Wednesday, October 10, 2012

Let's see what tonight brings us

Two nights ago, Ty woke up vomiting about 10 - 15 times.  It was terrible.  We were on top of all his medication and nothing had changed in his regimen.  There really is no other explanation other than the unpredictable nature of his neurological disease.  Last night, for example, he slept beautifully and didn't throw up once.  I felt so well rested today for the first time in a very long time.  I'm sure I'll ruin that by staying up until three or four tonight, only to be woken up by Ty soon after.  I hope not, but that would be par for the course.  I have insomnia so that certainly doesn't help. 

Tonight?  So far, so good.  I heard something earlier in the night and ran in to check on him, but it was just hiccups!  Phew!  We'll see how it goes for the rest of the night.  This is what caring for Ty has been like for almost the entire duration of his journey.  We don't do anything different from one day to the next, yet we can never explain why one day might be so pleasant for him while others are so miserable. 

One thing we all know for sure is, Ty Campbell is a fighter.  And he is a love.  And he is a goofball who loves to laugh.  Ty loves life and there is so much fun that he wants to have.

I have spent a lot of time tonight trying to catch up on the hundreds of birthday wishes, muddy puddle photos, gifts and donations we received for Ty's birthday.  Thank you!  I am trying to write back to everyone, so I hope if you haven't heard from us you know that we are so grateful and you will hear from us soon.  In the meantime, I will keep tonight's update very short so I can get back to your thoughtful comments.  I truly enjoy reading each and every one.  So much so.  Everyone has been so kind and so supportive and it helps us get through these most difficult days more than you can imagine. 

Ty had such a peaceful day today.  Lou and I enjoyed his company and kept him comfortable.  We suspect, however, that he can't really see the TV anymore because he insisted on keeping it off the entire day.  Which is a blessing and a curse when trying to keep a now five-year-old entertained all day when communication is an issue.  It's a blessing because we were able to read books, browse through toy catalogs, look at all of his presents and peruse his abundant candy collection.  A curse because Ty gets so sad when we can't understand him and sometimes we are desperate for a distraction. 

That really is one of the saddest things that happens to Ty.  There are days (now, of course, but there have been other terrible periods during his long and courageous fight) where we just can't understand his speech.  He just gets so weak and he is so neurologically compromised that he can't get the words out.  It is so sad when he wants to tell us something but we just can't understand.  We have gotten so good at translating his garbled whispers, but even Lou and I fail him sometimes. 

Today was a good day regardless.  It was quiet in the house, which helps in communicating with Ty.  It also helps us to enjoy the peace that Ty brings us when we hold his hand or kiss his cheek.  He took a nap in the afternoon which he never does, and I think that is why he was so calm throughout the day.  He had little nausea, little congestion, very little head pain... nothing to complain about, really. We are so happy that he is comfortable and doing okay.

Today our smile of the day is brought to you all the way from Germany!!  Judy!  Urlricke!  Thank you.  As soon as we saw the International postage we knew it was from you.  What a thoughtful and special care package.  This reaction is priceless.  Made my entire day to see how his face lit up. 


Short and sweet tonight.  Thank you for loving Ty and continuing to share his story. 

117 comments:

  1. What a beautiful smile from a beautiful boy! Big hugs and lots of love to you all.
    ~Chrissy

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  2. Sweet dreams tonight, sweet SuperTy!! Sending love, peace and prayers.

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  3. I am keeping your beautiful family in my prayers. Your writing is so beautiful. My mom and baby sister where killed a few years ago I know how painful it can be to lose some one you love.. And Ty is so loved.. Your family is beautiful, you guys give me hope to try harder in college. I love you guys, keep fighting :0)

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    1. Prayers for you too sweetheart. I am sure your mom and sister are so proud of you. You can do it!

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    2. Prayers for you too sweetheart. I am sure your mom and sister are so proud of you. You can do it!

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    3. Thank you.. You know I never really got closure and reading her stories gives me that, I have no children of my own but I feel such a deep connection. I pray that little Ty gets better.. <3

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  4. Love and prayers to you all! Here's wishing Ty a peaceful and pain free night!

    Lisa

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  7. I have only recently begun reading your story, but in such a short time I really feel like I have come to know Ty. Your writing is so beautiful, I actually went back and read the whole story from the beginning. I laughed and cried for hours. Thank you for sharing and letting us all come to love Ty. I am a mother of two boys myself and I can't imagine what you are all going through. Thank you for letting us in and letting us love Ty too.

