More thoughts ....

I have found out over the last 2 1/2 years that when I get stressed I get tired and it seems I like to find refuge in sleep - haha

I did not get my 12 hours of sleep last night as I wanted but got 9, and then a 2 hour nap today so after all I got very close to it ;)

I admit I have been taking in the news about Connor's labs fairly well. I always, always had it in the back of my mind the thought that each day that Connor is doing so well is just a gift and when you think back at how fast JM attacked Connor initially ... from being a healthy kid to being hospitalized and at times in fear of his life in took just 8 weeks .... Then you know that this time I was not really shocked how fast he was hit again.

Today he has hardly walked at all and we carried him most of the day. I gave him his Chemo Therapy this morning and the higher dose of Steroids as well and was hoping to see it improve throughout the day but nothing as of tonight.

My fear now is that he is back where he was initially in the very beginning in January 2010 ... his body is not truly absorbing anything orally. That was the news we got from Dr. P after we arrived at CMH after he had been on steroids for almost three weeks and no signs of improvements.

I will e-mail Dr. Soep tomorrow and kind of play this to her ears and see what she says.

So looking at Connor today and how he laid around listless and sad was indeed hard to take in.

When asked how I was doing I said I was handling it fine but fine is what I have become in the last two years. I said it many times and feel it by how people interact with me nowadays that I am not the person I was before JM. I am more somber, critical and I am also carrying around a sadness in my heart that I did not have before JM. So to say I was shocked about the turn Connor took in the last few weeks ... no that would be a lie. I am sad, but back in my head I have been waiting for this day ... I am to plugged in to the world of JM to ignore all the messages and postings from other parents about flares in their children. The number of kids who regress is way higher then those that go in remission, at least that's how it seems to me.

YES, I was also hopeful that we were the ones that would sail through this. While I might always have been cautious, I also always hold on and will never give up on HOPE!!!

So we are just getting back to where we were before. I had a long talk with Connor about how he is used to fighting this and how good a team we were before and that we will do the same again but maybe even fight harder this time around.

There are other reasons why my heart is heavy, some of them are the fact how all this is breaking my parents hearts. My Mom has a hard time not crying and she said today how depressed and sad she is right now. Connor's heart is breaking again of course and he has voiced this several times today, and Alexander is very hard hit by it as well. He is afraid for Connor but also afraid to loose the life we were getting used to again.

You see we are prepared this time around which makes it different, not easier but different ....

Thank you again for checking in!

Hugs,

R A C A