Sunday, April 28, 2013

Back home

Our time on the West Coast was magical.  Our unending thanks to our friends for allowing us such a wonderful getaway.  The beach in San Diego was beautiful, I caught up with some of my best friends out there, I got to give a long-overdue hug to my friend Kristine who also lost her daughter to a brain tumor, and I got lots of special time with our birthday boy.  On our last day, just minutes before leaving for the airport, we were also blessed with a show from dozens of dolphins playing in the waves.  It was as if Ty was giving us one last smile before our departure. 

While we were away, I watched Gavin run back and forth in the ocean.  Memories of Ty at the beach came rushing in.  Times like this, exactly (click here for video of baby Ty at the beach).  I watched long and hard and imagined Ty, right there next to Gavin, a big boy jumping in the waves and laughing wildly :)  It even looks like those could be Ty's footprints next to Gavin in this photo.

Today I realized there is a real reason why Lou and I have been traveling so much.  My house is a very sad place for us to be.  After being gone for a week of R&R (which was long overdue and truly wonderful) I was anxious to get home.  Now that I’m here I am – once again – slapped in the face with reality.  Maybe we just need to be here and grieve, or maybe escaping is good.  I don’t know the answer.  I just know that our pain will never ever go away, but we are slowly learning to live with it and to smile again despite the grief.  Lou and I want to be happy again.  We talked tonight about how we are making a conscious decision, from today forward, to try and change our lives so we can be happier because that is what we learned from Ty.  To try and embrace and to love life again, in his honor.  To stop fighting over stupid little things.  To remember the bigger picture.  To love, love, love and love more.  Slowly, we have vowed to try our best to make this shift. 

I just realized that I always choose to listen to depressing music lately.  I should try to make a conscious effort not to do that, too.  Lou took Gavin to Nana’s house for dinner tonight and I’m here alone, supposed to be unpacking.  Instead I’m listening to Nirvana Unplugged, singing every song, as I walk from room to room in my house opening drawers and cabinets and looking at every little thing that has anything to do with Ty.  Anything he once wore, touched, played with, looked at.  Things I bought for him after he died just because he would have loved them so much (like the Robot notepad, a package of Razzles, a rainbow flashlight).  Maybe not a healthy way to be spending my evening, but probably very necessary.  It’s all part of the process, I think.  I missed having his things all around me while we were away, yet it makes me sad to be around them.  What a sad cycle this is, but it's all part of the process, I think. 

There are three places I spent the most time in tonight.  First, the kitchen pantry.  Ty’s med drawers are still in there.  They aren’t nearly as full as they used to be, but there are still so many pieces of Ty.  The nebulizer that we were provided with when we left the hospital for the last time.  Then there are the spare g-tube attachments; the mediport change kits; the nail clippers I used on his perfect little hands and feet for years.  There is a bottle of expired allergy medicine that was prescribed to him just before he was diagnosed in 2010.  I don’t know why I don’t throw it away.  I look at it all the time and think, this is a normal medication that should have Ty’s name on the bottle.  Not the morphine, the oxycodone, the cytoxin or etoposide that was soon to become part of our medicine collection. 

The folder with the contact information for his Hospice team is still there, which includes educational brochures on dying and grief.  Although I understand the good intentions, I find them insulting just because I am Ty’s mom and I still don’t want to accept that his death was a normal part of life.  All of the literature seems to be directed toward an older audience.  Information that makes sense for my mom when she was caring for Granny last year – but not for a mother and her five-year old son.  Ty’s death was unfair and unnatural.  With Granny, as much as we love and miss her, we can accept that it was “time.”  You simply can’t tell yourself that when you are filled with hope for a full life ahead despite the odds.  A future.  Ty didn’t have a chance to live before he died, and it was my job to give him that future.  I will forever regret not being able to do that.     

