Another unexpected bend in the road

I'm getting a little sick and tired of riding down this terribly long, bumpy, windy and dangerous road, but we aren't even close to our final destination.  That destination being Ty's return to his optimal health.  This morning, I will be taking him back to the hospital to seek out answers for yet another issue that arose out of the blue yesterday.

Ty and Gavin were on their very first playdate in Pawling yesterday when - out of no where - Ty wet his pants.  Ty never has accidents, but I tried to brush it off.  This is normal, it happens to all kids once in a while.  After we got home, he went on the potty several times, but then he also proceeded to wet his pants twice over the next four hours.  I asked him why and he said it was because he couldn't feel it.  On top of that, the corners of his eyes were becoming increasingly bloodshot.  I was thinking he may have a UTI and imagined his eyes were just red from being tired. 

This morning he woke with a wet diaper and his eyes are still red.  He doesn't have any pain, thank God.  His doctor at Sloan Kettering wants to see him because the symptoms could mean elevated pressure in his Central Nervous System, or something that may be interrupting his nerves in the spinal cord.  So much for having the rest of the week off!  He has PT this morning and we will be heading into the city afterward.  I will be sure to update you when we return home tonight.  Love to you all.  Thank you for keeping Ty in your thoughts and prayers. 

Comments

  1. AnonymousJanuary 18, 2012 at 12:37 PM

    My prayers and thoughts are with you today, just like every other day:) Hopefully it's just something simple. (Fingers Crossed!) The posts have been so wonderful lately and Ty looks simply amazing! I check for updates frequently, even when I'm not home I check on my cell phone. I wonder what people are thinking when I have this HUGE smile or am giggling while I'm looking at my cell. Ty and your whole family are such a part of our's now. I say Ty did this or Gavin did that. Your posts have become such a part of so many lives. I was reading the comment about how you should write a book. I agreed immediately thinking how wonderful your writing is and how you can make us "feel" what you're saying. Then, I thought no way... I need these posts and if you wrote a book, I wouldn't be able to get this info. until the book came out! I am waiting, as we all are to hear the words Ty is going to be ok and is at his optimal health! It's coming... I know it:)
    Michelle from N.H.

    ReplyDelete
    Replies
    1. Joy MarielleJanuary 18, 2012 at 8:25 PM

      Hi. Omg I would lose my mind without this blog. . . I just thought it would be wonderful to have her collection published one day to hep parents that have children with this terrible disease. Whatva wonderful book Ty's story would make! Little boy diagnosed wth terminal cancer beats all the odds and is cancer free!!!! :) I am looking forward to that!

      Delete
  2. Joy MarielleJanuary 18, 2012 at 8:21 PM

    Cindy & Lou,

    I know that Ty is going to be just fine. . . I will continue to relish in the wonderful news of his MRI yesterday. . . As always praying for your family continuously. . .

    Joy Marielle
    Baltimore, MD

    ReplyDelete
  3. Joy MarielleJanuary 18, 2012 at 8:26 PM

    And by the way, loving the new photo :) Team Ty! :)

    ReplyDelete

Post a Comment

Popular posts from this blog

Anything but cancer

Image
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...
Read more

Our baby is finally free. Rest in peace Ty Louis Campbell.

Image
Ty Louis Campbell is gone, but his story continues.  This is our promise to him.  His impact on the world around him gives his short but inspirational life such meaning.  His soaring spirit will continue to fuel a fire in our hearts, and strangers around the world will continue to fall in love with the little boy who fought so valiantly.  The little boy who hurt so much, but maintained a bigger, brighter smile than the healthiest of children.  Ty never did break his fever.  He never really woke up.  Not until he decided to leave this earth and fly freely among the clouds.  At that very moment, he was awake.  He had returned to Lou and I to say goodbye.  To say our hearts are broken would be like saying it tickles to have your stomach ripped open with a spoon.  I went to bed last night with so much worry on my mind, but I was able to fall asleep because I was calmed by the fact that in his semi-conscious s...
Read more

Our aching hearts

Image
My face is swollen.  My eyes are heavy.  I have been crying for what feels like an eternity.  But in between my tears, I have an overwhelming sense of freedom.  Today we were told that there are no more treatment options for Ty.  That his MRI Saturday night shows progressive lepto-meningial disease in three different areas.  Lou and I decided against surgery to fix Ty's shunt, and I am finally free from feeling responsible for whether or not he lives or dies.  Ty is in God's hands. No matter how many times I swore that I leave Ty in God's hands, I was always clinging onto him with every ounce of my being.  Researching.  Fighting.  Begging.  Doing anything in my power to find a way to save him.  Finally, I have exhausted my options and I am letting go.  I may be kicking and screaming, but I am still loosening my grip because I know that I have to.  We have tried so hard, for so long....
Read more