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.

Sunday, August 2, 2015

The Power of Yes - It's what Mess Fest is all about

Before I jump into the magic of Mess Fest and how much we have planned for this year to make it bigger, better and longer than ever... PLEASE check out our page on Thunderclap and join the campaign by allowing access to your Facebook and Twitter so we can spread the news about Mess Fest far and wide.  It is so important to help bring our cause and our event into the spotlight.  

Speaking of spotlight... I posted an article to Huffington Post just the other day all about the Power of "Yes" and why we created the Mess Fest.  I hope you'll read it and share it with your friends.

This quick snapshot represents just some of the children who will be honored at Mess Fest on Saturday.  They are the reason why we spend the entire summer planning for this day.  We hope you will help us help these kids while enjoying a ridiculously fun afternoon.

Most of you can't possibly understand how incredible it feels every time I see a Muddy Puddles photo posted to my wall, the TLC wall, in an email or submitted through the Muddy Puddles website. When Ty died, I immediately started to panic about how we can make sure his life is remembered.  It is so important to know he made a difference, not just to me but to the world around him - that we are not the only ones who are still thinking of him all the time.

Well - even after all this time - the photos keep on coming, and the people keep on joining us each year to play in the mud at Mess Fest.  That, my friends, is a LEGACY, and it is so incredibly comforting.  It represents the beauty behind all of the pain of his loss. Lou just said to me, "Ty was never here to see the Mess Fest," and I reminded him that Ty created the Mess Fest.  Of course he has seen it.  He is the largest presence at the camp that day, and anyone who has attended would agree.

To honor Ty's legacy our planning team has vowed to make this the best Mess Fest yet.  In memory of Ty and in honor of all the children who have ever/will ever battle cancer, this day is sure to be everything a child could dream of.  We added an extra hour to the agenda (11 - 5PM) so you can spend the entire day, or if you have other plans you can squeeze in both because you will NOT want to miss this.  What else is new?:

  • A GIANT Slip n' Slide - 40x100 feet - you've never seen anything like it
  • Hydraulic Trampolines
  • The "Geronimo" Bungee Jump
  • The Morgan Stanley "Slopstacle" course featuring color run powder and foam pits
  • Inflatable Twister
  • The Velcro Sticky Wall
  • Junior Bubble Soccer and Inflatable Bowling
  • The Nest and SkyTower playgrounds (brand new)
  • Candy Cooking Class in the Kids' Kitchen
  • The Trading Post and Jewelry Station
  • GAGA
  • The Gymnastics Pavillion
  • Karaoke and more...

So please: Get your tickets, join our Thunderclap campaign, it's not too late to do the Dirty Dunk and we have a couple more days to fulfill our Amazon Wish List.  It's almost here!!  


Sunday, July 12, 2015

Where did my baby go?

...and I don’t mean Ty.  Because that is a question I won't know the answer to for as long as I live.  I mean... really… where is he?  I believe in a beautiful place but I don’t understand what that means, what it looks like or where he is exactly.  None of us do -- no matter how confident we are in our faith. 

No, I mean my baby.  My Gavin.  What the hell just happened?  When did he get so tall?  How is it that he is finished with kindergarten already?  Off to the first grade soon!?!  On the first day of school he was such a baby.  With his oversized backpack and new sneakers that were one size too big for growing into.  Today, it became obvious that my baby is long gone and far away.

He speaks perfectly.  That adorable speech delay has vanished completely and he hasn’t asked to watch Paw Patrol in so long I can’t even remember.  He watches big kid movies and he thinks Sharknado is hilarious.  

Speaking of "hilarious," he uses that word all the time, in perfect context.  And he always sounds so grown up.  

I am sad about this.  I am “mom” not “mommy” anymore, sometimes even Cindy.  And as much as I love how our conversations have evolved and I can’t wait to see who he becomes as the years pass by, I feel like my time being a mommy has flown by and so much of that time was robbed from me by stupid cancer. 

I can’t ever get that time back.  A feeling I know all too well. 

But then something catches my attention on the kitchen counter.  My little bud vase is filled with the flowers that he still picks for me, most of which are wildflowers that others would deem weeds, and I realize he is still there – my baby – just not in the same way. 

