Wednesday, June 22, 2011

Seeing is Believing

I wish I had my video camera with me, because you wouldn't otherwise believe how amazing Ty is doing today.  His MRI was performed this morning at around 9AM (everything is always late).  He was brought back to the room and easily extubated soon after. 


The MRI showed that all of the visible cancer has been removed, and that he is recovering surprisingly well.  There is a sinus membrane where one of the tumors was arising from that is a concern because it is a sensitive area to work with.  The surgeon removed all of the visible cancer by scraping at the membrane, but he had to be cautious due to the chance of fatal bleeding.  He is concerned about an aggressive recurrence in that area, so we are exploring our options with focal radiation at Sloan Kettering.  We feel there is a benefit knowing that the new chemo (the Temodar) is also at work… swimming away in this body… so I like to visualize that killing any microscopic disease left over or at least keeping it at bay until we can zap it with radiation.  I want so badly to declare Ty cancer free.  I prayed so hard for a successful surgery.  That all cancer could be removed without causing him harm, and that it NEVER COMES BACK.  I know what I've been told, but I don't care.  I will never stop praying for that.  NEVER EVER EVER EVER EVER EVER EVER COME BACK!!

When Ty was lying in bed with the tube in this mouth earlier today, he was obviously unable to speak.  But, when Lou asked him "who's the best good boy in the world?" he mouthed the word "me!"  Despite the high dose steroids he is on, he is also showing tremendous strength in his arms and legs.  You should have seen him pulling at his arm restraints trying to bring his hands up to his face to feel what the heck was going on.  And the kicking!  I am excited to get him tapered off the steroids and home quickly so he can restart a physical therapy regimen to get him back on his feet.  I was thinking about that today, and even though he was standing and walking somewhat independently back in October (around Halloween), he never even had a chance to physically recover from the MRSA meningitis he suffered after his very first surgery so he hasn't actually been able to walk normally since August 20th, 2010.  My dream is to see him walking proud on his one year anniversary - and never looking back.   

Yesterday morning, Ty's pupils were dilated and unresponsive to light.  His eyes were crossed.  His heartrate was very low and his blood pressure high.  He was lethargic and shaky.  His coordination was so off he couldn't slap me five, clap his hands, or play with his toys.   Today he has no problems clapping whatsoever.  He is sitting with an ipad on his lap navigating his TV shows.  He is speaking perfectly well and all of his vitals are almost perfect.  I'm telling you, you would not believe he underwent such a major surgery just yesterday.  The brain is so amazing how it can bounce back like this.  He looks amazing.  That's why we call him SUPERTY - our little fighter!!

The incision on Ty's head is about 5 or 6 inches long and it is right smack on the back of his head.  Up and down from the neck, just like the last one which runs alongside his right ear.  He has several scars on the top of his head over an inch or two in length from all the shunt revisions, two large horizontal scars on his stomach, the scar on the other side that his G-tube will make, a two inch scar on his leg from a skin graft, a scar from his medi-port placement and a scar on the other shoulder from another small procedure.  Lou and I sometimes talk about how hard it might be for Ty, feeling like people stare in gym class or something, but lately I've been thinking the complete opposite.  I see Ty as a healthy teenager who is proud to show his scars and talk about what happened with him.  I think he would proudly shave his head in honor of the pediatric cancer cause to show other kids that they can get through it and he won't have any fear about the potential of going bald as he gets older.  He will embrace it as more opportunity to talk about the cause.  I pray that he has that chance.  The chance to be the incredible person I know he will be. 

I am just so ecstatic.  Ty may even be able to go home as early as Friday, but we need to wait for the results from another CT scan tomorrow.  His ventricles looked enlarged in the MRI so they dialed down his shunt and we need to make sure that's working.  If not, well, let's not even think about that right now :) If I can get out of here and back home to Gavin by this weekend I will be the happiest mommy in the whole world.  If I have to stick it out until early next week, I can handle it, as long as my hospital neighbors don't mind my scraggly appearance for a few more days because I am showering in that hellhole as little as possible while I'm here. 

Love you all so much.  Thank you for loving Ty.    

37 comments:

  1. We will continue to pray that this will be over forever soon. He looks amazing. So happy to hear how well these two days have been. :) Wonderfully amazing news!

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  2. SUPER SUPER SUPER TYYYYYYYYYYY!!!!!!!!!!!

    So glad to hear all this news... I will continue to pray for all the Campbells.

    Love,
    Janine

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  3. Ty you are AMAZING!!!! You are my hero!!! Keep fighting. As always you are in our prayers. oxoxox
    Love, Raena

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  4. I am beyond words happy to hear all is well. I see it your way too, Ty proudly displaying his battle scars to all and declaring himself a cancer SURVIVOR!!! We will all be celebrating that day soon I hope. I love you all soo much. Many kisses and hugs to Cindy, Lou, Ty and Gavin. Keep up the fight SuperTy, my hero.

    All my love,
    Elaine

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  5. I am overjoyed & totally choked up at your last blog! Miracles continue to occur. Thank you so much for sharing this amazing day!!

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  6. I have been reading your blog for a long time now. I'm the mommy of a 3 year old boy too. I found myself checking back often yesterday and today to see an update. I am over the moon to hear how great Ty is doing! I pray for him every single night. I hope God hears and answers my prayers for Ty. He is amazing, you are amazing parents and Gavin is wonderful. God bless you guys!

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  7. That is SO fantastic! Me and my whole family have been praying for you! God is GREAT, and he has a plan for Ty! Keep fighting and never give up hope! I wish I could give y'all big hugs!

