Tuesday, February 8, 2011

When is enough, enough?

Yesterday was the worst day of our lives.  Considering all we've been through, I never cried so much or felt more pain than I did over the last 24 hours.  When we arrived at the hospital on Sunday, Ty was still relatively okay.  He was able to speak (not very well, but we could understand him) and he even ate a chicken nugget and a couple of French fries on our way in.  We knew there was likely an additional hemorrhage pressing on his brainstem that was causing his increasingly slurred speech and overall weakness, but we thought with another steroid boost and close observation at the hospital that he would be feeling better in no time. 

By the time Ty woke up on Monday morning, he was completely incapacitated with uncontrollable shaking and severe lethargy.  He was unable to respond to commands, he had severe pain and he was wetting the bed.  He spent the majority of the last 24 hours completely unconscious and unresponsive.  He was even able to go in for an MRI without anesthesia.  As a result, our doctors at Sloan Kettering told us that treatment is no longer an option and that we reached the end of the road.  We discussed, in detail, taking him home and what we can expect over the course of the next few days/weeks.  Obviously, no words can describe what we felt. 

Then, the neurosurgery team at Cornell/New York Presbyterian presented us with a surgical option, and  Lou and I were faced with a decision that no parent should ever have to face.  On one hand, there is hope… there is a chance.  On the other hand, it is a long shot and we don't want to force any additional pain and suffering on our baby boy.  When is enough, enough? 

So, the decision was whether we take him home for what is expected to be a relatively pain free and peaceful passing, or do we keep fighting knowing that any number of things could go wrong at any point (something we are all too familiar with).  It was simply too much to take in yesterday so we told everyone that we needed to sleep on it, to talk it over amongst ourselves and to come to a decision in the morning.  We are currently in the Pediatric ICU at New York Presbyterian hospital.

Less than an hour ago, I was sleeping next to Ty and he started to moan and stir.  I asked him if he was awake, and he clearly said "yeah".  He started crying and I asked him if he had pain and he clearly answered "yes," once more.  I hit the ceiling in excitement/panic, called his nurse for some pain meds, and began asking him questions.  He was responsive!  He was talking to me!  He cracked a smile!

After a while, Lou and I began to explain to Ty that we had a big decision to make.  We needed to know if he still wanted to beat the cancer up.  We told him that we love him and we know how hard he's been fighting.  We know he's been in a lot of pain, and that if we keep fighting it would mean more pain and more time in the hospital.  Then we asked him if we should keep fighting and Ty said "yes."  We asked him if he wants to beat the cancer up and he said "yes."

So, we are going to keep fighting the fight… at least for now.  Ty is going to have another tumor resection on Thursday with the goal of going straight to Boston for proton beam radiation treatment afterward.  Obviously, we don't know how this will turn out, but we know we have an excellent team of confident surgeons, and we know that God will continue to guide us as he has done every step of the way so far.  Of course, we are terrified beyond words. 

I just overheard Lou talking with Ty and asking him if he remembers anything about yesterday.  He asked if he remembered seeing all of his grandparents in the room or holding still when he got his "picture taken."  Ty said "no," and that is good.  I am relieved to know that days like this will not haunt him as they do me.  He deserves to be happy and think three-year old thoughts, like what's on the next page of his favorite book that Daddy is reading him. 

25 comments:

  1. I cannot even begin to imagine being on the emotional roller coaster you guys have been on since Ty was first diagnosed.

    You are all always in our prayers and thoughts.

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  2. Your words touch my heart and make me ache for you and your family. Your son is an absolute inspiration of all that is good, wonderful and amazing in this world - keep fighting Ty and we'll keep praying for your strength, courage and joy!

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  3. Stay strong my friend, and know that everyone is sending prayers and love your way.

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  4. My heart is bleeding for you, Cindy and Lou, but I'm hoping with what I believe is real, reasonable, and valid hope that this next surgery and proton therapy will help Ty.

    I assume you are going to the Burr Proton Center at MGH? MGH/Dana-Farber is where I was treated, and I am still in close touch with many at DF through my marathon team running for them.

    If there is **anything** that I can do to help you, to facilitate, whatever, please don''t hesitate to reach out to me. I am here.

    Dana-Farber/MGH/Children's are world class. They are out-of-this-world class. And I am thinking of you.