I stand in the pantry, I look at all of these things, and I feel like the greatest failure of all. We tried so damn hard.  We fought.  We promised Ty that he was strong and brave.  I just want him back to take care of him.  I want to change the dressing on his g-tube.  To give him a gentle bath and kiss his scars as I dry him off.  I used to love that so much.  To get him so clean and comfy.  I miss brushing his teeth and running my fingers through his hair – always keeping in mind his shunt and his never-ending stitches.  Lou was saying just this morning that he ran his fingers through Gavin’s hair and the absence of a shunt reminded him of all the unfairness Ty endured.  How he looks at pictures of baby Ty and simply can’t imagine that this perfect little baby of ours got cancer and died. 

Naturally, I was sucked right into visiting Ty’s Captain America bedroom next (the one he never slept in, but loved just the same).  I missed being there after being gone for a week.  It is pretty much a shrine to our SuperTy and all the things that made him proud.  I opened his drawers.  I thumbed through his favorite books.  I looked at his artwork from preschool and I kissed his arm and foot braces.  I laid in his bed and cried.  I put his stuffed animals to my nose, although they don’t smell like him anymore it is still comforting to know that he was one nuzzling with the same doll. 
I put a few new framed pictures of him out on his nightstand.  We took home some beautiful pictures from his memorial and I wanted to be able to see them every day.  Including this one.  Me and my boys.  I am one lucky mama. 

Then there’s Gavin’s room.  I opened his closet and stared.  We used the same closet for both Gavin and Ty since we moved here, and there are still so many doubles hanging there.  Two matching bathrobes.  Two gray blazers that they both wore last Easter.  Two Calvin Klein dress shirts and matching blue ties.  The matching Christmas tees that have a picture of a bulldog with a red Rudolf nose and antlers.  There are also the clothes that were once Ty’s, like the Spiderman hoodie that Spiderman himself gave to Ty during our Make-A-Wish trip.  The brown sweater that he always looked so handsome in.  The Spiderman t-shirt that says “it’s web slinging time” when you press a button – he loved to show that off to his teacher, Brian, at Blythedale.  He would call out, in a whisper, “Bwyy-annnn.”  I can hear his weak little voice now.  I love these clothes and I know Gavin would, too, but I don’t like to dress him in any of them.  Sometimes it’s just too hard to look at Gavin wearing those things. 

That's all for tonight.  Back to work tomorrow!  I will share updates on the foundation this week.  In the meantime, we are so grateful for the Hudson Valley Pizza Fest today, thanks for those who supported Ty's foundation at this fun event.  And thank you so much to our friends at Animal Kingdom who hosted a great PJ Day fundraiser while we were away!  So sorry we missed it.  Next weekend there is a Star Wars party at Jumpin' Jakes and a Horse Ride for Ty at Putnam County Park.  Lots of great things on the horizon, and more updates on an exclusive charitable clothing line to come!  Thank you so much for your support. 

Tuesday, April 23, 2013

Happy birthday to our big boy

Gavin is four years old.  I can't believe it.  Where did my baby go? 

He had a great day today.  We took him to LEGOLAND and he couldn't have been more excited about the entire experience.  Especially the new Lego Super Hero sets that he took home with him.  All-in-all, I think it was a great day.  The weather was perfect.  The place we are staying is perfect.  We are just missing one huge and most important thing in our lives that makes every minute of every day imperfect.  It can never be perfect again, but we were happy today and that is so important for Gavin.  He had a very happy birthday today.  We shared the best hugs and kisses at bedtime tonight.  I feel really good about this very beautiful trip we made out West with him to show him just how special he is and how much we love him. 

When we took him to the zoo the other day, it was the first time we took a family photo without Ty.  It was so hard to do.  His absence is so heavy and to sit in front of the camera and ask someone to take a photo of us, it was just so weird.  My head was spinning.  It took every ounce of my being to smile and make pretend.  The person taking the photo had no idea whatsoever what Lou and I were really thinking as they happily uttered the command, "say cheese!!"  Gavin had no idea, either.  But for us, the act of attempting to take a normal family photo couldn't have been further from normal.  I don't like to look at it. 

