Monday, December 19, 2011

Restless night

I was exhausted last night so I went to bed early, without even picking up the house.  Of course, that backfired on me because I've been up since two in the morning tossing and turning.  Now I'm sitting in my living room surrounded by the mess that awaits me and wishing I was sleeping soundly. 

I am worried, but not terribly.  Ty's left side seems weaker than usual.  His hand was cramped closed the majority of the day and he can't lift his arm as high as usual.  I've been told he is going to have good days and bad days so I just keep reminding myself that it was a bad day as far as his physical progress goes.  Praying that tomorrow will bring improvement.  I was obsessing over him while he was sleeping and happy to see that when he is relaxed his fingers in his left hand are loosely open (there were times when his tumor was acting up that his hand would remain severely cramped closed at all times).

He is such a sport about it.  It doesn't even seem to bother him when something like this happens.  He just finds ways to accommodate and I am always so impressed by that.  For example, when he was playing with his toys I noticed him lifting his left arm with his right hand to move things along and he did so with a smile.  If he's not worried, it helps me to worry a bit less.  Don't get me wrong... I will be calling his doctor in about five hours and I've already sent him an email for reassurance. 

We have been so busy preparing for Christmas, I wasn't able to share any updates for days!  Below is one of the Christmas photos we took of the boys.  I just love the way Gavin is holding Ty's hand.  These two melt my heart. 

I went out to dinner in the city with a friend on Saturday night and had a great time.  It was so nice to catch up and know that Ty is perfectly fine at home with his Nana for a few hours.  How my life is finally turning around!  It's wonderful.  I am happy to step out from the crazytown that I live in most of the time and make pretend that I remember what it is like to be normal.   

I am really looking forward to Christmas.  It is going to be so magical this year.  Even though I should be panicking because I have so much left to do, I could care less.  Our tree is gorgeous and I just love this time of year.  Everything will get done and I imagine this will be the best Christmas we've ever had.

At dinner I learned that a mutual acquaintance lost her daughter to cancer a few months ago.  My friends had kindly conspired to keep this information from me (I was aware that the little girl was in treatment) but it came up in conversation last night.  I ended up crying during my drive home, for her and for another little girl I know of who lost her life to neuroblastoma this week.  There simply isn't enough being done to support new initiatives in pediatric cancer and it's disgusting.  It makes me sick that there haven't been any major advances in thirty years!  That children are following adult treatment protocols that are highly toxic and met with much less success.  Lou and I will never stop doing what we can to help change this.  In fact, we are talking with our neurosurgeon on Wednesday to discuss ways in which we can leverage social media and under served research to gain momentum for a few niche pediatric brain tumors (i.e. rhabdoid tumors).  Some day things will be different. 

Speaking of which... have you noticed all of the green posters?  All of the amazing visibility Saint Jude's has this Christmas season?  Every time I see a poster I smile from ear to ear. A photo of a beautiful baldy that reads "help to save her life".  Finally.  I have always been discouraged by how little is out there from a marketing perspective to support pediatric cancer research.  I never understood it.  These children are our future and the statistics are crushing!  Pink is everywhere for breast cancer.  When will there be similar marketing campaigns to supports the children?  I think it will happen, and soon.  Pottery barn was selling beautiful candles where all proceeds go to Saint Jude's and they were sold out before I could even get my hands on them!  Well, that's not true, I got a hold of a store in Pittsburgh that had a handful left and I cleaned them out - had them shipped out to me.  If you are asked if you would like to make a donation to Saint Jude's during your next checkout at the supermarket, CVS, Target, etc.... please do so.  Please.  I know things are so difficult right now, but as Mary Pallota says... you can always give a half a sandwich.  Mary and The Guardian Brain Foundation has been there for us from day one and we simply adore her :)  She has such powerful love for the cause and a perfect perspective. 

Click here to see how one of my favs, Jennifer Aniston, is involved.  The picture below isn't an actual link to make a donation, but I wanted to share an image of the types of posters to keep an eye out for this year.  They are everywhere and I couldn't be happier about it. 

Just one last update before I go.  This afternoon I was researching AT/RT long term survivors (5 years or more) in order to see what their treatment protocols were and how long they continued with oral chemotherapy.  I only found three so far... so unfair... but their stories only strengthen my hope.  Ty will be among them, I just know it.  In fact, there was one girl who shares his miraculous story almost exactly.  She had MRSA meningitis, she had multiple shunt complications, she had metastases and she had lepto-meningial disease that was cured with radiation.  Unbelievable.  She is five years cancer free.  That is just amazing.  I hope I can find her parents to share stories and get some advice. 

I am going to try and catch a few more hours of sleep before the household is buzzing again.  Goodnight everyone, and thank you for your continued prayers and support. 

1 comment:

  1. What a beautiful post from a beautiful person. On Your quest for Ty's health, I do hope you find the right fit for you and the way you will help the fight of childhood cancer. I know it will come and present itself. You have already inspired me to make my own changes all in the name of Ty. Great pic!!!