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  8. That smile is just so beautiful.ilovety.

    Denise

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  9. Everyday I look forward to reading your update about Ty and seeing him smile makes me smile too! I don't know you in person but I already love your beautiful and brave boy and I pray everyday for his healing and complete recover! Have a good and sweet night baby boy! May Jesus' love and comfort be with you always!

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  10. Do you have an email address we can reach you?

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  11. Cindy, your son is amazing! For that little boy to smile knowing what he is dealing with is just unbelievable and it really proves just how special a person Ty really is.

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  12. I'm glad Ty is having a good day .. && its good to kno u are getting some sort of sleep .. I also suffer from insomnia .. so I kno wht its like .. I wish the best for y'all && I greatly appreciate the replied email from u ..

    with much love,

    Aiden ((3)), Jr ((1)) && Sofii

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  13. He is so beautiful.. He reminds me to live life and do all the silly little things! There's not a day that I let Obsticles stop me from doing what I want to do. I live for Ty by enjoying all the little things like walking, talking, laughing or just sitting in peace. He makes me count each and everyone of my blessings. He truly is an angel and he is always in my prayers. <3

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  14. What a beautiful and precious picture of Ty! I love it!
    Love and prayers from Germany!

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  15. It's such a relief to hear you got some rest and Ty had a good day today! I pray he continues to feel comfortable and well.

    I remember how upsetting it was when I visited and we could not understand him. And how he's so smart you can't fool him for one second as if you understood. I'm sorry you have to live with this aspect of his illness. I will pray that Ty can express himself.

    Tell him you understand his every word in your heart, even if you can't always hear them from his mouth. Tell him your hearts are talking to each other and having a conversation.

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  16. Love and warm hugs from Finland! I recently began reading Ty's story and have been amazed of your strength and ability to still enjoy life's beauty. This blog of yours really puts things in perspective. Thank you for sharing. Hopefully those guardian angels take care of your whole family in these difficult times.

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  17. Sending love and prayers from South Carolina. I too just recently started reading your blog and have changed so much from Ty's story. He is such a brave little man and has such an amazing family! I'm so happy to hear he had a better day today, I hope each day gets better and as always pray for that miracle. <3

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  18. So happy to see another good post. Wish all his days can be so good. He is such a little love. Thinking of him always. Hope he had a good night.
    -Jennifer R

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  19. May the Lord bless Ty and your family.

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  20. Im up at 3am, as nature calls, and just had to check my phone to see if you posted. When I fell asleep earlier, there was nothing. I'm so drawn to your writing and way with words, but even more so, I am drawn to Ty's story. I was happy to see a new post, and even happier to see a big smile of the day.
    I think about you and Ty many times throughout the day. I have a 5 year old, Charlie. I let him buckle my belt for me a few mornings ago, even though it meant we might be 2 minutes late for school. He wanted to so badly. I did that in honor of Ty. Yesterday morning I was making my bed and while I had the comforter up in the air trying to fluff it out and lay it down perfectly, Charlie jumped on the bed so the comforter landed on top of him. He belly laughed. I really had to get in the shower and get to work, but he begged me to do it again, and again and again. It brought him such joy, so I did it about 10 times. That too was in honor of Ty. I'm a better mom because of your words and your story. I'm a better mom because of Ty.
    Ty is everywhere.
    I hope he has a peaceful day today, and every day for that matter. Put some music on and dance for him.
    Thank you for sharing your life. You're changing the world one blog at a time. ;)
    Much love,
    Emma from Los Angeles

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  21. Love, love, love that gorgeous smile. Thank you for sharing him. No words ever seem right...just sending love and positive energy your way! LOVE YOU TY!!

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  22. I started following Ty on Facebook and reading your Blog for 2 weeks now. Your story is heart wrenching,your writing is amazing and your love for your little boy is contagious. Ty is a inspiration for so many to learn about and contribute to his research fund! I envision in years to come this foundation having the same impact as Breast cancer pink Ribbon! I for one share Ty's story everyday! I Pray for your Little guy and my heart aches for you all! God Bless!