Last night, Gavin was telling Lou and I a story at dinner time.  He was so cute and so excited, engrossed in a conversation about super heroes.  He started going off on an imaginative tangent about a new Avengers song that sings about Iron Man, Hulk and Hawkeye.  He was so animated when he talked about the song that we all know doesn't really exist.  Sharing adorable details he was making up off-the-cuff just to entertain us.  I turned to Lou and said, "you know what would be happening right now if Ty was in that seat right there, where he should be?  Ty would be turning to Gavin and saying 'Ga-Gaaaa!  That's not a weel song!!!' and Gavin would get pissed and yell back, 'yes, it is a weel song, Ty!!'"  They would definitely argue over it because Ty doesn't let Gavin get away with anything and Gavin is just so stubborn and hot-headed.  The more angry he gets, the more Ty would tease him. How he loved to get a rise out of his brother! 

We feel so incomplete without Ty.  Lou and I have been watching Gavin running around for days.  At the zoo, on the beach, at the theme park, and all we can talk about is how we wish he had his brother to play with him.  He just seems so alone and it's not fair.  He is shy around other children that he doesn't know, for example he was hanging all over me at LEGOLAND today, too shy to play with the other kids.  If his brother was there, that never would have been an issue.  But today I am still happy for Gavin.  He had a really good day.  He was so sweet and so appreciative.  We are blessed and lucky to have our big, loving four-year-old boy.  I just wish it wasn't going by so fast!  I was robbed of his adorable toddler years because I was so consumed taking care of Ty, and now I watch him from a distance in sheer amazement at what a good boy he has become despite it all.  He makes me so proud :)


Sunday, April 21, 2013

T.Y. Thank You

I tried to update the blog for days!  I have had so much on my mind, so many people to thank since Ty's memorial, so much pain in my heart that I wanted to "release" through this whole blogging process - but life has been so chaotic this week!  Good things, but so incredibly time consuming and stressful. 

Immediately following Ty's ceremony, Lou and I jumped face first into a downward spiral.  All week we have been crying ourselves to sleep, on edge with one another, impatient with Gavin.  We feel like Ty's memorial provided closure for friends and family... as if it's okay to move on now... but for Lou and I it only made our wounds more raw.  Don't get me wrong, it was perfect in every way.  But we will never move on or put our loss behind us, so closure just isn't in the cards.  Healing is, though - we realize that and that is good.  We are getting better, slowly, we are.  But losing Ty and all he went through just isn't something we can ever accept.  Which is why we try so incredibly hard to raise awareness and funds in Ty's honor. 

The great news is that I interviewed on national television yesterday.  The Doctors :)  It won't air until June 12, so I'll keep you posted!  We talked about The Muddy Puddles Project, and of course, Ty.  Why he is the inspiration behind the project.  I am so grateful to Melissa for making this happen, and so grateful for the producers at the show for making it such a memorable experience.  In addition, I interviewed with WPLJ-FM and WHUD-FM recently.  I will post the audio to those segments soon.  They came out really good, and I'm just so happy to be getting the word out about childhood cancer.  Even if it's just one listener at a time, it will be one more person who changes their perspective on life because of what Ty Campbell showed them in his five short years, and that makes me happy to imagine.  If I didn't have such wonderful validation that Ty made a difference in this world, and that he inspired goodness, I would never ever be able to survive the haunting memories of his pain and suffering over the past 2+ years that I revisit every single day. 

I have the most incredible friends.  I thank God for them all the time.  Even though I am typically slow to respond to emails and texts, and I rarely answer the phone, they get it.  They help me by simply being there for me.  They take care of me. 

Two friends in particular, are the reason why Lou and I are feeling better today.  Thanks to their generosity and their willingness to open their doors to us, I am watching the waves roll in while I type this.  We are recovering in one of the most beautiful, tranquil places we have ever stayed.  It worked out perfectly because we were able to coordinate our travel to the West Coast with our appearance on the show, and we will stay a few extra days to shake it off and enjoy the view :) 

I think Ty is here, too.   Ty knew that we needed to connect with this family and I am so grateful for that.  He brought us together and we are certain to be great friends for life.  Thank you, Kass and Rocky, we love you :)  I feel we have been lifelong friends and we met only two years ago.  I swear Kass always seems to save me when I need it most.  I open a funny card from her or I get a heartwarming email about Ty and I instantly feel less alone.  We are so grateful for this chance to unwind, think about Ty, and enjoy some time with Gavin minus the usual chaos. Gavin's fourth birthday is on Monday.  We already took him to the zoo, and on Monday we will show him LEGOLAND.  He is so excited!

