Sunday, October 7, 2012

Cancelled Plans

On the wall in my kitchen hangs and erase board where I keep our family calendar.  It shows two months.  Right now, September and October are showing and it makes me sad every single time I look at it because I didn't know how sick Ty was when I filled in the blanks on September 1st.  Two more months of fun-filled adventures with Ty and Gavin.  Ty's BIRTHDAY!  Pumpkin picking!  The 10K in Brooklyn.  Mighty Mikey's St. Baldrick's event.  The FOJ walk across the Hudson brain tumor families.  The 'Tunnel to Towers' run in Manhattan.  We had so many plans. 

Granted, after two years of "one thing after another" we are no stranger to canceled plans, but this time it is obviously so different.  Everything is a "last".  Every missed opportunity with Ty is one we can never do again in the future.  Yesterday was such a beautiful day.  The leaves are turning and I remembered how we would take Ty and Gavin for a long drive on days like this.  I told Lou, "today is exactly the kind of day that we would be jumping in the car to drive somewhere with the boys... anywhere... just to get out of this damn house on a beautiful day."  Ty would always joke that a bear was following us.  Then he exaggerated the story further to include a dinosaur.  The last time we were in the car we were being chased by a bear, a dinosaur, a deer, a monster and a ghost.  He always thought it was so funny how I would pretend to drive faster and ask questions.  "Is the bear riding on the dinosaurs back?  What color is the monster?" 

One time last year I was at the supermarket with Ty (his favorite place) and he was reluctant to leave.  Poor kid, he was having too much fun and so happy to be out of our house.  I convinced him that he could pick out a snack for the bear and that we would feed it to him on our ride home.  Ty picked cherry tomatoes and pretzel goldfish.  He was stronger then, so the whole ride home I left his window open enough so he could throw some out the window.  This was something I eventually regretted because I was constantly challenged with the task of feeding the bear - especially after Ty was unable to do so himself - and I worried that someday I would be pulled over and questioned about the cheerios (or whatever biodegradable items I could get my hands on) that were always flying out of my window.  I'm glad I never let that stop me, though. 

Ty and I spent a whole lot of time together in the car.  I needed to keep him entertained.  For those of you who are new readers - Ty had 45 daily radiation treatments back and forth to the city (we live over an hour north).  He was in clinic in the city almost once a week.  We drove to 60 hyperbaric oxygen treatments every morning this summer (also an hour away) and his daily rehab center was an hour away, too.  Now I look back and think of all those miles on my car.  We really had so much sweet alone time together.  We talked about silly things and I think I told him "I love you" so many times he just tuned me out (at least, I hope I told him enough).  Just me and my best good boy in the whole wide world.  My love.  We should never ever be apart.  I can't bear the thought of it. 


Ty in the backseat of my car, about one year ago
So, back to the calendar.  Today was supposed to be Ty's big birthday party.  The big carnival that everyone would have been invited to.  Since Ty wasn't feeling well on his actual birthday, I had hoped today would be a "do-over".  We were surprised with an outrageous birthday cake and an equally outrageous pumpkin today (thank you so much!).  I also received some sky lanterns and wanted Ty to send them off with ceremonious wishes written all over them. 



All of these things made Ty smile big, but I couldn't keep him awake for any good length of time today and that is starting so scare me.  Overall today was a good day, it really was, but I see changes taking place in Ty and it feels more and more real with each day. Like he is becoming more distant. He's starting to slip away a little and I can't believe it's really happening.  In true Ty style, I find it funny to imagine that Ty is in cahoots with God, waiting until things get really bad so he can make his miracle more dramatic :) 

The highlight of the day today was giving Ty a bath and it was pure heaven.  Over the years I have received several bottles of holy water as gifts.  I used to put some on my finger and gently put it on his forehead.  Now I am pouring it all right over his head in the bath.  No holding back now, I'm all in!  It is a beautiful feeling to pour that over his head, say a prayer, and feel like we are bringing him closer to God.  Still praying for a huge miracle. 

Ty needed the bath so bad because he is sweating on and off and throwing up much more often. I think it made a huge difference in making him more comfortable.  Maybe tomorrow he will be up for blowing out some candles and making some wish lanterns.  In the meantime, we continue to make sure all of his special gifts are scattered all over the room in places where he can see everything, and I think that keeps him feeling like the five-year-old kid that he is.  He has so many magical gifts, I see him looking at them all over the room and sometimes he points with his eyes and says "Look!".



Lou and I have become so used to caring for Ty in ways that no parent should ever have to.  We flush and pull needles out of his mediport.  During treatments we stick him with daily needles when his counts are low and he needs his "GCSF" shots. We clean and maintain his G-tube.  I made a chart for his medicine and today, alone, he received 26 syringes of various medications.  We always preferred to do things ourselves (when allowed) rather than have his nurses handle because we want to bring him as much comfort as possible.  Which leads me to our latest challenge.  Lou and I decided it was time to remove Ty's stitches.  (Background: In early September, the plastic surgery team was called in to stitch up several places during Ty's last shunt revision.  We had a phone call last week because we needed to bring him in for an evaluation/to have the stitches removed.  Of course, the plastic surgery team wasn't aware of Ty's condition, so we were advised to work it out with hospice so someone could come to our home to handle it.  Instead, we decided to take it into our own hands.) 