I am so grateful that he still sees the flower, not the weed.  I hope he never loses that!  I am grateful that he still looks for me first when he stubs his toe or scrapes his knee, and that every single time I say "I love you" it is followed by his, "I love you more." 

I just love this big little fresh face.  

Wednesday, June 3, 2015

My kid is a weirdo and I couldn't love him more

Gavin recently learned the word weirdo and he loves it.  He has been having a lot of fun testing in out in all different ways to see if he can get a rise out of me.  Of course I have told him over and over again that it’s not a “nice” word, which probably makes him want to use it more.

“Hey… You… Banana in my banana bread (pointing to the slice of banana bread I gave him for breakfast)… You’re a WEIRDO!”  

Me: “Why don’t you want to invite any girls to your birthday party?”
Him: “Because they’re weirdos.”

Me:  “You love all superheroes, but Superman. Why don’t you like Superman?”
Him: “Obviously, because he’s a weirdo.” 
I had to stop arguing with him on that one when he pointed out how Superman wears his underwear on the outside of his uniform.  Superman immediately lost his cool status with me.

What my sweet boy doesn’t realize is that he is as weird as they come.  And I love my little weirdo.  Which means my husband and I are a couple of weirdos, too, because as my Mother-in-Law says, “You don’t plant tomatoes and get potatoes.”

Off the top of my head, a quick list of some funny things about my little wack-o:
  • He wears goggles in the shower because he doesn’t want his eyes to get wet.  
  • He prefers wearing pajamas over absolutely everything.  If you try to show him that sweat pants and t-shirts are equally comfortable he will look at you like you’re, well, a weirdo.
  • He refuses to wear short-sleeve shirts.  No matter how hot it is.  He prefers not to wear shorts over long pants, either, but I use shorts as a bargaining chip (i.e. if you wear shorts today, I’ll let you wear a long sleeve shirt).
  • He won’t touch the toilet bowl because he’s afraid there’s pee on the seat but he doesn’t care that his efforts to avoid any contact with the toilet result in HIS pee getting on the seat.
  • He also runs out of the bathroom after flushing in fear that the toilet will overflow every time
  • He hates ice cream because it is cold.  I mean, c’mon!!  
  • On that note, he doesn’t like chocolate, either.  Is he even human?
  • His favorite superheroes are the X-Men, but he prefers Cyclops over Wolverine – I can’t even begin to understand this.
  • He calls his penis his “wee-nis” and calls a girl’s you-know-what a “no-penis” (disclaimer: I did not teach him this).
    • “GAVIN!!! Close that door, I told you I need privacy!!!!
    • “Okay, Mom.  Sorry, I forgot!!  I almost saw your no-penis! <giggles>"
  • He knows the word “bra,” but prefers to call them “boob clothes.”
  • He says that the only reason girls are lucky to be girls is because when they are teenagers they grow boobies and can look at them and touch them as much as they want (he’s a sick-o)
  • I believe his familiarity with the word is also why he thinks “booby” traps are so funny.  
  • When I asked him what kind of cake he wanted for his birthday, he picked banana bread.
  • The only way he knows how to dance is breakdancing.  Very bad breakdancing.  
The other night we were saying prayers before bedtime and Gavin was asking me what everything means.  Of course I was rushing and just want him to go to sleep, so I had little patience.  When we got to the Hail Mary and we said, “blessed art thou, amongst women,” he stopped me again to ask what it means.  

“Ugh, Gavin.  C’mon!  We’ve been saying this prayer for years.  Amongst women is an old fashioned way of saying ‘among women,’ so it means she is most blessed among all women.”

“OHHHH!!!!  All this time I was picturing A MONKEY SWIMMIN’!”

I guess I should have more patience and take the time to explain things to him more often!  So cute.  I love my little weirdo so so very much.  He makes me so happy.  We are in love :)

Sunday, May 31, 2015

I hurt myself today... to see if I still feel...

When Johnny Cash sings those palpable words, so somber and sad, he describes my day on Friday quite perfectly.

