Sunday, January 16, 2011

I'm ready to get off...

...can someone stop the roller coaster? I'm nauseous, I'm tired, my back hurts and I'm dizzy with anxiety.

We are home. Ty's shunt replacement was successful and it is believed to be working properly (although, we've been told that before). We hope to see vast improvements over the next several days as far as pain and nausea goes, but as of right now Ty remains pretty weak and very sleepy. I have been thinking ahead of all the wonderful things I want him to enjoy when he feels better, but in the back of my mind I have a tremendous fear... What if he doesn't improve? If he has lepto-meningial disease - and many of the doctors on tumor board still believe he does despite the improved scans - then the hydrocephalus may be a side effect that will never improve. I am scared and excited at the same time which pretty much equates to a constant feeling of anxiety. Then again, that's nothing new :)

Tomorrow I will take him back to Cornell for a quick CT scan so the neurosurgery team can compare with his pre and post op scans from two days ago. Again, I beg of you to think of us, send us your positivity and keep Ty in your prayers. Thank you so much!

I have so many adorable new pictures to share. Hopefully I will find time to post over the next couple of days. In the meantime, enjoy these hugs and kisses from Ty...

XOXOXO and a big "m-wah!"

P.S. It was brought to my attention that I need to clarify something. When we received the good news about Ty's MRI and I published a post entitled "the gloves are coming off," I didn't mean the fight was over by any means. Ty still has cancer and his original tumor remains a major threat. I meant that the gloves are coming off because it's time to fight dirty... To go bare-knuckled... To switch over to street fighting mode because that's how tough my little fighter is :). That's not to say that the news about his MRI is anything short of miraculous, I just didn't mean for it to sound as though the fight was over. It was a huge victory, but we have several more rounds ahead.


  1. cindy i read your post everynight pray for you and love you.

  2. Cindy and Lou,
    I don't know how to get in touch with you so I hope you don't mind that I am posting here. My name is Ginger and I live in your neighborhood. I am a nurse specialized in oncology with many years spent working at Sloan Kettering and now here in Westchester. I want to be able to help you in any way I can; if you need me to do IV medications, check on Ty's status, babysit, grocery shop...anything I can do would be an honor. I know that Marilyn gave you my phone number...please call me at anytime...I'm up all hours of the night...I have been reading your posts and following Ty's fight. My family is praying for Ty and your family and always sending you our love...

  3. sending Ty lots of love and hope today.

  4. Cindy,

    I hope all goes well with today's CT scans and that the roller coaster slows down for a little while for you to catch your breath.

    continously in our prayers,

  5. WOW!

    Cindy, life IS a roller coaster, you guys are in the hardest one, along with many beautiful people. It is a special ride given to those who are special and closest to GOD. You are witness of the unconditional LOVE human beings have. Need a sample, read above, Ginger, THANK YOU! We are sooo far and not knowledgeable, you are part of God's gift to Ty, Cindy, Lou, Gavin, and all of the family near and far.

    Cindy, trust and hope. We will continue sending one of the best dizziness medicine for your roller coaster: it is PRAYER, LOVE, HOPE & HAPPINESS. One day at a a time. Once all is done, you will see how this time spent with precious Ty has been a special one. Trust in Jesus and ask Mary to give you her patience and intercession.

    We love you! A BIG WARM hug and kisses from your cousins in Puerto Rico.

    A gentle massage can activate the receptors in skin that release endorphins, the body's own feel-good hormones.

    Dance your way to hope - try flamenco, jive, or belly dancing.

    Be aware of the doors opening and walk through them.

  6. Sweetie I'm so sorry. This is just terrible. I wish I could make the roller coaster stop for you.

    I pray every day and think of you guys all the time. I love you so much. xoxoxoxoxoxo

  7. Sending lots of prayers to your little boy and your family.

  8. I found my way here somehow tonight and I've read every single post. I feel like I know your amazing little Ty. I have prayed for him and I will keep on. And I'm wishing you many more happy "normal" moments. Bless you!