You'd be surprised about the types of medical supplies we've accumulated over the years.  We had a pair of stitch scissors, a tweezer specifically designed with a clamp to remove tweezers, appropriate cleaning solvents for the tools, etc.  Since the warm water softened the scabs and the skin, we worked together to get them out. Actually, Lou did most of the work while I held Ty still and tried to comfort him with soft words.  There were about 30 stitches in his head and another 15 in his shoulder so it took a long time.  What can I say about Ty that you haven't already guessed.  He cried here and there, yes, but he was otherwise SO BRAVE and SO STRONG.  I am so proud of him, but at the same time I'm so sad for him.  Just one more day in the life of this five-year-old.  It's so unfair.  How could this have happened to him.   For most, this might be one of the more traumatic experiences in life.  For Ty, this was a walk in the park.  How is that possible? 

I don't really have a before photo, but here is the after.  The shunt is under his scalp right there on the side of his head and you can't see the incision scar at all!  The other two incisions on his neck/shoulder are a bit red but otherwise looking great.  Ty is super indeed. 


I have so much more that I want to say, but I am overtired and afraid I will miss this window of opportunity to fall asleep.  My sister and brother-in-law are here and I was so happy to spend the night talking, laughing and enjoying them.  I said to Lou, "If we are going to drink wine tonight, one of us has to stay sober in case Ty gets sick in the night or something."  Right after I said that I quickly pointed to Lou, but his finger was already on his nose.  "Not it," he said and I clearly lost (although, I still argue the point that I didn't know we were doing the finger on the nose thing, I was pointing instead).  So, I had just enough wine that I am SO TIRED, but of course I don't have to worry if Ty wakes up :).  Goodnight everyone.  Sweet dreams.  XOXO, love Ty.

101 comments:

  1. I believe a miracle is going to happen. I just know it! We love you Ty!!

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    1. Yes, in the name of Jesus!! Amen!

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    2. Amen, I do too, In The Name of Jesus Christ!



      ~Michelle, North Ga.

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    3. Yes, I am praying everyday for a miracle for Ty! Please God let it happen for this sweet, beautiful little boy!

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  2. God bless you! Stay strong!

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  3. Praying everyday for Ty and your family!

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  4. God Bless you Cindy and Lou. Your courageous, sweet boy came into my life through Rockstar Ronan and Ty is all I think about now. I have my own 2/12 year old son, who happens to be named Ronan, and because of Ty, I see him through different eyes. Because of several losses, Ronan will be our one and only. But I promise you, he will know about his friend Ty. Ty has paid it forward so much in his five years on earth and I cannot help but think of that same movie where crowds of people walk with candles in remembrance and gratitude. Please try to take comfort in knowing that in every corner of the world right now, people are going to sleep, waking up, and the last and first thing on their minds is, how is our Ty? He has become 'our special little boy' to many, many people everywhere and we all hold our communal breath every morning or night, wishing him the best day possible. Sweet dreams, beautiful Ty, your mommy, daddy and Gavin are right there if you wake up and feel icky tonight. You will never, ever be alone, sweet, beautiful boy xxx

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    1. Those were beautiful words!

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  5. Believe in Ty always! Don't ever dwell on the negative possibility of your son leaving you; it will consume you. Keep your spirits high and have faith that he will come through. I find that my negative thoughts become my reality - you should never pass up the opportunity for positivity! Of course I know it's beyond hard for you to do that, but you really have to just believe it will be put right by God. Let Gavin and Lou fill the hole in your heart. You are deserving of their endless love!
    You are strong and brave and running on faith in the unknown, and I sincerely pray for you and your boys, for God to bring you only bliss and contentment whatever your situation. And God's hand and guardian angels be on Ty. Bless you all!

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  6. Always praying for a miracle! We love you Ty!!

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  7. Ty is such a beautiful boy both inside and out. I am happy that even though you couldn't get out with him you got to enjoy bath time and he got more things to make him smile. Also happy that you and Lou had some laughs with your sister and her hubby. You guys needed that. Continue to take care of yourself Cindy. And continue to enjoy every second with Ty......he is one amazing boy who has touched the lives of so many. Xoxoxoxo

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  8. Poor baby Ty. I hope tomorrow he can blow out his candles and enjoy some birthday fun. Have been thinking of him constantly and so glad to see your newest post. I'm.glad you got to enjoy some time with family even if you couldn't get drunk. :-) that was cute!!
    Sending prayers and hugs to all of you always. Sweet dreams sweet Ty.
    -Jennifer R

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  9. I love you Ty! Keep fighting and we will all keep praying for your miracle. Cindy, I am at a loss for words. You amaze me with every post. I wish I could hug you tight. Dear God, please heal this prescious boy. Wishing nothing but the best for your family. All my love...

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  10. Cindy,I just wanted you to know that their are so many of us out their praying for your little Angel every day and I just know a miracle is going to happen.

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  11. I hope you all are enjoying the sweetest sleep right now! I pray that tomorrow is a nice day for Ty! Please, please, please get better little fighter!!

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  12. Aaaw, that is the most adorable picture of your beautiful Ty!

    My heart goes out to you, Cindy, and your precious family, as it does every single day. Praying for a miracle!

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  13. Beautiful, beautiful, beautiful -
    Beautiful boy...

    Sweet Ty: I hope you feel all fresh and clean after your bath and now that your stitches are out. I know the morphine can turn your tummy and make you spaced and sleepy, but it's SO much better than those nasty, awful headaches. And how great that, even when you doze a little from the medicine, you can still hear and feel Mommy, Daddy and Gavin telling you how much they love you? What a gift to be with them... I wish I could come and smooth your hair, and tell you how many of us love you; how much we want you to be whole again. Instead, I will send my love out to you, across the universe, beautiful boy.

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  14. Last night I was sitting on my porch looking at the stars and I realized I hadnt seen a shooting star in the longest time. I thought "God I would love to see a shooting star tonight, for Ty, please send me one, I need to see you if you hear us"....and there it was!! It only about two minutes, but clear as anything it shot across the sky. I was surprised myself, but it was so cool, I had to share!

