Monday, June 20, 2011

Next steps for Ty and a tribute to Lou on Father's Day

Update on Ty - our little fighter
We decided to opt for another major surgery.  Some of the doctors here think we are crazy, but our neurosurgeon is the most vested in Ty and he said he wants to do it.  If it was his child, he would do it.  What more can we ask for than that. 

The others don't think we're crazy because of the surgery risks - this time it actually won't be as dangerous and heroic as last time.  It's just that when a cancer like Ty's metastasizes, there isn't an oncologist in this hospital who will tell us it can be cured.  Point being, if we subject Ty to this surgery, we can only expect for another tumor to appear either at this tumor site or a new one.  Lou and I understand that yes, the chances for a cure are slim to none.  Like getting hit by lighting.  But you know what?  People do get hit by lightening. It happens.  And if there is a way that we can stay in this fight without hurting Ty much more than he is already suffering, then we are all for it. 

I learned today that when a tumor metastasizes, the cancer "seeds" itself throughout the body and additional tumors begin popping up all over.  However, these tumors - referred to as "mets" - aren't the same as the original because they are more isolated.  So, Ty's original tumor came from his clivis (skull bone) and infiltrated his brain stem.  It became part of the bone and part of the brain stem, making removal very risky.  The mets are more like large golf balls that are not actually part of his Cerebellum, but they are growing and pushing all of his brain tissue into his brain stem and other critical areas of the brain that are causing him to suffer so many neurological deficits.  Because of the nature of these tumors, Ty's neurosurgeon believes he can remove both Cerebellum tumors intact, without much disruption to his brain tissue.  Of course, it means another huge, Frankenstein incision at the back of his skull and he will be intubated for a day or two after surgery.  And, as with any surgery there are risks.  This time, the risks include interruption to a major vein, but Ty's surgeon is very skilled in working around this crucial piece of the anatomy.  The other risk, although the chances are minor, is something called mutation to the posterior fossa.  This means that Ty could possibly lose his ability to speak and his body would be completely limp for an undetermined period of time.  It usually improves gradually, but it could take a long time and Ty's time is way too precious so that is one of the side effects making us very nervous.  Luckily, the surgeon and the oncologist feel that the likelihood of this happening is quite low. 

For Lou - The best father and husband EVER
Lou, what would we do without you.  You are the most loving father and husband, we are so lucky to have you.  I only hope that Ty and Gavin grow up to be just like you.

We have been facing something that no Dad should ever have to face, yet you never waver.  When you ask Ty for a kiss, no matter how bad he is feeling, he reaches out his arms to grab your face and pull you in.  I will always cherish that and it brings tears to my eyes almost every time I see it. 

I love that you are always trying to keep us smiling and that you have put a lot of pressure on yourself to do so much for Ty - I don't know how you do it.  You have participated in triathalons for Ty, you created his foundation, you often leave the hospital at 5 in the morning to go to work 2 hours away, only to return late that night.  You cherish every moment with your children.  Everyone who knows you, loves you.  You have a wonderful, loving family and great friends which says so much for your character.  You are the best father in the world and I love you infinity.  We all do.  XOXOXOXOXOXOXOXOXO, Happy Father's Day.

I also want to wish Papa and Pop-Pop a Happy Father's Day.  We wouldn't be able to do this if you didn't teach us how.  Thank you for being the best Dads in the whole world, and for being the greatest grandparents to Ty and Gavin.  We love you both so very much and we are so grateful for the lifetime of love you've given us. 

Lastly, to all the Dad's who read this blog... thank you and Happy Father's Day.  

MY VIDEO TRIBUTE TO LOU

21 comments:

  1. You couldnt be more right that papa and pop-pop taught you well! What amazing dads you alll are. There is no Greater display of love and family than yours. Every moment of tys life continues to be a gift to all of us that are lucky enough to know him in any way. He will keep fighting.
    Xo lynda

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  2. Also, that first pic of Lou makes him look like a d g model. Amazing....

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  3. I'm thinking about you ALL DAY and ALL NIGHT long.

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  4. I am glad that there are still options and I think that if the neurosurgeon thinks this option might work then there is the chance it will! Keep the faith and big hugs to you, especially Ty!

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  5. Love will get us through! As long as Ty is with us there is a chance for a miracle. He is such an amazing child, his will is pro founding.

    Our family has always been close and that is what gives us the ability to be strong at times like these. Our Dad's are the GREATEST and they have certainly taught us what life is all about and continue to do so.

    I feel so blessed that my brother has found someone who can appreciate all of his beauty, he is truly an amazing person. The love he has for you and his children is unending.

    I love you guys more than words can say! MIRACLES DO HAPPEN!

    To Ty, Aunt Debi loves you more than the moon and the stars and the sun, you are my sunshine!

    xoxo Deb xoxo

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  6. Your family is amazing. I'll keep praying and hoping for good news.

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  7. your blog is the first thing i check in the morning!! i had to hold back my tears because i am at work! I beg that ty will be better!! You and your family are truely amazing and it's so unfair that this can happen.

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  8. Like Bridget, your blog is the first thing I check in the morning. Thank G-d for this surgeon and thank G-d for giving Ty parents like you two. Glad there is a feasible option and plan.

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  9. Continue to pray for you....praying for some comfort and peace beyond understanding during this very difficult time.

