Tonight I am overwhelmed by cancer and the unfairness of it all.  Not just for my family, but for all of us.  I don't think there is a person out there who hasn't been affected by this putrid disease.  Kelly should still have her mother to share her children with and ask questions.  My dad should still have his sister Mary to share his memories with.  Marshall and his three small children should still have his wife/their mommy, Stefanie. Chase should be able to play with his big brother Tanner.  Maya and Woody should have Ronan.  I could go on and on and on and on.  My friend Meghan is on my mind.  I want to call her so badly, but I can't risk waking up Ty (he is sleeping well).  During one of her visits with me and Ty at Sloan Kettering (we were roommates in Manhattan for a long time, and she still lives there), we went for coffee and she told me that her friend, Elizabeth Walker, was just diagnosed with Non-H...

Two nights ago, Ty woke up vomiting about 10 - 15 times.  It was terrible.  We were on top of all his medication and nothing had changed in his regimen.  There really is no other explanation other than the unpredictable nature of his neurological disease.  Last night, for example, he slept beautifully and didn't throw up once.  I felt so well rested today for the first time in a very long time.  I'm sure I'll ruin that by staying up until three or four tonight, only to be woken up by Ty soon after.  I hope not, but that would be par for the course.  I have insomnia so that certainly doesn't help.  Tonight?  So far, so good.  I heard something earlier in the night and ran in to check on him, but it was just hiccups!  Phew!  We'll see how it goes for the rest of the night.  This is what caring for Ty has been like for almost the entire duration of his journey.  We don't do anything different from one day to the n...

Some beautiful friends and neighbors gathered together to celebrate Ty's fifth birthday with a balloon launch.  It was a beautiful day, and Lou brought Gavin to participate in the fun.  I stayed home with Ty, of course, but all of the photos that have been shared helps us feel like we were right there with them.  It was such a thoughtful way to honor Ty.  150 balloons filled with wishes and prayers for Ty's healing were released.  The kids played some football and baseball. The Pawling Fire Department even brought in a fire truck. Thank you, everyone, so much, with an extra huge thanks to Mellissa.  You are doing so much to share Ty's story and to help us feel so loved in our community. Lou and Gavin at the launch Gavin in the truck :) On their way to heaven with a very important message Watch out! Gavin has the ball!  Super kids for Super Ty One neighbor even dropped off a video from the event and watc...

  Ty was back in my arms today and I still relish the feeling of having him there, holding him out to kiss his warm, soft neck over and over as we slowly walked around the house.  It's been a week since he wanted me to carry him around in any way.  Then today, when I told him I had to get something from the kitchen, he said "I want to come."  It was so hard for me to understand him, but when I finally figured out what he was saying I was overcome with excitement. It was a short walk, but so sweet.  It was just what I needed to lift my spirits.  After all, I have been carrying him on my hip since the day he was born - even more so since he became disabled - so I feel naked and incomplete when my arms are empty during the day.  It breaks my heart to see him just laying on the couch day in and day out.    We had a very quiet day, which is just what he needed to relax and find some zen.  He ...

On the wall in my kitchen hangs and erase board where I keep our family calendar.  It shows two months.  Right now, September and October are showing and it makes me sad every single time I look at it because I didn't know how sick Ty was when I filled in the blanks on September 1st.  Two more months of fun-filled adventures with Ty and Gavin.  Ty's BIRTHDAY!  Pumpkin picking!  The 10K in Brooklyn.  Mighty Mikey's St. Baldrick's event.  The FOJ walk across the Hudson brain tumor families.  The 'Tunnel to Towers' run in Manhattan.  We had so many plans.  Granted, after two years of "one thing after another" we are no stranger to canceled plans, but this time it is obviously so different.  Everything is a "last".  Every missed opportunity with Ty is one we can never do again in the future.  Yesterday was such a beautiful day.  The leaves are turning and I remembered how we would take Ty and Gavin for a ...

