Homework Time

Late at night. It's always late at night.
Tonight my mom flew back home to Reno, Annalise went to have a sleepover with Grandma. The last two days Madeleine gets up a little later in the morning, around 9, and she stays awake all day without a nap, crashing early and sleeping throughout the entire night. Out of character, yes; but it's as if she is fully "charging her battery" each night to live up every moment during the day. Before the tumor came out, her sleep was interrupted every night. She would cry. She was restless. She hasn't cried at all since the surgery. Not once. Coincidence....?

10/10/12

Tomorrow Jeff is coming with me. Dr Davidson will see Madeleine first to look her over, talk to us about the MRI, give us her initial thoughts on treatment, and hopefully discuss the pathology of the tumor. We want to talk to her first to lay the ground work in our own minds about what radiation means for Madeleine. In the afternoon we will meet with Dr Selch, the neuro-radiology oncologist for our first consultation. I've already told our hem/onc team that I want to know everything: what are all the options and why it is or is not a good option for Madeleine. I probably won't be able to sleep. I've been researching the different types of radiation I know other kids have received. But every story, every kid is different. There isn't anyone who knows Madeleine's story better than me and Jeff; I'm never going to know all the intricacies of those children's treatments and conditions, so there's absolutely no way to compare- just to get educated.

One of the hardest parts of this disease is that there is NO ONE WAY. Every single decision we make is a luck of the draw. There is NOTHING that proves whatever choice we make will be the right one.
Let that sink in for a minute....
Every parent we have come across with an ATRT child thinks they are making the best decision for their child. We are all the same. But our children are not. A little newly diagnosed baby just passed away this week; her parents were trying to avoid steroids and chemo because of side effects. Another child has been fighting unrelenting for almost 18 months. Her tumors- yes, plural- grow ridiculously fast; for some reason, her treatment isn't working. It. Isn't. Working!? I pray for that little girl; she's starting to give up. She's 4 years old. I write about this because these are my thoughts; it upsets me when people close to me don't freakin get it- they act like nothing is happening, like Madeleine's illness is not real. It hurts, so bad. the worst part- they don't get it. Just because my life has stopped and turned upside down, that doesn't mean yours does. I understand that. It still hurts.

Stitches 10/10/12

Madeleine is healing better than expected, slowly and surely. Each day we have seen progress. She really hated the hospital; she knew it wasn't home, she was not in her bed, the nurses had to keep bugging her. Once she came home on Monday, she slept most of the day and all night, catching up. Tuesday she was closer and closer to the baby we had Thursday before the surgery. Each day she is talking a little bit more, she wants to play on the floor, walk around holding your fingers, look at her books. She has now really learned to get around in her walker so she's getting into a little bit of trouble getting into things but it's pleasant and I chuckle a little taking things away from her or watching her reach into her diaper bag and pull out her toys. Her dressing began coming off with all of her moving around and it looks really, really good. These stitches look better than the previous surgeries.
We are only 6 days post-op, so we don't have extremely high expectations of her getting back to the baby she was, although we hope it's sooner than later.