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  10. Oh Cindy, Wow! I have been out of the loop this weekend and I just read all your weekend blogs a few secs ago. My heart is/was racing! I am very sad to hear of what transpired over y'alls weekend. Do you know when the next surgery is?

    Looking at the video tribute to Lou was so sweet. The pics of the pool shots of Lou and Ty, ahhhh, I envision that for y'all sometime in the future. A cancer free Ty and a relaxing vacation for you 4. I am REALLY hoping that for y'all.

    Hope today gets a little better for y'all,
    Jan
    Georgia

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  11. I forget how I found Ty's story, but since January I have been following his progress. Every night my son and I pray for Ty and your family. This weekend I felt like I was praying for you with every breath. I want that lightening to strike so badly for you all and until then will never give up the hope - Rebekah (and James)

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  12. Cindy & Lou,

    I just read your updates, I hadn't expected you to post in awhile due to Ty having a break in treatment. I am so very devastated right now. I do not understand why this is happening to your precious little boy. I don't understand and I will say it and I hope I don't offend anyone, but I am VERY ANGRY with God! So if it hasn't happened yet, trust me, I will be angry for your family.

    How can something like this happen? It truly does make me sit back and question my faith. I do not understand it, and I cannot comprehend why something would happen like this to your precious angel. I do not and I will never understand and there is not a priest in the world who would make me understand.

    I cannot imagine going through something like this with my child. Everyone I speak to about Ty or show his blog to, I'm like, look at this little boy, he is Alex's age. ( My 3 year old son.) I see Ty in his Spiderman pajamas and I see my son in the same pajamas, only they are Disney Cars. I cannot imagine anything happening to my little boy. It is the scariest thing in the world. But what is scarier, is someone telling me there is nothing that can be done. Fuck that! Again, I am sorry and maybe I shouldn't be posting this but I am so f****** angry.

    I don't know how you guys do it, and I don't know how you feel because I have never been through this, and cant imagine ever going through this. But I will say one thing, look at that bracelet and KEEP FIGHTING! You can never stop fighting. Ty has beat the odds every time and there is no one that can guarantee that he will not beat the odds this time, and if they believe they can then screw them, because nothing in life is guaranteed.

    I think you guys made a great decision to have Ty's surgery, and when he is a teenager driving you nuts one day, this pain will be a distant memory, one you can never forget, but a memory that wont cause you anymore pain. You will never have that feeling or thoughts of what if we would have tried this or what if we would of done that.

    I know it is easy for me to say these things to you guys because I am not in your situation, but I try to imagine myself in your situation and I know that there would be nothing I wouldn't do to save my child's life. NOTHING. I would give my own life if it meant saving my child's life, no questions asked.

    I know I do not know you from a hole in the wall, but I have have a tremendous amount of love in my heart for your little boy and your family. My heart breaks for you guys everyday. What can I do? Continue to remain positive, and it won't be difficult to do, because I know your little boy, Ty, your little fighter will prove everyone wrong and beat all the odds.

    Team Ty always ;)
    staying positive in
    Baltimore, MD
    Joy Marielle

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  13. A truly beautiful family!! I love that neurosurgeon!! Go Team Ty!! Praying praying praying!!!!! Stay strong, keep fighting!! <3

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  14. Like Coach Jimmy Valvano said, " don't give up, don't ever give up !!"
    Great things happen with prayer. God is great. I am praying for a great family. Great things will happen.
    Fight Super Ty, fight !!

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  15. like everyone, i am in tears also as i read your blog today. they are tears of joy because i have been praying soo hard this whole weekend praying for a miracle praying for options for lil Ty and i beleive God is listening. at the same time they are tears of saddness and anger also because i too feel that no family should have to go through so much pain and suffering and i feel its soo not fair for ANY child to suffer like this. but yes i have 3 children and would also do ANYTHING for them. im soooo glad that you are going through with this operation. Please God give lil Ty his miracle PLEASE PLEASE PLEASE

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  16. I will keep praying as long as it takes. You are all amazing!!!

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  17. Cindy:

    One round at a time. And it is great to enter a new round with a great coach/Dr.

    I remember this was something to attend, and the sooner the better. I hope Ty understands that everything you are doing is TO BEAT CANCER UP!

    You are so lucky to have all those champions on your side!

    Let us know the date to do extra prayers and masses for all involved. Ask John Paul II for his intervention along with the Virgin to give you strength.

    Sorry for the MLB Team but we DO NOT LIKE THE METS!!!

    Remember:
    God is even kinder than you think.- St Theresa

    Frequently remind yourself that God is with you, that He will never fail you, that you can count upon him. Say these words, "God is with me, helping me." - Norman Vincent Peale

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  18. Cindy - Never give up hope. Keep fighting, keep loving your beautiful boys - Lou, Ty and Gavin. We are all praying for you.

    xoxoxo,
    Maria

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  19. Thinking of you all 24/7. I love you with all my heart and am so vested in your lives. I pray every day and night for a miracle for Ty. I love you all and am praying harder than I have ever prayed before. Love, Laura

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  20. Keep fighting Ty!!! Knowing Lou for a few years at college makes me know there is still plenty of fight left in you! My family and I will continue to pray for you.
    Brian Gelman

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