 I didn’t know I was doing it.  I didn’t realize my trip into the city would turn into a haunting day of torture.  I thought I was strong enough.  I was even looking forward to it; longing for some time in the neighborhood that we used to call our home away from home.  There is a piece of me that still lives there, and I miss it. 

When Gavin turned six in April, his pediatrician discovered a heart murmur during his annual physical.  She assured me it was likely nothing to worry about and referred me to a local cardiologist.  After knowing what we know, Lou and I decided to take him to a specialist at NYP-Weill Cornell, instead.  My best friend’s niece, Savannah, was feeling tired and sluggish – she had a tumor growing around her heart.  Ty had trouble sleeping, he had a tumor growing at the base of his skull.  Maybe if the doctor’s discovered them sooner, our children would still be alive.  I don’t take any chances.

Walking from the parking lot to the hospital entrance, we passed Memorial Sloan Kettering.  (Just to explain, Ty was treated by the neuro-oncology team at MSK, that was our regular hospital, but his neurosurgeon was across the street at Weill Cornell, as was the Pediatric ICU.  At the time there wasn’t a PICU at MSK so we spent plenty of time across the street when Ty was critical). 

So passing by MSK, I had a strange, almost unstoppable urge to go inside.  I had my eyes peeled for a family on the street so I could say hello and connect with the parents.  It wanted to belong there again.  I hoped to see Ty's oncologist Kevin or our favorite nurse, Mary, just to feel for one second like they were still part of our lives, and for a split-second it almost felt like I DID still belong there.  

Then it hit me that I have no reason to walk through those doors.  That the family on the street wouldn’t want to “connect” with me; that they don’t even want to know I exist!  When Ty was fighting, I kept my distance from the bereaved parents.  I wasn’t strong enough to comfort them or to get close to them.  I needed to focus on treatment and survival and keep far away from the “other” moms.  Now I’m the mom they fear most.  The mom they turn away from.  And I don’t blame them ONE BIT. 

I never expected to suffer such intense flashbacks the second I caught the familiar scent of the bakery in the lobby at Weill Cornell.  I didn’t know that the cardiologist’s office was on the 6th floor in the Greenberg Pavilion; that I would make a left off the elevator instead of the right I was so accustomed to.  I didn’t realize I could still feel so green with envy when watching the families carrying blue or pink balloons up to the maternity floor to welcome a new baby.  I became flooded with memories from when I was the new mom.  Who could have ever imagined how my brand new baby boy would suffer in life. 

I grabbed Gavin’s hand and rushed passed the gift shop in fear that he would want to go inside.  I didn’t even look toward my favorite bakery, nor did I make eye contact with a single person on my way to our appointment.  Once we were inside the cardiologist’s office, I thought I was safe.  I had never been there before.  It was so new and nice, with so many fun activities in the waiting room for Gavin. 

I was safe until the testing began.  My eyes filled with unstoppable tears the minute I saw Gavin stick out his finger for a pulse-ox.  He had never seen one before and he thought it was funny.  He doesn’t know that Ty wore a pulse-ox on his finger or toe more times than I can count.  When the nurse peeled the leads and placed them all over Gavin’s chest, with one on each leg and one on each arm, I was in a complete state of internal panic.  Not because I was worried for Gavin – he was smiling the entire time – but because I was brought back to the PICU.  To countless emergency stays.  To laying in the bed next to Ty, trying to avoid pulling on all of the wires hanging from those leads.  If the nurse saw my tears, she didn’t say anything.  I am grateful for that.  I am grateful that Gavin didn’t notice, either.  He was relishing in the attention and having a bit of fun with the whole thing (leads on his nipples, leads on his nose, etc.). 

Everything checked out perfectly fine for Gavin.  The doctor paid extra attention to the echo-cardiogram and explained everything he was seeing to me.  He assured me that there is absolutely nothing to worry about. He was referred by Ty’s neurosurgeon and he knows what we’ve been through so he was very careful with me.  Very kind. 

