Sunday, September 23, 2012

A breath of fresh air for Ty


Today was a rough day for Lou and I.  Ty is having more and more trouble getting his words out, and we are having more and more trouble understanding him.  We weren't able to capture any big, genuine smiles today - probably because they were few and far between - but we still made sure to take some pictures of our most beautiful boy.  At one point, Lou was just staring at Ty and started to talking to me about just how perfect he is.  Everything about him.  His lips, his smile, his eyes, his totally awesome hair.  Thank you for all of your reassuring notes and comments.  You're right, we will never forget the perfect curve of his shoulders, the cute little chip in his tooth or the freckle on his foot.  We will remember the sound of his laugh and the feeling of his arms wrapped around our necks at night. But, my God, how we are going to miss all of those things. 

I will never in my life stop longing for his physical presence.  Not for a single minute and this I know for certain. I am not even sure Lou and I will ever be able to sleep without his warm body accompanying us.  I can't imagine it without succumbing to a mountain of tears, so I try not to think about it too much (which is pretty much an impossible feat).  I will be forced to experience it soon enough, so I am trying to keep myself busy with my "cleaning house" and doting on Ty's every need. 


 
My favorite part of today was when I found him in my arms, and he wanted to stay there for a while.  I just walked around the house with him, my hand gently caressing his back, his hair, his face, and after such a long time being unable to hold him it felt almost as good as the day he was thrown into my arms for the very first time.  Then, it got even better.  He allowed me to take him outside.  We walked all over the yard and I pointed out to him how some of the leaves are turning red already.  I didn't even think he was listening because he seemed a little out of it, but when we got to the other side of the yard and I was showing him his swingset, he asked me "how come there isn't any red over here?"  It took me a long time to figure out what he was saying, and he was getting so frustrated, but when I finally realized the word he repeated over and over again was "red" then it all made sense.  I told him that we will have to plant him a beautiful tree with red leaves in that very spot and he thought that was a good idea.
 
After that, I walked him over to a bench and I told him we should sit there and have a date.  He knows this already, but I explained to him that a date is when a boy and girl really like each other and they want to spend some private time together.  He was the best date ever.  We sat there and enjoyed the fresh air for several minutes.  I smothered him with hugs and kisses, relishing the softness of his skin on my lips.  The warmth from the crook of his neck against my face is pure heaven.  Ty looked up to the sky the entire time and I think he was getting lost in the beauty of the leaves in the trees and the clouds above.  It was very special and I hope there is a lot more nuzzling in my future. 
 
For over a week, Ty hasn't been able to tolerate being held or moved around much.  He hasn't even sat upright since last Saturday.  Today, both of those things changed out of the blue.  Ty's secretions have changed from a constant drool to a deeper cough.  Neither of which are comfortable for him, but since the drooling has diminished he has been able to breathe a bit better in the upright position.  I can only imagine how good it must have felt for him to sit up on the couch for 1/2 hour or so.  I could have carried him all day without a single ache or cramp.  I have been carrying him for so long, my back and shoulders were always burning.  The pain was constant.  After this week-long break I didn't feel anything but pure joy and comfort with him in my arms. 
 


I mentioned that he wasn't happy much today, but that's okay.  He wasn't overly sad, either.  I think he is a little uncomfortable, a little bored, a little confused and a little pissed off.  He gets so angry when we can't understand what he's trying to say.  And, with the increase in morphine it only makes him slur his words more and it alters his mental status a little so he might say things that are even harder to decipher.  This is our biggest challenge. 

Then there is his desire to eat.  The last thing Ty put in his mouth was a tiny sip of a strawberry milkshake last Friday (at the Palace Diner - hello Marist!).  Yesterday he mentioned that he was hungry and wanted to eat something for the first time since then, but the lollipop lick that I offered (because his weak swallow can't tolerate any real food) just wasn't appealing.  Today, however, he did try it a few times.  He seems to still enjoy the sweetness of candy, but his ability to lick and taste is so incredibly limited.  Instead we started using the "green sponge in ice" to wet his mouth and make him more comfortable.  Anyone who has cared for someone in a hospital setting probably knows what I'm talking about.  The green sponge today reminded me how far we have come on this journey.  I used them a lot back in September and October of 2010 - when Ty came out of surgery with glue coating his throat and again when the chemo destroyed the protective lining in his mouth and throat.  I brought home a slew of them and never really needed them since.  Even when Ty had thrush or other common side effects from treatment - he always hated and refused the green sponge.  Now he asks for it and it is bittersweet.  He isn't fighting me about it anymore, he has embraced it. 

Why is cancer allowed to happen to children?  My son has been through so much.  SO MUCH!  He is a miracle among us.  I am so grateful for him and I will never stop asking for one more miracle... never... but unless he's going to walk off that couch and be freed from pain for the rest of his time here on Earth, then he deserves all of the pure beauty that is waiting for him on the other side.  Please don't let his suffering drag on any further.  I want to enjoy every moment we have left with Ty, but I'm so scared that it is going to get harder and harder for us to keep him smiling - and that is what he deserves.  Ear-to-ear smiles for eternity.  Nothing but pure happiness for our sweet, loving boy.


Ty in his hospital gown on September 15
I hope I'm wrong, but I think he is just too good to stay.  He always has been.  For two years we begged to keep him here.  We held on for so long.  This is just so, so hard.  My pain is indescribable.  I am riddled with guilt for giving up and letting go, yet at the same time I'm riddled with guilt for making him fight such a long, treacherous battle for so long.  At the end of the day, I go to bed convincing myself that everything has followed the course it was supposed to.  I'll never understand why, but I pray that I have been a good mommy and I thank God every day for trusting me to care for such an incredible little boy who is too good for this world.  Thank you so much for your beautiful, soothing words.  Your comments have been so helpful to Lou and I during our worst days.