I would be remiss if I didn't mention that every detail at Ty's memorial came to fruition thanks to another one of our amazing friends, Beth.  She works like crazy, travels all the time, and still made time to solicit candy donations, purchase supplies and decorations, work with designers and printers to have signs made, research and find the perfect bottle for Ty's messages, attend site checks at the hotel and liaise with the church on our behalf even though she is Jewish and unfamiliar with some of the church routine.  We shared several giggles about that :)  On the day of the event, she arrived hours early with her family in tow to help set-up, she dragged around the projector and made sure everything was packed up and returned to our hotel room at the end of the day.  She was tireless and she did it all with a smile. She recruited the beach team, she recruited the candy table team, she made sure every detail was just as we wanted, and it was.  It was perfect in every way.

The other day I was in the middle of a good cry on my way to work.  My childhood friend Caryn called and I thought twice about it before deciding to pick up the phone.  I'm so glad I did.  We were able to cry together, and then she even managed to make me laugh.  She loves Ty so much, and she has done so much for my family.  She lives in DC, has two small children, and still managed/manages to make the trip upstate for every important event.  Even just for a quick surprise visit where we barely exchange more than a hug.  We talked about Ty this morning.  How I was reeling over flashbacks from this summer when he proudly ventured into the pool with me.  How scared he was to go anywhere because he was always afraid of his head hurting, and how much he truly suffered for half his life.  He was a perfectly healthy, happy 2 1/2 year old boy, then he got cancer and experienced constant pain, agitation and discomfort for the next 2 1/2 years of his life.  I cried and yelled about how it would have been easier to accept (obviously) if he survived and grew up to be the witty, inspiring young man I imagined he would be.  Even if he was disabled, I knew he would do amazing things and he would always make people laugh.  Caryn said, "you're right!  You should cry!  It's sad as shit!  And, you know what?  That kid really was funny from day one.  I mean, he pooped in your shoe... on purpose... and that's hysterical!"  I can only thank her for that, because it made me smile and laugh the rest of the way to the office.

When Ty was potty training, I used to let him roam the house without a diaper on so it was easier to run to the potty quick, avoiding accidents (or so I hoped).  One night I saw a very suspicious looking two-year old giving a sly smirk from around the corner.   When he saw that I spotted him, he ran away giggling and whispered "I made a poop."  "Oh my God, WHERE?"  His hand was dirty, but I didn't see a poop anywhere.  I washed him up, I kept grilling him about what happened, until his hysterical laughter turned my attention to one of my adorable pink shoes.  And so, there it was.  He put his terd right inside my shoe.  As gross as that is, I know, it's also friggin' funny - and he knew it :)

I  have been friends with the same group of girls since elementary/middle school.  They are always there for me, and they always make me smile. They traveled from Florida, Virginia, LA and San Diego to be with us at Ty's memorial.  We have been jokingly calling ourselves the GLOW girls since 8th grade (there used to be a Saturday morning program called GLOW and it stood for the Gorgeous Ladies of Wrestling, so we used the acronym to represent the Gorgeous Ladies of Wantagh - so silly, i know, but it was 8th grade and it stuck.  They were all there in full force last weekend, and I will be seeing some of them again this weekend!  When they walked into the church, we shared big hugs and I told them how incredibly surreal it all felt.  How I still doesn't feel like he's gone.  Then I said, "I mean, He's in my purse!!"  They looked at me totally confused.  "Ty.  He's in my PURSE - how ridiculous is that!"  We all paused for a second, having no idea how to respond to that, and then we just laughed.  "Why are we laughing?" we giggled and cried at the same time.  You know why? Because they understood that we could either laugh at the absurdity of it all, or breakdown and fall apart right there.  I'm so glad they helped me to laugh instead because THAT is what Ty wants.  Laughter.  To laugh in the face of the pain, death, unfairness and absurdity.

