I remember a day almost 6 years ago, I was sitting in one of Ali’s many doctor’s offices talking about Costello Syndrome and all that the diagnosis meant.  We had just received the results of Ali’s genetics test and I was desperate for someone to tell me something to give me some hope.  We were talking about the cancer risk and I literally felt like my heart was being ripped out of my chest – I was terrified that my beautiful baby was going to get cancer and die.  She was a just few months old at the time, this was all new and we had this scary path ahead of us and the cancer risk terrified me.  It still does.  At that moment there was nothing the doctor could say to calm me and she knew it, so she gave me some words of advice and told me just to hang on until Ali turned 6.  At that point, from the literature available, it seemed to her like the cancer risk would be smaller.  I held on to that piece of advice like my life depended on it.  I’ve held on to it ever since, because to be honest, I’ve needed an end point, something to aim for.  I couldn’t just go through life indefinitely worrying about it and I’ve repeated her words to myself hundreds of times over the past 6 years…“Just get through until she’s 6”.  Today, Ali had her last ultrasound before her sixth birthday which is in 5 days.  I now know that there is still a cancer risk after 6 but I’ve become very well educated on Costello Syndrome and I do believe whole heartedly that the worst of the risk is behind us.  But regardless of that, we held on, just like the doctor said to and here we are, 6 years down this road.  Six years ago, sitting in that room, more terrified then I’d ever been in my life, it felt like it was an unreachable goal. It seemed impossible to live the life we were being handed every single day for 6 years and yet somehow we did.   Look how far we’ve come.  I have worried about cancer EVERY SINGLE DAY since I had that conversation.  I’ve shed so many tears and lost so much sleep over those cancer odds.  So this is a huge milestone to me, even if it doesn’t really mean anything.  For 6 years, I’ve been waiting for this day and hoping that when it comes, I can find a way to stop living in fear.   I am so tired of being afraid.  It takes too much energy to worry so much.  To me this day is huge because of how far away it seemed as I sat there searching desperately for some reassurance that we’d all be okay.  Six years into this journey we are all still okay.