96 comments:

  1. My heart is crying for you. Ty has been such an amazingly lucky boy to have such amazing parents and a brother to make his days earth side so special. The wondrous angel he will become.. Prayers and peace to you all

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  2. You have a beautiful boy, two beautiful boys. I read your blog every day, check back several times a day just to see if there is a new update. You and your family are always in my prayers. Its amazing how I can feel so close to you and your family while being hundreds of miles away. Praying for comfort and peace tonight. Stay strong!

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  3. You are so right, Ty is so special! You have been such a wonderful mother to God's gift He gave you! When darkness falls on you, God will surround you with His light! I can't stop thinking about your family and I pray for peace and love for you all!

    Lisa

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  4. Hugs from all of us.

    Mikey's Dad, Mom, Little Brother and Big Sister

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  5. Cindy..You didn't make him fight He fought..he fought tooth and nail the whole way. Ty defied the odds because he is special. I am not overly religious but I do believe everything good bad and different happens for a reason and then shapes us into the people we are. If Ty's time is up on this earth then this would be his time. I believe if his time were up 2 years ago that would have been his time. If his time isn't up for 80 more years then that would be his time. He was put here for a reason he has taught so many people so many things. I have learned more from a 5 year old boy that I have never had the pleasure of meeting yet then in my 45 years on this earth. I pray with all my heart that Ty proves everyone wrong and gets stronger and beats this but if he doesn't this one little boy has changed the lives of so many people it is amazing. Just think about it, you really don't know how many people read your story or know about your story. Let's just say it is only 100 and each of those 100 people have only 1 child. I guarantee that all of those 100 people are better parents and raising happier children because of Ty. So now that is 200 lives that are better. Now imagine how many people the children of your readers touch and change their lives..the number would keep growing and growing and it somehow all comes back to this beautiful little boy that we all somehow came to love through a blog on a computer. Your son is amazing Cindy and the only way he could be this amazing is to have 2 parents that couldn't have done a better job. Your a great mommy and every decision you have made has been selfless and the correct decision. How else could you have such a perfect little boy? I'm praying for all of you..

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  6. Ty has been given the best parents, and God has granted you this special time with Ty. May God support and comfort you in this difficult time. The blessings Ty's story have given thousands can never be measured.

    Even though I have never met Ty or your family, you have changed my life. My heart breaks for you now, but I know this special little boy is truly loved,as is your whole family.

    May God bless you always!

    Susan Staley (Beth Conger's aunt-in-law)

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  7. Cindy, I have to agree with Lou, Ty is perfect! I have noticed this in every picture of Ty, his features are angelic! He is a beautiful child! It amazes me that no matter what that poor baby is going through, he always has his big, beautiful smile on! Truly an angel xoxo

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  8. You are a wonderful mother and your strength is beyond words. My heart aches for you and Lou and Gavin and I pray that you can find peace. Your blog, story and son have touched thousands of lives.

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  9. I agree....he is truly an angel! I love his little smile. I'm so glad you were able to go on a "date". I'm praying you'll have many more.
    Always thinking and praying for Ty and his loving family,
    Marissa

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  10. My God if I could only take this pain away from you, Lord knows I would in a heart beat. My heart aches for you Cindy. In constant prayer for your lil man.

    ~Michelle, North Ga.

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  11. My heart has shattered into s million little pieces. I am praying for you and your sweet, beautiful, perfect little boy tonight, and every night. I am with you. I am crying uncontrollably wishing I could do something to make this pain go away. I don't know how you can endure what you are going through. All I know is that it's unfair. I'm so sorry I can't take this pain away from you. I wish I could. The love you feel for your boy is enough for thousands of people to be touched by it. I feel it like it's right here next to me.

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    Replies
    1. Amen.


      ~Michelle, North Ga.

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  12. Yesterday our Rabbi read us a letter from a man who had cancer and came to the realization that letting go purely means trusting and having faith in God's way. (I will try to email the piece to you. It is well written) He says that life is not "hefker" which means life is not without order. WHen I listened to his words , I immediately thought of your post about the freedom you felt in "letting go". It does not mean defeat, rather it means trust and faith that there is a divine plan. That realization is liberating, and yes, can even bring JOY. You have been entrusted with this gem, selected and privileged, and you have taught us all. You, Ty, Lou, Baby G have made a strong impact on the world that few can match. Ty is an example of the purist, most perfect of God's creations. Perfect in every way. Unforgettable. Lou,Cindy, Ty, Gavin. that is our promise to you. It is the least we can do, for the privilege we have had to share in your story. And all of it,coming across your blog for the first time on AOL, the days and times we have checked in with you, the thoughts and feelings that resulted and continue to result from reading and feeling your words, have had exponential impact on so much and so many. Nothing is happenstance, all of this has no less been God's plan to better this world through one little boy and his family. Ty you are my hero, and will always be. I promise.

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  13. http://www.minti.com/parenting-advice/10569/A-dying-child-a-nurses-perspective-and-what-motherhood-has-taught-me/


    ~Michelle, North Ga.

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  14. As the mother of a lost child to health issues, I completely understand your feelings. I felt I was a bad mom for wanting my daughter's pain to end. I realized after she was gone that her purpose here on earth was to teach me what a mother truly was. It has impacted me every day since and I talk about her often. She was my first child and I tell people, she was here and she mattered. So if I mention her to a total stranger, she is my child and she was here for a reason. People don't always know how to react to my statement, but oh well. Super Ty will guide you even after he has left this earth to raise his brother, as my daughter, Morganna, has guided my raising of my three other children. My son, was born early, only five days after my daughter's birthday one year later. I feel it was a sign from her. Showing me she is still with me and will help me through. I will see her again one day, but until that time, I feel her presence always. I kept her things and a blanket she was in, in a plastic bag in her own memory cabinet. I take it out occasionally and can still smell her. It hurts and makes me cry, but I relish the scent. I hope you can do the same and it provides you some peace and comfort later on. We are still praying for a miracle. We love you Super Ty! Prayers for you all

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  15. Ps this blanket is now 8 years old and still carries her scent

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  16. Cindy & Lou,

    You are an incredible mommy to Ty and Gavin. Please, don't ever question that! I have said this a million times, and I will say it again, your little boy and your family have changed my life! When I say you changed my life, I mean you guys truly changed my life for the better. I have evolved into such a different person and mother, a better person because of your beautiful little boy. I don't think you will ever be able to fully comprehend that the Campbells, have changed peoples lives.

