Tuesday, February 8, 2011

Ty Beats Cancer - Part 2

Essentially, Ty has come full circle and we pretty much landed back where we started from… we're back at square one, heading toward a major surgery with the hopes of removing enough tumor so Ty will be cleared for proton beam radiation treatment at Mass General.  The difference is that we have so much more knowledge and experience being a "cancer family" this time around, and that will help us through the tough road ahead. 

When I think back to the time we spent in the hospital prior to his first major surgery (debulking and resecting his tumor in August), I remember having this idea that we would follow some sort of schedule.  I couldn't have been more wrong or more inexperienced in dealing with a chronically ill child.  Anyone who has had the unfortunate experience of suffering through a cancer diagnosis with a loved one knows that there is something called a "roadmap" that doctors present to the patient in an effort to lay out the treatment plan.  A roadmap indicates what type of chemotherapy will be received, when, for how long, radiation details, timing, etcetera.  I thought this meant we had a plan, and that things would go according to plan.

Prior to Ty's diagnosis, we were a super busy working family.  I was an organized person who liked having control over everything.  I thought I could keep working on a limited basis with sporadic time off for doctors visits and sick weeks during chemo (and I did try to hang in there for quite a while).  I thought we would know what to expect from treatment… so he has surgery, then he starts his first round of chemo in September, round 2 in October, round 3 in November, then we would be off to Boston for radiation December - January, followed by a couple of low dose rounds of chemo before we could wrap it up and put all of this behind us.  Anyone who has been following his story knows that not a single thing on Ty's "roadmap" went as planned.  With every step forward, we faced two steps backward.    Despite this, he has also beaten so many odds.  He has completely surprised and baffled his doctors on many levels.  For this reason, we are going to keep fighting.

As a result of countless setbacks, Ty has not been treated with chemo since early November.  Because of these delays in treatment, Ty's original tumor site has recently experienced a lot of activity, meaning there has been growth in addition to dying tissue in a place where there is simply no room for the resulting changes in the size and shape of the tumor.  Chemo has caused spontaneous hemorrhaging and when the tumor site bleeds it causes significant pressure on Ty's brainstem.  This has led his doctors to decide that continuing with chemotherapy is no longer an option.  It's just too dangerous.  So, we are going to try to remove the rest of the tumor surgically so we can still get him to radiation.  It is our only chance for a cure… and we are told it is risky and it is a long shot.  We are scared beyond words, but if we do nothing at all the loss is just as great, so how could we not go ahead with this incredible leap of faith? 

I hope that provides some background as to how far we have come, and why we are now faced with a plan that requires us to essentially start over.  Please keep the prayers coming. Ty is such a trooper, and I have a feeling that he will continue to amaze us all. 

Throughout the course of Ty's painful journey, our amazing friends and family have been so supportive.  To every single person that reads this blog, checks up on Ty via facebook, reaches out via email, or posts comments - whether we have met you in person or not - we are tremendously grateful.  I say this all the time and I mean it… we want as many people as possible to be touched by Ty's story.  Thank you for caring, for walking alongside us down this difficult path, and thank you for sending your positive thoughts, your prayers, your energy and your love.  XOXO to all. 

18 comments:

  1. My heart is breaking for you all. You are in my constant thoughts and prayers. Your persistence, patience, and selflessness is remarkable. Ty is lucky to have you.

    Much Love,
    Julia

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  2. I do not know you and your family personally but your story of courage, strength and hope has truly touched my heart. I have posted before that I clean my church every Thursday and write Ty's name in the prayer book. I will go today, since his surgery is tomorrow, so he's in the book. I am sending prayers and white light/healing energy Ty's way today, tomorrow and as long as it takes. Keep fighting the fight!
    Kim C.

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  3. My Prays are with you and TY keep up the fight your awesome little guy.. Xoxoxo Rachel

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  4. I pray for you guys all of the time. Ty is such a little fighter. I truly believe in miracles and will continue to pray for one for him! Keep fighting, Ty! You're doing such a great job!

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  5. If your tiniest goal is to have Ty's story touch as many people as possible, please know that you have succeeded! We are friends of friends (who love you dearly) and we check in daily to see how Ty is doing. I am extremely moved by all of you.. we have a son Ty's age and I am consistently impressed with your strength and your will, and you have made me appreciate each day that I have with my family. Ty is my hero and he clearly gets his strength from his loving family. So much love and good luck! Janah Angelou (friends of the Schimmels)

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  6. Your blog touches my heart . . .as a Mother and Grandmother, I can only imagine your feelings and tears flow for you even as I type. You have been and will continue to be in my prayers. Prayers for your doctors and anyone involved in Ty's care are also being said. Prayers for continued strength for you as this precious angels Mom will hopefully see you through this walk you must make . . .You are not alone . . .many many many are holding you close in thought and prayer.

