Saturday, August 11, 2012

This is our story

August 11, 2012.  How can it be two years later?  Two whole years!  And how much has happened in those two years, my God.  I have been keeping track of Ty's journey in a document saved on my computer.  It includes a timeline of events and almost an abridged version of this blog.  The one thing I don't think I've ever included here, though (in such detail, anyway) is what I wrote about the day Ty was diagnosed.  It was exactly two years ago from today and I just want to reflect.  I realize it may be too long to read through - but at the very least please scroll down and view the compilation video I created via YouTube.  You can't watch it from a mobile device (I think because of the rights on the song) so please, please, please watch from your laptop or desktop when you can. And feel free to share!  I love it and I hope you do too.  It is my love song to the greatest love of my life.  My Ty. 

Ty was a rambunctious toddler with curly blonde hair and an infectious smile.  He didn’t have any developmental delays, medical issues or neurological deficits prior to his diagnosis.  However, Ty was never a good sleeper since the day he was born.  He woke up frequently throughout the night crying and whining, but we could always soothe him back to sleep.  We discussed this with his pediatrician on several occasions and we even had him scheduled for a sleep study for some time in late August 2010.  After a week straight of increasingly sleepless nights earlier that month, we decided to instead take him to the emergency room for imaging.   He was crying and whining all through the night but he couldn’t tell us why and we just couldn’t stand it anymore.

Ty didn’t have any neurological symptoms.  The doctor’s at Cohen’s Children’s Hospital (Long Island, NY) didn’t seem very concerned, but they reassured us that it was a good idea to get an MRI just in case.  Since his case wasn’t urgent, we had to stay inpatient for a second night because we were waiting for MRI/anesthesia availability.  Ty slept beautifully at the hospital.  Not even a whimper all night.   We laughed the next morning and couldn’t wait to get the MRI over with so we could go home looking like silly, worried parents.  At least we would be at peace knowing that he was fine. 

We packed up our things and couldn’t wait to go home.  Lou was standing in the hallway when he saw the neurology team heading down toward our room.  “Is it good?  Can we go?” he asked with a smile.  “No?”  With that he turned to look at me in slow motion and the walls began the melt.  The sounds in the room became muffled.  The world around us was falling to pieces. 


The devil was unveiled on a computer screen, right there in front of us.  The MRI image showed Ty’s profile with a tumor, about one inch in diameter, growing from his clivis and pushing against his brainstem.   No wonder he couldn’t sleep.  Lying down increased the pressure on his brainstem and was causing intermittent head pain. 

The following week was a blur.  We traveled to speak with several of the nation’s best pediatric neuro-surgeons.  We talked about the different approaches which ranged from cutting through his upper jaw (also known as a La Forte) to trying an endoscopic approach through his nose and mouth.  We spoke to strangers who had children going through similar surgeries.  We answered every phone call and followed through on countless recommendations (…”you must talk to this doctor… you must look into this facility… you must feed him apricot seeds…etc.”). 

During this short week at home, Ty began to fall apart before our eyes.  It was as if the tumor knew that the gig was up and decided to come out of hiding.  Ty’s speech began to slur.  He lost the ability to drink from a straw, then from a sippy cup.  His head pain was becoming unbearable and he started suffering during the daytime, too.  We went home with a smiling toddler and were told we had plenty of time to decide about surgery.  Instead we had to rush him into surgery with Dr. Steve Schneider at Cohen’s Children’s Hospital just days later.  Dr. Schneider is very well-known for endoscopic brain surgery in children and we were confident that this would be the best approach for Ty. 

And so our journey began. We hope you will continue to follow his roller coaster journey here on
www.superty.org and like him on Facebook at www.facebook.com/thelittlefighter.  Without the support of friends and strangers, we believe he would not have come this far.  A fighter he is, indeed. 

FOR YOU I BLEED MYSELF DRY
Ty, my love, that statement couldn't be more true.  Anything for you.  You are my everything.  Here is my love song to you on your two year anniversary.  XOXO. I love you big, huge, giant much.

CLICK HERE TO LAUNCH VIDEO

Or, you may be able to play it straight from here.  I prefer you try the YouTube link because it keeps track of how many times a video is viewed, but I know it can be troublesome (and vice versa as it pertains to playing videos straight from Blogger). 

video



19 comments:

  1. Cindy and Lou, you must know how many of us who have followed your plight for the past two years have grown to love Ty and your family. How thankful we are that you have shared all of this with us because you have taught us what is really important in life. Because we love Ty so, we are so grateful to Our Lord that he has blessed Ty with the best parents ever. You took the best care of him and always made the right decisions for him no matter how difficult it was. Sadly, Ty has had to endure more than most of us will ever have to but some day when he grows up, he will know how hard you fought for his life, and he will know what wonderful parents he has and how much love has been sent to him by all of his family and all of his friends. God Bless you all. We will keep praying, and you keep on fighting and Ty will keep on winning. Nina

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  2. What an absolutely beautiful video. It shows just HOW much you adore that perfect little one. Keep fighting, SuperTy!