    Someone said to me the other day, Joy why the heck did you sell your business? I just looked at her and said Ty and wrote down your blog for her to read. My children now have a full-time family because of you. Sounds dramatic right? Well maybe it is, but its true.

    I cannot except that Ty will be gone, I just can't. But I will promise you that whatever happens, I will never forget. I have promised myself that I will do something for Pediatric Cancer. Ty will remain in my heart forever.

    I cry and pray for you, Lou, Ty and Gavin every day.

    Joy Marielle
    Baltimore, MD

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  17. Cindy,
    I recently posted, but I feel so compelled to post again. I keep reading and re-reading your updates thinking that by doing that I may be able to take some of your sadness.
    I came across Ty's blog while I was searching for what could have been causing my little girls' sleepless nights. She would scream and cry all night long...it was horrible! All I could do was pray with every ounce of my being that she did not have cancer! When I found your blog, I was beside myself. Cindy, our kids could be siblings...as much as they look alike. Just too many similarities and very close in age. She was eventually diagnosed with servere reflux/GERD and at 2 1/2 yrs old, she finally slept through the night. I only wish that Ty would have received the same diagnosis!
    Ty has changed me forever. In the past when I saw a child with great illness or disabilities, I would say a silent, "thank God that's not my child" and continue on my way. It is unimaginable to think of children suffering with cancer so must of us just don't think about it.
    You have helped give pediatric cancer a true face and shown all of us that there is WAY more to childhood cancer than a bald head and nausea.
    I want to see bracelets being worn that say, "I love kids" not boobies! As a woman with 2 boobies of my own, I would gladly give both of them up if it ment saving a child. I would give my own life if I could! I want to see the NFL sporting pediatric cancer colors, not pink. We need to start saving our nations' children!
    I have committed myself to spread awareness about it, just not sure where to start.
    Who knows...maybe your words may reach the right people and some advances can start to be seen.
    You will always have my continued prayers and support from Sacramento, CA
    Love,
    Tavelle

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  18. You are an incredible Mom!!! When my Mom was so sick and struggled for 4 years, I kept praying for one more day. And I kept getting it, days turned into months. But she always told me that the day would come when she would feel okay to go. Of course I told her she would keep going. But on day, I got that call. She fell asleep and was gone. She knew it would be too hard to let her go and yet her body just gave up. I miss her do much but I have to say I have no regrets. I lived her and cared for her like you have for sweet little Ty. We did what we did because we needed to know we did everything. You too should have no regrets. I don't know you personally but ad one mother to another... Hugs to you.

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  19. Cindy & Lou,
    Your posts are so touching. He is such a sweet & so lucky to have all of you for his family.

    All day Sunday Ty has been on my mind. So I have prayed. You said you believe in signs & I believe this sign was about you & Ty. Around 1:00 in the afternoon I was getting ready for my daughter's cheer/football game I had something strange happen. A dime fell out the shirt I was wearing (it has no pockets & I had not had money/change at all). Then while putting on the team sweatshirt, from my dresser, another dime fell. Then when I went to put my shoes on another dime in my shoe. Then another in the hallway. When I got in my van another dime standing upright in my phone charger. I know it sounds silly but I have never, ever had anything like this happen before..never! I never have really thought much about signs. So 5 dimes today. I lined them all up. I noticed the dates on the dimes were 1983, 1997, 2003, 2011 & 2005.

    Yesterday I posted a quote by Mother Teresa. I am not Catholic but I admire her and just thought that the quote was so beautiful & fitting.I think she is sending us a sign....

    There is a light in this world, a healing spirit more powerful than any darkness we may encounter. We sometime lose sight of this force when there is suffering, and too much pain. Then suddenly, the spirit will emerge through the lives of ordinary people who hear a call and answer in extraordinary ways.

    Mother Teresa was know as the patron of poor, sick and dying. I looked at her info tonight. She suffered a heart attach in 1983 & died in 1997. She was beautified in 2003. So that is 3 of the dates from the dimes. I am not sure if any of the other dates mean something to you. I feel this is a sign from Mother Teresa in some way. Maybe to not give up on Ty's next miracle.

    Mother Teresa was beautified in 2003 because of the miracle that was reported. That a woman who had a large and very visible tumor, had stayed with the Missionaries of Charity. After she and the Sisters had prayed for Mother Teresa’s intercession, the growth, six to seven inches in length, had disappeared within several hours. Finding no other medical explanation for the sudden cure it was declared her first miracle. Over 3500 other reports are being investigated as possible miracles.

    Anything is possible. Anything. I don't want to cause false hope but if we are all praying together & so many of us, we could all be witness to that miracle. Maybe the sign is as simple as the number 10 being a perfect number. Perfect like little SuperTy!

    I just really want that miracle for him & all of you so much. I want him to just stand up & be healed. It was my birthday wish too. He is a beautiful soul. Love, prayers & support ~ Christine, OH

    “Let the little children come to me; do not stop them; for it is to such as these that the kingdom of God belongs." And he took them up in his arms, laid his hands on them, and blessed them. - Mark 10

    Blessed are you who are hungry now, for you will be filled.
    Blessed are you who weep now, for you will laugh.- Luke 6

    Blessed are those who mourn, for they will be comforted.
    Blessed are the pure in heart, for they will see God. - Matt 5


    .... I can see God in little Ty's face ♥

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  20. Dear Cindy,

    You and Lou are the best parents Ty could ever have! Please don't ever questions that!
    Praying for your lovely Ty, as I do every day!

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  21. God bless you all... Praying, praying, praying. xoxoxo

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  22. Love and prayers. Thinking of you always.

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  23. Ty's story has touched so many people. You are all in my thoughts and prayers.