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  15. No child should have to know cancer so cruel as this,i cant help but cry my eyes out everytime I read .... I see more and more the powerful movement coming foward for children and cancer and their fight,because they deserve everything,"they are the world"...as michael jackson wrote. My good frinds 3 year old is surviving a more survivable cancer(Rhabdomyosarcoma) Im sure you know..soft tissue cancer. My prayers are with Ty ,you and all the family. i am a libra like Ty, my brother was also (oct.5th,) a libra. I was always told libras were very kindhearted loving ,giving people,and I see that in Ty,he will be sooo loved wherever he is,and touched by all.

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  16. Hi,
    I am a fellow Marist grad and a friend mentioned your Ty blog so I started reading about a week ago. I am so touched by your words - they are so raw and true and heartfelt. I wish I could give something up to help your little boy. I will hug my daughter tighter and hold her gaze longer, all in honor of Ty. I wish you peace.

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  17. Call in a priest....
    Miracles happen daily & I believe Ty can get up!
    {hugs} God bless

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  18. we are all praying for your precious angel. I plead the healing blood of Jesus Christ over his picture and you can lay your hands on Ty and speak the blood of Jesus over him. God will not fail you nor forsake you!!!! All things are possible with God!!!! Hold on.

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  19. I found out about Ty from the blog of Ronan's mom and ever since then, he is all I can think about. The various pictures you have posted of him throughout the years are so beautiful, handsome, cute and heartbreaking all at once. I'll always admire his fight and courage for dealing with things many adults will never have to. Thinking about him always, and praying for a miracle.

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  20. Cindy, you and Lou are AMAZING parents! I'm sure Ty and Gavin know just how special their mother and father are. Please, remember to take care of each other, while caring for your beautiful boys. I will continue to pray for a miracle for sweet Ty. XOXO
    Love, Tara

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  21. You, Cindy make me a better Mom and for this I thank you!!!!!I always think of Ty everyday. I pray everyday for your family! God Bless!

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    1. Don't you ever guestion have you done enough, you are super parents of a superboy. No family should have to endure the travestys you have. Don't stop believing you have given the world a wake up call.

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  22. Sweet dreams Campbell family!!! Continuing to pray for a miracle, for strength and for peace. <3 Deb

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  23. I cried myself to sleep last night after reading this.. literally. My God, this is so unfair. I HATE it. I HATE CANCER!!!
    My constant thoughts and prayers are with you all. I am so glad that your family is there, and you are still laughing and enjoying each other's company. I want that miracle for Ty so badly, but I also want so badly for him to not be in pain, one way or the other.

    Love you Ty. Hang in there, buddy.

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  24. Good morning, sweet Ty. I hope and pray you have a great day today! Praying real hard for you little buddy, every day. I wish you 100 more birthdays!! You are so so special and this world needs you in it. Keep fighting because with all of these prayers, God will show us all he IS MIRACULOUS.
    Never stop believing .....
    So many people around the world love you, Campbell family. Lean on us, through our posts. Know that we feel your pain and sorrow. This village is in your corner and I hope, in some small way, this comforts you. <3<3<3<3

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  25. Sending love, strength and positive energy your way. I simply cannot imagine. It's heartbreaking enough as a complete stranger reading your words. I truly don't know how you do it. I want with all my heart so many things for you and that sweet, beautiful boy that are beyond my control. If I could, I more than would! Much love to you all!

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  26. Nebraska is praying for you Ty....We have people here asking about SuperTy t-shirts...can we still order those?? Team Jack
    has made us very aware of your story, you are a special little man with amazing parents!!

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    1. We are in Nebraska as well! I am so thankful that I learned of Ty's story this week from the Team Jack fb page. Since then I have shared your story with several people. Ty, you are an amazing little boy and you are an inspiration to everyone!!

      I pray for you daily and I offered a prayer up for you today at mass. Stay steadfast in your faith. May God Bless all of you!!

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  27. Ty - that must have felt so good having a warm bath and your mom & dad wrapping you in towels. I love the holy water & the bear stories. I love how tender & loving you and Lou are with Ty. You are truly the BEST most amazing parents a little boy could ever have. I have been thinking about Ty more & more each day...all day. My heart aches and I feel so helpless. Dillon just came down and sat in my lap as Im typing. I starting hugging and kissing on him..and he was turning so I couldnt kiss him. I told him I will never stop kissing him...and we will never ever stop praying for Ty...and sending butterfly kisses his way. xxxxxoooooo
    Hope he gets to blow out candles today!

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  28. I anxiously await your updates daily and check this website several times a day. Ty is such a beautiful little boy with the most gorgeous eyes. I think you guys are absolutely amazing and such great teachers for the rest of us. I can't even imagine the hell you have been put through and continue to go through.

    Ty is such a strong little boy with such a will to live. I too am praying for a miracle! It is so hard to go about my own day knowing you guys are at home with Ty and not knowing what every minute of the day is going to bring. It makes me feel guilty.

    I pray today is a better day and Ty is able to blow out those candles :) I am sending prayers, and positive vibes and more than anything love your way :)

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  29. Hoping he has a better day today! Prayers, love, and hugs to SuperTy! Still holding out for a miracle. We hope his brother knows how much SuperTy is with him always. Hugs and love to Gavin, Cindy, and Lou.

