Countdown 3...2...1

We were discharged from the hospital in time to enjoy the tailend of the weekend, thank God.  We caught up on some sleep, and we're ready to tackle our last week of radiation.  We have three more days, and we are already in the waiting room ready to finish with day one.  This is Ty waiting patiently in his stroller for his "teetmee" (treatment).  I use the word patiently with much poetic license, because I'm sure most of the people that are sharing this waiting room would think the opposite, but I have seen much worse :)


There's a lot of emotions going on inside that little head of his, and he just doesn't know how to express himself beyond crying out.  Not to mention how funky all of his meds must make him feel.  He is still on a low dose of steroids, causing his "roid rage" to kick in several times a day.  I've weened him from 10 milligrams of morphine every six hours (that's the largest dose he has EVER been prescribed) down to .5 milligrams over the course of the last two weeks, so he may be having some withdrawal issues.  And, due to the misfortunes he faced over the course of the weekends, the team is playing around with his antibiotics again.  So, it can be frustrating at times when I can't figure out what is causing him to cry so much, or act out.  On top of everything, I can only imagine how scared and insecure he still feels when we are dragged in and out of the hospital so much.  And, how frustrating it must for him to be feeling better, but still unable to do the things he wants to do physically. 

Ty often says "I don't know what's wong wit me" and I try to explain to him that he is feeling this way for a lot of reasons, but that the most important thing to focus on is that he is beating the cancer up and getting bedda.  He really is improving with every single day.  I wish you all could have seen how much he ate yesterday.  He was a force to be reckoned with :)  He is even switching hands to feed himself, using his strong arm to pull his weaker hand up to his mouth.  He is working it!!

Comments

  1. CDN MummyApril 18, 2011 at 8:44 AM

    It must be so frustrating for the little guy. I am in total awe of him and your family, you are all to brave in the face of cancer. I think of Ty often and wonder how his day is going. I am always hopeful that he's having more ups than downs. I know he will get better with each passing day, I have such a good feeling about him. I wish I could give him a big hug when he's not happy, as I would do with my own son but since I can't I am wishing and praying for him to be healed with all my might.
    From Canada with love

    ReplyDelete
  2. JessicaApril 18, 2011 at 8:52 AM

    Praying that his last week of radiation is a success! You are truly an inspiration. Go Ty Go!

    ReplyDelete
  3. maryeking83April 18, 2011 at 9:19 AM

    2 and 1 I am sure by now :) GOOOOO TYYYYY!!!!

    Awww, little man is tearing up some food! Me too buddy :) Isn't is funny how what we all might think are the small things are really huge?

    I have been thinking of you all weekend, nothing new:) Can't wait for you to be past these two days and able to get on with your life!

    Love ya Sweet Baby Boy!!
    Mary E. King and the rest of the King family

    ReplyDelete
  4. AnonymousApril 18, 2011 at 9:45 AM

    Remember when this all first went down, the doctor gave you the marathon analogy. It looks like you are well on your way to finishing another leg of the journey! I am sending Super Ty lots of super support, prayers and love!!!! Miss you Cyn and thinking about you lots!!! XOXOXO, Juliet

    ReplyDelete
  5. BridgetApril 18, 2011 at 10:47 AM

    I met my first make-a-wish child last week; a 15 yr old boy from Israel who has medulloblastoma...when I asked him what his greatest desire was he replied, "I just want my health". If that could be wrapped up in a nice little box I would have handed it to him right there and sent one off to Ty as well. It absolutely breaks my heart for kids to have to try to understand something that adults still don't understand. I am praying for Ty and your family. Although I can't send health, I would love to send a little "happy". Can anyone reading provide an address?

    Thanks!

    ReplyDelete
  6. AllieApril 18, 2011 at 12:36 PM

    What an amazing little boy. He breaks my heart everytime I read about him but he still makes me smile. I pray for Ty and your family often. I hope things continue to get better and those antibiotics are sorted out!

    ReplyDelete
  7. ChristinaApril 18, 2011 at 3:58 PM

    Your posts bring tears..but I always recognize the tears of hope that stream down my face because it exists and is alive and well in Ty.
    You are an amazing person and one that surely stands out from the rest. Ty is amazing by genes and example- stay strong and keep the faith. Your positivity, strength and determination have already affected this situation in such a positive way. I said this to Deb...with every word, action and living being of your soul you are keeping the lid open on hope and Ty's future- you are changing the course of this disease for your son. Thank God he has you, of course my first thought is to wish he never had to endure a second of this.
    With that said..I know that what you need will come your way. I believe that with all that I have.
    Ty- as soon as the "spring" weather prevails..enjoy those rocket balloons with Aunt Deb and Gaga. All of our cheers are for you.

    ReplyDelete
  8. Colleen RosenApril 18, 2011 at 9:30 PM

    I'm glad he is getting bedda every day and getting off some meds. He looks great. Keep up the ass-kicking like Barack Obama.

    ReplyDelete
  9. Brooke : )April 19, 2011 at 3:48 AM

    Yay!!!! Go Team TY!! Two more days!!! Prayers, love and hope!!!!

    ReplyDelete
  10. Joy MarielleApril 19, 2011 at 2:14 PM

    Cindy,

    I have been catching up over the past few days, but have been unable to post! I am so happy that Ty is feeling bedda :) but sorry about what you guys are going through with his medications. It must be so frustrating for you guys!

    Ty is such a brave little boy, I still can't believe it! He amazes me everyday! I cant wait for your post that says Ty is Cancer free!

    I think about you guys everyday! Wishing you the best the last few days of radiation!

    Team Ty :)

    Joy Marielle
    Baltimore, MD

    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