Today was a rough day for Ty, which is so unfair.  Lou and I woke up so sure it was going to be the best birthday ever!  It had to be, right?  We couldn't wait to see his face when he saw his gifts, his Grandma and Pop-pop, Nana and Papa.  All of his favorite people.  We wanted nothing but the greatest day for him.  On a positive note, there were so many beautiful things that happened today.  Let me just begin by saying how grateful Lou and I are for all of the generous donations to Ty's foundation and the upcoming 10K, the Ty shout-out on Good Day New York this morning!! (that was so special), the powerful prayer chain, the amazing gifts that were delivered to our doorstep, the fun filled packages and the heartfelt birthday wishes. The birthday wishes started at sunrise and my phone continues to beep non-stop with new messages.  Amazing.  Thank you.  It's after 1AM and I'm just settling down, but of course I...

  By the time I finish writing this post, it will be Ty's birthday.  Sorry, cancer, he did it again.  SuperTy continues to beat the odds.  We all know that Ty wasn't supposed to be here, but he is.  On this day, five years ago, our little fighter was born and he is still with us - fighting hard. TY IS BORN!! (4 weeks old) Perfection.  My heart exploded with love on this day.  Burst wide open.  And now I spend my sleepless nights filling virtual page after virtual page to try and express that love and just how much it hurts to watch our baby boy fight this fight.  He was our first born, so naturally we took tons of pictures.  Thank God for that.  We cherish each and every one.  When a child is sick like this, every birthday, every holiday, every "first" is that much more meaningful.  Over the past two years, Lou and I have celebrated every birthday thinking, "this may be his last, so let's make sur...

I just received this adorable photo of Ty in an email from a friend.  He was at a barbecue the summer of his diagnosis and she had a bunch of photos that I've never seen.  This was the nicest surprise.  He is the best boy in the world, and he's still the kid that everyone wants to kiss :)  Lou and I keep having these conversations about our plans for Ty after he dies.  So many details that no one in our shoes should ever have to think about because no kid should die from cancer.  These conversations are necessary and horrific and very, very surreal.  From the beginning we decided we would cremate his beautiful body instead of embalming, but good God, either option is utterly unthinkable - isn't it?  I created that body.  All of him is part of me.  We know that we need to have Ty with us, always. We will keep him in our bedroom because we've never slept apart from him since the day he was born...

Today is the last day of September, marking the close to Childhood Cancer Awareness month.  I think it's great that there is more attention for the kids during September, but it's also disheartening that we haven't made more of an impact so that people are aware every day of the year. Since Ty was diagnosed in 2010, however, I have seen improvements.  I have seen social media leveraged to a much higher degree, and I have seen more and more attention in mainstream media. I feel like we are on the verge of making a difference, and I am excited about that.  Then my excitement turns to pure disgust when I can't escape the fact that my almost five-year old boy is lying on the couch dying a little bit more with each passing day.  I'm kicked in the stomach by a steel tipped boot with the horrifying thought of "too little, too late."  It may be too late to save Ty, but I will never stop trying to spread awareness by sharing his story. His long...

I used to be the girl with the big, ever-present smile. All my life, I have been complimented for that.   Whenever I meet new friends, business colleagues, teachers or sales associates, they would often tell me that I have a great smile.    I believe that's because I was always so easily humored in every day things, and I lived a genuinely happy life.   I love to laugh.   I think I used to smile so much because it is contagious and it feels good when people smile back. Ty gets his smile from me.   He is exactly the same.   He laughs so easily and I have no doubt that he would live his life with a huge, sh*t-eating grin on his face all the time.  He always has.  Goofballs. A few people have asked.  Ty's eyes are green (it's always hard to tell in pictures)   I don't think I'll be that person again because I'm so broken now. I'm a better person because of Ty, but if he leaves me behind he wil...

"The best good boy in the whole wide world" is a silly nickname that Lou and I have been calling Ty forever.  We actually have a totally goofball song that we sing where we ask Ty "who's the best good boy in the whole wide world?" and he answers "me!"  We get louder and louder and it can always make him smile when he ends it with a scream... "MEEE!"  He has been sleeping most of today, and I like to imagine he is having sweet dreams, literally, since we all know how excited he gets over candy.  Waiting and watching our beautiful boy sleep is so painfully beautiful.  While he sleeps we sit and run our hands over his soft, delicious hair, our finger slides down his warm, pink cheek, and we kiss him on those billowy, heart-shaped lips of his over and over like we've been doing since the day he born.  I am constantly checking the temperature of his hands and feet to make sure they aren't getting cold.  Several people have told me that i...