Then there are the people who Ty brought into my life.  Like Kass and Rocky.  Kristi who writes a letter to Ellen Degeneres every single day. She has become such a huge supporter of the cause.  Marilyn coordinated our meal train for almost a year and always checks in on me.  Melissa and all of the volunteers at the foundation spend so much time building up this incredible foundation of ours. The entire community at Christ Church.  Christina who calls me, emails me and texts me to check in constantly, even though she knows I am terrible at responding.  (I was with her when she lost her brother on 9/11 and now she is taking care of me).  Elaine drove up four hours to meet me at WingBowl just so we could finally hug.  Catherine and her mother had her whole church praying for us, and she came out for Ty's service even in the middle of her brother's full-blown wedding weekend.  Ty's nurse emails me weekly just to see how we're holding up, as do many other friends and neighbors.

There are countless friends to thank.  So many I could write a book.   I just wanted to take some time tonight to express my gratitude to all the beautiful people in my life.  During my worst days, when I feel like the most unlucky person on the planet, they help me to remember that I am still blessed.  I don't love life anymore - that's just the truth - but I do appreciate the goodness and beauty in this world of ours and I believe Ty made the world a better place in the short time he graced us with his presence.

T.Y. Thank You.

Monday, April 15, 2013

Shock and Disbelief

In the wake of the horror in Boston, I couldn't go to bed tonight without letting you all know that Crystal is okay.

Crystal is a beautiful person who was running the marathon for Ty.  Lou and I were so incredibly touched by her benevolence.  Running a marathon is such a tremendous accomplishment, and the fact that she chose to share the glory of her achievement with Ty, to fundraise for his foundation, was such an incredible honor.  She is one of several people who have chosen to dedicate their athletic achievements to the cause, and it has been so humbling.

It should have been a joyous event for the thousands of men and women who trained so hard for this day.  It should have been a beautiful day of triumph and perseverance.  I am horrified over the pure evil that erupted on the streets of Boston today. 

Just two years ago, I carried Ty in my arms for hours and stood at the sidelines during the NY marathon to cheer on Lou and Debi.  It was one of the greatest days of my life.  At the finish line there was an overwhelming energy where even those of us cheering in the crowds shared in the triumph of the runners.  We beamed with pride.  We were inspired. 

What kind of sick person can witness such a beautiful occasion, and instead see an opportunity for terror and destruction.  An opportunity to injure and kill innocent people who were gathered in celebration of human strength and togetherness.  I am in shock, disgust and disbelief. 

Thank you, Ty, for making sure Crystal was okay today.  Since you got sick, I have learned how incredibly sad and hard life is.  How quickly things can change.  How little control we have.  I'm so sorry that hundreds of people were just thrown into the same reality and I pray for them with all my heart. 

Sunday, April 14, 2013

All for you, Ty

Earlier this week, I started writing an update on the foundation efforts, the announcement of the Pediatric "Dream Team" during our trip to DC, the rally for medical research, the launch of the Muddy Puddles Project and more, but I never had a chance to post it before life started getting hectic. 

Gavin got sick.  I secured some exciting media interviews that required some scrambling on my part.  And, most importantly, Lou and I got wrapped up in planning the final details for Ty's long overdue memorial service in Long Beach.  So tonight, I feel like I have a book to write because I want to share so much :)  I will share the beautiful details of Ty's celebration of life, and save the updates on foundation activities for later this week. 

As some of you may know, when Ty passed away we scheduled a memorial service to be held at the church he was baptized in.  We wanted to celebrate his life in the place he called "home," by the beach that he loved the most.  Then, our beloved home became victim to Sandy.  She tore up the homes of our great friends and loved ones.  She roared through the church.  She destroyed the boardwalk and dragged our beaches into the streets.  But, she only made Long Beach stronger and more united.  As angry as I was when all of this happened, cursing "what next" to the skies above, now I can walk through these streets with a pang in my heart and see the significance of  perseverance.  Ty weathered his own storm, and now Long Beach is doing the same.  Everyone is rebuilding, making it even more beautiful in time, and that brings a broken but genuine smile to my face. 