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  23. Thanks for sharing...your feelings but most of Thanks for sharing TY with us. I read your posts every mornind and Thank God you are still writing and TY is still smiling. Blessings to all!
    Jo-Ann

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  24. Ty is the most amazing child. When you share photos of him smiling, even while going through all he's been having to endure, he lifts my heart. He is a special little boy who is feeling your love even in the worst of times. He is so incredibly lucky to have you, and you he. What a blessing he is! I'm still praying every single day that God brings you a miracle. Peace and love to all of you <3

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  25. What a smile! He really is such a perfect angel!
    I hate that he gets sad about the communication, but love that he had a peaceful day and that YOU got some rest last night. We are all still praying so hard for him. I kneel in front of my "Ty candle" every night, focusing so hard on your beautiful boy and family.
    As for you replying to everyone, don't waste a single second worrying about that. Just soak up every precious moment with your beautiful boys, and rest when you can.Happy moms have happy kids, so don't forget to take care of yourself (I know, easier said than done).
    Go Super Ty!!! Keep fighting brave warrior!

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  26. Thank you for the beautiful picture of Ty's smile. He is such an amazing boy and his story has touched so many. Your family continues to be in my heart and I pray for the miracle of his full recovery.

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  27. I have been following your blog and keep Ty in my prayers. I really believe in a miracle for your sweet boy. I live in Northern Westchester and am a Reiki Master. I would be more than happy to come and do Reiki for Ty at no cost of course. I have a small inkling of what you are going thru as my own daughter has a serious genetic syndrome and has had 2 heart surgeries.
    email me at lsoraci@gmail.com if you would like to take me up on my offer.
    God Bless Ty.
    Lisa

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  28. Amazing amazing amazing,you show what's important in todays world,will be thinking of Ty

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  29. Thank you for sharing Ty's heartbreaking journey. I have been deeply touched by Ty's courage & his heartbreaking journey. Ty has captured my heart & soul. My continued thoughts & prayers are with Ty & all of his family. God Bless.

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  30. That smile of the day just melted my heart! God Bless your sweet little boy. Now & always Xoxoxo

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  31. I saw the post that said Ty is everywhere and that is so perfectly said. SuperTy is a super soul, bringing so much to the people he touches and you and Lou are amazing for sharing him with us all. Always praying for you all.

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  32. Sweet smiles from a sweet soul, so glad he felt better. Always, always, always saying prayers for your family Cindy and Lou and especially for Ty; what a trooper. :)

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  33. So happy that Ty had another good day and you were able to get some sleep. Love when Ty smiles! He lights up everyones world with his beautiful face. God hears our prayers. Praying for Ty's miracle healing. I love you Ty! Cindy, you are amazing as is Lou. Love and prayers for the Campbell family. Xoxoxo

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  34. He is such a beautiful boy....and his parents are so strong he is as lucky to be your son is as you to he his mom!!! Your family is the first thing I think about everyday. I'm praying for you all!!

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  35. I am so relieved to hear Ty had no vomiting! As a parent I can't imagine my child vomiting every 30 minutes and feeling so helpless. This is such a horrible disease that no family should have to endure.

    And through it all Ty still smiles, he is such an amazing little boy. I reference him alot in my house. When my daughter who is 7 starts complaining about what we are having for dinner or having to do her homework I pull up this website and I show her Ty laying there unable to communicate and feeling so weak and sick and I tell her that he would switch places with her in a heartbeat. So stop complaining and be thankful for all of your blessings.

    I think of Ty often throughout the day and pray that he is having a good day. You guys are just so awesome with him. Don't ever feel like you are failing him because you guys are doing the absolute best. I honestly don't know how you face the day dealing with everything that is going on. You are an amazing woman.

    We are still praying for a miracle and praying Ty has a smooth day full of at least one smile. Love from our family to yours!

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  36. So glad Ty is having a good Ty and giving you those beautiful smiles! Continued prayers and peace.

    Ann from Buffalo

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  37. what if you made flash cards togother. funny drawings or magazine pictures of common things Ty asks for, so when he is frustrated about what he is trying to say, you can pull out the flashcards, lighten the mood, and try to figure out what he needs? it may not work, but it may make him feel less frustrated when he gets to go through the funny pictures you put togother?? just an idea. Love to you all every day!!

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    1. This is a good idea! Remind Ty that so many around the world are thinking about him! Always.

