William and Sally discussing the snake.

Having breakfast together.

Hi all – Barely seeing Sally for a couple days, I was surprised at how well she is doing as I finally got to spend some time with her today both before and after work. She woke up early this morning, and Nicole was nice enough to take care of breakfast for the boys so I could sit on the floor and play with her. She has come such a long way since last weekend when she still lacked energy from the last cycle of treatment. She was turning around and reaching for things, laughing and smiling. She became most animated when the boys got up, they hung out and played with her and she was happy as could be. At one point she started yelling to them when they left the room, William in particular, who I’ve always noticed has a special bond with her. He enjoyed showing her his new snake stuffed animal from the zoo yesterday(thanks Jillian), and she certainly enjoyed hearing him talk about it.

The cutest moment is when it was time to eat breakfast. William usually sits across the table from Sally, but when I walked in he was pushing his chair around towards her. When I asked what he was doing he replied, “I want to sit next to my sister, because I love her.” He repeated the same at dinner, so we popped Sally in her highchair next to him and they both hung out. I’ve included the picture of them sitting together at breakfast, unfortunately Sally didn’t eat her eggs.

Today was the first full day with the feeding tube. She is doing well with it, she hasn’t even really noticed that its there. She does however gag often, even when we’re not using it so is causing some discomfort in her throat. I left work early so Nicole could train me on how to use it as she will be at work tomorrow. She did it for me once, and then the next time I did it. On Wednesday, Sally will have a permanent tube that leads directly into her stomach surgically installed. This will be easier on Sally and can be hooked up to a machine that can automatically feed her overnight to ensure she’s getting enough nutrition. Wednesday, September 11th,  is also Sally’s first birthday.

Sally was also extremely playful this evening, she and I just hung out in our bed and…well…played. I haven’t seen her this happy in a month and my mind kept wandering to the old Sally before all this started, and how she was like this all the time. It was a mix of happy and sadness that is becoming a norm.

I had one of those nightmares last night that kept coming back even though I woke up a couple times. Sally and I on top of the spire of the new One World Trade Center building in NYC, where me being scared of heights was terrified while taking care of her. Thinking about it today I realized the feeding tubes and unexpected intense chemo the next two weeks must be worrying me more than I realize. Nicole and I are both worried about it, and we are also worried about the bone marrow results we expect to get back next week, as we will be each time they do it for the next two and a half years.

One day at a time Nicole and Matt, one day at a time. Please keep Sally in your thoughts and prayers.

Matt