Of course, we couldn't imagine arranging to hold Ty's celebration anywhere else, so we waited until the time was right.  Finally, this weekend, we were able to gather with friends and family and give Ty the tribute he is so worthy of.  Thank you, so much, to all of you who were there.  I regret that I didn't have more time to catch up with everyone, but we hope you know how grateful we are.

The last time I was in that church, Ty had just been diagnosed.  I was obviously devastated, frightened and barely even able to comprehend what was happening to us.  It was a beautiful, sunny day, I took the boys out in the double stroller, they fell asleep and I made my way to the church as if guided by instinct (or maybe God was calling me there).  It was dark and damp inside and I cried my heart out begging for Ty to get through this.  Having no idea what this journey was going to be like.  Not knowing that I wouldn't even be living in Long Beach for much longer, and certainly never imagining that I would be holding Ty's memorial there just over two years later. 

Walking back into that church yesterday.  Seeing Father Donald.  Hearing him talk about how Ty and Gavin were baptized there and pointing to the very place where he poured water over their baby soft hair.  It was one of the hardest places to be, yet it also felt so very appropriate. 

It was near impossible to find the right words from the standard scripture packet that every family is handed when planning a funeral.  Nothing seems right when talking about a beautiful, five-year old boy who suffered so innocently, and died.  Because of this, we broke from tradition several times during mass and added some very beautiful readings on behalf of Ty.  Lou was so brave.  He gave a beautiful eulogy.  His words moved everyone in that room.  My sister read "The Brave Little Soul," by John Alessi.  Ty's Uncle Rich read a reading from the Gospel and Aunt Debi read "I Still Would Have Chosen You," by Terri Bannish.  Julia Larkin, a very special friend of ours who is more mature at the age of 15 than some are at the age of 50, performed the Taylor Swift song, "Ronan" and we had a slideshow of Ty's life in pictures.  She has a beautiful voice and she is just so talented.  Finally, Ty's cousins all gathered together at the alter to read the General Intercessions before the close of the mass.  It was all so beautiful. 

Afterward, we asked everyone to gather down at the oceanfront for a ceremonious distribution of Ty's ashes before the reception1.  In advance, a great friend worked with the City of Long Beach to make sure they would plow a clearing through the dunes to provide our group with easy access.  I was so grateful for this, and asked if she wouldn't mind going down to the beach before the church, and writing Ty's name in the sand so that it would be there when we all arrived.  Not only did she do that.... she went ahead a recruited an entire crew of our Long Beach friends to prepare the beachfront.  With incredible detail, they arranged for a beautiful display of everything TY. The kids painted sand dollars for Ty.  She framed photos.   I couldn't control the tears when I saw this.  The words "thank you" will never suffice. 

There were ladybug kites in the dunes.  Trails of sand dollars.  Ty's name written in huge letters by the seashore.  Gold balloons flying high.  It was so incredible and so perfect.  I know it was a lot of hard work and I was just blown away.  After taking in the beauty of this tribute, Lou and I asked everyone to move down to the seashore for another reading and to witness our distribution of Ty's ashes.  We asked everyone to place a flower by his name, as Julia sang a song she wrote just for Ty.  As soon as she posts the song to YouTube I will share with you all, it was just so amazing.  We poured Ty's ashes over his name and into the ocean, and we felt at peace knowing that all of it would be swept away later that day.  It was truly beautiful. 

At the reception I laughed, I cried and I hugged hundreds of loved ones.  We had a candy table in honor of Ty that was mind blowing.  It was two-tiered and twelve feet long!  We had pictures of him everywhere.  We asked everyone to write a message to Ty that Lou and I will put in the bottle and send off to sea when we return to Long Beach in June (after making copies of them to keep in his project treasure box).  It was, truly, a celebration.  And that is how it should be.  Ty's life was too beautiful, how could we not smile.  He brought so many wonderful people together.  Even his doctors and nurses were there and I was just so happy to see them. To see everyone.  There were friends I have made through this journey that I finally got to hug in person (Mary P.!)!  It was all so special. 