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  24. Ty hand picked you and Lou long before you knew him.......he needed someone so special to guide him through his journey. He did a great job with his selection.....love and strength to all of you.

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  25. Hello Cindy,
    when someone gives 110% to anything there is no room or time for guilt. Please don't feel any, you have given 110% of youtself yo Ty and help him through this journey. May god continue to wrap his arms around Ty and the rest of your beautiful family in the days weeks and months ahead.

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  26. My thoughts, my prayers, my tears, all of them this last week have been for Ty and your family. But I thank God, I thank him for giving Ty such an amazing set of parents to take him through this journey, wherever it may lead. God doesn't make mistakes. You are brave and strong and an amazing mom - do not doubt that even for a moment.

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  27. Cindy, Your post today made me cry. Not just because I hate what's happening to Ty and your family, but because you're feeling guilty for the choices you have made. You and Lou are the STRONGEST, most LOVING parents I have ever come across. You're love and concern for Ty is beautiful. Ty is a blessing for you, and you and Lou are a blessing for him. He couldn't ask for a better mommy and daddy. The choices you have made over the past two years have been based on your love and concern for what was best for Ty. Please don't question it! And I think anyone can see that you are not giving up on Ty, - once again, you are thinking of him, and you don't want him to suffer. You and Lou are the best parents to both Ty and Gavin.
    I continue to pray for a miracle for SuperTy, and also for strength for all of you.

    Hugs,

    Andrea (Beekman)

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  28. Our son died when he was 21 from MDS. We struggled to keep him alive - bone marrow transplant etc. You are absolutely correct that sometimes they are too good to stay. In the end we had to ask for what was best for him. Life will never be the same but by putting one foot in front of the other you will go on. That was 16 years ago and every memory of him is etched in my mind. I think of your family every day and pray that my Erik can help Ty when the time comes. You are in my Prayers.

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  29. When I was going through a hard grieving period for my infant son (nothing compared to you), I wrote out a verse and placed it on my bathroom mirror to remind me of God's promises everyday. It stayed there for 5 1/2 years before I made myself take it down.

    His plans are to prosper you and not to harm you, to give you hope and a future.
    Jeremiah 29:11

    Praying for your strength and peace everyday and for God to put his hands on your precious boy and heal him from any suffering!

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  30. You and Lou are the most amazing and loving parents that your beautiful Ty could have. You should never ever doubt that. All of us who follow your story are humbled and inspired by what selfless and caring parents you both are. I am praying that Ty isn't suffering and still praying for a miracle. Ty is loved by so many. I really hope that this can bring you some small comfort in the midst of this incredibly difficult time.

    Ann from Buffalo

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  31. There is no doubt Lou & you are AMAZING parents, that's why God chose Ty for you. They say children come into your lives to teach you something. I'm sure Ty has taught you both so much, starting with a SMILE.
    You remind me of my mom when she cared for my brother in 1992 to this horrible disease. She would say the same, "If my son will be cancer free & can live a normal life, let him live. Otherwise it's in your hands to take him in live in eternity cancer free!" It's so hard to come to terms with that.
    If its Gods will to take him, he'll never be far, he'll always live in your heart!
    Get the red leave plant & place it where Ty pointed out, sit on the bench & stare up one day knowing Ty is smiling back at you!!!
    Miracles happen & can happen with Ty...again!

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  32. Thank you for loving Ty so much.
    Nobody could be a better Mom and Dad
    to him than you are and Gavin is THE perfect
    little brother for Ty.
    Sending you love and prayers.

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  33. Praying and praying for Ty and for all of your family. You have such beauty and grace in how you deal with something that has neither.

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  34. Please concentrate on letting the guilt go. It is a useless emotion that you of all people should never be burdened with. You have a beautiful, strong, loving heart which gives freely each and every day. Concentrate on the love and beauty of your relationship with your boys and husband. And as always, I wish you all peace.

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  35. I am sitting here in the sun on a chilly fall morning reading this post on a NYC street because I can't wait until I get to the office. I am so eager to hear word of Ty and how he is doing. As always I am crying buckets because the injustice of what is happening to Ty and for what your family has been through. But I am also so touched to read about the special date you and Ty had - how truly incredible and I pray that you and Ty and Lou and Ty have lots of nuzzling in the coming days. I too am praying for that miracle, the one that heals Ty and lets him live a strong healthy life. But if that miracle can't come I pray just as hard to not let Ty suffer - he is far too beautiful a soul and has endured enough. Thinking of you guys always. Thank you so much for sharing your beautiful family with us. Sending love and prayers. SuperTy always....

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  36. Ps - heard that song Iron Man yesterday and made me think of Ty in his costume. Brought a smile to my face.

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  37. My heart aches for you and Lou, I just can't imagine what you must feel. I don't know Ty and I feel so much love for him, but I do know that your role as his mother was specifically chosen for you because of who you are. Since following your story, I think of Ty and you daily, many times throughout the day actually and I often ask myself if as a mother I could be as strong and equipped as you are. I admire you, I am inspired by you and I hope that my thoughts, prayers, tears and belief in your family will help bring on one more miracle for your beautiful little boy.

    Jennifer, NY

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  38. You are such a wonderful & incredible mother. And Ty is an inspiration to us all. I have learned so much from your posts. Your family is constantly in my thoughts & prayers.

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  39. You are simply the most amazing mother and father in the world how can you ever question it. Ty is too perfect too precious and he doesnt deserve any pain and suffering. its so f...ing unfair and so hard. i get angry and sad every minite of the day because my mind just cant wrap around the thought that Ty is not doing good. He was doing so good just not so long ago. I refuse the believe he wont win this fight. He is the biggest miracle that exist on this planet. I pray that you will never stop feeling his hugs and kisses and his warm body in your bed. Tomorrow as i start the 25 hr fast of Jewish holiday Yom Kipur all I will keep asking G-D is for Ty to not only live but live pain free and cancer free. I will be thinking of him every minute. Keep enjoying your warm beautiful dates outside. Love and kisses from Tatiana Kidanov.