But something haunts me from that appointment.  They had very modern machines, and they used the gel leads that are very easy and painless to peel from the skin.  Gavin was peeling them off and placing them all over the place and it didn’t hurt at all.  That’s good, I know.  But watching that brought me right back to the PICU when Ty was freaking out over replacing the leads that were all over his body.  His skin was so sensitive from chemo and they always stuck on so badly, like the worst bandaids imaginable.  Sometimes the remaining glue would be on his skin for days.  My mom, who performed hundreds of EKG’s as a medical assistant, once asked the nurses “Why don’t you use the gel leads, I don’t understand it??  These leads are so old fashion, they are hurting him!?!?”  The nurse always answered that they didn’t have those kinds of leads in the PICU.  

But they have them down the hall, don’t they?  I just learned that.  Newer equipment.  Nice, fancy rooms.  Right down the hall.  When the kids who suffer the most lay in an old, outdated, run-down PICU.
This is just one of 50+ flashbacks that came rushing in, fueling the quiet rage that is still burning inside me.  All weekend long it has been building.  As bad hospital memories consume me, I have to work twice as hard to bury the rage and keep a smile on my face for those around me.  It takes so much energy to keep it all hidden under the surface.  I was caught up in these thoughts when I found myself doing over 80 miles per hour uphill on Route 55.  I calmed myself down with deep breaths, and it felt as though my expanding lungs help to push the fire back down into the pit of my stomach where it hides. 

Of course I'm angry.  Someone ripped the skin off his cheek in the OR when removing tape.  Bruising from taking the dressing off around his port.  One time a nurse failed to notice the tape that was holding his needle in place and pulled with such carelessness that his skin split open under his arm (not even where the tape was). He was not sedated when that happened. Are gel leads too much to ask for?  It has just set me off in a tailspin.  

I was carrying Gavin for a couple of blocks on Friday because he was so hot and tired.  He rested his head on my shoulder and I guess he heard me sobbing.  I didn’t realize I was doing it.  He yelled at me.  “Ty is still with you!” he said. 
Then he asked, “Do you think there is ever tornadoes in Heaven?” 
“Of course not,” is said. 
“Yeah, me neither.  Only the best stuff is in Heaven.  Nothing scary ever.”

I wish I could find comfort in that idea, but today I miss my son and I feel angry.  Tomorrow I will try again.

Sunday, May 10, 2015

Mother's Day Tribute - The Locket Program

Seven children are lost to cancer each day in the US.  More than 2,500 moms over the past year alone will be grieving their loss on this day, because their child is not there to make a card, or gift a handful of flowers picked from the garden (or dandelions picked from the lawn).  It's a hard, hard day.  Almost impossible.

Thanks to our incredible supporters, we will be able to send out 200 more lockets to bereaved moms of childhood cancer.  It is the most heartbreaking thing we do at the TLC Foundation, we have shed countless tears as we print photos of these beautiful children and place them in the lockets.  Our hearts break over and over again, but at the same time it is the most meaningful project to work on.  We pour love into each and every locket, and we cry happy tears each time a mom reaches out to say thank you.  It means so very much to us that we can give this gift of remembrance, and it is your generosity that has made this program a reality.  

I have to give credit to my wonderful neighbor, Bianca, who inspired the project.  It was a simple gesture when she stopped by my house with a gift… a gift that has since evolved into something so much bigger. She gave me a locket. I had been desperately wanting a locket to put Ty's precious picture in. The locket was engraved with the poem “I Carry Your Heart with Me,” by E.E. Cummings. I wasn’t familiar with it at the time, but I sat in my room that night and read the poem over and over and over again until I fell asleep.

At the TLC Foundation we have since begun sending these lockets out to other moms across the country who have lost a child to cancer. We solicit anonymous donations to sponsor the gift, and apply all proceeds directly to fund childhood cancer research.

Of course, I know that a simple locket doesn’t change our painful reality, but to find a locket in your mailbox - with a photo of your child already inside - has proven to bring each recipient a feeling of comfort. It is just so important to know that our children are loved and remembered, and upon opening the package each mom feels less alone in her grief – even if just for a moment.

Thank you for thinking of all moms this Mother's Day. If you would like to participate in the Locket Program, visit prettystore.org.  If you know someone who lost a child to cancer, you can nominate them to receive a locket by filling out this simple form here.


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

The Painted Mason Jar

 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