I don’t care what kind of day you’re having, you can’t look at these pictures and NOT smile.


I sat down in my living room yesterday afternoon, the sun was shining through and for the first time since December I felt warm.  I heard some suspicious sounds over by the window and I knew immediately – it was ladybugs.  I counted 19 of them crawling around the room, flying and bumping into my windows.  I say it all the time, I simply can’t make this stuff up.   We lived in that house for 4 ½ years and I asked my mom – can you ever think of a time we had ladybugs like this until Ty passed away.  “Never,” she answered.  

Yesterday was a great day.  I went to bed with a smile on my face.  As I was putting Gavin to sleep I said “I am so happy I took today off to spend the whole day with you.  I loved playing at the park and running around in our backyard.  I had a great day, I love you.”

“I love you too, Lady.”


Can a heart melt more?  Lady.  How adorable is that! 

Monday, March 30, 2015

Cancer: The Emperor of All Maladies


The book sits on my nightstand.  I have referred to it often and found Siddhartha Mukherjee’s eloquent writing to be so perfectly explicative whether one has studied cancer at the PhD level, or for someone like me whose own child was diagnosed and who is desperately trying to learn about this evasive disease that took hold of my son.     

I first learned that Ken Burns agreed to produce a documentary series based on the book for PBS in early 2014.  When I was asked if I would participate in a series of promotions for the documentary, I jumped out of my chair with enthusiasm.  I was so certain that a documentary like this would be crucial in helping the public better understand this disease that affects each and every one of us.  The magic that they created out of my clumsy interview simply takes my breath away. 

My son was diagnosed in 2010 and I have since been completely wrapped up in cancer -- childhood cancer in particular -- and I am still overwhelmed by its complexity.  From trying to understand, “Where does it come from?” and “How did this happen?” to “What do we do to destroy it?” I expect this documentary will be eye-opening. 

Last week I attended the premiere in New York and watched 30 minutes of footage that was pulled from the complete 6 hour series.  What unfolded on the screen in front of me had me glued to my chair at some points, and walking out of the room at others.  Even after all I’ve been through, all that I’ve witnessed first-hand, I was surprised by the range of emotions I experienced. 

There was historical video footage of U.S. Presidents, one after another after another over decades, who declared cancer a national priority and who claimed a cure is on the horizon.  It was a sinking realization of just how long we have been trying to beat this beast.  A punch in the gut. 

In order to tell the history of cancer, it is necessary to focus on the incredible advances that have been made in treating leukemia.  The progress that has been made is mind-blowing, but when I saw the word “Vincristine” across the screen as one of the first agents that helped to cure these children in the 1950s, I couldn’t control my tears because 60 years later my son received Vincristine for his brain tumor. It was ineffective, the side effects were horrific and he deserved better. 

We are at the cusp of discovering alternative, therapeutic treatment options that can effectively fight cancer with less toxicity, but they just aren’t available to treat most cancers – at least not yet.  It’s not happening fast enough, and there are children who are running out of time.   I saw my beautiful son’s face in the photos and video footage of every desperate child on that screen and couldn’t help but think, “God, we have come so far on one hand, and on the other hand we have made no progress at all.”

I am excited about the level of knowledge that has been gained.  I was getting chills when listening to the oncologists and researchers talk about how much we finally know and, more importantly, understand about cancer on a cellular level.  For the first time, we have a foundation of real knowledge on which to build our new plan of attack, and that is so hopeful.  However it is misleading to position the progress that has been made against childhood cancers the way it is being portrayed in some of the reviews I have read. 

Yes, today doctors can cure 80% of childhood cancers… but this statement greatly downplays the need for private funding of research. That 80% lumps all childhood cancers together into one category and paints a picture of great progress, which is a grossly inaccurate portrayal of the real situation.  There are 12 main types of childhood cancers (each with hundreds of subtypes) and those 12 childhood cancer categories are all very different - with very different cure rates.  The most aggressive childhood cancers including brain tumors, neuroblastoma and sarcomas, have not seen an increase in successful treatments over the past 20 years, yet the diagnoses rates for those cancers have increased 29% in those same 20 years. 