At night, when all was quiet, I had the giant canvas picture of Ty in our hotel room and I just let it all out.  I cried for what felt like hours.  Until my head throbbed, my eyes swelled shut and my lips felt like balloons.  When we woke up this morning, Lou and I simply couldn't bring ourselves to go home.  We took Gavin down to the beach, we walked around town, and we decided to stay one more night to just decompress from what was such an overwhelming experience.    I can't stop looking out the window, watching the waves roll in.  Knowing Ty is there, in those magical waters, under that humbling sunset, makes me cry, smile in awe of him, and just miss him oh so much. 

In his eulogy Lou said, "today we envy Ty" and that couldn't be more true.  Be free, baby boy.  Be happy.  Know how loved you are. 

Sunday, April 7, 2013

SU2C and St. Baldrick's: Truly the best news.

Lou and I have always been huge supporters of the St. Baldrick's Foundation.  They are a wonderful organization with a terrific story, and they do an incredible job with raising money for the cause, and making strategic funding decisions.  Upon creating our own foundation, we have been talking with them a lot to make sure we can work together toward our tremedous goals of uncovering better treatment options for children.

When we first heard that they were teaming up with Stand Up 2 Cancer to help fund the launch of their first ever "Dream Team" specific to pediatrics, I was overjoyed.  I posted about it here.  Ever since then I have been anxiously waiting to find out who was on the team, and what their reasearch was geared toward.  Tonight, Lou and I were honored to be there for this most exciting announcement.  When I received the press kit on my way in, I immediately began devouring the information before I even sat down.  I wanted to know if their initiatives are aligned with the goals of our foundation, and they most certainly are!  You will hear me talking about this a lot, I'm sure.  Pasted below is a link to an incredible video, followed by a link to the press release.

When I saw the headline about "genomics" and "immunotherapies"  I reached over the squeeze Lou's arm while pointing to the release so he could see.  This is everything we've been talking about.  It's everything we wanted for Ty.  Our battle cry.  The reason we are dedicated to raising awareness and funding for pediatric specific research.  Our interest lies so heavily in those two areas because we feel there is so much promise, and we are going to bed with a smile on our faces and peace in our hearts.  We are so happy to be part of all of this. 

I have so much more to share with you about the conference, the beautiful, amazing people we met from SU2C, St. Baldrick's, Cancer Treatment Centers of America, NIH and more.  Gavin is still awake in our hotel room and we will be taking him with us tomorrow morning to rally for increased medical research funding here in Washington DC, so I have to turn my attention to getting him to sleep.  I look forward to filling you in more tomorrow :)

Thursday, April 4, 2013

Locatelli, of course

I am not Italian, but my cousins are.  Growing up, I remember that they always had grated pecorino romano in their refrigerator and to be honest, I didn't get it.  Why put that stuff on your delicious pizza or casserole or whatever?  This, coming from a girl who ate noodles with butter instead of tomato sauce (which I now know to call "gravy").

Even though "Campbell" isn't technically an Italian name, my in-laws are truly Italian.  My Father-in-Law inherited the last name from a biological father he never met, but was raised by his 100% Italian mother, his 100% Italian step-father, and their family business was running a 100% Italian bakery in lower Manhattan.  Lou's mother?  As Italian as "La Cosa Nostra." 

So when we first got married and she gave me her recipe for the family meatballs and gravy, I thought, "how hard can it be?  Just follow the instructions."  Tons of meat, tomatoes, plenty of time to cook.  It wasn't until I had my hands deep in the chopped meat that I realized "some of this"... and "a little of that"... is very vague.  "Add breadcrumbs."  Ummm, how much?  "Add cheese"  Umm, again, how much?  What kind of cheese?  "Not too soft, not too hard."  Really?  I finally gave in and called her.  Over the course of the conversation I realized that she unintentionally <wink, wink> omitted the eggs from the recipe, Mama Barone style (Everybody Loves Raymond), and when I asked her what kind of cheese she answered "Locatelli, of course!" as if no other cheese even exists.  Mom - if you're reading this - you know I'm teasing and I love you like crazy :)   I'm so happy to have you and your wonderful recipes.