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  38. Cindy, I so look forward to your posts every day, especially Ty's smile of the day! As you will see, I couldn't wait to share it on my Facebook page this morning. Ty's story has touched me in a way that I never imagined possible. I have been forever changed because of that little boy and his amazing family! You and Louie (sorry, I have a hard time calling him Lou,:) he will always be Louie to me) are truly an inspiration! And Gavin is such a little doll. Ty is on my mind every minute of every day. It hurts my heart to know that there is nothing I can do to take his pain away. I will continue to spread Ty's message and keep believing because I KNOW that there is a miracle out there with Ty's name on it! Thank you for opening my eyes to what life really is about.
    Lots of Love,
    Debbie

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  39. What a beautiful boy! Praying for Ty everyday, he is such an inspiration as are you and Lou.

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  40. love that little man and his smile <3

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  41. Always praying for your beautiful Ty. He has a spirit that was meant to be shared with the world and teach people about unconditional love, hope and courage. Prayers for Ty's comfort, for you and Lou to understand him and for some great big smiles and of course what we are all praying for, Ty's full miraculous recovery! Love, Kathleen Ryan from Smithtown

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  42. It makes me so happy and sad at the same time , seeing Ty's beautiful smile everyday.I look forward to your post every morning and look for that smile photo.I am still praying intensely for your miracle and do believe it can happen.In the meanwhile I pray for peace for your family, that Ty does not suffer anymore pain and that you all get to enjoy each others company everyday.I wish I had the chance to meet your wonderful family but feel as if I have known you for so long.I love Ty and will continue to pray as hard as I can for all of you. God Bless. <3...Jean

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  43. I love all the pictures you post of Ty, I was just thinking, if possible, you should take lots of pictures of Ty and Gavin together, or the whole family. You want to get as many pictures of everyone together as you can. My thoughts and prayers are always with you and your family.

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  44. So so happy that Ty had a good night and day! I KNOW God is hearing our prayers....I will continue to pray for complete healing and to strengthen Ty, You, and your family as you go through this fight!

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  45. Still praying everyday--he is beautiful!

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  46. I am so thankful to hear that Ty, and you, had a great night and lovely day. He is precious beyond words and what a beautiful smile. Always in my prayers.

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  47. Ty, you never stop suprising us because you are the strongest bravest soul I have known. Your smile lights the world, your face captivates everyone and your eyes sparkle stronger that all the stars of the universe. You are just so special. I pray you are not in pain and that you are not sad and still able to enjoy your days. I really dont know Cindy and Lou how you do this, but I guarantee you that I dont think anyone does it better than you caring for such an amazing precious G-D's gift as superTy is. Going to say a special healing prayer for you now.

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  48. Carolyn cfh237@nyu.eduOctober 10, 2012 at 9:29 AM

    Hi, I am pretty new to following your story and I realize that you've mentioned that Ty is on hospice care. So I don't know if you can get access to a speech pathologist, but since I am one, i thought I'd mention it. Maybe you could try teaching him some signs so that he can communicate basic messages without speech. You could even try signing in his hand if his vision is failing. That way you will continue to have a way to communicate if other senses begin to fail. I am not at all sure where you live, but I am in Putnam County,NY and would be willing to help if you need it. God bless you, Ty and all families suffering from pediatric cancer. I am so sorry this is happening.


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    1. I did a little quick research and found a link regarding federal law and hospice provision of speech pathology services. Maybe it would help.

      Www.hospicepatients.org/hospic69.html

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    2. That's a very sweet idea, but if I'm not mistaken, Ty is unable to move from the neck down.

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    3. Well, in that case, there are augmentative and alternative communication devices that might be appropriate. He could really use an eval by a speech pathologist who specializes in that ASAP.

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  49. I found your blog through southeast patch. What a moving story. I've read through some of the entries, through tears, for a boy I don't know. I'm praying for your miracle.

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  50. I'm hanging on to every post, like most of your blog followers. My email alerts seem to be very delayed so I find myself desperate to log directly onto the blog to see what the latest developments are. I tear up with every post but today the tears really fell when you mentioned that you feel like you are failing Ty when you can't understand him. My 4 year old son has been seeing a speech pathologist for nearly two years and I know how frustrating it can be. You and Lou are Ty's heroes and I know that parents have a special way of communicating and understanding their child like no one else. I'm literally praying all day, every day for a miracle, Cindy. Thank you for sharing your story and for sharing Ty's smile. What an absolutely beautiful smile it is! We are all blessed to get even a glimpse at how SUPER Ty really is.