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  40. I hope you don't mind but I stole Ty's pic in his Ironman costume for my profile to remember all children with brain cancer.He is an inspiration to us all.And God did know who he was trusting with his special little angel! You and Lou have done more then should ever be expected by parents and done it all so well.I am so glad you got to hold Ty again and take him outside for some air, we all need it to recharge sometimes.It was so good to read that he was able to sit up for awhile and wasn't in to much pain for you to carry him around and enjoy the day.I pray for more special moments for you all to treasure and keep locked in your heart and mind forever.God bless you all and I pray for a wonderful day today for SuperTy!....Jean <3

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  41. I'm so glad Ty got to go outside! Your little boy is just amazing. I keep praying for him and your family. I hope you get the miracle you deserve. I pray for comfort and strength. I cannot imagine what you are going through but know so many people are thinking about you and praying for you! Ty has touched so many lives. Thank you god sharing him with us.

    Allie

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  42. Emily from WisconsinSeptember 24, 2012 at 10:06 AM

    Cindy, The fact that you want the best for Ty, even if it means letting go-that is just further proof of how much you love that little guy more than you love yourself. You are such a selfless mom and person, and you have made life as normal and great as possible for Ty over the last couple years...even during the worst times it seems Ty never knew it was that bad because of you (ie: remember the candy house?!). Don't make yourself crazy trying to understand it all, none of us can. Thinking and praying for all of you.

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  43. Dear Cindy, I have been following your journey with Ty since his diagnosis. I am a writer by profession, but in all the thousands of words I've written over the years, I don't think I've ever written as eloquently and beautifully as you do when you are describing your love for your little boy(s). I'm praying that angel arms will wrap around all of you during this time and carry you where ever you need to go.

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  44. May God Bless you and give you continued strength. I pray for Ty and your family many times throughout the day. I pray for a miracle which will heal Ty from this terrible disease. I admire you and Lou's strength, thank you for sharing your story. I tell my children about Ty and they pray for him as well, they comment on how adorable he is and if he is so sick how come he has such a big smile on his face? He is amazing...

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  46. Cindy,
    No need to to worry, you have been the most wonderful and courageous mommy you could possibly be. Every single word that you write shows us how much you love your child and how you would do anything to make him happy. In the end, that's all it matters. It matters that Ty could have beautiful and happy moments with you and your family; moments that will never be forgotten because your love for him will never diminish.
    Many times I asked myself the same question. "Why is cancer allowed to happen to children?" And I think you have the best answer to it. Because children like Ty are simply too good for this flawed world. They deserve a much better world without suffering - a world where they are free to play and be happy.
    Much love,
    Taciani

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  47. You are a great mommmy. The best.

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  48. Ty is perfect, because he is an angel sent to you. He will always be with you, if not physically, then his spirit will always be at your side. You will never sleep without him, he will always be by your side.
    You are so strong, and amazing, and generous for sharing your story. We all pray for you, and cry with you, and love Ty so much. We all keep praying for that same miracle. God Bless you all.

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  49. Cindy,
    I read your post this morning and thought that I'd suggest dipping the swabs in flavored liquids which will taste much better than just water. I apologize if you've already figured it out. I wish I had a magic pill to keep a healthy, happy Ty with you forever as I wished to keep our Tyler with us. I am not religious, don't know why horrible things happen to our children but am here to offer support if you want it.
    Diane

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  50. What a beautiful time you and Ty shared together. I know you will cherish that moment forever. You are the best Mommy, don't ever doubt that. Your whole family is simply amazing and yes, Ty, is an angel. He has touched so many people's lives. There is so much love for this little guy and I hope you truly feel it deep down inside. We are here with you, Cindy. I have been reading your blog for a long time now and have always felt that Ty was going to beat cancer. He deserves nothing but joy. I am talking to God every day, praying for you and your beautiful family with all my heart. I can't say it enough, WE LOVE YOU, SuperTy

    Sending all my hugs and kisses, Tracy in FL

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  51. Repeat often- I HAVE been the best Mom ever to Ty, and Lou is the bet father.... you two have always acted out of love and that is all that one need do! Take care of yourselves and just soak in every precious moment.

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  52. Cindy, you are an inspiration to mothers everywhere. It is obvious where Ty gets his strength and courage from. I like a comment I read above - you didn't force Ty to fight this fight. - It is the nature of his spirit to be a fighter. You and Lou are amazing parents. Ty is so lucky to have you as his mom. Remember that he is a blessing to you, but also that you are a blessing to him.

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  53. Cindy , Take him outside more go plant that tree Now with him by your side , it doesnt have to be big it will give you so much comfort to know he was with you when you planted it, and over the years you will watch it grow. Oh dear lord if I lived by you I would come plant that tree my self . Cindy when God put you on this earth he knew exactly what he was doing you are an Angel on earth just as Ty is . There is just a sheer curtain between this world and heaven . Ty will never leave you , you will still feel his kisses when you close your eyes and you will still smell his sweet baby breath as the wind blows .
    I just pray that God has you and your entire family wrapped in his arms to take you through this storm without to much pain. Just trust in God thats all you can do . xoxoxo DT

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  54. You are not a good Mom. You are a great Mom.

    And you and your son are an inspiration to us all.

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  55. Cindy and Lou,
    I am a mom to 3 girls and I don't know if I could do all you have done. Never doubt yourself you are an inspiration to all parents. You are a gift to Ty and he is Gods gift to you. I don't think anyone could have done a better at being parents to both Ty and Gavin. I am not that good with expressing how amazing I think you both are . Ty is one of the strongest bravest little boys I know and you and Lou are his superheros. If you can plant that tree with Ty it will be something that you can do as a family. No matter what the future holds you can look out your window and see that tree and remember that happy memory...prayers for the Campbell family...Love from NY

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  56. I wish I could be just a fraction of the Mommy you are.