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  7. To say that we have been touched by Ty's story is understatement of epic proportions - we have been knocked over, flawed, compelled, and moved by it - you and your family continue to amaze me on a daily basis!!! Cindy, I am thinking of you always and sending you all of my love, faith, and positivity!!!! Keep following that mother's instinct!! XOXOXOXO

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  8. Thank you so much for always updating us! I imagine it is hard at times, to pour your heart out. But it means so much to so many people to know how Ty is doing. We all love him so much, even if we haven't met him. I pray every night for a miracle and I'm always amazed at how strong Ty is!!! I truly hope for a miracle, and will never stop hoping as long as Ty is fighting!!! We love you all so much!!!

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  9. I cannot tell you how reading your blog touches my heart and all whom I've shared Ty's story with. Your writing about this to all of us has I am sure relieved some tension you may have and in return getting back the support, love and prayers you need.
    We keep thinking and praying for Ty and we know he is a strong boy and a true fighter! We have faith that this surgery is going to be a positive outcome!
    God Bless and we Love you all!
    Grace and Rossano

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  10. Good luck with surgery, please know that I and Dr. Atlas read your blog and wish you all the best. We hope that Ty can catch a break hopefully soon.
    Lauren (Cohen's social worker)

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  11. My heart truly hurts for you and your family.St.Mary's church in Middletown,NJ is praying for your beautiful boy and continued strength throughout surgery.Every night my kids pray for Ty and I know that God listens to the prayers of children.You are in our thoughts ALWAYS and FOREVER.xoxKelly

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  12. Continued prayers coming from the Highlands. Please let us know how the surgery goes... Ty is such a trooper such a beautiful child and he has such great strength . You and Lou are amazing parents.... God Bless you all tomorrow!!!! xoxo To Ty !!!!!

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  13. WE ARE ALL READY HERE IN FLORIDA!! TOMORROW I WILL HAVE THE 2 CANDLES LITE ALL DAY FOR TY.. THERE IS ONE OF JESUS AND 1 OF THE BLESSED MOTHER.. GOD BE WITH YOU AND LOU AND GAVIN..... BE STRONG AND REMEMBER JUST KEEPING PRAYING AND GOD WILL BE THERE WITH TY THE WHOLE TIME. WE REALLY LOVE YOU AND YOUR FAMILY MORE THEN WORDS CAN SAY.. MAY GOD BLESS TY TOMORROW AND KEEP HIM STRONG AND HELP HIM MAKE IT THROUGH ALL OF THIS. SO YOU CAN PUT THIS NIGHTMARE BEHIND THEM. AMEN.. KATHY BRUNELLE

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  14. Cindy:

    We hope tonight you all get a good night's rest.
    Tomorrow, we will ask for all the Celestial Court, Guardian Angels, Patrons and saints, along with Jesus, Virgin Mary & the Holy Trinity to accompany and guide the doctors to a successful surgery.

    We love you and keep you close to our hearts ♥♥TY~CINDY~LOU~GAVIN♥♥

    Remember:
    When you feel like giving up, hope is the tiny voice inside you saying, "Go on, give it a go - one more time". Jane Garton

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  15. Those of us who are following your blog continue to become more and more entwined -- a part of Ty's virtual extended family.

    I think I can speak for everyone who's with you on this ride when I say that, "You're definitely doing the right thing." You're loving your son desperately, as do we....and we love you the same way. Your decisions regarding Ty's care are considerate and selfless, showing the depth of your love and as heavy as your choices may seem, you cannot make a wrong decision when your decision comes from that loving place. You don't want to see him suffer. Everyone gets that. But you don't want to see him miss an opportunity to triumph either. It's tough. It's not fair. But it's your journey. It's our journey...and we're with you all the way.

    Peace be with you.

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  16. I wholeheartedly agree with all of the posts above. Your beautiful boy Ty has touched many, many lives. He inspires us all to be better -- and braver -- people. I've never met Ty, or you Cindy, (I am friends with Erica S.) -- but, I am sending you and Ty the BIGGEST virtual hug ever! I am praying and hoping so hard that Ty's surgery goes great tomorrow. Thank you for sharing your son with all of us... we are all holding him close in our hearts!

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  17. Cindy Ty was meant for you, and you were meant for Ty. From one mother to another.

    With Love Nancy

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  18. Hi Cindy,
    I know how your world can revolve around those test results. My Mom was diagnosed with advanced breast cancer and she had a Dr tell her to make her final arrangements...well long story short she went with a pretty aggressive treatment plan and lived 27 years cancer free after that. She outlived the Dr who told her to make her final arrangements by 20 years! And medical advancements have come a looong way since then! I hope that once your world calms down and Ty is all better then you will publish this for others. You have an amazing way with words, truely a gift, and others find inspiration and strength in them. It must touch everyone in a different way depending on their life. I am learning to be grateful for the little things. I believe I am becoming a better parent because of you. Things I used to take for granted, I dont anymore. There are so many people praying for Ty and your family because of your words, that is a Powerful thing!! Your doing a great job Momma!

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