Sunday, March 27, 2011

A quiet weekend

Lou and I had a nice, quiet weekend with Ty.  I also took time on Sunday to go home for the day and spend it with Gavin.  It was very special to have that one-on-one time with the baby, he is getting so big, we had fun!

Ty's staph infection is cleared from the bloodstream but not yet under control in his spinal fluid.  He continues to be visited by neurosurgery twice a day... once to tap the shunt and pull off some fluid to test the level of antibiotics... then to inject the shunt with additional antibiotics accordingly.   We will be staying in the hospital for the rest of his radiation therapy (three more weeks) because these injections need to be done in a sterile environment under close supervision and until Ty is well enough to have the shunt replaced, the infection won't be under control unless the antibiotic regimen remains the same. 

I am very happy to report that Ty is finally coming off of his steriods.  Slowly but surely, he is on a slow taper and we hope to be completely free of them by the end of these three weeks.  Steroids cause infections and high blood pressure while masking fevers, so they are likely responsible for Ty contracting all of these illnesses in the first place.  His swelling in the brain should now be under control gven we are halfway through radiation, so his doctors finally felt comfortable with taking this important step toward his recovery.  I am so excited. 

I cried a bit while I was home today, just looking at Ty's place on the couch and wishing things were different.  Gavin, who is not even 2 years old, got on his tippy toes, pulled down a box of tissues from the counter, and handed me a tissue.  I smiled, he smiled, then he walked away saying "MaMa".  It was so beautiful.  Maybe that says something about the person he is going to become as a result of all of this.  Strong, supportive, sweet and loving.  I love him so much and I miss him beyond words during these long stretches in the hospital. 

For those who have asked about whether or not the radiation is working yet, we were told that there's really no way of knowing until after it is completed.  In fact, the results aren't expected to peak until 3 months after his therapy is over.  The best way to tell is by his clinical behavior/improvement.  Unfortunately, that is hindered due to his infection, but I can say this... Before we began radiation, Ty's tumor was growing rapidly and causing a lot of neurological issues.  Those issues have subsided, so at the very least we can say that the tumor is not growing and the radiation (in that respect) is working.  It's no use scanning him at this point to look at the tumor because it is too difficult to decifer between living tissue and dying tissue, tumor inflammation versus tumor growth, etc.  We just have to be patient which is the hardest part of all. 

Thank you for keeping track of Ty's progress.  Our sweet baby Ty!  Here he is in early 2010 after a good nap.  That's some of the best bed head I've ever seen.  Makes me laugh.



XOXO Love Ty

12 comments:

  1. i hopeu feel better iloveu

    owen
    5
    ty
    3

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  2. ty your name is on the computer keyboard!
    emily!

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  3. I wish things were different too. Where is Gavin to hand me a tissue now? I need one.

    You're doing great Cindy. You really are the best. I love you so much.

    C

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  4. Always in our thoughts, first thing I do every day is look for an update. Glad to hear they are tapering off steroids. That should make him feel better to be more mobile. All our love,

    Elaine Hinkle and family

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  5. Poor baby :( how I wish things were different for him and your family. Ty is such a sweet little boy and it is so hard to understand how something like this could ever happen…

    Great news about the steroids! I think that is not only going to help control risk of infections but also his whole quality of life. Steroids are great but do a lot of damage at the same time.

    So three weeks more? That’s not too long, you can make it!!! As much as you miss Gavin just know that this time is almost over. :)What a sweet little man bringing you tissue:)

    That is amazing news about the tumor growth! The radiation seems to be working wonders. I pray every day for this to all go away. I hope so much that it will. Ty has to beat cancer and will! What are the doctors saying about his condition overall?

    NO INFECTION IN THE BLOODSTREAM!!!! THAT IS GREAT NEWSSSSSSSS:O)

    What a cute pic!!!

    Have a great day and give Ty hugs from me!!!

    Mary E. King, and the rest of the King family
    GA

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  6. My hope is that Ty is not getting too down from having to stay in the hospital for another 3 weeks but there is a light at the end of the tunnel. Just keep counting down the days. It won't be forever and before you & Ty know it you'll be back home. Lots of good vibes, prayers and love from Canada!

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  7. I am always looking for updates and find that you are just an amazing family that always looks for the positive. I look forward to the posts when all of this is behind you and the 4 of you are running around on the beach this summer, cancer free! You all deserve it! My thoughts and prayers are with you!
    Michelle from N.H.

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  8. Tell Ty it is sooooooo COLD in Pawling now and when he gets back it is going to be warm because he'll be bringing the sunshine home !!!! Three weeks will fly Cindy. Keep us posted !!!!!! I hope he has a good week. He is our hero !!!! The Becks :-)

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  9. Strong, Supportive, Sweet and Loving- if Gavin is becoming that, then it is because he is being taught by you and Ty!
    Ty, I am always thinking of how your body is healing itseLf and bringing it into balance. I just keep visualizing your 4th birthay cake with you on the other end and a big smile!

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  10. Cindy,

    So happy that you were able to spend some quiet time with Gavin. I know how special that was for the two of you!

    I am so happy that you had a quiet weekend with Ty. I cannot wait until you post how Ty is feeling incredible and you are going home! I wish for that every day!

    Your family is always in my thoughts and prayers!

    (((((Hugs)))))
    Joy Marielle
    Baltimore, MD

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  11. Well, this is a work in progress.
    Take each day as a day closer to health.
    + POSITIVE ATTITUDE +
    LOVE + PATIENCE + FAITH = SUCCESS

    We love you and keep you close to our hearts and prayers!

    Love always!

    Remember: “Patience is not passive; on the contrary, it is active; it is concentrated strength” Edward G. Bulwer-Lytton

    “If we are facing in the right direction, all we have to do is keep on walking.” Buddhist Proverb

    “Patience is bitter, but its fruit is sweet.”
    Jean-Jacques Rousseau

    “Have patience with all things, but chiefly have patience with yourself.” St. Francis de Sales

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