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  30. Stay strong Campbell Family!
    Ty is a blessed little boy who is changing the lives of so many people with out even knowing them, that is God working:)...We pray everyday and hope for that Miracle for Ty, he so deserves to recover his physical health, although his spiritual strength is more than anyone could ever imagine.
    Cindy and Lou, you are so brave and I admire you! thanks for sharing your boy with us.
    We love you without knowing you

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  31. I came to read about your son via a friend of mine on facebook and am surprised I am writing to you. From the little I have read over the past couple of days, you truly are an amazing woman! My heart truly goes out to you and your family. As I sat here this morning reading and crying, my six year old son Jacob came to ask me a question and gently wiped away my tears and gave me a hug. He asked no questions and went on his way. Your son is so beautiful and I will strive to appreciate every moment with them even the crazy ones with the same grace that you seem to have.
    May God bless you and provide you all you need!

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  32. A miracle is coming. Get ready. In the Name of Jesus, and Jesus alone. He is the doer of all miracles. No name is greater than His. No love is deeper than His. He will be glorified by this beautiful boy's testimony. Great things will be done by Ty and the rest of the Campbell family.
    All you have to do, is have faith that He can do it.

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  33. My heart aches a little more with each post you make. I'm so glad you had your sister with you today and some "normalcy" (if that's even possible for you and Lou). I'm going to church this morning and ill be sure to say an extra prayer for Ty and light a candle. Hope today is a better day.

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  34. Cindy and Lou,

    Stacey and I were doing our best to describe Ty's story and what you are going through to our 9 year old daughter Katherine this morning. But as I told her, there really are no words to describe this. Cindy, I just don't know how you have found this otherworldly strength to so beautifully share with the world your story. And Lou, when I read your birthday wish to Ty Thursday morning, I just sobbed. We will continue to pray for all of you. Thank you for sharing your story with us.
    With much love, The Delamere's

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  35. As a mom the worst feeling is worrying if our kids are scared..and I know that has to be the hardest for you and Ty. I was thinking of this last night and I came up with an explanation that put my mind at ease. I feel like the reason Ty is sleeping more and more is because this is Gods way of slowly introducing himself to Ty so that he won't be scared. I feel like He is showing Ty what great things await him if he chooses to go. I'm sure He is introducing Ty to all the wonderful new friends Ty will be playing with all day. I feel like God is doing it slowly so that when Ty decides its time he will do so because he is not scared AT ALL, but excited! Of course he will be able to see his mommy , daddy, and brother all the time, but he will be having so much fun living in his candy cane house and playing with all of his friends, running, jumping, and doing things he couldn't do for so long here. I look back to when my aunt died 10 yrs ago, of course I didn't see that then, that God was slowly introducing himself to her and showing her how wonderful heaven was, but she was not scared, and thats when she let go, she was ready. Now I see that..It took 10 years. I do so hope that Ty is in cahoots with God and this message will be all for naught but it gave me some comfort knowing that God is showing Ty how truly special heaven can be.

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  36. Where Ty is going is just so much better than here. And, it really sucks (sorry for the language) that you will wait sometime to be together again but I know he will always be with you. You will feel him in the sunlight on your face and even when you snuggle up in bed on a cold winter's night. I can't imagine you won't always feel him around you. And Im happy you choose you keep him in your bedroom. I would do the same.
    I have definitely been giving my kids "five more minutes" a lot as of late and Im sure that will stay with me throughout their childhood. That, I have you to thank for! What a terrible thing, that I am gaining something so good in my life from something so bad in yours. I'm sorry for that. God really does work in weird ways.
    Nothing any of us say will take away the pain or make it ok. We can only show you all the tremendous light you have shined on our lives and how you affect us everyday by telling your story. What a gift you have given to so many. Yes, you and Lou & Gavin were chosen just the way Ty was. That I know for sure.
    I know you are being given this time to get in all those kisses and hugs to "relish" in:). You deserve that.
    Today I am wishing you all an easy breezy, peaceful Sunday and week ahead.
    Sending Love and Hugs
    Lisa Asimake

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  37. I'm so sorry about Ty.. I heard about your blog on Rockstar Ronan and came to show my support on these two beautiful boys! I can't imagine what Ty goes through everyday.

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  38. Thank you, again, for sharing your heartbreaking journey about Ty. My continued thoughts & prayers are with Ty & all of the members of his family. God Bless.

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  39. Always praying for Ty and your family. God Bless you always and may God keep Ty safe.

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  40. Thinking about you today Ty. Prayers. I know you sleeping a lot is because God us talking to you. He is giving you strength.

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  41. I realize yesterday that I knew about Ty and his story a year ago on HP. I am not sure I put it together that Ty and the little boy than Scott and Jenny prayed for was your Ty. I have been thinking of you and your family for so long. I ache for you. I really do. I have been volunteering at MSK since I was 17 years old. I know the world of cancer and these 25 years later I still try to do what I can to help those battling this bear. What I have discovered that it doesn't really get any easier. It just seems so unfair. I have the utmost respect for your courage and your openness in sharing Ty's story. I love that PABLOVE rode for TY - I am a part of that foundation too. I know all too well the idea of "lasts"... and unfortunately the following world of "firsts"... I pray that everyday you get that miracle and that you never know that world of "firsts". I was inspired by some photos of Ty (his hat on the top page and the visiting zoo) for one of our holiday gifts bag items at MSK. Critter hats for each kid and I am going to get them donated in honor of TY no matter how many places I have to contact to do so. Ty has impacted the lives of so many people. Most people never get the chance to do that. That is BIG! Wishing today is a good day that that miracle is right around the corner.