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  51. This little guy is truly a miracle, how great is it to see him loving his life, and his incredible big smiles! Keep going, keep fighting:)I love you,Ty, and rest of the Campbell family.<3 I pray for you each and everyday. All my love and blessings, all the way from Hong Kong. :)
    XOXO Jenika

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  52. What a beautiful smile! i am so glad that you got some sleep to renew your strength. Praying for your family.

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  53. Love to see his beautiful smile! Always in my thoughts and prayers! xoxo
    Denise

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  54. What an adorable smile!!!! I know im going to have a great day at school today because of that smile : ) I hope u continue to have good days and nights. You are the bravest and strongest little boy I know. I shared your picture with my little boy who is also 5 years old and he just loved all your birthday goodies you received. I also talk to my 13 year old daughter about you and to my mom as well. My best friend just recently liked your page too and I told her so much about you already. I keep praying and wishing for a miracle. God Bless you

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  55. I hope you had a restful and peace filled night! Praying for you always.

    Allie

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  56. I never know my heart can explode with love with someone I will never meet (I am all the way in Asia,Singapore), But I did..when I saw "Ty's smile of the day", my heart just melted and exploded with love! He is simply beautiful and super amazing!! Oh God! Please perform your healing miracle, let Ty be the miracle child everyone is praying for! Please hear our prayers and continue to give strength to Cindy and Lou

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  57. Glad to hear of a good night rest, but I wish you didn't have to worry every minute of every day of what will come next. I am so sorry that Ty's speech has become so compromised, maybe the flash card idea is a good one!! Anything to help you guys communicate.

    I will continue to say prayers - I just don't want to believe that Ty's body is winding down - I really hold on to the hope he's just getting the rest he needs to repair himself. You all have taught me so much I just can't imagine a world without his goodness and light in it.

    My promise to you, Lou, Gavin and Ty - and all the other families battling Pediatric Cancers - is to keep talking about Ty, keep talking about Pediatric Cancers and finding a way to make Going Gold in September a reality. It took time for Breast Cancer Awareness month to get the support it does now - and it may take time for September to be awashed in Gold, but we're going to do it. I just know it.

    Sending love and hugs to you all. SuperTy always!!

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  58. Sweet little Angel from God! I pray God gives us all the miracle of a complete healing for Ty! God Bless you and Lou and Gavin!

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  59. Ty's smile of the day really made my day too. We are constantly in prayer for Super TY in this house!:)

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  60. Cindy,
    Since Ty is not watching TV now, have you tried playing his favorite music as a distraction?

    Another idea is audiobooks so he can just listen to a storyteller.

    You may have already thought of these but I wanted to offer some ideas.

    God bless you all. I think of you and pray for you every single day.

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  61. Cindy, the picture you posted a few days ago, of you holding Ty was simply beautiful. The love that radiated from that photo was magnificent. You could see true love, comfort and peace in both of your faces just being in each other's arms. The "smile of the day" picture above just makes my heart soar (as do all of the others)! I want to squeeze that sweet boy! He is heavenly and a love like you said. I am always thinking of that baby and your family. God Bless you all. The Marrone Family

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  62. So touched by your story and by your SuperTy. Never met you but think about you everyday. Sending you thoughts of love, strengh, and calm.

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  63. Dear Cindy,My thoughts and prayers are with you all and I will always pray for A miracle for that sweet boy.We don't live far from you ,but only heard about Ty through an invite
    last Thurs to join Prayer chain, which of course I did and have been praying for TY every day and night .There are really no words to describe what you and your family are going through ,but your posts are both heart wrenching and inspiring.May there be peace in your life and please give that sweet TY a big hug and kiss from me
    love Gail

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  64. I patiently wait for your posts everyday. It melts my heart when I see that smile:) Still sending lots of prayers and hugs your way. Ty has touched so many lives all over the world. I wish we could share with him the impact he has made. I wish for peaceful days for all of you.
    Michelle from NH

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  65. I hope you have a wonderful and peaceful day SuperTy! Your deserve it.

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  66. Morning Ty,
    I'm so glad you had a better night. I hope last night was better too! The first thing I do every morning is check to see how you are doing and it makes me so happy when I hear you've had a good. I'll say some extra prayers for your speaking so that you can tell your parents what will best help you and not be frusterated. Much love!

