Showing posts from August, 2012

Ty can't run - Maybe you can? PART 2

Our next run to fund childhood brain tumor research is set for October 13th in Prospect Park, Brooklyn.  It is a 10K that we are doing along with Elizabeth's Hope ( ) in honor of Ty and Elizabeth Minter, a beautiful girl who lost her battle to rare pediatric brain tumors just months ago.  I have detailed instructions on how to join Ty's team and begin your fundraising efforts.  Please email us at and I will share those details with you.  As always, there is no minimum fundraising requirement and we welcome everyone and anyone to join us.  The more the better!  We had such an impressive group at the 5K in July and we would love to have even more this time around!  September is Childhood Cancer Awareness month.  A perfect time to do something for the cause!  WATCH THIS I am so inspired by this video that was posted by another Cancer Mom yesterday.  This man's cause is Cystic Fibrosis, ours is childhood cancer, but rega

Kicking Cancer's Butt

Look at this incredible video of Ty kicking the seat in front of him in my car.  This is from yesterday afternoon.  He is finally feeling better and making some great progress!  This afternoon I convinced him to come in the pool with me again, and he was moving his arms and legs so much.  I saw a lot of his stomach muscles working hard, too.  I am so proud.  CLICK HERE TO SEE HIM IN ACTION September is Childhood Cancer Awareness month.  You'll be hearing a lot from me starting Saturday.  Please help us to spread awareness.  Photo Credit: People Against Childhood Cancer

Healing hurts

I know I have said that this whole journey has been such a roller coaster, but it's been quite a while since we had such tremendous ups and downs over the course of just a few days.  I guess it's just a reminder to us that we are still on board with plenty of dips, turns and loop-dee-loops ahead. I felt like I was on the crazy train instead of a roller coaster this time, though.  Lack of sleep makes me lose my mind almost as bad as Ty lost his on Tuesday night/Wednesday morning.  I waited to share any updates because I didn't want to worry you all!  Today I am fine.  Yesterday was a very good day, too.  We are getting back to normal in so many ways.  I will quickly retrace the course of the past few days to loop you in on Ty's progress. On Wednesday I was up and caring for Ty and Gavin on about 45 minutes of solid sleep.  Ty had terrible head pain throughout the entire day... and it had been getting progressively worse over the course of two weeks.  I noticed he was
6:15 a.m.  That's what time he finally fell asleep.  Gavin up since 7.  How will Lou and I get through the day!?

Up all night

We had a good day at the hospital today.  It was very long, as usual, but Ty was feeling good - and he had a bed today which always helps because he is just that much more comfortable. In response to his increasing head pain, the team ordered a quick CT to make sure his ventricles aren't enlarged and to look for any potential sides of a brain bleed.  The scan looked fine, so that's good, but of course it leaves us wondering why.   It's still concerning to all of us.  We are going to increase his neurontin to see if that helps at all (especially because Ty is experiencing pain in his feet which is likely neuropathic).  We may also end up pushing up his next scheduled MRI if it worsens.  Right now he is scheduled for early September, but we will likely do it sooner. The real update for today lies in the fact that Ty and I are still awake, sitting on the couch at 2:30 in the morning.  He hasn't slept a wink and he is hallucinating.  Let me explain why.  We had a cons

Pain, pain go away

Vacation is certainly over.  Ty is suffering.  He has been experiencing headaches for several weeks now, in fact I discussed it with his doctor at clinic two weeks ago, but it has been increasing in frequency and severity.  I am so sad and so sorry for him.  He cried so much today.  Sometimes he just screams for me from across the room and there's nothing I can do.  The only blessing in all of this is that they don't tend to last more than two minutes or so... but during those minutes time stands still. I try so hard to heal him.  I put my lips to his head and I imagine transferring all of his pain so I can suffer through the headache.  It sounds silly, but I try to imagine sending healing energy and light from my forehead to his.  I whisper to him and I kiss him over and over and over again as I run my fingers through his hair as it begins to sweat from the pain.  I even starting softly singing the stupid song "pain, pain go away" instead of "rain, rain go awa

Ty the fisherman

“Celebrating” the second anniversary of Ty’s diagnosis has been very hard.  It hasn’t been much of a celebration at all, rather, it is an exercise in coming to terms and accepting that two years later we are in a more difficult place than we were the same time last year, and we have a very, very long road ahead.  Being at the lake for our annual family trip has been a beautiful getaway, but we can’t escape the fact that Ty is unable to participate in 95% of the activities that his brother and cousins are enjoying.  They run around the house like crazy.  They go tubing and some of them tried waterskiing.  Today they are at an amusement park with waterslides while Ty and Gavin are stuck indoors watching TV.   Ty gets upset and doesn’t last very long if we bring him outside, and on the boat he usually cries and complains that it’s “too bumpy.” Last year when we were here I remember thinking how hard it was because Ty was recovering from so much trauma (he had just put his radiation trea