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  42. I ache for you every time I read your post. I always cry even when in the past you posted positive outcomes because I can't imagine the pain he is in at 5 yo. What does he think about it what does he feel what's going in his head when he is laying down not able to move and play. It's so unfair and thats nice way of putting it. I have been your blog follower for the past 2 years and I have spoken about Ty To everyone I know and what amazes me is that you are so gracious amazing and well spoken. I would be angry cursing out screaming. Aren't there any doctors our there who can fix Ty?! Why aren't you doing it?! It's so sad and if there is only one miracle that G- D is planning today please make Ty healthy. He needs it today more than anyone!

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    1. Couldn't enter my name under today for some reason so it went under anonymous. Tatiana Kidanov

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    2. So sorry it came out why aren't you doing it was meant why aren't they doing it. I feel horrible that this typo cold look like it was meant for you, I am so ashamed. Tatiana kidanov

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  43. Still holding out for a Miracle!!! They do happen, and I believe in JESUS and his FATHER. I pray they give TY the miracle that all of you deserve after going through such torment. Always thinking of all of you and sending all my prayers your way.

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  44. Dearest Campbell family, I'm praying for you this beautiful Autumn morning. I'm praying for healing. I'm praying for grace. Most of all, I'm praying for peace. I'm trusting God to make the perfect decision for our amazing Ty. I completely agree that this beautiful boy is in communion with God and making soul decisions. I believe in miracles.

    I made a lantern with beautiful red, autumn leaves I collected (photo posted on his facebook page)for Ty to enjoy. How do I send it to you? Love and hugs today, as always, Marianne from California

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  45. Hi sweet Ty and family!
    I found out about you all a couple of days ago on Fb, and have been reading your blog, you are all so strong, bless you all!
    I just lost 2 previous comments that I typed and somehow lost/couldn't publish,, but feel compelled to write again and ask you ,mom/dad if you've ever done a reiki healing on your son?
    Its really easy and I believe in it 100% and really feel that they would help your son..
    All you do is place your hands together and start rubbing them together until you feel your fingertips start to tingle,, that is the energy in your fingers,, then all you do is place your hands down, on your son's head, or anywhere else on his body,
    keep them very still and just feel as the energy tingles in your fingertips. Gradually the tingling lessens and then stops. The tingling stopping is the signal that the healing is complete.
    Do this as often and as many times as you want/can.. It will make a difference for your little son..:)
    Reiki is truly a miracle!!It is a free energy that we all can use, and it should be taught for free!! I learned it from the book 'All women are healers' by Diane Stein.
    I have been using reiki on my 3 children from time to time,, to relax them, or help them through illness or stress. It is very healing and subtle but it's there and its real and i know and believe in it.. As a matter of fact when my husband broke his hand 8 yrs ago, I did a healing on his hand, and both he and I felt his bone move !! And ever since then he has had minimal pain!!:)
    Please try it on your beautiful son!!And post if it helps at all!!:)
    With Love!!
    Rebecca Muller and family




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  46. Kim Marie BonielloOctober 7, 2012 at 1:51 PM

    I think of you and your family all the time! There isn't a day that goes by that I don't check your site several times during the day and night. My thoughts, prayers and tears are with you all the time on your good days and bad days. Tears of joy and pain. May god be with you and all of the Angels that we have called upon! XOXO

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  47. I came across your page from a link on facebook about a week ago. I have not stopped thinking of all of you since that day~ and i have read nearly all of your blog now... my heart breaks for you. i feel physically ill when i read of Ty's struggles, and as a mother i cannot only imagine your pain. Know that strangers everywhere are praying for your family to get your miracle, i know i am. i feel as though i know you- your writing is so honest and is a true testament to the love you have for your son- your readers FEEL everything you are telling us. May God be with your family and bless you with a miracle!!! know that you have soooo many people near and far praying for the same thing!!!- Amy from Ohio

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  48. Cindy and Lou - I am so sorry what Ty has to endured the last two years and sorry that you had to go through it as well. From youre blogs I feel like I know all of you so well. I am sending lots of love and prayers to you all. and please - give Ty a kiss from us xo

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  49. You are both amazing parents, and with such a wonderful little boy I can't expect anything less! Still praying for you all. Please give Ty some extra snuggles tonight. My family is thinking of you all and praying so hard for that well deserved miracle.

    Allie

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  50. Hi there - I found your blog that someone put on their facebook page, and I've been keeping up with it! I was curious if you ever tried any kind of juice or fasting therapy? You probably have or at least have had others suggest this. Just curious. I have read that refined sugars are not good and the more fresh live food the better, green smoothies would be a great thing...just some suggestions from folks who have used these things to treat their cancers. God bless you and I'm praying for little Ty and your wonderful family.

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  51. I sit here and write this through tears. What a beautiful boy your Ty is and how brave and strong you are! I admire you for the honesty in which you write your blog. Your sons are very fortunate to have such loving and kind parents. I wish for you peace and comfort in knowing that you did everything you could for your son and his spirit will live on in all of us who were touched by your lives. Thank you for sharing.

    Victoria Picard

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  52. I realize this may sound really strange....I am currently estranged from my precious 16 year old daughter.I read your posts (since the beginning) to keep me in perspective with God. I actually looked up coffins and pure white little boy suits online yesterday to be able to feel your pain more.I put the pics on my refrigerator to remind me all things are possible with God and to remind me in a huge way what others in life are dealing with everyday. It makes mine seem so small.I would gladly give up my begging to God to put Ty in the forefront and I am....where 2 or more are gathered in hHis name.....I holld that to my heart.

