Tuesday, September 6, 2011

May this be the first of many!

How can I even explain the relief we feel today?  Or, the fear we had earlier today?  I can't find the words.  All I want to do is shout out: "Ty's scan is clean!  Unchanged!  Stable!" 

This means that we can move forward with the new chemotherapy regimen in just over a week: metronomic chemotherapy.  Ty will be receiving very low doses of various chemotherapy drugs on a daily basis by mouth (we will be adding cyclophosphamide, etoposide and thalidomide to his regimen).  If this continues to work, this medication approach will become our new way of life for a while.  He may or may not lose his hair.  He may or may not feel very sick.  The combination of these anti-cancer drugs aren't being given in doses strong enough to kill tumor, but now that we have validated the fact that Ty's disease is microscopic it should be effective in preventing new tumor growth, even if the cancer has otherwise become resistant to any of these medications.  How long will we have to do this?  That, for now, is indefinite.  We will have MRIs every two months and we will have to figure it out as we go along. 

The warnings and the side effects are all very scary and I don't want to spoil the good news by sprinkling all of my new fears into this post, but the trial results are very promising and I am just so hopeful!!!!  I think our little fighter is going to do just fine with this and hopefully he will be able to keep enjoying life like he has over the past month or so.  I see so much of his old self coming back to life.  He was always such a clown, even before he could talk, and here he is clowning around with me yesterday because he wouldn't allow me a nice photo.




This is the real Ty.  Except for all that dark hair!  I don't think he would be this dark if it hadn't been for the steroids because he had light blond fuzzies coming back after chemo.  The steroids made his hair grow in a completely different color and texture, but now that he has been off them for a while I am happy to report that it is getting softer and curling up again.  Just look how cute!  And yes, he is sitting up on the floor playing with blocks.  Haven't seen that in almost a year. 


In the meantime, me and Lou want to treat Ty to every kind of fun thing we can think of.  He is feeling good and we don't want to waste one precious day doing nothing.  We will be visiting with family a lot, I'm looking into a trip to Sesame Place, planning his birthday party (October 4!!!) and tomorrow we are being treated to a very special day at Yankee Stadium.  His very first baseball game.  We are all so excited and I can't wait to share pictures tomorrow.

It's been a long day and I really should try to settle down.  I guess I am just so wired from all that we've been through today!  I am going to sign off and try to get some sleep.  God has answered our prayers today and I can't thank you enough.  THANK YOU ALL INFINITY!  THANK YOU, GOD!

Tomorrow, please think of our friend, Grace , who also suffered a brain tumor and finished her treatment in February (woo hoo!).  Tomorrow she will be getting an MRI and I pray that she gets the same news we did - clean, clean, clean.  I was in her mom's shoes just last night and will go to sleep thinking of her tonight.  I also ask you to please remember all of the 40,000 kids who aren't returning to school because they are in treatment for cancer. Countless others are back in school, but missing a beloved sibling or friend who is fighting for his or her life. Childhood cancer affects everyone and I am so grateful for the multitude of posts and emails I have seen spreading the word.  You are all my best friends, I love you and I can't thank you enough.  Goodnight :)

22 comments:

  1. Awesome! Awesone!!
    I was thinking and praying extra all day.
    God is great!

    Prayers from Texas

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  2. Talk about happy tears!! I'm so relieved to read this post. I believe!!!!

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  3. Planning his birthday party.... The sweetest words. I am so glad you are there.

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  4. So very happy for Ty and all of you!

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  5. i am so glad what i read just now!!! God is amazing!!! Go Ty xoxo
    Baltimore Md Bridget

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  6. I checked the site all day long..was worried until I saw those beautiful words!!Thank G-d for this day.Thank G-d for the brilliant doctors , and for you, Cindy and Lou, for allowing all of us to come so intimately into your lives to share this inspiring story of one incredible little boy..Onward and upward!

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  7. Awesome!!!! I am so happy for Ty and all off you! Thank God! xoxoxoxo

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  8. We are so happy to hear this wonderful news!!! Have a great day at Yankee stadium today!

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  9. I am so happy for Ty!!! What a super fighter. I am so relieved. Lets hope every MRI is this good news.

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  10. Yea, yea and YEA!! I am SOOOO happy to see this post. Had a little moment of crying looking at Ty's perfect little face in the pics, but all is good!! :)

    I know y'all are so over-joyed and elated, as we ALL are. I am w/ you, take advantage of Ty feeling great and have loads of fun w/ your 2 special little boys!

    Love,
    Jan
    Georgia

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  11. So happy for Ty and you all. I have tears in my eyes right now but they are the happiest tears ever.
    Love,
    Taciani

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  12. I am so thrilled for you and Ty. That is the best news I've heard in a long, long time. I am just so happy for you! Thank God - I will continue to pray for you and all the other countless children affected by this terrible disease.

    Ann from Buffalo

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  13. God continues to amaze us. What great plans He must have for Ty and your family!

    "For I know the plans I have for you, declares, the Lord...plans to give you hope and a future." Jeremiah 29:11

    "But those that hope in the Lord will renew their strength. They will soar on wings like eagles. The will run and not grow weary. They will walk and not be faint." Isaiah 40:31

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  14. SO SO SO beyond happy for you guys! I am sitting here crying as I type - my family just got back from visiting our family at the NJ shore and at the beach I though and prayed for you guys frequently. I recently shared Ty's story with my daughter AJ who is 4 and the other day out of the blue she asked me if my friend Ty was still sick or was he getting better? Amazed, happy and proud that his story stayed with her and that she also thinks about him too!

    ENJOY - if anyone deserves to have fun and be happy and do all kinds of fun things it's your family!

    Still keeping you all in my prayers

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  15. Sending lots of love and continued, precious and amazing blessings your way!

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  16. too happy for words!!! I will never stop praying for lil Ty, your family, and all the children that are suffering with this disease. God hears our prayers.....thank you God!!!

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  17. It's my birthday today and I prayed all day yesterday that Ty's test was going to come out clean. I can't even begin to tell you how happy I am. I hope you're having a great day at Yankee Stadium, even though I'm a Red Sox fan:)) May all the days ahead be as bright and wonderful as yesterday's!

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  18. BEST POST EVER!!! This is awesome and profoundly joyous. Enjoy your time with the Yanks!

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  19. I am so happy for your little guy. I have not posted in a really long time but Ty's blog is still the 1st thing I check when ever I log onto the internet. Keep up the good work SuperTy.
    XOXO from Canada

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  20. This is such great news! I took a look back at where you were 1 year ago today and found this: "Imaging scheduled for today-hopefully we will get some answers"...you are finally getting those answers and the most amazing answers of all! BTW, 1 year ago on Sept 6th you posted: "Slow and steady wins the race"...Ty is winning!!!

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