Wednesday, March 2, 2011

Switching into turbo gear

Ty's MRI was extremely disappointing. In the 19 days since his surgery, it is growing back and causing significant pressure on his brain stem again.  He has bounced back so many times before, but it is taking it's toll and this time it is hitting him pretty hard.  We need to get back in the ring immediately and we are ready.

Ironically, I received a phone call from Boston (Mass General) just before seeing the latest MRI report.  It turns out that they reviewed his case carefully and did not feel Ty is a good candidate for the proton beam therapy after all.  They said that the dosing with protons would be low, the efficacy is expected to be the same as IMRT (which is what we will be doing here at MSKCC) and the side effects will be minimal regardless of which approach.  So, there wouldn't be much of an advantage to leave our team here in NYC and drag him all the way to Boston for therapy. 

We were disappointed because we were always led to believe that if proton beam was an option, it would give him the best shot at survival.  The radio-oncologists we spoke with have reassured us that this is not the case given the characteristics of his tumor and I just hope they are not sugar coating.  At the same time, we are also relieved because when we received the terrible news about the tumor growth we realized we simply can't afford to wait for treatment in Boston anyway.  Even if he was a candidate, they wouldn't be able to take him for several weeks and in Ty's case every 24 hours is critical at this point. 

He was given a high dose of steroids this evening, and it has helped significantly (as suspected).  Although it will hamper any strength building in his arms and legs, it will improve his ability to speak and swallow, and it will minimize his nausea and head pain.  That alone will make him so much happier.  We are already seeing improvements just hours later.  He has a hearty appetite for the first time in weeks, he's been relatively happy and having fun (even made it to the toy room for Bingo tonight) and he is having much less pain overall. 

It's a whole 'nother story for Lou and I.  Our anxiety has spiked and we are completely on edge, but once he is in that machine and starting radiation treatment I think we will both be able to breathe a bit easier.  It will work, it simply has to.  His first dose may even happen as early as tomorrow.  We will keep you posted. 

In the meantime, thank you so much for all of your thoughtful comments, emails, gifts and facebook messages.  Even though we have little time to respond, please know that we read each and every one of them and are touched beyond words.  Without your support I don't know how Lou and I would be able to do this.  XOXOXOXO to all of you.

23 comments:

  1. You are truly AMAZING! Keep up the good fight for your little boy. Our prayers are continuous. We have lots of friends and family members who have joined us in pray for Ty. We're with you 100%.

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  2. I have been follow your story for a while now...you and your little one are in my prayers... Your strength is amazing.
    God Bless you and your family.
    Debbie

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  3. Cindy, you and Lou have to give each other a break and you need to find a place to scream. You both are under tremendous stress. I know you must not even feel like yourself and I am sure neither does he. Girl find that place to let off some steam so it is not at each other. You need each other and Ty needs the two of you. My prayers include all of you.

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  4. Hugs and prayers and sent his and your whole family's way.

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  5. Hey guys, I wish I could be with you all 24/7, know that you are ALWAYS in my thoughts and prayers. I am sending all my love and strength your way. Ty will bounce back again he is a fighter! I Love you all so much, Debi xoxox

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  6. Dear Cindy, I am following Ty's story since I first read about it on facebook.
    I am sending you all my good thoughts and prayers from Germany all the way across the Atlantic.
    Keep the faith and stay strong, all of you!

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  7. I dont' know you or your family..but my heart is breaking for you.. As a mother of 4 little ones.. it is devasting to read this type of story.. Know that there are strangers out there praying for you and your beautiful little boy..
    I pray that he will make a big change for the better today..
    Good luck and try stay strong

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  8. I am a mom in MN who came upon Ty's story on AOL and have been hoping, praying, and cheering Ty on ever since! My heart aches for the struggles you & Ty endure everyday, but what brings a smile to my face in each of your blogs is how you are making the most of each day with your son. You're truly enjoying and cherishing the little things with Ty, like Chutes and Ladders, scribbled pictures and cuddling side-by-side with him in his bed! You are a truly amazing mommy with great strength! Hang in there and keep making everyday special for Ty no matter how frustrating it gets and you be the rainbow and calm at the end of the storm for Ty!

