Post SCT 1 Year Day +330....  resuming the countdown. 

Here we are attempting to resume our normal lives.  I'm still missing my daily calls from Dad wondering if someday this will all get easier.   I received a beautiful bouquet of yellow flowers from Alex's Lemonade Stand Foundation yesterday at work for my Dad - what a lovely surprise.  Thanks to all of you who honored my Dad with contributions to the Andrew McDonough B+ Foundation and ALSF.   They are both wonderful charities that we are very fond of (and they both offer tax deductions) which makes it a nice gesture all around. 

I had to recount the days Cole's been out from transplant as I was apparently redundantly repeating 'day 316' on a few journal entries.  The big news is that we are 35 days from Cole being 2 years from his SCT.  Yet another huge milestone in the life and times of Cole Fitzgerald although I know Dr. Griffin would remind me that 'officially' he's been off treatment since April 2008.  Ah, humbug.  I know of kids who tragically recurred while on treatment or never got clean depending on how you look at it...  we will celebrate it ALL!!  He has a repeat urine test to recheck his HVA / VMA levels next week and if all is well, I would imagine we won't see Dr. Griffin and A.I. for a few months out.   As much as I enjoy the visits to A.I. and feel good about Cole's remission and the care he continues to receive, it is a hard life knowing that there's always 'gunman' outside your front door that could burst through at any minute.  Being a survivor or the parent of one never quells the fear of recurrance or something worse.   Mind you, Cole is doing great... he's now into a size 5-5T and he's doing everything a normal kid should.  We went to a classmates birthday party on Saturday (both twins invited) and it was at a gymnastics place that has these inflatable slides, obstacle courses and playground equipment all indoors.  Cole was amazing to watch in action.  He goes on everything and if needed, he'll adapt his body to master the equipment.  For as skinny as he is, he has amazing upper body strength.   Seeing him enjoying life, friends and just being a boy is my happiness.  He continues to have a happy-go-lucky personality and he comes out with the funniest comments.   Cole starts kindergarten on Monday and I am nervous and excited for him.  It's all he talks about... "I'm goin' to kinda-garden!"  I know he will do well adapting to a new teacher and a new classroom environment.... he charms everyone he encounters. 

This weekend we are going to a family party in Horsham for the 4th.  My niece and nephew from Istanbul are in town so the kids will all get to see each other and go swimming. 

Griffin our 60+lb puppy is doing really well too.  I haven't talked about him much of late but he is still growing into one beautiful dog.  He's gotten much better with his potty training although if given the opportunity to go upstairs in anyone's house... let's just say all bets are off and he might leave a present behind.  Other than that, he's been a good boy. 

Please keep Bryce Frebowitz and Madison Ursillo (both on cb) in your thoughts and prayers as they undergo their own SCTs.   Bryce reminds me a lot of Cole. 

The picture is of me, my Dad and Cole in late January 2007 on the day we found out that Cole really had Stage 4 NB and he was starting treatment (which we thought might kill him) the very next day.