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  57. I have never commented, but I have been reading your blog since just after you started. I have thought about Ty every day since then and recently he is all I can think about. Your love for him has made such an impact on the way I love my children and I am a better mother because of you. Recently, my 7 year old daughter asked if she could donate all her piggy bank money to children in need. I told her about Ty and showed her his picture and she decided that she wants to spend her money on toys for children with cancer. And she wants to do it for Ty. He is such a brave little boy and I am sure he is reaching more children than just my own. He was put on this earth for a reason, and he will make a difference.
    Jillian - jilliand217@gmail.com -

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  58. Cindy, Lou don't ever doubt that you were not the best parents for Ty. He knows your love and knows that you have been there, unwaveringly, every step of the way. Unfortunately there are so many other kids who do not feel love from their parents. Both Ty and Gavin do.
    This will make you stronger, a voice to fight for childhood cancer. You made a promise to Ty to do this for him. For all the other children who don't get a fair chance.
    I wonder if I would have been strong enough if I was faced with this as you have been. I don't think so. And now you are looking out again or your little boy--not yourself--and telling God that you are ready if that means one more day without pain for Ty. That is the most unselfish thing possible. I truely admire you and your family. As for Ty--well I love him like he is my son and I do admit, I am heartbroken. But I also admire his fighting spirit (wonder where that comes from) and his beautiful smiles. He is truely a fighter and fought a long and hard one. Hell he fought for an extra 2 years and won. You got that precious time with him. And I think you, Lou, Gavin and Ty should plant that tree. Immedietally. It will give you all something to focus on and i bet a place to go and remember when the time comes.
    I am so sorry for what you are going through. You are in my thoughts every minute.
    Jennifer in NC

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  59. It sounds like your sweet little boy knew exactly what you needed at the exact moment you needed it! I am so glad you got some peaceful time with him. Continued thoughts and prayers coming your way.
    Bridget

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  60. Yes, Ty is absolutely perfectly beautiful! What a gift you have been given. May we all begin to cherish the small things in this life and the beauty of God's world. Praying you continue to feel Gods love and peace.

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  61. All I can do is pray and cry. Some people dont understand me....how I can feel sooooo much pain and sorrow for a child I dont even know. I am hurting so badly for you. This is so incredibly unfair. I swear I dont want to accept this, I feel there has to be a different ending for sweet precious lil Ty. I have prayed so hard and soooo much for him. I dont know how you do it but you are an incredible woman and family. I admire you so much. I pray to God with all my heart for another miracle for lil Ty and I pray that God will be with him, you, and your family always. I will never stop praying.

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  62. you are a warrior. I love Ty too. Im wishing him some lollipop dreams today. xx

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  63. Please just enjoy the now. Take comfort in the present time you all have together and try your absolute best not looking too far ahead. I was so glad to read you got out of the house. Hopefully it can happen again soon. I am always praying for another miracle but right now I am praying you all can share peaceful days together and get in as many hugs and kisses as possible. Lisa Asimake

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  64. He is just the cutest boy, Lou is right, every feature..perfect! But the sweet personality is what never ceases to amaze me, I know he has had some bad days but it seems by far, he has been pretty darn sweet and agreeable! I don't know what else to say but thank you for sharing him. I love Ty! My heart is breaking and I hate what you are going thru! Will we ever understand the why? I am so glad he has the best mommy and daddy, you two have went to ever extreme and possible means. I think you have always made the right decisions. wish I could just spend a weekend with the both of you! I think we'd have a ball, your families seem so much like mine..Love & Prayers, Terri

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  65. Ty looks great in the above photos! I was so thrilled reading your paragraph about taking him outside. What a wonderful memory to treasure.

    I am still amazed at your family and Ty. He seems to have the best attitude throughout it all.

    Love the little guy SO much,
    Jan
    Georgia

    PS I thought of Ty ALL weekend. He never seems to leave my mind for long. He has so many cheering him on.

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  66. I think as mothers, we all feel guilt about so much that we do or don't do for our children and we're hardest on ourselves. Let me tell you from an outsider's view that you have nothing to feel guilty about. You have done what your heart has led you to do and that's the best thing you can do is listen to your heart. Of all the emotions that you have, please don't let guilt be one of them. I'm praying for all of you, and my heart is breaking for you.

    Jenni in Ohio

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  67. I am sitting here bawling. Tears are streaming down my face and there is a huge lump in my throat. I have never met your family, but I feel so connected. As a mother of three boys and an adult medical/surgical nurse, I can't believe what is happening. My heart is breaking. Cindy: You're a wonderful mother!! You are doing so much better than I would be in your situation. I admire everything you do and say. I love that little guy of yours so much. He is absolutely adorable. (So is Gavin!) :) It pisses me off to think that Ty won't be able to go to school, get married, or have children of his own. I HATE FU#$#@# CANCER, It's bad enough when it happens to adults, but children! I have been donating money monthly to pediatric cancer for over ten years now. How I wish that one day cancer will be eradicated just like polio. Meanwhile, your family will always have a special place in my heart. I love you, Ty!!

    Laura in Texas

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  68. Cindy, you are such an amazing woman. I know you may not feel like it but you are strong and an amazing mother. I want to thank you for this blog. For putting your family's story out here for us to read. I believe that Ty's life no matter what will go on even if only in spirit. His life has taught me so much. Your fight for him is amazing. Since I started reading this I have learned to never take another moment for granted. I will lay next to my son and just put my nose in his hair and take a deep breath just to remember his smell. I have learned more patience and care with my daughter. (I was never mean with my kids just put to much time in my career)I have learned that tomorrow isn't promised and to enjoy everyday with your children and loved ones. Ty has taught me to be a better mother. Your fight has taught me to be a better mother. I think of your family daily and pray for you. It is hard to put this all into words but I beleive that no matter what Ty will live in all of us that have been reading your blog. We will all be more aware of Pediatric Cancer. I believe God sent us to your blog to learn. Ty is my lil angel, his smile is beautiful and his spirit is strong. I wish I could of explained everything a little better. God Bless.

