Thursday, March 3, 2011

Radiation begins tomorrow

My Ty.  He is doing very well today.  I have a love hate relationship with the steroids because they work wonders on his neurological condition while destroying his muscle function and bringing on major mood swings.  He is speaking so much better today, he is able to eat and drink and he has been relatively happy all day.  His nausea has also subsided, as did his headpain (thank God).  Here he is enjoying his pizza and taking big boy bites instead of having me cut it up into teeny tiny pieces like I have had to do in the past.

He has made me smile so many times today, but we also had some difficult times throughout the day when we can't understand what he's trying to say.  Today he said something over and over and over again that sounded like "I want may-doe".  We took turns guessing at what he wants... "tomatoes?... play-doh?... you want to play with those?..."  We asked him, "is it something to eat? something to play? something to watch on TV?" and he answered "no... no... no"  Turns out it was something to eat.  It was a bagel.  It went on for almost 20 minutes before Lou finally guessed it.  It was so frustrating for all of us, especially Ty.  Let me just say, though, that his speech is SO much better than it was for the past two-three days.  He really has bounced back and it is so great. 

Ty had his radiation simulation this morning and he begins treatment first thing tomorrow.  They wanted to get in a session prior to the weekend so he will be getting lateral radiation (which is more simplified than the IMRT regimen that is scheduled to begin next week).  Although the long term side effects of lateral radiation are dangerous, we agreed to allow him to undergo a few sessions in the essence of time rather than wait until the IMRT planning is complete (which takes six days in the office of the neurophysicists).  It's really very interesting.  It's such a precise science that is constantly improving.  I am very hopeful about what they can do, and I have a lot of confidence in his radio-oncologist.  Ty is in very good hands here. 

Looking forward to his next big step.  Let the healing begin!  Here is a photo of Ty when he was just one year old.  I just came across it today and it made me smile because he looks like such a bruiser.  He had a fighting spirit even then :) 


  1. What an adorable picture of Ty. Good luck tomorrow. I'm praying for all of you. Please let me know if there is anything I can do for you at home while you are at the hospital. xoxo,

  2. He's gonna be the next Rocky! Good luck tomorrow and over the wkd. Prayers and positive thoughts constantly going out from L.I.! Xoxoxo

  3. You and your family have an inspirational attitude and outlook, you should be so proud. Every night after I put my 2 year old little boy to bed, I run to your blog to get Ty's latest update. You have made a difference in my life. It is because of your blog that I try to relish every second I have with my little boy. Thank you for making me stop and smell the roses. I haven't figured out how I'm going to do it but I would like to pay forward what your family has done for our family. Thank you for sharing your heart, your son, your family. I pray for your family with everything that is in me.

  4. Wow, look at that slice of Pizza! Yummy, how I miss NY pizza Ty! :) I truly do not know what I would have done if I was in Lou and your shoes. I think you two are absolutely strong and incredible. I'm telling you, 99.9% of us would have fallen to pieces, but your family continues to flourish, day in and day out. I think Ty is so lucky to have parents like the two of you, and you two are so lucky to have Ty, which I know you two already know! Things have to get better for you, they must.

    When things happen like this, I question god. Why would he let something like this happen to a little boy. I would get weak, you guys stay strong.

    Your family, in the past few weeks, has changed my life, the way I live it, and the choices I make. My business burnt down to the ground the 19th and I have been devestated, attempting to put it back together. Thankfully no one was hurt, because my 3 year old son was in the office at the time. So as everything goes wrong with my new location, I get upset, I cant believe my life, blah blah blah. But then I think of your family, I think of Ty, and I say Joy, are you really getting upset over this? I have a lot of nerve getting upset or stressed over little things, when there are people out there that have a child that is sick. You really have made me step back, look at my life and realize what is truly important, the little things to cherish with my children.

    I wish you all the best today, and I have a good feeling that everything is going to work out, it just has to. I am keeping everything crossed for Ty today! He is such an inspiration to everyone. Your 3 year old little boy and your family, has truly changed my life. :) That means something. . .

    Joy Marielle
    Baltimore, MD

  5. I just wanted to say how amazing I think you are. As a mom, I can only imagine what you're going through. The way you keep it together and always can see the positive is truly inspirational. I have been trying not to sweat the small stuff because I know I should really count my blessings. My prayers and good wishes go out to your beautiful baby boy..... what a trooper he has been through all of this! May the radiation kill all of the bad cells and make him well again!

    Krystal Gallagher
    Pleasant Valley, NY

  6. I wanted to tell you that I am praying for Ty and your family. Jesus Christ is all powerful and he has you and your son in His hands. I am praying that you will feel His Peace. Please know that you being prayed for and miracles never cease!

    God bless you!

  7. Ty is so adorable and his strength amazes me! Lots of prayers coming your way as you begin the next leg of your journey.
    Memphis, TN

  8. we are sooo happy to hear how greatly Ty has recuperated from his HUGE operation. We know that through the power of prayer from all on and offline will never cease.

    We are so happy you, Ty and Lou are not giving cancer the break to grow.

    IDEA: maybe you can get or make flash cards with pictures and words so he can point as he says the word. Ty is a VERY BRIGHT kid, he will learn words VERY FAST as he learns.

    We love you!

    With love and patience, nothing is impossible.
    Daisaku Ikeda

  9. I love this boy so much. I think of him countless times through-out the day, my day progress via this blog, Facebook or whatever.
    He is in my prayers every night, your whole family is. The love you all have and strength emanates. God Bless You All.
    I hope today went well,... please keep us posted.


    Dana Castellano

  10. I'm jealous of that pizza. Gimme a bite!!! I want a bagel too!!!

  11. WOW Ty that Pizza is almost as big as you, but I bet it sure was good! You keep eating pizza like that and you will get bigger and stronger in no time at all. Hoping that you had a good day, stay strong little buddy and know that I am thinking and praying for you, Gavin, and your Mom & Dad too. (Hugs)