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  9. I just want you to know that I am praying for Ty and your family every day. I don't know you but read your story on AOL and have been so touched by it. I've shared it with my sisters and we are all praying for you. Stay strong!

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  10. I am praying for Ty and your family. I don't know you but came across your story from mutual friends on Facebook. I think about Ty several times a day and say a little prayer. My heart breaks for all of you. Our daughter was sick a year ago with something so much less serious but very scary for my husband and me. I cannot imagine what you are going through. Just know that God is with all of you and he will give you strength. When you think that you cannot go on, stop and let him take over. He never leaves us even in our deepest time of need.

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  11. i am praying so hard for your sweet little man. it makes me sick to think of what you and ty are going through. God bless you all.

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  12. I stumbled upon your blog, but now follow Ty's story daily. As the mom of an almost 2 year, I pray for you, Ty and your entire family. The strength Ty shows is truly remarkable. My thoughts and prayers are with you.

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  13. Everything is crossed and I am praying big time. Let the tumor destruction begin. You can do it Ty, beat that cancer!

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  14. Greetings from Iowa, You don't know my family or I but I have a feeling that is going to change. I check in with you daily and pray and sometimes yell to God for your family and Ty.I have a son who is 4 days younger than Ty and as WE were checking in today I promised him that he could go play with Ty when he gets all better. Sooooo, I will have to figure that one out with you when it comes time because my son will not forget that promise!! I hope you all have a awesome day because you deserve one. Keep fighting Ty because you have already won the WAR and this is just a battle!!

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  15. Cindy,

    Its time to beat up the cancer! I am praying for you and your family! I truly believe that with every that your precious little boy will make it through this!

    Joy Marielle
    Baltimore, MD

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  16. I can sense the change in your tone. You're prepared for a fight. Seems like the random screaming in your car is working wonders!! and who cares if anyone thinks you're crazy. We're all a little crazy after all :)
    You're one tough cookie and your positive attitude is going to get Ty through this. I believe in a mother's love, strength in numbers and the power of prayer. You, my lady, have all three. SORRY CANCER! YOU HAVE NO CHANCE! You might as well leave now because ALL OF US aren't going to back down.
    Love, hugs, kisses and everything crossed for your little boy Ty. your miracle.
    The McCarthy's

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  17. We must go on believing that everything is going right, whether it currently seems so or not. Remember your blog about blessings in disguise? All of those situations for which there seemed a clear absence of hope later proved to be clearly hopeful.

    Cindy and Lou, this is so incredibly hard for you and I'm sorry beyond dumb words. But I'll hope and pray my head off until it pops off and even right now I can see a path to Ty's complete recovery. Even right this second!

    All my love!!!
    C

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  18. Addendum: Even right now I can see SEVERAL paths to Ty's complete recovery.

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  19. I wish I could like Ms. Rosen's comments!!!

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  20. You are one AMAZING woman. I have been following your family’s story for a while now and I have come to care for Ty, Gavin, Lou and you. The things you all have had to endure are unbelievable and unfair. No one should ever have to go through the things your family has had to face. But you hold your head high and say “We are going to beat this!” And I believe that with every fiber of my being. The power of prayer is strong and there are so many people praying for Ty that it WILL work. Just know that your strength is inspiring for many people that are going through much less trivial things. It is ok to kick, cry and scream when you feel the urge, you have every right. You have MANY friends out there that have your back even though you may not know it.
    Keep holding your head high.
    Samantha
    El Paso, TX

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  21. Cindy, I am beyond words to express what your blog has come to mean to me, many people go through tough times and struggle with everyday life, but you and your family have had to endure more in six months than most do in a life time. You have every right to be angery, scream, shout or what ever you feel the need to do in order to stay strong, know that every one who has read your blog is rooting for you, you have a good support system following you. I am making Ty a special gift that I will get in the mail the first of the week, there will be some other goodies for him and Gavin as well, be sure to give them both lots of hugs & kisses, oh and don't forget to give some to Lou as well.
    Keeping you in my prayers here in Arkansas!
    Debbie

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  22. Keep that fighting spirit. Ty is such a fighter...and so are his mom and dad. When you need a refill on that supermom strength, just remember that you have friends behind you sending all of their love, strength and positive energy. Love to you all.
    Ev

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