    With Love,

    Sarah, Florida

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    1. ""Ty has taught me to be a better mother. Your fight has taught me to be a better mother. I think of your family daily and pray for you. It is hard to put this all into words but I beleive that no matter what Ty will live in all of us that have been reading your blog. We will all be more aware of Pediatric Cancer. I believe God sent us to your blog to learn.""




      I could not agree more with this statement...I believe it with everything in me.

      ~Michelle, North Ga.

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  69. Your post brought me to tears. He is such a beautiful boy. Looking at his soulful eyes was a pure blessing. Enjoy your time with him and know he was a true gift from God. Your family is in my prayers!!!

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  70. You are AMAZING parents!!!! You would go to the end of the earth for your beautiful boy. He will be free soon enough. You will never forget that sweet little angel. I know this because I feel like I will never forget him! He has touched so many lives because of his battle. He is a constant inspiration and so are YOU! Stay strong lots of prayers coming your way! Hugs

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  71. Dear Cindy and Lou,

    DO go to bed each night assuring yourself that all things have taken their proper course in the perfect timing!

    We think we are paving the way with our decisions, but the way is already paved, and the same forces that pave the path are those that nudge and guide us along in its direction. We have a limited and skewed vantage point, and we think we can control things to go in what we perceive as the "right way." Struggle and fight as we may, we are trumped and redirected to the divine plan. If we surrender and trust, we make the same headway on the divine path. If we fight and struggle and second guess ourselves, we make the same headway on the divine path (it just feels bumpier).

    All of your decisions have been the right ones. Congratulations! You have been divinely guided. Take a great sigh of releif that you are not God! Surrender and know that you are a wonderful people and the BESTEST MOTHER AND FATHER!!!

    xoxoxo

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  72. You believe in angels,this I know, you believe there is a purpose, this I know too(though its painful to watch your child in pain and helpless in taking away that pain)but I know that God chose you for his purpose. Ty chose to be on this earth, he chose YOU and I believe he chose wisely. He knew his visit would possibly be short, and he knew you would be the best parents for his stay. He knew you would capture his smile, his curls, his toes...he knew you would make sure the world heard his voice and saw his strength. He knew. I wasn't sure I could actually get a decent thought down, as a mom myself, my heart aches for you both. Ty is a beautiful soul in a little boy's body. You have been blessed with such beauty. I pray you have many more beautiful days to touch his hair, smell his skin, feel his arms around your neck. I still pray for that miracle too! Thank you for sharing your triumphs, your trials and your tears. Amazing just doesn't seem like a big enough word for you and Lou. May God continue to bless and keep you in the palm of his hands.

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    1. She's right, there just isn't a word big enough to explain his true awesomeness..lol "perfection is the closest I can get to describing Him" ;) but You Cindy, I describe you as My Hero.


      ~Michelle, North Ga.

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  73. I have to agree with what jersey girl says. We always hope and pray for our children to leave a mark and make a difference. No one would ever ask for so much sickness and so many hard things to endure to be the way it happens. But it happens to be the way Ty has made his mark and so have you. You are heroic in your tenderness and strength - amazing parents.
    I just keep thinking the way the painful journey is so beautifully and personally chronicled in the blogs is such GIFT to others.
    It is such a privilege to be "let in" to someone's heart. And you have let us in - thousands of people you have never met. It is incredibly humbling and inspires an important shift in how we value everything, every little thing.
    Those darling smiles, how is it even possible? Ty is so, so amazing. It reminds me of Jesus saying that childlike spirit is what the kingdom of heaven is like.
    I am praying God will have just the right grace for the next step in this for you.



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  74. cindy in my school I have written Ty on so many people's hand it's wonderful I have so many people praying for u. with my love and prayers


    ali pope

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  75. I want you to know that Ty (and Remy) have made me more grateful for what I have. I so wish I didn't have to learn this lesson through your pain, but nonetheless it has taught me to appreciate my own children and everything that I have. I don't know if you're aware, but my middle son, Noah, has autism. It can be very challenging at times to raise him, and I often hear myself wonder, why us? But for all his challenges and the uncertainty of his future, he is a healthy, happy, and loving boy. We are blessed to have him, even with his special needs. Watching you all suffer through Ty's deteriorating health has made me hug Noah more and appreciate the gift that has been given to me and Phil. I am so, so sad for you. Hugs and kisses always.

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  76. Cindy,
    You have not only been given the gift of being Ty's mommy, but you have also been given the gift of words. There are not many people who could write their innermost thoughts and fears as you do for all the world to see. I know as a faithful follower of SuperTy how much it means to hear your updates on Ty. You are all so loved. We all talk about how wonderful and perfect Ty is because he absolutely is one of God's most precious gifts. I would like to say tonight that you, Cindy, are pretty amazing yourself. The way you care for Ty along with taking care of your family and then still after being totally exhausted take the time and the energy to sit and write as we all wait so eagerly to hear about our precious boy. As a mother, I know that all mothers love their babies but not everyone could do what you do. That is something special and that I feel was given especially to SuperTy's mommy for a reason. The Campbells will make a difference. And when I say, Cindy, that you are special, I know that you couldn't be who you are without Lou so he is amazing also.
    I loved reading about your date with Ty. I know you are making memories every day. I wanted to share one quick memory with you that maybe you could make if you desire to. When our baby girl passed, my husband played "Daddy's Little Girl" and danced with her while she was in his arms since he wouldn't be able to at her wedding. I often think of that memory now and it gives me comfort. Maybe you could pick out a perfect mommy-son song and have a little dance with Ty when he lets you hold him so you have a little piece of a wedding dance with your handsome son. And I still hold out hope and faith that Ty just may be here for his wedding. We will never give up on him, just the cancer (as you said so perfectly)
    I hope you have a peaceful night snuggling with your precious, precious baby boy.
    Lynne

