Tuesday, January 10, 2012

What angry meds? These are happy meds!

During our last day of school - just before Christmas break - I was an emotional wreck. Ty wasn't able to walk at all. He was so weak. No matter how hard I tried, I couldn't snap out of it and focus on circle time or story time or whatever was taking place. I did my best to hold back the tears in front of Ty and his classmates, but they came pouring down every time I had minute to stare at the wall, or look down at the floor. I was just so sad for Ty, and so scared.
Since then, Ty has been slowly improving.  My mental state has been slowly improving simultaneously.  But by slowly, I mean s...l...o...w...l..y...  All of this changed today. 

TODAY (!) Ty showed SIGNIFICANT improvement.  Lou and I are so thrilled.  At preschool this morning, his teacher asked me how his left side was doing.  I told her it was getting better very slowly, but that he has improved over the past few weeks.  Then I started to question myself as he began moving across the room more swiftly, as he was sliding down from his little chair onto his feet, as he walked all the way across the room with my help and as he used his left hand to hold down the paper while gluing.  Could this be right?  Is he that much stronger today or am I just overly excited over every little thing?  When the kids went out to the playground at the end of class, I was sure of it... Ty was so much stronger than even the day before!  He was walking well with much less assistance, and he can hold his left forearm up about three to four inches away from his body.  Just yesterday that arm rested limp at his side.  Woo Hoo!  Go SuperTy!  This is exactly what we hoped the steroids would accomplish.

As today progressed, his steroids kicked into high gear for the first time since we started this course.  I am happy to report, however, that he has not been overly grumpy at all today!  Instead, he has been in an incredibly good mood.  The kid won't stop talking (OMG!!!), he is in super hyper mode, but all is good.  He just wants to play, eat, play, eat, play... and party all night.  He has been eating pretzels, chocolate and apple juice all day, and we managed to reintroduce one new food... chicken.  He ate about 12 small pieces without any complaints.  I hope tomorrow follows suit!  Hopefully this will remind him of how much he used to like a variety of foods and slowly get over his fear of the different tastes and textures.   I keep trying to remind him about how much he loves bacon and yogurt and apple slices - but so far he is not convinced.  Tomorrow is another day. 

He had so much energy today, I was wiped out around 5PM.  I needed a short break from all of the noise and the constant Max and Ruby episodes in the background, and I came across the 1970s version of Dr. Seuss' "The Lorax" on DVR (I recorded it a while back).  I put it on for Ty, and was so happy when he agreed to sit quietly and watch it.  To my surprise and delight, that little four-year old boy really took it in.  He is amazing.  He couldn't understand why the villain kept cutting down the trees!  He was horrified, in fact, which makes me so proud.  He is such a sensitive, loving, perfect little boy.  I hope he never loses his passion for what is good and right. 

Sometimes I feel like the Lorax.  Rambling on about childhood cancer awareness and the need to fund new clinical trials.  I will forever be passionate about the cause, obviously, so I hope you don't mind my constant preaching.  Tomorrow, Lou and I hope to meet with our pediatric neurosurgeon at Weill Cornell to discuss a campaign for the institution that would leverage Ty's story.  We are very excited about this possibility and I will be sure to keep you all posted.  Together, we can find a cure for cancer.  
Goodnight everyone.  


  1. Hooray!

    I'm sorry for your tears and your eyes welling up. It's hard to imagine or realize how hard this is for you, but I feel closer to understanding just by reading the first paragraph tonight. Thank you for sharing. I am here for you.

  2. That's what I'm talkin bout!!
    I am glad Ty is eating more and different things!

    Prayers from Texas,

  3. A long while ago I wanted to send you this book... It is beautiful And sad yet I know when you put it under your "cindyscope" you will see both but believe one. I was at the library picking books out with the girls and Lara handed me this book and I started looking at and thought I want to give this to Cindy. Then I noticed it is by the same author of the fIrst book. My only decision is to send one or both! I hope you enjoy.

  4. Sending additional prayers for Ty so happy for you guys that those were answered.