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  67. Thank you so much for sharing Ty's story. I love getting to know him and his beautiful spirit through your writing. Wishing you all peace and love from NY.
    ~Andrea

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  68. So glad Ty (and you) had a good night. Here's to many more!

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  69. Cindy,
    I started reading your blog when Maya posted it on RockstarRonan and your family has been in my thoughts and prayers ever since. I’m moved to tears each time I read your posts. Ty is an amazing boy who is a fighter. It breaks my heart to read what has and is going through. His smiles of the days are perfect, they make me smile also. You and Lou are amazing parents to this beautiful child, I know people say it all the time, but I can’t imagine going through what you are. I hug my girls a little tighter each night and kiss them a few extra times each day. You are an amazing person, I also send my love, prayers and kind thoughts.
    Christa

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  70. Stay strong and believe in the love you have! It's so strong that all of us can feel it so it has to be powerful enough to get you thru whatever comes!

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  71. I see hope when I look at Tys picture..praying for a miracle

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  72. I love your family and I am praying daily for your beautiful boy Ty. He is so precious.
    God bless each of you
    Michelle

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  73. You know what I notice in today's "Smile of the Day"? I notice roses in his cheeks! I used to tell my kindergarten students that all the time...

    "Ty, I see roses in your cheeks today!"

    xoxo

    Marianne from California

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  74. It warms my heart and soul that Ty had a good day! Your little boy deserves nothing less. His beautiful smile and spirit always uplifts me. It's strange how he is the one suffering and yet he is the one to bring us such joy with just a smile. I hope and pray that his better days are signs that all our prayers are being heard. That God is listening and Ty will soon be free and be able to have the full recovery we are all so badly praying for. He is a gem in every sense of the word and I continue to keep you all in my thoughts and prayers. xoxo

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  75. About to start my "house work" after I spent my morning trapped in my own anxiety riddled mind, Ty popped into my mind, and I mumbled to myself "Gotta get my lil piece of Ty", as I opened the lap top. This little boy is sure to inspire more people, everywhere, around the world more than you could ever imagine. Thank you for sharing your everything.

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  76. I have been following your blog since it was referenced on Rockstar Ronan. I am so sorry to see all that you are dealing with in life and so grateful for all the blessings you have taken the time to recognize. Thank you so much for giving me reason to slow down, enjoy life, end especially, to cherish my children. I really love your idea of gold laces in grade schools and high schools across America. I really hope through one of the foundations this dream can become a reality because I truly believe it would have an impact if everyone realized and just took the time to recognize the prominence and devastation of childhood cancer. I think the color gold belongs in its appropriate place....number one on all of our lists of causes and it would make people start talking and asking questions to see gold laces. Stick with this dream/goal - it is a wonderful one! And blessings to you and your entire family. Thank you again for putting things in perspective with life, love and happiness. Your words are a gift to us all and I will continue to pray for your little champion, Ty. Blessings from Illinois and the strongest prayers we have to offer!!!! XOXO

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  77. Hi Cindy,

    I found your blog after reading Maya's RockStarRonan blog...It is so unfair what you are all having to deal with I would love to be able to just hug you but since I can't I will just say that I think you are a truly remarkably strong Mother and you are always in my thoughts and prayers.

    Ty's smile today is unforgettable what a strong boy. He is making your whole family that much stronger. I think about him almost nonstop now and he has made me cherish my 3 boys so much so that they are increasingly annoyed with me :)but thats ok.

    Lets not forget that handsome Gavin of yours he will undoubtably be just as strong as the rest of your amazing family.

    As always Ty is the first thing I think about and the last thing before I go to bed. I will keep praying for your whole family and hope for the best for you all.