I went to the supermarket for the Locatelli, had to ask where to find it, and as soon as I saw the tub of grated cheese I recognized it from my cousin's house years ago!  Clearly it's an Italian thing.  Of course, I have converted and my refrigerator has never been without a tub of Locatelli since.  Just like my Aunt Janie converted when she married my Uncle Pete Zappulla!

I'm telling you this because Ty loved Nana's meatballs.  He loved Locatelli cheese!  He didn't eat macaroni and cheese, he ate pasta with Locatelli like a true Italian baby.  Tonight, when I was sprinkling some on my own leftover meatballs that Mom sent me home with last night, I pictured his little chubby fingers... how he used to insist on squeezing and crumbling all the little balls over his pasta.  He did that from the time he was one year old, for as long as his little body would let him.  I relish in the memory and I love that I will be able to see his hands every single time I use "sprinkle cheese" as he called it. 

I think we have a fan all the way in Sarajevo, too.  I wonder how Mely is coping without any Locatelli in Bosnia :)  She always made Ty's Ditalini noodles just right for him.  Over the last few months with Ty, he had a joke that he always played on me.  He would ask for me to make him "noo-noos" but then he wouldn't eat them!  I would get so frustrated.  Then Mely would come in and say "don't you dare eat my noodles!!!" and Ty would gobble up a mouthful.  He was always such a clown and a little prankster.  We all are.  I swear that little boy was made up of pure laughter stitched together with giggles on a string. 

Goodnight my little Goofball

Missing you both so so very much

Happy Birthday to my Granny in Heaven today.  She gave the best kisses.  Better than any other human on the planet.  Hope Ty is there to sing "Happy Berfday" to you.  But be careful, because he might use exploding candles on your cake just for a laugh :)

Great Video of Ty

I was watching some videos late night last night and I just had to share this with you all.  That face!! That voice!!  Love love love. 

CLICK HERE to watch SuperTy scoot :)

I actually had a good day today overall.  My sister-in-law, Debi, joined me in NYC for a seminar about event-planning and risk management for non-profit executives today.  There were a couple of presentations on the agenda that didn't apply to the TLC foundation, so we also snuck out to do some shopping for new charitable products we will be selling.  More on that soon!

However, on my way to pick her up it was crisp and cold but really sunny and beautiful outside.  I couldn't help but groan to myself and roll my eyes about the annoying, shiny, happy day ahead of us.  I was thinking sad thoughts and feeling grateful that at least it was winter after Ty passed away - because the weather matches my misery - while thinking how much I hate that Spring is here.  Tulips, birds, life renewed... I was just hating the idea of it!  Right in the middle of these dark thoughts, a bird flew right into my windshield.  Probably died :(  It made me feel like such a Scrooge.  Just my LUCK!  I will try not to hate Spring anymore, I promise (no guarantees, of course). 

Yesterday, Gavin told me that he wishes we had a family.  I told him we are a family, me, daddy and him and Ty in heaven. Then I asked him, "Why do you say that, do you wish you had another brother or sister?" and he said, "Yes.  I wish I had a new brother named Ty.  With spikey hair and a boo-boo on his head."  All I could say was, "me too."  Then, today he told me that he wants his whole family again.  He was riding in the back seat of my car and he said "because I like when Ty sits there, and Mely sits there!"  He was smiling, and just stated it very matter-of-factly.  He is my sweet boy and I feel so bad that he is lonely without his brother.  It breaks my already shattered/shredded/so-much-more-than-broken heart. 

We are taking him with us to DC this weekend to see his friend Luke (below) while Lou and I have some foundation business to take care of.  Looking forward to filling you in on some exciting announcements in the world of childhood cancer that are on the horizon. 

Goodnight to my sweet angel baby.  Love you all and thank you for your continued support!  XOXO.  Cindy