Monday, February 28, 2011

TICK TOCK

Lou and I are so anxious to begin treatment, we want to jump out of our skin.  Poor Ty is just not doing well, and we are filled with horrifying thoughts of this evil tumor growing back fast and furiously before we even have a chance to treat it.  I know things are happening at the tumor site because Ty complained that his tongue felt numb today and his speech is extremely low and getting more slurred with each passing day.  It's so frustrating for all of us when he is trying to tell us something and we can't understand.  We usually figure it out, but it can take a while and it can be upsetting at times. 

Tomorrow we return to Sloan Kettering to discuss radiation therapy as a next step, with a low dose chemotherapy regimen happening simultaneously.  Boston will be discussing his case on Thursday, but we don't want to lose any time at Sloan if it turns out that Ty isn't a strong candidate for Proton Beam.  If that's the case, we will sooner stay in New York and begin ASAP. 

In the meantime, Ty is surrounded with love.  He returned from the hospital on Friday to a package that included a beautiful handknitted elephant that Ty named "Humphrey" and he received a bunch of new arts and crafts from friends over the weekend and in another fun care package he today.  Here he has a cold pack on his head and is surrounded by just a few of them.  Today was a terrible day, he slept most of the time and had a lot of headaches, but when Lou returned home from work and brought in his package full of goodies, he asked to color in one of his crafts... something he hasn't had the energy to do in weeks.  That one will definitely be going in Daddy's keepsake box.  Iwas very special seeing him with a marker in his hands again and the final product was pretty good, considering.  Slowly he will continue to turn around, I know he will. 


God bless and good night. 

14 comments:

  1. Praying for a rapid decision from Boston today. Keep strong, girl. Ty is lucky to have such a strong mommy. I don't know how you do it. call if you need anything.

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  2. Hang in there Ty, you have to get better and beat this. There are so many people praying for you, so many that love you and care about you everyday. Keep up the fight.

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  3. Cindy...I was hoping to get you and your hubby a little time to yourselves. Maybe you two can catch some dinner and have some time alone and I can come up and sit with the kids. I think Ty would be comfortable with me there and I can give him any medication or attention he needs from a nursing perspective, and all the care and love from a mother's perspective. (and, you would be very close by having dinner if you felt the need to come home..etc etc. I am off today and tomorrow...so if you want to have a nice glass of wine and some dinner tonight before you have to go to Sloan tomorrow...please please please call me. It would be such an honor. Also, of course, if you need me to do anything I am always here. We are always praying for Ty and your family, sending our love and positive thoughts, and anxiously awaiting your updates. God bless all of you...Love Ginger and the Ragusa Klan

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  4. my heart is breaking for all of you. i'm praying for ty...what a beautiful, amazing little soul. God bless you all.

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  5. As I have said in several of my previous comments, I just can't stop thinking of y'all. The pic you posted last night was so sweet. Ty is just incredible! I am really hoping Ty feels some better today! :)

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  6. Praying for your baby boy & you all. I've been reading, and my breaks for you. Your strength & faith is amazing. You are all so blessed--you to have Ty, Ty to have you. Thank you for keeping us readers updated on this journey you are on.

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  7. Hi Cindy, I would definitely consider using Ginger as a babysitter! You wouldn't get better medical care ! I can assure you! ASk her about all the times she has come to my rescue... the best was my broken toe that was hanging perpendicular off my foot, I am sure she would much prefer spending her time with your sweet children. You should really take her up on it ! ;-) I would love to even come as well and read books to the kids, they are so cute and Gavin is hysterical in those photos with the food all over his face. what a little ham. I hope your meeting goes well tomorrow. I am so glad that Ty found some enjoyment with his care packages.. he is such a trooper and I hope that you get some answers soon. So pick up the phone and call Ginger !!! Marilyn

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  8. Praying for your family. I think about Ty all the time and hope that he is doing well. Stay strong and god bless you all...sending positive vibes your way.

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  9. What a gorgeous little man you have there, that picture is heartbreakingly beautiful in so many ways. All the best of care to you all!

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  10. Cindy:

    You have an angel in your care. Stay strong, God is by your side. Trust in Him. I know these days are hard, but know that we ALL are praying for you.

    On the other hand, if you can get guanabana juice or even better the fruit. It has special properties to combat cancer! And it tastes super!

    We give thanks that the surgery went well and we give THANKS for the healing process and the great Doctors you will meet. Positive vibrations ALWAYS!!

    Remember:
    If you can't feel hope, it's time to create some.

    Hope is the foundation of all healing.

    We love you all!

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  11. Cindy, you said the most important and powerful words..that you know Ty will turn around. As he does, he is surrounded by seen and unseen love, hope, faith and belief.

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  12. Praying for the right treatment course, our miracle and better days. I love you.

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  13. I pray for Ty and your family every night. I think that you have a strong little boy that is going to beat all the odds. Never give up! Every night I put my 3 year old son Alex to bed, I jump on the computer to check on your beautiful brave little boy. I am keeping my fingers crossed that everything goes well! Your family is forever in my heart.

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  14. You do not know me, Cindy, but ever since your story appeared on the AOL newsline, I have been following your posts. Many years ago I went through a similar experience with my son, Tyler. I remember feeling so alone, frustrated that everyone's world kept rolling along while ours had come to a complete stop. There is no greater pain that seeing your child sick and suffering...but you do whatever it takes to try to save their precious little life. I will never understand why innocent children suffer from horrible disease, but I do know that your beautiful little Ty is a very lucky little boy to have such loving and devoted parents. I keep you all in my prayers each day. God is with you.
    Susan in Charlotte, NC

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