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  77. Cindy~ Ty is an inspiration to us all. If only we could all have half the strength and courage he does. As well as you and Lou. I have been out of the country for the past week. Reading the past weeks posts were heartbreaking. But I pray that Ty finds peace in all of this and he can finally be free in whatever the future holds. You and your family has taught me soo much and I can't imagine my life without ''knowing'' your family. No matter what happens you have Ty in your heart. I am not sure how you feel about this... But I recently found out I was pregnant. And if we have a boy my husband and I would like to name our baby Ty. To always remember him and to keep him in our hearts. We feel so close to your family. And to me Ty means courageous, strength, love, hope, happiness and soo much more.
    I will continue to pray for Ty and the whole family. May you all find peace and continue on with the strength that has brought you this far.
    Aprilmae_0331@yahoo.com

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  78. I believe there are angels among us. I believe in miracles. I believe Ty is a miracle. I believe God will make the miracle and I thanks Him for it. It is in His hands. I believe you both are great parents. I believe you've had great Doctors. I believe you have a fan cluib of supporters praying for you every minute. I believe that cancer can be defeated. I believe the cure for it should be published already. I believe your time with Ty has been the one you needed and God will never leave you side. I believe that no matter how far we are our love for eachother has NO limits. I believe that you and Lou should hug each other tonight and know that through all the pain you have endured you have to make this coming days a burst of love. I believe your love for each other has grown stronger and deeper. I believe your parents, family, friends and unknown have accompanied you through this journey so we all can see, feel, learn and believe that love has the power to change things. I believe I want yo uto feel the peace that the simple things can bring.

    WE LOVE YOU TY
    WE LOVE YOU CINDY
    WE LOVE YOU LOU
    WE LOVE YOU GAVIN
    WE THANK YOU GOD

    Remember:
    Love is our true destiny. We do not find the meaning of life by ourselves alone - we find it with another. - Thomas Merton

    Being deeply loved by someone gives you strength, while loving someone deeply gives you courage. - Lao Tzu

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  79. My tears and prayers are with you. I cannot imagine the pain you are enduring. I thank you for sharing your love and your journey. I am praying for Ty to be in the loving arms of Jesus. And I pray for you, that you too may feel the love of Jesus.
    Prayerfully, Gail Orser

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  80. Cindy-
    Thank you for sharing Ty's story. You are a beautiful writer. I live in Pawling and also have two young children. They attend the same great preschool as Gavin and Ty. You and Lou are amazing parents - truly the best. You make every parent want to be better. You are humble and selfless and remind us all of what really matters. I pray for the four of you all the time and proudly wear my SuperTy T-Shirt. I hope and pray that somehow any guilt you might feel can be erased. NO ONE could have done more than the two of you. You are an inspiration.
    I will continue to keep you all at the very top of my prayer list.

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  81. Cindy,
    My heart breaks for you and Lou. The love and strength you two have shown your son is remarkable. I pray for the four of you every day.

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  82. Sending all of our love , prayers and strength. Our hearts are breaking.
    Love The Papitto Family

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  83. Nothing can ever break the bonds of love - Ty will always be with you. We lost our son Ryan almost two years ago and he gives us many, many signs that he is OK and is still with us in spirit. Ty will do the same; I have no doubt. You and Lou have have demonstrated what true love, dedication and strength of faith looks like. Ty is blessed to have you as his parents. You are an inspiration to all of us who are sharing this journey with you. I don't understand how this world works or why there has to be so much sorrow; but I do believe that God will work all the tears and pain into good somehow. He will not let this be in vain. I will be honest; there will be many difficult moments, the hole in your heart will never be filled, but you will make it through. May you feel the comfort and strength of Jesus and the angels that surround you. love to you all, Nancy Kreiss

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  84. Cindy, you are the best mommy in the world and your blog has effected so many people's lives, including mine. I let my 3 year old run and jump through the sprinklers yesterday because I thought of Ty's love of muddy puddles. It's pure magic to see a child's true, genuine joy. Time goes by so fast, it's so hard to hold onto all the precious memories along the way. I think you are amazing, Ty is a rockstar, and I am always praying for a miracle for him. We lit a candle for him at church on Sunday.
    Always hoping and always praying for Ty and your family.
    Love, Marcela
    Reston, Virginia

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  85. Cindy, you are an amazing mom. I think about Ty all the time. I cannot accept what has happened to him. I pray for a miracle for your precious boy. Through your beautiful words, and your amazing love, you have made Ty, everyone's little boy, and he is our hero.
    Kathy from South Philly

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  86. my heart is breaking for ty and all of you. i can feel your pain and love and it is excruciating and beautiful. you are being such a wonderful mommy to sweet ty. my prayers are with you.

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  87. I think you are so BRAVE and STRONG to share Ty's story! I graduated High School with Ty's Aunt Debbie and have been following his story for a while now. I now live in Ohio and I want you to know that Ty is on our prayer list at church and so many people are praying for him and for your family. The Love that you express is so overwhelming and it and God are what is going to get you through this!! You're all Amazing! God Bless!!!!

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  88. Cindy,
    God entrusted Ty to you and Lou because He knew you were the best parents for this little angel. You have never given up, never made him fight harder than he should, and you will never forget how sweet or special he is to you and your family. What a sweet memory you will have of the two of you sitting on the bench. You remain in my constant thoughts and prayers. I ask Him to please give you strength, peace, comfort, and healing.

    God Bless,

    Janet
    COLE'S Prayer Team

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  89. I have just recently started reading your blog and cry each time. You are all fighting the hardest fight of your lives..one that will never be forgotten.

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  90. I cannot imagine what you are going through. You are an amazing mother.

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  91. My sone Luke is participating in a Trike a Thon (age 3) at his school for St. Judes the week of October 15th. He is participating in Ty's name. See link below. Prayers to you and your family. Sincerely, Melissa Mullamphy, Pawling NY


    https://waystohelp.stjude.org/sjVPortal/public/displayUserPage.do?programId=751&userId=873452&eventId=325241

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  92. Ty, My thoughts & prayers are with you & your family. God Bless.

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