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  53. I did go to church today and said that extra prayer for Ty and your family and lit a couple of candles for him. Today Father talked about god giving us the greatest present of all when we are born. He described it as a big box with lots of ribbons and bows. He said that some of us don't even bother to unwrap them or even look inside this box of "life". He also told us that sometimes what's inside the box may not always be fair or just but it is still life and we have to do the best with what is given to us. The Campbell family has definitely unwrapped that box of "life" and even though the hand you were delt was not just or fair, you are making the most of it and making every day count. Ty and Gavin are very lucky boys to have such amazing parents. Praying for you always.

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  54. Cindy and lou, I am so sorry what yall have to go through, and especially what ty has to go through. But through all of the sorrow and pain, yalls strength and love is shining through. Yall are such great parents, and ty and gavin are great kids. God bless you all. My prayers are with you, and I believe with God all things are possible!! Summer-Louisiana

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  55. I told some of my friends about Tys story, they said they will keep you and your family in their prayers. Give Ty a big kiss, and keep fighting like the super hero your are

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  56. Cindy & Lou, My heart and prayers are once again with you as you live another day feeling the hell on earth you are living. I think of all of you often and try to understand the unimaginable suffering you must feel knowing or seeing your precious little boy may soon make his peace with our Heavenly Father. I pray so very hard that a miracle will happen. In fact, I got so angry this morning seeing your last two pictures on this blog that I got angry at the Lord himself and thought "You SHOULD make it happen"! How dare you not! How dare you allow your precious child suffer! Why? Why could you not just make him better and why would you not spare this little boy and his wonderful family thier anguish? Certainly, you have been served the Lord proudly through all your scarifices and deserve to be spared! Then I realized you were all sent to us to inspire us to be better people. Stronger people, kinder people. Ty's plight and his beautiful angelic face have taught myself and many people that nothing in life should ever be taken for granted and to face things with courage, light and love. In the name of our father and trust his decisions. I must admit it doesn't make me feel differently because I am still a bit angry, but it is so evident that God's plan with Ty did just as it should for it has brought so many people together in prayer and unity. Ty at such a young age has taught many people young and old, family and strangers how life should truly be lived! Both of you had a hand in that as well. You should be very proud! You guys have certainly owned it!

    I am not sure if you have recieved the pictures of my grandson and the birthday cake he made for him, as well as the video but again I must THANK YOU and Ty for teaching my grandson compassion for others. He loves looking at Tys pictures and hearing the wonderful stories I tell him. Everyday he looks at my beautiful picture of Jesus and tells me that he is smiling for Ty. Something he once told me on his own! My love, my heart and my best wishes are with you always and I will continue to pray for everyones "Angel"...
    Super Ty!

    Sincerely,
    Janet DeVito & Jayden xo

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  57. Cindy, I went to church today and asked my pastor to pray for Ty. He asked me about him and I told him you live near me (I live in Brewster), I have 2 kids, 4 and 6. As a mom, I cannot imagine what you are going through. I left the service 3 times in tears, so they knew something was up. I simply feel sad for what your family is going through, and as a mother, this breaks my heart, I just had to ask the pastor to please say some extra prayers (and I gave him this website). And i know he will. God Bless Super Ty!

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  58. My children and I took a walk after church and said a special prayer for Ty. With hope and love, all things are possible.
    Jennifer, Illinois

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  59. I have been reading your life with Ty and I makes me so sad to think that he will leave you soon. I look at my girls who are teens and my grand daughter who is a toddler and I think I could not even imagine what I would do if this was them instead. I will never understand why they have so much research for breast cancer but not pediatric cancer: No child or parent should have to go though what your family has went through.

    I hope and pray that Ty will get to blow out his candles and have a birthday redo. I'm learning not to stress the small things because they do not matter and when my granddaughter wants to run in the puddles I will let her and I will think of Ty.

    God Bless all of you.
    Amy, Michigan

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  60. Just saw on Facebook that Ty is having a good day. Soooooo happy to see that!!!!!
    -Jennifer R

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  61. I just happen to stumble upon your story when I made the Ellen DeGeneres show my facebook friend. Another reader posted your story, and I was hooked! I love reading your updates about the Lovely TY, his amazing strengh and his love for life and survival. You are doing everything right as parents and please find strengh in that, always remember your faith in God and he will lead you to comfort. Ty's story is very touching to me and I have always taught my kids that everything happens for a reason. I truly believe that I was lead to your story to make me a better person, Ty has showed me that everything in life can be conquered and we can battle and survive what gets dealt to us. At such a young age he is teaching us all not to give up and have strengh. You continue to love him, hold him give him strengh through your strengh and know that there will be good days and bad days, but at least they are days! We will continue to pray for TY and your family daily. BELIEVE IN MIRACLES.

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    1. I posted it together with my sister we thought Ellen should look into this story because I'm in awe of Cindy and the whole family and of course of my hero superTy! By Tatiana Kidanov

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    2. I also posted on Ellen's page. I wish they'd pay attention! I know Ellen gets so inundated, but she could do SO much good, with her big heart! Maybe if more people reading the comments would post to her too.....

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  62. TY, MY GRANDSON CARSON MADE YOU A CUTE VIDEO WHILE JUMPING IN THE PUDDLES IN FRONT OF MY HOUSE TODAY. I JUST HOPE ITS OK HE WAS IN HIS SUPER HERO UNDER WEAR LOL ... WE LOVE YOU MUCH <3<3<3 HOPE MOMMY SHOWS IT TO YOU TODAY...... LOVE, KISSES, HUGS AND PRAYERS KATHY

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  63. Prayers, thoughts, and lots of love going out to Super Ty and your entire family. The strength of your family is beyond amazing. Ty is a courageous, beautiful little boy!!!! I am a better person because of Ty and vow to raise awareness in my own community. XOXO.

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  64. Thinking of you and your family every day.

