Monday, December 19, 2011

Anything but cancer

Cancer is not welcome here.  It can never, ever, ever, ever, ever come back.  As I mentioned yesterday, Ty has been showing some physical symptoms that we haven't seen in a long time.  Please, God, don't let it be cancer again.  Anything but cancer.

I spoke to Ty's doctor first thing this morning and he believes the increased weakness we are seeing on Ty's left side is not related to new cancer growth - but that doesn't rule out the possibility.  He feels that Ty is suffering from spasticity, which is becoming more visible now only because Ty is getting stronger.  As Ty's muscles begin to regain mass and tone, the neurological weakness on his left side is becoming more noticeable.  This spasticity is likely permanent, but also treatable with continued therapy.  When I spoke to his physical therapist later today, she agreed that it would explain what she is seeing, and then she reassured me that walking again is still a highly attainable goal for Ty.  And "he will get there, he will walk on his own again," she said. 

Unlike an older person who suffers a stroke, when spasticity like this appears on someone so young it is hard to say where he will net out because there is still so much growing and brain development taking place.  In fact, my doctor warned me that there will likely be additional neurological issues that present themselves as Ty gets older.  I am sad and mad!  But I'm also okay with that.  Just the fact that we use the words "getting older" in conversations about Ty makes me rejoice in the miraculous fact that he is here.  I have no doubt that Ty will continue to roll with the punches and amaze us with his strength.


Ty's doctor referenced two reasons why he felt confident that these issues aren't related to new tumor activity.  First, because if there was enough tumor burden on Ty's brainstem to be causing weakness, he felt we would be seeing other symptoms at the same time (headache, vomiting, heartrate fluctuation or vision issues).  Second, because I told him that Ty's hand was cramped closed all day, but semi-open and loose when he was sleeping at night.  He explained to me how that would indicate spasticity because spasticity occurs when the brain is consciously trying to move certain muscles, but the muscles don't/can't respond properly.  When I crawled into bed next to Ty tonight, I saw that his left hand was shut tight.  Can you even imagine how scared that made me?  I tried to open it and it snapped back closed.  Again, I forced his fingers around my hand and I just prayed.  I found myself repeating the phrase... "please don't let this be cancer, please don't let this be cancer, please don't let this be cancer," over and over and over for who knows how long.  Eventually I let go of his hand and it fell limp, fingers open, no cramping whatsoever.  A sign?  I certainly think so. 

Thank you all for your continued prayers and support.  I'm going to try this sleeping thing again now.   

6 comments:

  1. You are AMAZING!!!!! You believe in MIRACLES and we love you!

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  2. I am always so amazed at your ability to pull me into everything you are writing. I found myself praying alongside w/ you. Tears streaming down my face when you said his hand relaxed. He is such a miracle and I BELIEVE he will continue to improve as he kicks cancers butt. I've said it before but I want to thank you for taking your time to keep us posted about your incredible boy.

    All my love always,
    Elaine

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  3. FAITH, LOVE AND HOPE...Ty is a Miracle, keep your chin up and find strength to take each day as they come. Always keeping ya'all close to my heart!

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  4. Always thinking of you guys!! Love and prayers!! Stay strong live long!

    Love Brooke, Eric, Emily, Owen and Zaher -- man that asked for your picture at the race!! ;) <3 <3 <3

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  5. Cindy & Lou,

    Wow, I promise you I have been catching up, I just haven't had the opportunity to post! I love that picture of the boys! They are perfect!

    I'm sure they are very excited for Christmas coming up! I know my boys are, we keep counting down the days. Such a busy time of the year. I love Christmas, and I am sure you do too. I know last Christmas was completely devastating to you guys with Ty's diagnosis, but look at that miracle child you have! He is simply amazing and has beaten all the odds.

    I read an article the other day on aol news and it was written by a Jewish man. I think it was titled, why America needs Christmas. He doesn't resent that Christmas seems much larger then his holiday, and his reason for this is because Christmas is the season for giving. He discussed how he thinks Christmas is wonderful due to all the donations Charities receive at this time of year. I thought of that when you were discussing all the Saint Judes posters! I haven't made a donation yet, but I will today!

    As far as what is going on with Ty now, I think he is just fine and it is what the doctor said. You have a strong little boy, who continues to fight on a daily basis. He will continue to beat this!!!

    I wish you all a Merry Christmas and a Happy New Year!!! I think of you guys all the time.

    Joy Marielle
    Baltimore, MD

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