    Much love from Ohio
    Brandy XOXO

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  78. Hi Cindy, thank you for always sharing your stories and being so honest with your feelings. I admire your strength, courage, and will to keep fighting and stay positive. You are a true inspiration to me. You make me want to be a better mother and to remember to focus on what is really important: love and quality time with your kids and family. I think of you and Ty and it makes me focus more on my relationship with my two-year-old daughter, Anasofia. I want to give her as much of me as possible. I want to enjoy all those special moments with her without any distractions or problems clouding my mind. You've helped remember that nothing is more important than enjoying and living those special life moments with my little one.
    Seeing Ty's beautiful little face and big smile today really warms and fills my heart with joy! I will continue to pray that Ty and you guys continue having more days like these - quiet, peaceful, with no pain & discomfort and that one day soon Ty wakes up with the miracle of bieng complete cured! I am sending you all my love, positive thoughts, and prayers from Texas! Love, Lorna

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  79. Cindy,

    I know you posted your address once, but I don't remember which entry. I would love to send Ty some stuff. I understand not wanting to post your home address again, but where can we send stuff? If I could get a smile of the day out of him, it would MAKE MY ENTIRE YEAR!!!

    Love to you guys! Still praying for a miracle!

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  80. All I can say is he's got a great smile... even my two year old lil girl can see it.... he made her smile today .. still praying for a miracle...God Bless

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  81. Hi, I am sure you have probably done all these things, but just in case I wanted to mention some things that have helped other families.

    2nd, and 3rd opinions!!!!

    Specialty hospitals:
    St. Jude's in Memphew
    Sloan Kettering in NYC
    Cancer Treatment Centers of America 888-841-9506

    Minimally Invasive Targeted Surgeries:
    Stereotactic laser neurosurgery
    Gamma knife radiosurgery

    Finally, if none of those are options, to improve quality of life:
    steroids to temporarily reduce the tumor so that his symptoms will improve for a bit

    considering a J-tube rather than a G-tube to reduce vomiting

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    1. Sorry, St. Jude's in Memphis

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  82. I am new to your posting. Have been reading Ronan Thompsons for a long time, and caught yours through his. Thank you so much for sharing your lives with us, so we can pray for you and of course for Ty. What an amazing little boy, and special family God has put him into. My prayers are for God's healing touch, and peace! He is able!

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  83. Praying for many more painless days.

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  84. What a beautiful smile!!! It lights up the world!

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  85. Hi Cindy,

    I just saw something on another site and it reminded me of one of your other posts about holding his little hand. This young man and his mama had thier hands "plastercasted" (not sure if its the right word or not)while they were holding hands and I thought that was so beautiful I had to pass it on. You all could do it. I think little Gavin would probably have a blast and you and Lou would always be holding Ty's little hand.

    Still praying for miracles...with Love from Ohio
    Brandy

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  86. I just felt the need to ask you if you have read the book Heaven is for Real by a boy's father, where the boy had actually went to heaven during surgery and recalls it, how beautiful it is and what it was like? I just saw it on Katie today, and I am going to get the book and read it. It may help you accept this knowing what a great place it is. I don't know if this was appropriate or not, but just thought I would tell you. I pray for Ty and your family daily.

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    1. There is actually a child's picture book version of this book available now too. It is not scary and the illustrations picture Heaven beautifully. It might be very approprite. I think it is by Colin Burpee and his father.

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  87. Sweet Ty,

    How lovely to see you smile again; how amazing to see you able to snuggle with your mommy, and what that did for both of you; what a relief to hear that you had a day of feeling not-so-cruddy... I'm so sorry you've been throwing up - that's just the worst. You're in my thoughts constantly. I hope that all of the days and nights ahead of you are as peaceful, comfortable and restful as yesterday.

    With love from RI

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  88. My heart goes out to you and your family. Thank you for sharing this kind of "love story". What an incredible boy you have and what an incredible person you are. Stay strong and Ty keep fighting the fight.
    thoughts and prayers,
    Maureen

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  89. I am fairly new to your story, and my heart aches for all the things your family has had to face over the years. From what I've read Ty is such an amazing little fella with a beautiful smile. My prayers are with your family as these days continue, I hope you get to see lots of smiles from sweet Ty and I pray for his peace and comfort, along with yours. God Bless you all,

    COLE Prayer Team
    Debby Mooney, St. Louis MO

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  90. What a beautiful smile....Ty you are such an AMAZING little boy. You are stronger than any super hero I know. I'm glad you had a good day today. Stay strong <3

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  91. Dear Cindy and Lou:
    I have had Ty on my mind since I started reading your blog several weeks ago. My family and I pray for him every day... Ty has done more for others during his short life than some of us can even dream of accomplishing. Ty has reminded us to hold our children a little tighter for a little longer each time. Ty has reminded us to listen to our boys' every word with the greatest focus savoring every word they share with us. Ty has reminded us to live in the moment and appreciate every smile. Ty has reminded us the strength that lies within us all. Please tell Ty how grateful we are. Tell him he's our hero. Tell him my boys would love to meet a super hero like him and share toys. Tell him I pray he will be well enough for him an Gavin to play with Aiden and Orion some day. Tell him he super powers some of us can only dream of. Tell him he is so loved by our family...tell him we won't stop praying for him. Please tell him we think he is the greatest super hero ever and super heros are never forgotten...please tell Gavin he is the most awesome brother ever. I am so so sorry your family is going through this...