    XO, Helen

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  5. there are no words... Just know that we all love and pray for you all every day. Ty is a fighter and You and Louie are so strong. Thank God he has you two as loving parents. We wish you only the best positive thoughts and prayers. Much love, Emilio and Tammy

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  6. I am a stranger to you, but please know how hard my family is praying for yours, and your beautiful boy.

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  7. We don't know each other, but I have been following your blog and story for the past several weeks. I am deeply touched by all that you are going through, and think about you every single day. I am praying for your entire family and a positive outcome for Ty. I can tell that he is a beautiful boy inside and out, and am absolutely amazed and inspired by his courage.

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  8. Don't ever question your decisions! You are doing everything you know how to help your baby! He said, "yes", then you try to do a little more if you can. You are both so brave and so strong. I hope you can feel all the love being sent your way from so many people. We are all praying for you and your family! Much love- your friend, Erin Barrett-Holtkamp

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  9. I saw your blog link on your post to Susan B. Anderson. I am praying for your beautiful little boy!!

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  10. May God bless you all with healing, peace and comfort. There is power in prayer - I cannot imagine what you are going through. Hang in there and believe that he will be ok. I will pray for your precious baby boy.

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  11. I love you Cindy, Lou and Ty. I'll be on the next plane to Boston if you say the word. We are all here with you, next to you, walking with you, crying with you, and hoping with you.

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  12. You don't know me, but I have been following Ty's story and reading his blog daily. I just want you to know I have been and will continue to pray for your beautiful little boy. He sounds like a truly incredible child.

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  13. Cindy & Lou, Ty is so blessed to have you as his parents. You are both incredibly strong and Ty feels your strength and courage. He is your SUPERHERO.. Thoughts and prayers are coming your way. POWER in PRAYER!

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  14. Cindy and Lou,
    We are praying for Ty and your family. Please call me if you need anytning....we are here for you!!! Our love and prayers always,
    Ginger

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  15. I can't even begin to imagine the pain in your hearts watching your little boy go through so much. He is such an amazing little fighter because he gets his strength from both of you. You are all always in my thoughts and prayers and I know Ty will continue fighting and proving miracles DO happen. All our love to all of you ♥

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  16. Keep fighting TY. You are the strongest person I know and you may only be three, but I look up to and admire you. I pray for you everyday and I hope the good vibes are coming your way.....Keep up the fight.
    Always, Jodi

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  17. May you guys be able to continue to find the strength and courage to fight this battle. We pray everyday for Ty to be cured and feel well. Ty is an amazing special boy and he has touched the lives of so many. Keep fighting Ty ...you can do it!
    love and prayers always,
    Raena

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  18. Cindy and Lou:

    It has been soooo hard for all of you, but the fact that there is an open road to continue the fight with Ty and all of us together, is a sure sign that something IS happening.

    Now, more than ever we will continue our prayers and positive thoughts. If Ty and both of you want to fight, let the next round begin! We will beat cancer up!

    Placing Ty in God's hand, through the work of the doctors, we will see miracles. Keep the faith, Cindy.

    Remember:
    Try to see beyond your worries and anxiety. They can obstruct the brightest thoughts.

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  19. My heart aches for all of you........ BUT MY PRAYERS CONTINUE EVERYDAY!!! KEEP FIGHTING TY!! LOVE, KATHY

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  20. Keep the fight up. The prayers are constant!!
    God Bless you all!

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  21. I've been following for several weeks and praying for Ty. Bless you all. Will keep praying for healing and strength this week. Precious boy!

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  22. We too have been through a cancer battle when our 3 month old baby girl was diagnosed with Neuroblastoma. In no way have we been through what you all are currently going through, but please know, you are amazing and Ty is amazing. God has great plans for him and will be by your families side through all of this. You are in our thoughts and prayers! God Bless!! http://madelynbell.blogspot.com/

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  23. Ty is a beautiful boy- Keep fighting this fight. My eleven year old stepdaughter beat the crap out of cancer two years ago and we will continue to pray for all of you. When you can, try to take a moment to breathe. After her year of treatment, we realized that we held our breath the entire time. Stay strong...

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  24. I've been following Ty's story for a few months now -- I am praying and praying for your beautiful little boy. I am so sorry that Ty, you and your whole family have to go through all of this. You are all in my thoughts and prayers each night.

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  25. I was given your blog address from a friend of yours today. I know, at this very moment, you are going through one of the longest 'waits' in your life. I pray for your comfort, the medical staff and Ty's resiliency. He's a definite fighter with loving parents who fight for and along side him. Beat up the cancer!

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