Thursday, December 29, 2011

MRI Details

Okay.  Exhale.  But don't get too comfortable, because there is always an ounce of uncertainty in the doctor's eyes.  I hate that.  Nothing can ever be 100% (I'll explain), but obviously no visible cancer on Ty's MRI is absolutely amazing news.  We are so grateful and so relieved.  Thank you all SO MUCH for your prayers and support.  As always, it helped us through the anxiety and helped Ty remain cancer free.  Six months!  May he remain cancer-free forever.  Thanks be to God. 

We were told that what appears on the scan was most likely the result of an isolated incident where Ty had a small hemorrhage near the brainstem, causing stroke-like symptoms.  The hemorrhage is believed to be a delayed, but not uncommon side effect from radiation.  Although he completed his radiation more than six months ago, Ty's brain is still healing from the trauma and as it heals there is evidence of several small, sporadic bleeds within the brain.  This is normal and expected.  Unfortunately, when something like this happens in the brainstem area where Ty has already undergone so much... the effect can be more noticeable and it will take a long time for him to recover physically.  Possibly two to three months before we see any improvement on his left side.  So sad!  Especially considering how far he has come, he was oh so close to walking again.  This is a major setback with regard to his physical recovery, but we'll take it.  As long as it isn't cancer, it isn't deadly, and it isn't permanent - we are thrilled. 

Now for the tiny, invisible gnat that remains hovering in front of my face.  Flying back and forth, too close to my eyes and in and out of my ears.  The results from the MRI weren't delivered without a shadow of a doubt.  There is still a possibility that what we're seeing is the early stages of tumor activity near Ty's brainstem, but our neuro-oncologist and neuro-radio oncologist were very confident that it was treatment effect - not cancer.  They both agree that the slightly highlighted areas in the brainstem area represent swelling, not tumor, and that Ty will be able to recover from the side effects over time.  However, when we ask "how do you know for sure that it isn't tumor?" the answer is simply, "we don't."  That one comment in the context of an otherwise joyous and jubilant conversation stabbed me in the gut where it remains as a reminder that we aren't out of the woods yet.  But... we are doing great navigating our way through the forest.  Beyond great.

Several people have asked me what Ty's prognosis is now that he has had several clean scans.  I'm not sure how to answer that question, and I don't think his doctors would have a definitive answer either.  I am confident that he is going to beat this... that he has beat this... that he will never, ever, ever have cancer again.  There are no documented cases like Ty's, so our doctors can't really be sure how his cancer will react to treatment.  We follow protocols for similar tumor types, but there is always the question of whether Ty's tumor behaves more like a sarcoma (a type of tumor that develops from bone or muscle) or an AT/RT (a tumor that develops from brain tissue).  His official pathology is a malignant rhabdoid tumor that originated from bone and later metastasized into the brain. 

I read somewhere that an AT/RT patient isn't considered cured until they show clean scans for FIVE YEARS without any evidence of disease because recurrence is so common.  That scares me to death, but what else can I do but hope and pray with every ounce of my soul that Ty has beaten this once and for all.  That's it.  Be happy with today and enjoy every minute I have with my special boys.  And, in five years - four and a half, actually - I will finally shout from the rooftops that Ty is cured!  I hope you are all still following us at that time and not bored :) That sounds so far from now, but when I think that it has been six months already I realize how incredibly fast time is flying now that Ty is feeling "bedda".  Time stood still when he was sick.  It feels like yesterday and I remember every excruciating moment.  Now that he is better, the days are filled with fun and laughter and they are zipping by all too fast!!  I need to take more pictures :)  I am so blessed. 

Thank you all, as always, for everything.  I am the luckiest person on the planet.  Today was indeed a good day.   


 

9 comments:

  1. Great news! God is great . I can't believe it has been 6 months of cancer free. In 4 1/2 years from now, you will look back and see the great progress he has made everyday.

    Prayers from Texas,
    Robert

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  2. Cindy:

    I was not going to bed until I had an update and for some reason I am locked out of Facebook. I had an event I had to deal with today that I called on God. However, I asked God to be with me only if it did not take away from Ty (silly I know since God is everywhere) - however, it was my way of sending vibs of faith and love your way and still giving Ty my guardian angel to squeeze just one more into that room. God Bless. Rest well tonight.

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  3. I have been checking in all day and I am THRILLED to read this post!

    And, yes, we will still be following you guys in 4.5 years... and, I hope that we ARE bored. I hope that your posts are filled with the same old news about Ty's continued recovery. I hope your posts are filled with every day reports about how Ty and Gavin's days in school are... I hope that you are off of this rollercoaster and are able to simply report about the joy of an ordinary day in the life of a beautiful family with two sons doing every day things!

    I can't wait to read all about it.

    Here's to an amazing New Year filled with good health, rest, fun and relief for all four of you!
    From all of the Angelous to all of you, our heros -
    Janah and Zev

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  4. Cindy,
    What tremendous news. I started grinning ear to ear when I read the short "it's clean, it's clean" post earlier today on Facebook.
    May you have an amazing weekend of Happiness, knowing that you are going into 2012 with a healthy child!
    God Bless you all.

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  5. Hola!
    Though these news make you a little uneasy, and the road has been long, know that we are by your side, praying and giving thanks for the miracle He has done in Ty.
    We wish you for a healthy 2012!
    Love you

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  6. Such great news for the Campbells. While the small bleeds are a set back, they are fixable!! You and Lou are amazing parents! Ty is so lucky becauase you And your husband have been such great advocates for him. You have never settled and that has given your doctors the push to keep going. You are inspirational to people in our field. Your courage and hope are infectious. I look forward to reading all about Ty's case when it is written up because it will be. And in the end, they will have your family to thank for letting them care for your most precious baby and brother. May 2012 be all about finding your new normal. It is about time. Celebrate!!

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  7. I am so glad there are no signs of the cancer in the MRI! I know this is a small set back but Ty is such a strong, beautiful little boy I know he will bounce back in no time!!! Keep your spirits up and snuggle those two adorable little boys of yours (: Happy New Year to you all!

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  8. I am extremely happy for Ty and all of you. He deserves it so much for everything to be over. Can't wait until you are able to shout that he is indeed cured forever.
    Love,
    Taciani

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  9. Everything continues to go well despite it all! Ty's a pot of gold. I'm placing all bets on him!

    Could 2012 be the best year eva??? Beyond our wildest imagination eva eva eva???

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