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  92. A smile so sweet and so precious, truly an amazing, strong, courageous little boy ;) He truly is a superhero. You can see such spirit and love in his face and eyes and smile and that my dear Cindy and Lou and Gavin is because you are truly an amazing loving family. We hold you and your family and Ty in our prayers every moment of every day and we pray for a miracle. So happy today was a good day for him - love and prayers

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  93. Dear Cindy,

    If Ty is no longer interested/able to watch TV, what about a Laurie Berkner CD? Whaddaya Think of That? is our favorite. It has super silly songs and would be sure to bring out that beautiful Ty smile.

    Through all of this gut-wrenching heartbreak I keep thinking how wonderful it is how well you and Lou know Ty. I mean, you KNOW him. That is truly special.

    Always in my prayers. I can't get enough of your precious Ty.

    Amy

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  94. Dear Cindy,
    Thank you for sharing your very difficult story. Your family is an inspiration. I think of Ty all day long, especially when I see my own kids. Your family is in my heart and prayers. I believe that our bodies have the power to heal themselves when the proper conditions are present. I wish this for Ty more than anything. I wish he can be the kid he used to be. I suffered the loss of a beloved child to lukemia. She was only 8 years old. She suffered inmensely during her iillness. Her illness was not properly diagnosed at first, and because of that, the proper care was not given to her. It was the saddest event of my life. She died 35 the years ago, it still feels like it was yesterday. I feel for you tremendously. Stay strong. My best wishes to all of you, especially to Ty.

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  95. Love and prayers for a beautiful boy with a beautiful smile!
    Michell

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  96. Each afternoon I come home from work and my little ones want to play. I think of SuperTy and I put aside my lesson plans and papers to correct and make sure I make time to play or be silly. It's because of your story that I am making sweet memories with my children. My heart hurts for you. You are an amazing family. You have surely earned your wings.

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  97. I know theres no words to make you feel better, but be proud of your little angel, since I knew his story I can,t take you and Ty out of my mind, you're always on my prayers and I'm sure God's plans are wise. I really admire you and your family and I'm sure you've got a place on heaven too.

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  98. Ty--You really are super. Super in all beings of the word. Your story touches our hearts and souls and we pray for you each and every day. Your parents-they are super too. Your words are so heartfelt and touching. I came across your story and blog and have been engrossed ever since. You have reminded me to let my kids jump in puddles and get messy and dirty, why?....because they smile and have fun and live and laugh. I have always been a super neat Mom but I have learned to let go...all because of you. You have made me a better Mom and I am ever so grateful to you for this special gift. Keep smiling Ty, because your smile is absolutely beautiful...you light up so many hearts. May God always look over you and protect you xoxo

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  99. Sheila in MichiganOctober 11, 2012 at 2:30 PM

    I'm so sorry your family is going through this torture. I know the pain I felt at a stillbirth, so a baby boy with cancer must be magnified infinitely. I'm just so sorry.

    The story of Daddy teaching his son how to shake hands like a man ripped my heart out.

    Prayers, love & hugs your way.

    Sheila in Michigan

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  100. Ty, My continued & constant thoughts & prayers are with you & your family.

    I have been deeply touched by Ty's courage & heartbreaking journey. Ty has captured my heart & soul. Ty's smile is wonderful.

    My prayers are constant & God Bless.

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  101. I just started to read your blogs. My heart aches for your beautiful baby. No mother should ever have to go through this. You are in my prayers.

    Ty's beautiful soul and smile are heart-melting!

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  102. I wish I could just hug you right now. I am so sorry for your loss but do you know how lucky Ty is to have you as his mommy and daddy? I am sad he had to go to heaven before you, that is not fair. But he was loved and he knew it. May God bless you all.

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