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  65. My sister and I are thinking about and praying for Ty. I know no words are going to make you feel better just know you're not alone.

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  66. i pray for a miracle for your sweet, strong boy every day. Happy birthday to the mighty Super Ty. I love this boy so much, even though I have never met him. And you and Lou are amazing. I stand in awe of you and will forever pray for Ty. XO

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  67. I read this post when I woke up this morning but didn't get a chance to respond until now. I haven't been able to get Ty out of my mind today - well that's been every day really. I am so mad at what cancer has stolen from him and from all of you - every day I wish I could turn back the clock to the day he was diagnosed and fix it so that it was nothing, and that Ty would be fine now. But I can't - all I can do is every day pray, pray harder then I ever had for anything in my life - that God would have mercy on Ty and make him healthy and whole. He's fought so hard for so long, he deserves that miracle. You all deserve that miracle. He is such a beautiful boy and his strength and love for life is such an inspiration - he really is my hero. Yesterday my son wore his Super Why costume everywhere we went - to the bagel store, the service station, Target - and he brought a smile to more then one person yesterday because of it. We also spent a lot of time outside letting him ride his bike - his Super Why cape flapping in the breeze. The whole day was in honor of Ty and the lessons we've learned from the Campbell family.

    I'd like to think Ty is doing all that sleeping because his body is working so hard to repair itself and he needs the rest to keep the healing process going.

    I wish there was more I could do for you guys to thank you for all that you've given me. Just know that I'll be praying for as long as Ty is fighting to stay here - and I'll always carry a piece of him in my heart. Wishing you all a good night. God speed little man, sweet dreams little man.

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  68. Praying for Ty every night.

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  69. Cindy, I have been reading your posts for the past few days and have been praying for Ty ever since. Thank you for sharing your lives with us. Thanks to you we hug our little ones a little tighter, tell them we love them to the moon and stars and back and cuddle with them well after they are sleeping at night. I took my little guy to a candy store today and let him loose, thinking of Ty the entire time.

    My little girl has had some health issues since being born and although she is healthy now, there were mornings that I was so sad to see my baby in pain that I could barely get out of bed. You are a true inspiration and your strength is astounding. Ty is so unbelievably lucky to have such a wonderful mommy.

    As the world prays for Ty tonight, I will be adding in a special prayer for you. May you continue to find the strength to care for your special little boy and find peace during this most difficult of times.

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  70. Hi! I just wanted to let you know that I know what you are going through. My daughter was 19 when she was diagnosed with Rhabdomyosarcoma in her sinuses and orbit of her eye. After her radiation( several weeks later) she had Somnolence Syndrome which made her sleep all the time and she was sleep walking, and had no idea what was going on. Sha also couldn't eat and lost 60 pounds. So you may want to talk to the docs about Somnolence syndrome.

    I wish you the best! I am lucky that I had almost 4 years of day to day driving or being with my daughter. What parent spends that much time with a young adult! I cherish those drives and "Mother/Daughter bonding with a credit card!" Mimi

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  71. praying for SuperTy and your whole family. xo.

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  72. I also found out about SuperTy through the Rockstar Ronan blog. From the day I visited your blog your adorable son has plagued my mind. Every morning the first thing I wonder is how Ty is doing today. As a mother of a two year old boy I can not imagine being in your situation and I know for a fact I would not handle it with as much courage and grace as you do. God bless you and Lou and especially Ty, who will always be remembered by so many no matter how long a life he lives.

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  73. Praying for all of you today and always. Xo

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  74. Goodnight, sweet friends! Every moment in every day we are thinking of Ty and all of you. God please hold them all in your comforting arms. Amen

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  75. Cindy & Lou,
    What a sweetie you have. In every picture I feel like I am looking into his beautiful soul. I see so many similarities to my own boys. He is just another cute little stinker just like any other boy except he has been fighting harder than any little guy should have to fight. I so wish for him to just stand up & be healed. Sending much love & prayers for Ty and your whole family every day.

    I wanted to share something. I found your FB page through Jack Hoffman's team a few weeks ago and instantly fell in love with Ty. I thank them for that! We have been following Jack's progress and praying for him for a while. Lately his team has been sharing stories of other children that really need prayers while they are fighting cancer. My prayer list of little ones with cancer has grown from 3(Jack, Ty and Becca, a little girl that my 7yr old went to school with) to 8 in just the last few weeks. Have I really been so blind to this (kids with cancer) going on all around me or is pediatric cancer on the rise? I really just don't know. I think for sure that using Facebook as a tool to enlighten the public is amazing! If Jack's team had not shared Ty's story I would have never know of him and would not have the honor to pray & love such a wonderful little soul. I have been so touched by your story. But I would gladly give up knowing Ty & his story if he would have never known such a ugly disease & could just be regular Ty instead of Super Ty... happy & healthy.

    I guess I want to say that September being Pediatric cancer awareness month needs to change to Pediatric awareness year. The best way to make everyone aware is to share the sad, horrible and loving stories of each of these children with all of our friends. Which I have been doing. I know it is way easier to skip over these types of stories because all of us have had some type of grief in our own life and things like this stir up all those emotions. It is just plain hard to hear about a little one suffering. So many people just ignore it. It's like watching the news... if you don't watch you don't know the world is in turmoil so your reality is the world is not in turmoil. Happy blissful life. But that is not the true reality. If you do not know the truth you can not do anything to help the situation or protect yourself. This is true concerning world/local events and with cancer. If no one knows what is happening to these children with cancer no one does anything. But you know this better than anyone.... preaching to the choir. Thankfully there have been so many that took the time to pray for and love Ty. What a blessing!