    Find rest, O my soul, in God alone; my hope comes from Him. He is my rock and salvation; He is my fortress, I will not be shaken. My salvation and my honor depend on God; He is my might rock, my refuge. Trust in Him at all times, O people, pour out your hearts to Him, for God is our refuge.
    - Psalms 62:5-8

    God Bless Y'all,
    Hannah

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  8. This is the absolute most beautiful picture of Ty!!!! I believe God had answered everyones prayers with a miracle! We all continue to believe that Ty is a super fighter & will overcome this horrible disease. We all love you guys so much. Keep fighting SuperTy!!!!

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  9. Yayyyyy!!!!!!! This post makes me beyond happy!!!! God is good!!!! I love you all and I pray that God continues to do His awesome work and that He heals Ty completely!!!!! Finish Strong Super Ty!!!!

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  10. That is the BEST news!!!!Way to go SUPER TY :)
    Love and prayers on the way. Keep up the fight Ty. You are such an AMAZING little boy.

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  11. Great news. God works miracles!!!

    God bless Ty and his family and doctors

    Love from Texas!

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  12. Yayyy Ty! You are an amazing boy!
    We are so happy for you : )
    Beat that cancer up!!!

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  13. These are wonderful news. Great job Ty!! You are amazing!!

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  14. Amen. Halleluiah !!!!!
    Such strength - such unbelievable strength Cindy. You all remain in our thoughts and prayers without fail.
    Ty - you inspire us. Keep fighting.

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  15. WOW! Thanks, Cindy for the update - SuperTy continues to amaze.

    Semper Fi

    xoxoxo,
    Maria

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  16. Hurray for SuperTy!! What an amazing and strong little dude! I will never stop my prayers for him until he is cancer free. I have also thought of him growing up and being proud of his scars. I picture him as a strong, healthy and handsome young man who knows what a battle he had to fight at such a young age and he will be so thankful to you, Lou and Gavin for never giving up! He will give others strength and hope. That picture you posted is beautiful! You would never guess that little dude had major brain surgery just yesterday! Sending lots of hugs, kisses and snuggles to SuperTy!!! Xo

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  17. Woo hoo!!!! We are so happy to hear how successful the surgery was and how great Ty is doing! Love and kisses to you all.

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  18. I almost could not believe what I was just reading!! Cindy, I am beyond words and I am soooo very happy to read all of these good news!!
    I will go on praying and wishing for Ty until he has won the battle over cancer! xoxo

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  19. God bless you and that wonderful, INCREDIBLE boy of yours!!!

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  20. Miracles Happen! GOD bless you all! Viva super TY!

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  21. YAY!!! Way to go Super Ty! He truly is a champ and this cancer doesn't stand a chance against him.

    ~Jessica
    IL

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  22. (insert Rocky Theme song here)

    WTG TY!!!

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  23. Oh Wow! He looks amazing! I cried instantly upon seeing his picture. Have been praying for his cancer to be gone so he can live his life and enjoy just being a little boy. He deserves to just be a kid! All the best to you and your amazing family!

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  24. I think he'll be very proud of his battle scars. What a great post.
    Love & prayers from Canada!

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  25. Held my breath as I opened the blog yesterday.
    That picture says it all.
    Such strength and presence in one magnificent little guy.
    Ty is so very , very loved my many.
    He is the best good boy in the world!!!!!!!!
    (P.S. Give the surgeon a kiss from us)

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  26. I'm so happy for you all! I'm continuing to pray for Ty and all of you. As for YOUR "scraggly appearance", I'm sure that's impossible. No doubt your strength of spirit and inner glow, and love for your boys, is the first thing anybody sees when they look at you.
    God Bless You All.

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  27. FINALLY FINALLY FINALLY....LETS HOPE THIS IS POINT OF TURNING THE CORNER.....CONTINUED PRAYERS AND LOVE....

    The Savlick's

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  28. Ty looks superb in this pic. He is SOOOO handsome and will not even have to think of anyone looking at him in a strange way due to his scars later in life....he will be TOO cute for any of that nonsense! :)

    I was SOOOO relieved to read your post and still am in awe at how resilient Ty is. He continues to amaze.

    Thank the Lord for the nurses and Drs. who helped perform this major surgery w/ great success.

    Oh happy day here in Georgia,
    Jan

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  29. Thank you God !!! Please continue to shower your grace and love on Ty.

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  30. Love this picture of your incredibly amazing and Super Ty! Sending you lots of love, faith and continued prayers.

    Blessings to Ty and your entire family!!

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  31. I have such admiration for you and Lou for never giving up hope even when people say there is nothing more that can be done. It is very clear where Ty gets the fight in him! Praying for a quick recovery and home before the weekend!

    Bridget
    Memphis,TN

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  32. So amazing! I have tears in my eyes.

    I have been following Ty's story for months & months & find myself thinking of him often. I continue to pray for Ty's continued progress.

    What a beautiful little boy with the strength of ten men!

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  33. What a perfect beautiful boy. Sending hugs to your entire family!

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  34. i cant express how truly happy i am to see lil Ty looking so amazing and how well he is doing. i cry for your family all the time and this time it was "very happy" tears. we will keep praying desperately for lil Ty's miracle. we dont know your family but i can honestly say we love you and care sooo much!!! please keep updating us on lil Ty's improvements we absolutely LOVE to see and hear about it <3 <3 <3

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  35. This is wonderful news! What an amazing child! And last but certainly not least, what amazing parents! God bless all of you! xoxoxoxo

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