This is our story

August 11, 2012.  How can it be two years later?  Two whole years!  And how much has happened in those two years, my God.  I have been keeping track of Ty's journey in a document saved on my computer.  It includes a timeline of events and almost an abridged version of this blog.  The one thing I don't think I've ever included here, though (in such detail, anyway) is what I wrote about the day Ty was diagnosed.  It was exactly two years ago from today and I just want to reflect.  I realize it may be too long to read through - but at the very least please scroll down and view the compilation video I created via YouTube.  You can't watch it from a mobile device (I think because of the rights on the song) so please, please, please watch from your laptop or desktop when you can. And feel free to share!  I love it and I hope you do too.  It is my love song to the greatest love of my life.  My Ty.  Ty was a rambunctious toddler with curly blonde hair and an infectious smile.

Last Day!

Ty entering the chamber for the last time I just kissed Ty goodbye as he was rolled into the hyperbaric oxygen chamber for the last time.  I am so happy.  He did it!  Look at the smile on his face.  Oh, and the haircut, too!  So handsome.  I'm a very proud momma.  Of course, he started to cry some crocodile tears as game time approached.  "I scared," he whined.  I just smiled and said, "C'mon, Ty!  After sixty times, you know the drill.  Everything is going to be fine."  I can't believe we have been doing this since his very first treatment on April 19th. As I was racing to the hospital this morning, late as usual, I was imagining how I would probably get pulled over for speeding.  After all this time, I expected it on our last day - especially knowing how often "Murphy's Law" tends to interrupt my daily life.  Alas, I was lucky for a change!  We arrived on time, no speeding tickets.  It was actually a pleasant commute this mornin

Loooong Monday

Yesterday was a long and boring day.  I will try not to bore you with too many details, but since we spent the majority of the day at the hospital after oxygen for a regular check-up and infusion, I think it's time to share some medical updates. First, Ty is almost done with oxygen therapy.  Thursday is our last day.  He was SO upset in the chamber yesterday, he cried for me almost the entire time (he is in for two hours every morning).  It makes me sad that it never got any easier for him.  In fact, he seems to be fighting me more and more as treatment is coming to an end - which I take as a good sign because he must be feeling better if he can put up such a fight!  You should have heard him screaming as they were closing the door this morning.  Yelling, "Take me back outside!!" over and over again.  This is not the boy who barely had the strength to whisper when we began.  I have the team here at Phelps Memorial Hospital to thank for that.  For not being afraid to tak

Go Team GO!!!

Pan-Mass 186 miles on a bike in two days.  That's how Team SuperTy is spending the weekend, all because of him.  I can't even imagine.   You may recall that last year Lou's sister, Debi, trained alongside him to run the NYC marathon for Fred's Team - raising thousands of dollars for pediatric cancer research.  This year, she decided to push herself, yet again, but on a bicycle.  She is joined by two great friends of ours, Chris Larkin and John Dimase.  Lou and I (and our entire family) are just so thankful.  Go Team Go!  Here is a post from Debi's facebook yesterday.  She truly amazes me.  Be inspired:   So today is the big day! John Dimase, Chris Larkin and I will begin our Pan Mass Challenge in Wellesley, MA and bicycle 84 miles to Bourne! We will shower in trailers and sleep in a tent! I love an adventure and I'm just so excited! It's such an inspiration to be surrounded by so many people who want to make a difference and put an end to Cancer!
During our morning drive, I couldn't stop watching Ty through the rear view mirror. He is just so beautiful.  He looks so good, too!  I was picturing the baby that he was before cancer, and was in awe at the big, almost-five-year-old boy in the reflection today.  I am the luckiest person alive because I am his mommy.  He is the love of my life.  I could stare at him for hours and hours and hours.  Please pray that he stays with us, that he remains cancer-free forever and that he fully recovers from all the brain trauma he has suffered.  Like I said the other day, the sky is the limit! As thankful as I am to have him, I am also so sad all the time.  Always so sad because of how unfair all of this is.  Our whole family has been robbed of so much, even Gavin. Lou and I wanted to have our babies close together so that they would grow up close.  We wanted them to be the best of friends and to enjoy growing up together.  These pictures were taken in the Spring of 2010.  When life was