    Steffi Morton

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  3. What a gorgeous video. Just watching it, you can feel the love. I have followed your story since the beginning and feel as though you are all part of my family. Your positive attitude and determination are remarkable. God bless that beautiful little boy and your entire family. Let's all pray together that soon these last two years will be a distant memory and we will be talking about proms, school etc.
    XOXO

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  4. Just amazing! By far thee best video I've ever seen. My eyes filled with tears while watching. Know that our thoughts & prayers are with you always.

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  5. What a beautiful, touching, inspiring and loving tribute to Ty. I know he feels your fierce love for him and I believe it gives him the fire to keep fighting, and fight he does! Your ability to articulate this incredible journey you all have been on is nothing short of awe inspiring. I know I speak for thousands when I say there is not a day that goes by that our thoughts and prayers aren't with you all. Thank you for your willingness to share your heart and your Super Ty with us! Know you have a legion of love and support behind you, from all over the world! My very best to you, Cathy from Colorado

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  6. Cindy~ I have been following your blog since your story on aol over a year ago. I check in every day. Have my app on my home screen. Ty is amazing one of the strongest people I know. For being so young.. When I feel like I've given my all I think of Ty and know I can continue on. If he can I can. I was sick 4 years ago and did not have his strength or will. I look back now and it is soo sad how I was when he has ensured so much more. I feel like I know your family and talk about you all every day. You are an inspiration to me and I pray for Ty and your family daily. Keep up the fight. We know you will succeed.
    And thank you for sharing your story.
    With love and lots of hugs. April

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  7. Beautiful video! Praying everyday Ty gets stronger and stronger!

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  8. Wonderful Video! Congratulations Ty, you little fighter got it! :)

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  9. In addition to being the best mom in the world, an unbelievably talented writer, you now can add creative and deeply poignant movie/video producer to the list. How remarkable you are Cindy. Lou, you are one luck man. Ty you are one blessed boy. As is that gorgeous, spunky and spirited critter Gavin
    XOXO to all.........

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  10. What a beautiful video! Ty is an amazing little boy and so lucky he has the best patents. Cindy you are the most amazing, courageous, strong, beautiful mom I've ever seen! Been following Ty's story since the beginning and I truly believe Because of your love for your child Ty is going to one day grow up being an amazing man! You and Your family are inspiring and show is what true love is! Never stop fighting Ty, you have touched the hearts of everyone, you are truly loved! God bless The Campbell Family!❤❤

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  11. What an amazing beautiful video for Ty. For a child who has had to endure so much, he sure finds a way to smile and enjoy life. Of course, having you and Lou as parents helping him thru this journey fighting this awful disease is reason enough to smile. He's so lucky to have you as well! Keep fighting little man!

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  12. So beautiful, it brought tears to my eyes. Ty is my hero, an example of what kind of person I want to be. His beautiful smile lights me up inside. He reminds me to be grateful for everything in my life. I see how bright he is no matter what comes his way and I look up to him. He is a very special little boy and is lucky to have you,Lou and Gavin to help him through. God Bless all of you!!!

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  13. Words cant express how precious lil Ty is and this video is absolutely amazing....I fell in love with lil Ty all over again!!! Your family is always in my prayers every single day. Will always pray to God for lil Tys miracle <3 <3 <3

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  14. I have been following you and your beautiful family's story for quite awhile and I pray for you son everyday. I just came across this sad story and thought of you and how you can relate...God Bless ALL of you.

    Lynne
    Mansfield, MA


    http://mom.me/parenting/3425-father-sings-to-raise-money-for-sons-cancer-treatment/?icid=maing-grid7|main5|dl27|sec1_lnk3%26pLid%3D191879

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  15. Thanks for the video. I knew it would be a tear-jerker.

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  16. I couldn't keep my eyes dry through out your beautiful love filled video! God Bless you Cindy, you are an amazing person who is a loving caring mom. I pray Ty will continue to improve and your family can take real fishing trips and to theme parks and the two boys can run to the rides and really have this thing beat forever! It will happen I just know it. Our God is an Awesome God! Keep your faith strong and be courageous!

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  17. What a beautiful video. Praying for TY and the whole family.

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  18. will always pray for ur little one and those who fight and who have lost there fight to any disease..may your child find health and peace...God Bless You and Your family

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