I hate Friday's. Kinda weird since I used to love them. I just feel like crap...like I'm in a nightmare and can't wake up. Avery's 10th appointment went just as planned and she was as good as she always is. We had a 4th year medical student come in to see her today and review her case. Talking about it always makes horrible memories come up.... which is why I say everything is "good" when people ask. But how "good" can things be really?
It's so easy during maintenance to kind of forget what's happening. And then right when you feel like things are as normal as they can be you get slapped in the face again. Every three weeks it seems like I'm stressing about something new.. whether her counts are up, or when the next MRI is going to be, or how much sleep we are going to get while she's on steroids, or if her having a bad fall everyday is because of her treatment or just hoping that she is still responding to treatment.
I know we have it good. I know Ave doesn't have things as bad as some other kids that have to be in-patient for their treatment, or tons of other tests every time they go into clinic.... in fact I thank God everyday for how lucky we are that she has what she does have, but this doesn't make it ok or better for us. What two year old has had more radiation tests then some 80 year olds? Or who will be sedated almost ten times before her 3rd birthday?
I'm so sick of people trivializing what she's going through. I'm sick of hearing "oh all my kids acted like that." Or "that's probably just her personality" Or "oh you can't even tell she's losing her hair". How could anyone know what she's going through when they aren't there for every single test, needle poke, steroid pill, or poison injection??
Nothing about this is pretty. I just wish it was over.
Friday, May 3, 2013
Catch up....
I wrote this post after Ave's last treatment and never posted:
We just got home from clinic. Avery did well as she always does and we are done with her ninth treatment.
We've had a good two weeks of no chemo and no steroids. I've love being on maintenance. It's been so nice to have small breaks in between clinic visits. We have been spending a lot of time at Grandma's house and playing with cousins. And we've been taking advantage of the nice weather! We have a small park down the street from our house and Avery asks to go every. day. And then screams when we have to leave. It's been good for both of us to get some sunshine and fresh air.
I'm feeling especially emotional this week for a number of reasons... gratitude that she is responding to her treatment and is doing so well with it, overwhelming love for my little girl who has not had one word of complaint come out of her mouth, and this was the first week I've really noticed a big different in her hair loss. Her hair doesn't fall out evenly so you can only see it if you lift up the top layer of her hair in the back. I'm terrified to brush it or even wash it.
I'm becoming so much more aware of the cancer community. Cancer is everywhere. Just a few weeks ago I was at the yarn store (knitting is a new hobby I've picked up) and started casually talking with a lady who was there. Somehow we got on the subject of cancer and she told me that her son was just diagnosed. He is older and is a father of three kids. Equally as unfair. But I guess if the world was fair then a lot of things would be different... and I would've never known that we were going through the same thing by looking at her, we probably have nothing more then knitting in common and yet we had an instant connection. No mom should have to go through this. Every time Ave has to go in for chemo, or an MRI, or take a steroid pill.. I wish with all my heart that it was me doing those things. I know there is nothing I can do to change it and I'm trying to make the best of it.
We just got home from clinic. Avery did well as she always does and we are done with her ninth treatment.
We've had a good two weeks of no chemo and no steroids. I've love being on maintenance. It's been so nice to have small breaks in between clinic visits. We have been spending a lot of time at Grandma's house and playing with cousins. And we've been taking advantage of the nice weather! We have a small park down the street from our house and Avery asks to go every. day. And then screams when we have to leave. It's been good for both of us to get some sunshine and fresh air.
I'm feeling especially emotional this week for a number of reasons... gratitude that she is responding to her treatment and is doing so well with it, overwhelming love for my little girl who has not had one word of complaint come out of her mouth, and this was the first week I've really noticed a big different in her hair loss. Her hair doesn't fall out evenly so you can only see it if you lift up the top layer of her hair in the back. I'm terrified to brush it or even wash it.
I'm becoming so much more aware of the cancer community. Cancer is everywhere. Just a few weeks ago I was at the yarn store (knitting is a new hobby I've picked up) and started casually talking with a lady who was there. Somehow we got on the subject of cancer and she told me that her son was just diagnosed. He is older and is a father of three kids. Equally as unfair. But I guess if the world was fair then a lot of things would be different... and I would've never known that we were going through the same thing by looking at her, we probably have nothing more then knitting in common and yet we had an instant connection. No mom should have to go through this. Every time Ave has to go in for chemo, or an MRI, or take a steroid pill.. I wish with all my heart that it was me doing those things. I know there is nothing I can do to change it and I'm trying to make the best of it.
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