Wednesday, September 12, 2012

Bi-monthly MRI Friday - as long as Tys breathing improves

Another great topic to talk about during childhood awareness month.  The MRI and the dreaded "scanxiety" or "scanticipation" that goes along with it. 

Living a life where your child receives frequent MRIs is like watching your kid forced to ride a unicycle across a tightrope.  You have 60 days to practice before the big performance (I used a 60 day example because Ty's standard MRI's are spaced out every two months).  While your kid is in treatment/practicing you gain a lot of confidence.  You're shaky at first because the last time it was really scary, but now you are breathing easier and ready to prepare for the next one.  There's not much you can do to prepare your child, so you just make sure he or she finds ways to have fun during downtime (even though "fun" is more often defined as being sick from chemo).  You are still coming off the high from the good news you got after the last performance (or you are thinking about that one minor slip up they spotted the last time that may or may not mean life or death).  You think about how strong he or she is feeling and how great they're gonna ride that unicycle.Then it's showtime!  Holy crap.  The days leading up to it are brutal.  You can't hold onto your sanity no matter how much you try. You over analyze everything your child is doing. You watch the performance knowing it all comes down to the expression on the doctors faces who are waiting on the other side of the rope.  What do their faces tell you?  That's when you know if your kid is going to make it and be greeted with cheers and deep breaths, or if he's going to fall off as you run to collapse around him.  To protect him from any bad news.  To maintain the blind hope that keeps all of us going.  We'll get 'em next time!

We have traditions that we try to uphold at MRI time.  Our next one, by the way, is scheduled for Friday, so the nerves have been working overtime.  Sleepless nights have become the norm again over the past two weeks.  We eat out the night before.  Sometimes Chinese food, and I have sweaty palms like you can't imagine when I reach in to pick my fortune cookie.  I fill his bags for the hospital with a plethora of good luck charms and sentimental tokens.  Most have been given to us as gifts, and they range across all religions.  My most powerful tokens of faith, calm and serenity will be in my pocket, and on my wrist (I have a charm bracelet that means so much to me - I wear it every time).  When Ty goes under anesthesia, we leave for St. Catherine's church.  Then we get some coffee and breakfast before returning to the hospital to wait for the news.. which is essentially whether or not your kid is gonna live of die.  Yes, it is that real and that dramatic. 

I can't stop thinking about Taylor Swift's song for Ronan.  It is so beautiful.  It breaks my heart.  I loved Ronan.  Very few days passed over the past year that I haven't thought of him and his mother.  Talked about them to my friends.  Put myself in her shoes.  I was actually supposed to be her. She always had a blog, too, and when she wrote about Ty it was with so much pity.  She couldn't believe how destroyed he was by the evil cancer in his body.  Understandably so, Lou and I felt the opposite about Ronan.  We couldn't believe how alive he was, what a fun spirit he had as he bathed with his star wars figurines each night and had the energy to shoot guns up and down the halls despite the fact his white blood cell count was at zero.  We couldn't wait for Ty to be like Ronan.  To recover so he could to play.  When I checked on his website a few weeks after we parted ways, just to see how he's doing, the title of the post read, "Where is Ronan?"  Never will I forget it.  How could he have died??? 

Taylor Swift did something that will change the face of childhood cancer.  It will raise awareness in ways that all of us cancer moms could only dream of.  Maybe Ronan will change things.  Maybe Ty will be saved.  Maybe the story needs to be expanded to include not only the little boys that die, but those that live but can't ever live a normal life because the treatment destroyed them.  The worst thing about pediatric cancer isn't the needles or the bald heads.  Sure, that's sad... but little boys who die and little boys who end up in wheelchairs... those are the pediatric cancer patients I know.  Something's gonna change. Thank you, Taylor Swift.  You are an angel.


12 comments:

  1. Cindy I just downloaded that song. I am about to listen to it

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  2. Beautiful. "I love you to the moon and back"
    This is a beautiful song. I might just listen to it all night long. Thinking about Ty always. Cindy we are all here aways to talk and hug at anytime. ALWAYS

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  3. You have friends in all of us. Please never forget that

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  4. Beautiful post Cindy. I will keep Ty in my prayers even harder this Friday.

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  6. Cindy, in which post did Maya talk about Ty? I would love to read your two blogs from that time in tandem.

    My love and prayers are with you all, always. You two young mamas make me really want to volunteer on the oncology floor at a Children's Hospital. I am a mother of 5, grandmother of 5, kindergarten teacher with a lot of warmth (and humor) to share. I think have a lot to give and you have inspired me to offer. xoxoxo

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  7. The song is indeed beautiful and Ronan's story is heartbreaking. Yes the song is helping to shine a light on Pediatric Cancers, but as you say - it's only part of the story. So many people do not know the damage the treatment can do to those who survive so please continue to tell the world about Ty and his battle - it's so important for people to know how devastating this disease is and the toll it takes. I'll be saying prayers for you all on Friday - hoping for the best outcome possible.

    Please don't forget if there is ANYTHING we can do to help get Ty the stuff he needs - just ask. If there are things we can help provide - games, videos, something to help with this rehab, just let us know. I'm sure there are many people reading your blog just itching for a way to help out - me included.

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  8. Praying for you and your family!! Miracles do happen and I believe they will for your precious Ty!!!

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  9. I saw the news clip of Ronan's mom - she seems so awesome. It was a really touching news clip.

    I know Ty's scan will be perfectly clear tomorrow. This does not help your scan-ticipation too much but I feel confident in ditching the cancer scares. Still I will be with you tomorrow all day long. I will be hugging you and holding you up in my thoughts. All is well, all is well!

    xoxoxoxo

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  10. Cindy, Lou, Ty, Gavin
    Thinking and praying for great scan results.
    This time tomorrow you will be breathing sighs of relief and enjoying the early fall sunshine!!!!
    We love you and are with you in the journey to cure!!!!!

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  11. Hi Cindy,
    We are all thinking of you and praying for clear scan results. And just so you know, Taylor Swift is not the only one changing the face of childhood cancer. You have a true gift in giving such a genuine voice to the ravages of this disease. I hope you come to realize some day just how many lives you've touched, especially your sweet Ty. My thoughts and prayers stay with you and your beautiful family.
    Cathy from Colorado

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  12. Cindy, I think about Ty & your family daily at this point. That little boy's face was sunshine to my heart from the moment I first started following your blog/fb page. The hell that you guys have been through is unimaginable. Ty has touched my life in so many ways, I think of him throughout my day, and randomly stop and pray for you guys. You are an inspiration of strength, love & devotion. I hope that you may one day publish Ty's blog, as its something I know people would cherish. I do believe in miracles & I have friends & family praying for all of you. This little guy has truely touched my life. We are praying so hard for you Ty.

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