Thursday, May 12, 2011

"I don't want go hop-widdle!"

Ty is so smart.  He hears me say that I'm putting bags in the car or he hears me say something about his doctors and he immediately whines "I don't want go hop-widdle!"  I've been pretty successful at distracting him every time this happened today, but I know that he knows. 

The new plan, as we were informed by his doctors just yesterday, is to replace his shunt simultaneously during chemotherapy treatment.  The team felt an infection could be catastrophic so they suggested we take the most conservative route to avoid that at all costs. We will be leaving at 4:30AM for a 6AM check-in at the hospital.  An OR is booked first thing in the morning at Memorial Sloan Kettering, where his neurosurgeon will remove the VP shunt that we suspect may be infected, and place an external drain in his ventricles.  That means he will have a tube that is outside on top of his head for several days in order to allow for any lingering bacteria to be completely cleared in the CSF before placing new hardware.  On that same day, Ty will be given his chemotherapy treatment via a 24-hour infusion.  After a short but aggressive course of antibiotics, a new VP shunt will be placed on either Monday or Tuesday - before Ty's counts drop as a result of the chemotherapy.  This is a very important factor to consider, because if Ty's platelets and white blood cell counts were to drop before his new shunt could be placed, surgery would be out of the question and he would be at an extremely high risk for infection given the open access to his brain when the tubing is externalized.  His oncologist has assured us that he does not expect Ty's numbers to drop until two weeks after the infustion, but I am a nervous wreck over the "what-if."  Ty's history proves to be very unpredictable, but I have to just trust them on this one.  Not easy, but okay. 

I hate that we have to do this, but I pray that this time everything goes smoothly for a change. It will.  It has to.  Now... how can I possibly sleep when I need to wake up in 3 hours?  I have completely disinfected the house in the hopes that we will be home by mid-week next week and Ty will be immuno-compromised.  I have packed several bags filled with all of his favorite pjs, snacks, games, etc., and I uploaded some photos and videos among other chores to keep me busy while I'm at the hospital.  Here are three cute clips: Ty getting stronger... Ty loves ice cream like a big hungry bear... and Ty loves you, bye bye :)  Enjoy!  And, as always, a thousand thanks for your continued thoughts and prayers. 

Ty getting stronger (taken two weeks ago, today he can lift his left arm unassisted)...

video

Ty loves ice cream like a big, hungry bear!

video

Ty says "I wub you"

video

18 comments:

  1. We are all thinking of you guys today and everyday!!! We hope everything goes smoothly!!

    Stay strong!!!!! Beat that cancer up Super TY, you can do this!!

    Love and prayers!!
    Brooke, Emily, Eric & Owen <3 <3 <3 :0 )

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  2. Thank you for allowing us to go thru this journey with your incredible family. You all continue to amaze me....I pray for Ty every night and several times during the day. I believe that positive thinking can make all the difference. I wish I could hug all of you and make it all better. Just know that there are soo many of us pulling for you. TY YOU AMAZE ME!!!!

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  3. Those videos are so precious; Ty has to be the cuties kids ever. The videos make me question how long the effects of steroids last though. If it's taken 2 weeks to be able to lift both arms, how long before he can do other things? It must make him so proud to be getting some functionality back.

    I know he will be back in the hospital for more treatments but he will get past that as well. He is so inspiring because he keeps getting past all hurdles put in front of him. I can tell from your posts that he is such a strong willed boy. Keep it up Ty!

    Hugs, kisses, love and lots of prayers from Canada.

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  4. Wow---I gotta remember not to look at these videos at work---people are wondering why I'm crying!!! They are absolutely precious as is Ty. Go SuperTY!!! You can beat up this cancer!!!
    Love from Charlotte, NC

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  5. I got through maybe 3 sec. of the first video and I had to shut it down for now.....I am at work and boo-hooing! Ty sounds SO sweet!! He always melts my heart hearing his little voice. I like to try to read your posts w/in the first hour of getting to work every morning and most of the time I have to read them in intervals of time so I can get through w/out being a complete mess.

    I am praying, hoping, and wishing that today and the next few wks. go smoothly for Ty and all of y'all.

    Y'all will be on my mind all day today, as you are EVERY day.

    I love y'all,
    Jan
    Georgia

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  6. ON MY KNEES EVERYDAY FOR YOU TY! I will not stop, ever!

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  7. Cindy & Lou,

    Will be thinking of you guys all day today! I know he can get through this! :)

    Team Ty :)

    Joy Marielle
    Baltimore, MD

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  8. The moment I watched the first video tears welled up my eyes! Ty is such a brave and wonderful boy, he is in my thoughts every day and the first thing I think when I start my computer is "let me check how Ty is doing today"!

    I wish you all the best for his treatment and that everything will be perfectly fine concerning the replacement of his shunt!

    Go SuperTy!!

    Warmest hugs,

    Beate from Germany

    (Sorry, there was a spelling mistake in my first post!)

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  9. What a precious and beautiful boy!!! Those videos made me cry as well and I'm praying everyday for Ty and for his family. God bless you all. I truly believe in the power of prayer and positive thinking. Go Ty ♥ Debbie in Brooklyn

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  10. Cindy I just wanted to tell you that you have helped make me a stronger person. I've been going through some mental and physical illnesses and just reading your words helps make me stronger...so I'm praying for Ty everyday and in turn it's helping me....Love from Debbie in brooklyn....I feel like we know each other just through reading your blog.

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  11. Sending many many prayers your way today and everyday. Hoping for a success procedure and quick recovery for Ty!


    ~Jessica
    Lots of Love from IL

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  12. Just watched the videos and I am BAWLING because of how absolutely precious Ty is. I could just eat him up. I check your blog every day, and we are praying hard here in Maryland.

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  13. These are truly the most precious videos I have ever seen!!! Thank you so much for sharing them with us. I have been thinking about Ty all day and I will send many prayers your way today. Cindy, I want to thank you for sharing your life with us. I also have a 3 year old, he's about 3 months younger than Ty. I have become a better mother because of you. Things that would normally upset me or make me mad.. now I just stop and tell myself, this isn't that big of a deal, life is too precious to get upset over this. Your story has made me appreciate life so much more, and I thank you from the bottom of my heart. Ty has been so strong and determined thru out this whole ordeal, that I have to believe he is going to survive this and that God has huge plans for him. I'm sending all my love and as many prayers as I can to your family today.

    Love always,
    The Bonesteel Family

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  14. Sending some strength through prayer your way as Ty begins the next round of his fight.

    Always in your corner!
    Bridget
    Memphis, TN

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  15. These videos are so cute, thank you for sharing. Ty is just so adorable. I'm praying for you as you enter this next round.

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  16. Ty, you are the cutest thing in the WHOLE WORLD. You're so courageous and strong. Charlie, Rachel, CJ, Johnny, Luke, and Jake WUB you very much. Get better, buddy. Keep fighting!

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  17. Cindy - Nothing I can say. Ty has all my thoughts and prayers. Your strength amazes me. Stay strong, my friend.

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  18. Sooooooooo cute!

    I love you guys! Hang in there, YOU HAVE A PLAN! And God is with you in this road along with the doctors!

    We send you ALL of our LOVE, FAITH and PRAYERS!

    THE BEST OF LUCK TO THAT CUTTIE PIE!

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