Avery's Journey: Pity Party

I hate Friday's. I hate them. It's so easy to pretend nothing is wrong when you aren't in a hospital full of sick children. It's such a slap in the face every third Friday when I'm forced to face reality. The adrenaline from diagnosis has worn off and I'm left with a broken heart that I like to ignore. In between the weeks I try my hardest to drown out my thoughts with mindless TV watching, knitting constantly, and keeping my mind busy with something else until the very second I fall asleep. This NEVER gets easier. I hate blogging too. It forces me to relive everything I didn't want to go through in the first place.

The doctor told me today that we only have five treatments left. FIVE. I feel like I should be so happy but.. I'm not. LCH is funny.. the prognosis is really high, and so is the relapse rate. I met with 3 other families a few weeks ago that have also been affected by LCH. Out of three, two have relapsed MULTIPLE times and the third just barely got done with treatment. There was a 12 year old boy there whose mom told me she's lost track of the relapses. Discouraging, huh?

Our doctors at the hospital say, "Well, it's not like a Leukemia relapse." That is such a punch in the gut. Relapse is DEVASTATING no matter the circumstances. If Avery does relapse she will most likely continue to respond to different types of treatments. The specialist likes to say "We have lots up our sleeves." But what difference does it make?

I feel like she has gone through enough. She is getting older and much more aware of what is going on. Avery has now started to cry when they access her port. It breaks my heart that she feel like the doctor is "scary". How do you explain to a two year old that they are trying to help her? You can't.

I'm terrified to think about the long term effects that this disease as well as treatment will have on her. My mom tells me to not worry until we get to that point. But telling me that is like telling me not to blink.

I'm just so freaking tired of feeling like this. I guess all I can do is pray that He won't make her do this again.

Alright, I'm done with my pity party - for a bit of good news.

Avery is now eligible to receive a wish from the Make a Wish foundation. If you don't know who they are - look it up. It's the greatest club that you never want to join. :) In about 1 month Avery will be able to "declare her wish" at the Make a Wish building in Murray. She has been given a key and I've been told that it will unlock a door where she will be able to declare her wish to the Wishing Wizard. They won't tell us anymore than that. I don't think she really understands but I do know that she deserves this.