I fear that the excitement around the incredible progress that has been made in understanding cancer and how to treat it will give the false impression that research funding has done its job.  On the contrary, research funding is desperately needed now more than ever in order to harness this knowledge and catapult the development of new treatments.  The day must come when the miraculous story of Emily Whitehead that was featured in the documentary becomes a miracle story for every child diagnosed with cancer.

What I have seen of this documentary so far has me convinced that it is going to be a fascinating series filled with staggering information and unyielding hope.  Which is exactly what we need to see.  There isn’t a person in this world who hasn’t been or won’t be affected by cancer, and we must educate ourselves on the history of cancer and the progress being made. 


After the premiere, I had the privilege of meeting Ken Burns himself.  He referred to me as the “Muddy Puddles” mom because he was familiar with my mantra around letting kids be kids in honor of those that can’t.  He told me that he felt his mom in the room with him that night, and I told him that I felt Ty was there, too.  That all of our loved ones lost to this disease were watching and nodding and whispering in our ears, “This is good.  This is very good.  Keep it up.”

Airing March 30, March 31 and April 1 on PBS.

Wednesday, March 11, 2015

Love and Ladybugs

I see a ladybug in my house about once a week.  This has been consistent since October.  The month he would have turned 7.  The month he died.  I think they are hibernating in my home and they are my most welcomed guests. 

Of course, there is the occasional bespeckled corpse – belly up by my windowsill.  Sometimes, I might give a ladybug a little tap if I think it is dead, and he or she starts walking again.  I like to think Ty breathes a little life into them just for me… just for a moment…

I don’t watch them for long. I prefer to take notice for a few seconds, then carry on with whatever I was doing.  It never fails that the ladybug is gone by the time I glance back.  Always gone. My visits from Ty are frequent, but brief, and because of that, it feels even more magical – as if it was a secret between the two of us. His whisper in my ear.  Sometimes I see one out of the corner of my eye just at the moment I am heavy with grief – my head swimming with thoughts of Ty and cancer and longing.  Other times they appear when I least expect it and I stop for a moment to think “Oh, Hi Ty."

Always, always, always… they come to our events for the nonprofit we founded in his memory.  I have one board member who sees one every time she’s packing her car with t-shirts and other SuperTy merchandise.  They are spotted in swarms at the Mess Fest.  They were at Carle Place High School Spirit Night, and while setting up at Rock for Research in Dallas.  Just the other night, I was up very late preparing for our upcoming Share the Love event.  I was moving item after item into the living room to do an inventory of our incredible auction items, and there on the floor – crawling among them – was my little red friend.  It never fails.  Mellissa, who is working like crazy to prepare for Satruday, had a visit from her ladybug today - I just saw the photo she posted to Facebook.  It never fails.  

Friday night my sister-in-law, my niece, and my neighbor all came over to help.  I told them about the ladybug and said, “You guys get them, too, right?  I mean, you must have them in your house.  When was the last time you’ve seen one?” 

All three of them assured me that they can’t even remember the last time they’ve had a ladybug in their house.  “It’s been months and months – maybe even years!” they told me. 

I can’t tell you what it means because I have no idea what happened to my son or where he is now.  I can’t see him, touch him, or hear his voice. But I can assure you that the ladybugs are more than a coincidence.  So are the multitude of other signs I have gotten from him, and continue to get on a semi-daily basis.  There is something more to this life, thank God, and I believe with all my heart that he sees how hard we are all working to make a difference, and he approves J  Until I see him again, I carry his heart with me… I carry his heart in my heart. 


Come Share the Love with us this Saturday – tickets are still available for purchase here, or you can buy at the door.  www.sharethelove2015.eventbrite.com 


Look at all of this loot!  This hand painted yoga mat makes me burst with happiness.  It's going to be almost too hard to part with at the auction (but, then again, I don't do yoga so it's okay :) xoxo



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.