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.