    I watched part of a movie yesterday that was so sweet and sad called Wide Awake. It was about a young boy dealing with the loss of his grandfather from cancer. The main character Josh writes/read an essay for school.. he said "Before this year bullies were just bullies for no reason, weirdoes were just weird, and daredevils werent afraid of anything. Before this year, people I loved lived forever. I spent this year looking for something and wound up seeing everything around me. Its like I was asleep before and finally woke up. Know what? Im wide-awake now."

    I am sure this has a different meaning to your family but for me it is about being aware of all these precious souls that have so much to offer to the world and are not getting the chance. Also being aware of how blessed we are when our family members especially our children are healthy. Not taking anything for granted most importantly our children's love.

    Cindy & Lou I am wide awake now!!! It's really sad but really good to be awake. I will pray and do what I am able to do. Praying so hard for TY! Lots of Love. God Bless~Christine, OH

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  76. Saying many prayers for you, Campbell family. I think of Ty so many times throughout the day, and we pray for all of you each night. SuperTy is truly a hero in every sense of the word. And you, Cindy and Lou, are an inspiration to us all as well.
    Trish

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  77. MY husband and i read your blog or discuss ur blog every night... i thank God everyday my children r healthy and spend alot of time thinking about how ur child is sick and how much gavan has missed as well in his little life.. i am so sorry ur family has so much suffering but see how much joy u find in ur sons eyes and its such an inspiration... i hope ty doesnt suffer anymore and hope he can have that carnival that he has longed for ...i was so glad to here that ur brother in law and sister if only for a moment helped u smile... hope u find peace.. praying for ur family always ....

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  78. Thinking of you super Ty! It seems by your Facebook that you had a good day today. I'm so happy to hear that! We all want you to have more good days and see more of your beautiful smile. I'm constantly saying prayers for you. Much love!

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  79. Ty is a beautiful, beautiful boy. It is so heartbreaking to read his story. He is such a wise soul and has so much to give the world. All of you are in my prayers.

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  80. Dear Cindy & Lou,
    My heart is breaking for you and your family. I think about your beautiful boy Ty every day since I found out about your story through Rockstar Ronan. I am so very sorry Ty is going through this. I check your blog everyday to see how he is doing. My son was diagnosed with a rare cancer in May (he will be 3 in a few months) and your beautiful boy Ty is included in all our prayers. You are truly an inspiration and an amazing mom. I am finding strength from you and I am so thankful for that. I am praying for a miracle for SuperTy. May God bless all of you!

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  81. I've followed your blog for quite some time now. Can't remember how I came across it. I've wanted to write something but I've never known what to say. Ty is a very beautiful boy, and everytime I see a picture of him my heart melts a little more. It rained here (Virginia) today and I had a few errands to run with my almost 5 year old twins. Normally, as I hold their hands across the parking lots, I steer them away from standing water. Today I remembered Ty. By the time we got home, all three of us were wet from the knees down. The muddy puddles were our playground today. Thanks Ty, for reminding me how to be a kid and enjoy the little things. You are truly one very special boy. My life is better because of you.

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  82. Cindy, I had heard a little about Ty's story over the past 2 years but for some reason never looked at the blogs until a month ago. OH my heart goes out to Ty and your family. I live in Pawling as well, and even though I don't know you and your family personally, I feel as if this is happening to someone in my family. I cry when I read your posts, but yet feel the need to do so, so I can see how Ty is doing. I've even went back to read posts from the past 2 years. His story has significantly impacted my relationship with my own kids as well. I have an 8 yr old daughter and twin boys that are almost 3. It especially hits me when I look and the boys, and one of them is named Tyler. The things that use to bother or drive me crazy just so seem to matter any more. I soon will post a video of my Tyler splashing in the puddles in honor of Ty. I think of Ty often, many times throughout the day, and pray for his healing. I was happy I could attend the prayer chain that took place in the center of town on the evening of his birthday. All of you are an amazingly strong family. I will continue to pray for his healing as I do believe miracles happen, and no one is more deserving of that than Ty. God Bless Ty and your family. Kerri V.

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  83. I love you Ty Ty.. I'm praying for you several times a day and I really hope you feel better, get strong very soon. You are so so special and even though I never met you or your family I feel like your a part of my family. Cindy prayers for you, Lou and Gavin.

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  84. PS you touched my heart and I can say that I love and adore you b/c you are just so special. Cindy please give him a hug from me. God bless you little angel.

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  85. Ty has touched my heart in a way I cant explain and makes me hold my child harder and cherish him more. I havent stopped thinking about Tynsince I first heard of his fightnthis past week. Thank younfotpr sharing your story. I pray for Ty and family

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  86. Cindy,

    Thank you so much for sharing this terrible experience with all of us. Everyone needs a reminder now and then of what things in life are truly important: here they are!

    After being forwarded a link to this blog by my cousin in East Meadow, NY on the day of the prayer circle, I too now pray daily for Ty's full recovery and for the comfort and continuing strength of your whole family - especially you and Lou.

    Though I cry every time I read one of your posts, I find that I'm always looking for the next one. That boy of yours is the very picture of what we should all be fighting to save. And your words about the stunning lopsidedness of our military vs. health budgets sink in with me deeper every day - that truly is, in a word, crazy.

    May today be a better day than yesterday, and tomorrow better still. Stay strong, all of you, and GET WELL SOON, SUPERTY!!

    -Patrick C.

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  87. California, Alaska, Nevada, and Colorado (states my family live in) are sending good thoughts to Ty, you, and the rest of your family. Sweet Pea, you are doing well to enjoy every precious moment you can. Your posts make my heart break and soar at the same time, which makes sense in an odd way. Love always...

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