Well ...that's a wrap

I received the call on September 3rd - that was it.  Aly's treatment was over. It was her first day of Senior Kindergarten and her last day of chemo. I was not expecting this.  In my mind she was supposed to be in treatment until early 2014.  I wanted to prepare.  I wanted the countdown - I wanted to document the last few treatments, I wanted to have her "beads" all completed before her treatment was done.  I feel like the end of treatment came as abruptly as the diagnosis did. The one thing I don't miss is the steroids and what they used to do to Aly.

 I had heard other parents talk about how life is hard after treatment is over.  I never really understood that until now.  You would think I would feel great that Aly no longer had to take toxic drugs orally, or by IV.  But that was my safety net. Although I know that some kids do relapse while on treatment - it made me feel safe that she was still getting chemo.  I know she is not a high risk to relapse - but there is still a risk.  I worry about how her body will react to being off treatment - what has changed?  What has been damaged? Anything? Nothing? .....I feel like I am just waiting.  Everyone around me is celebrating - they are happy and relieved.  I was strong during treatment - probably too strong sometimes.  I feel like that strength is gone - I now have no control.  I feel like I am no longer protecting her and she is vulnerable - I feel vulnerable.  It's such a weird feeling.  Friends and family around me want to celebrate - they want to gather and celebrate.  It's too early for me.  I am not person who has strong faith - but I do believe that things happen for a reason and I NEVER want to take her health for granted.  I feel am hesitant to celebrate too early because of the "what if ....."  I need some time to adapt to this new normal and have our monthly visits with strong blood counts.  Once I slowly leave this storm behind me I can begin to think about celebrating.  I think I will put it off until the Summer.

I didn't cry that much when Aly was going through treatment - there wasn't really any time to cry.  It was one of my rules "no crying in front of Aly".  Not many people followed that rule - but I felt it was important.  She needed to be strong, she needed to see me strong.  When she was scared she always looked to me - I couldn't look scared - I needed her to know it was all going to be okay - I had to smile.  Since going to Camp Trillium and now that she is done treatment - I find myself being much more emotional.  I could cry at the drop of a dime.  I was asked to say speech at a recent fundraising walk to raise money for Leukemia. "No problem" I said, I will talk.I have talked about Aly a lot, both privately and in public.  I've got this.  I was even so confident that I didn't write a speech.  Why would I need to write this down - I have lived it. Well I think I got 2 sentences in - I picked up Aly as I introduced her and that was it.  Standing in front of approximately 150 people I started to cry. When that happened - I could see the look on people's faces.  They were there walking to raise money because they had a parent, spouse, or grandparent that was diagnosed with Leukemia - they weren't expecting a child.  As I was speaking - I was looking around the crowd and I was not the only one with tears.  I was able to compose myself and continue - and I can't recall if it happened again. Although I was not comfortable crying in public - I got over it quickly.  It was a hard time for me and I am not sure it really sunk it until it was over.  

I wasn't working while Aly was in active treatment, so it became my job.  I logged her counts, I knew the doses of her meds, the rates they ran the IV and every single vital they took. Not only did I record them - I graphed them.  What else was I to do at 2am when I was wide awake in a hospital room.  I took it seriously - I must have pushed the emotion aside - I always wanted to know what was next.  I guess I bottled up 2.5 years of emotion and it was bound to come out.