Friday, July 29, 2011

Last treatment today!

We are heading into the city for Ty’s last radiation treatment. Hopefully this will be the last he ever needs. Overall, Ty has been sleeping much better at night, but he still wakes up with anxiety about going to the hospital. In the middle of the night he often gets up and says, "I’m weddy to go!" It’s sweet and exhausting. He hasn’t been fighting me about going in this week because I think he just wants to get it over with.

Lou and I have been so emotional over the past week or so. We trade tears at night because we are just so scared for what’s next. As much as we want to enjoy every minute where Ty is feeling good, it’s been harder than I expected because seeing him like this only makes us hope and pray and ache for his continued improvement even more. I am so worried because his speech is starting to decline, but I have to remind myself that he has trauma from all of this radiation that it’s probably wreaking havoc inside.

The reality is that we were given a terminal prognosis recently and that fact is always, always in the back of our minds. But, so is the fact that there are always exceptions – ALWAYS – Ty has beaten the odds already and he will continue to do so. Besides, all things considered, Ty is one amazing kid. I have so much faith in him, and in God. And so does everyone that meets him.  I can see him as a handsome young man who comes over for dinner at his parent’s house on the weekends. Please, please, please let this be true.

A few weeks ago, I allowed myself to plan for our vacation at the lake. Now we will be leaving for that trip this weekend and Ty is so excited about it! I am so happy for him, and I can’t wait to enjoy an entire week of peace and quiet with family. Yesterday, I looked ahead even further and imagined taking the boys for a day trip to see the Fall foliage at Mohonk Mountain House in a few months. Two scenarios came to mind. One where Ty is on his feet, walking in the trails with some assistance and bending down to pick up leaves and sticks. Another where he is viewing the scenery from his stroller, sick, covered in blankets. I hate how that happens. I wish I had a filter in my brain that would only allow the positive thoughts and visions.

I was crying for over a half hour on my way home from the hospital the other day while Ty was sleeping. It was totally okay, I needed a good cry and it helped me to feel better. Then, yesterday I got pulled over on my way home.  I don’t usually drive very fast but I was caught up in my thoughts, it was a beautiful day and a wide open road so I guess I didn’t realize I was speeding.  I am so grateful to the trooper for being so sympathetic to our situation and letting me go with only his kind words ("Please accept my sympathy for your situation, and try to drive safely during all of these back and forth trips. My best wishes for your son to get better").  Again, I cried after I pulled away because I just needed an immediate release for the stress that incident caused, and when I did that Ty started crying too! He cried even louder than me, and it was so sincere. It was the sweetest thing you can imagine. I immediately stopped and I told him that I was only crying because I was so excited that we were on our way home and that everything was okay. He nodded through his tears and told me that he was crying because he was excited, too. Awww, we are just so connected, me and my Ty.

On our way home today, we are taking Ty to meet the football team and coaches at Fordham University! There is a wonderful organization called Friends of Jaclyn that connects children like Ty with sports teams to provide a support network that makes the kids feel so special. Fordham football is adopting Ty and Gavin. They will get jerseys, a football, and anytime access to the games. I think this is something that is going to get Ty excited, and something that Lou and I are already excited about. I look forward to future posts about Ty’s experiences with the team :)

Thank you for following Ty and for all of your love and prayers. Today is a happy day.

7 comments:

  1. Still praying harder than ever! Keep up the fight!!!

    Kyle in Milwaukee

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  2. I agree there are exceptions, miracles. I knew one. My sister's best friend Kerri,like another sister to me, was told that she would never live to see 18 but she proved them all wrong. She was such a shining light like Ty, just the sweetest person you would want to meet even though she went through so much in her life! She was taken from us way too young (35 year old)but she lived longer than the doctors thought she would. John Hopkins was such a blessing, between them and Kerri's love of life we were blessed with her for many more years. I have another friend who just survived bladder cancer. The doctor's had written him off but he pulled through. I believe in hope and prayer, they do make a difference. Know that our prayers are always with Ty and your family. Keep the faith!!! Love you guys! Rose Pannebaker

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  3. It is only normal for you to have the scary and negative thoughts, the what ifs, along w/ your positive thoughts. That is what makes us human!

    I just loved the story of the cry you and Ty shared in the car. That was oh so sweet!! :)

    I hope y'all have a wonderful, relaxing, exciting time at the lake and only let positive thoughts thru during this time!

    Love,
    Jan
    Georgia

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  4. Dear remarkable, wonderful, awe inspiring Cindy.
    Your post was so poignant, I wish I could just put my arms around you , Ty, Lou, Gavin to let you know that all of us who you made privileged to be connected to your story are here for you , even remotely through cyberspace . The weight of your burden is so immense, but if it can help at all, just know that SO many people are praying and believing, and let that lift some of the weight off your shoulders if possible or at least spread it out .Many people, far and wide love your family and love this special, special child and think about him daily..sending good positive thoughts and midnight prayers to G-d to protect our precious SUPER TY. You are doing so much to keep the fight going, I am glad that you also acknowledge your need to just let it all out at times. You have amazing resiliency and you have proven that so many times so don't doubt yourself... Enjoy every moment of the next vacation, and remember the negative thoughts,,, are JUST THOUGHTS,,,, they are not the currrent reality- which is that TY is doing well!!!!!!!!!
    With love and kisses
    Susan

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  5. Praying harder than ever that things will continue to get better from here!

    I think of Ty often & check here as much as I can to check his progress. I have never met you or your family but I feel so bonded through his journey & stories. I share his progress with my husband & family & will continue to pray for the best for ALL of you!

    xo

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  7. It is a couple of hours drive, but if you need a rainy day trip while in the region, try The Wild Center in Tupper Lake, NY. Boys that age love the place, and I would be happy to send some tickets your way and give you the grand tour. tthomas@wildcenter.org (Tracy)

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