Dispatch from the 6th Floor

Well, we’re still here at Children’s. It will be a week tomorrow (and we’ll almost definitely still be here tomorrow). Fortunately, Clio is feeling a lot better than she was initially.

She’s coughing less, and hasn’t had a fever in 36 hours. Yesterday they let Alastair take her outside for a walk (in a wheelchair), and she spent some time out of bed, over at the window seat drawing and doing crafts. Before bed, we did some elaborate dramatic play with her stuffed animals and other items in the room. At one point we had a stuffed bear (wearing bunny ears) giving birth to Gummy Bears. And also pooping them out. It was a little weird, but I just went with it. It was nice to see her laughing.

She also had me build her a sheet tent on her bed:

Meanwhile, since I last posted, Clio tested positive for c. diff – an intestinal bacterial infection that people in hospitals frequently get when they’re on antibiotics, because the antibiotics kill the good gut bacteria that prevent this sort of thing. Because, you know, we needed one more thing.

As a result 1.) She’s going to the bathroom a lot. 2.) She doesn’t feel much like eating or drinking 3.) she has to take another antibiotic 4x a day for the next 20 days. 4.) She can’t go to school for that time either 5.) She has to stay in her room for the remainder of our stay. Which she was doing already, because of her cough. But now, even if that continues to improve, we’re stuck.

Meanwhile, everyone who comes in the room has to wear gowns and gloves and masks. (Except for us). I think we have the most precaution signs on our door of any room on the ward. Woo hoo!! We should get a Pimp-My-Door prize or something.

So, we keep ourselves occupied by attempting to scare the nurses. (Didn’t work. All of them have been completely unfazed.)

Enjoying the breathtaking (cough, cough) vista outside the window:

And going on brief field trips. Yesterday, they did a chest X-ray to make sure Clio didn’t have pneumonia. Is she the cutest X-ray patient in the world or WHAT??

Alastair and I have been switching off nights in the hospital and at home. I can’t decide which is harder. At the hospital, it’s sort of uncomfortable, and involves waking up multiple times in the middle of the night to help Clio go to the bathroom, etc. But being at home, just Elsa and me, feels lonely, and makes me sadder about the whole situation. Not just this hospitalization, but Clio’s cancer in general. On the upside, it’s good cuddle time with Elsa. I always let her sleep in our bed with me, and that feels good for both of us. Even though she hogs the pillows.

The first full day in the hospital, she visited after school. Elsa’s favorite thing to do on hospital visits is ride the bed up and down while watching TV.

I happened to be on duty the morning of my birthday, which was sort of a drag, but the nurses found out. (OK, OK, I told them, but in the context of a conversation about age w. Clio) A few minutes later, they came back singing happy birthday with a tray of cupcakes from the cafeteria and Hoodsie cups (those are little cups of ice cream, for you non-New Englanders; although these weren’t actually authentic Hoodsies). Plus a little birthday card they all signed AND a Starbucks card! (I mean, jeez, is it any wonder this is ranked the #1 pediatric hospital in the country?)

Alastair and I also got to go out together that night, because my mom agreed to come down from Maine and stay with Clio for a few hours. (THANK YOU, MOM!!) We had dinner with friends, and then went to see The Moth radio hour live at the Somerville Theater. And then I went back to Children’s to spend the night. Sigh.

Today was the first day that Clio asked if we could go home. I sure wish we could. But her ANC is stubbornly stalled at 20. From her other counts, though, they expect that to start coming up over the next few days. So…Tuesday, maybe? Please?

Meanwhile, I’m scared that none of my clients are ever going to hire me again. I had to push back several deadlines last week, drop out of one project altogether, and work at night and when Clio was sleeping and/or during my few hours at home. (Elsa has been sick, too, which has further complicated things. She has watched a LOT of TV this past week, my friends.)

And, of course, people are very understanding when you tell them you need more time because you’re in the hospital with your kid who has cancer. But I’m not an employee. I’m an independent contractor, and each project I do earns the next. I’m also responsible for about 75% of our family’s income. So I’m feeling a little anxious.

So…um…buy my books? Click on my ads?

Seriously, though, we can survive another year or so with decreased income if we must. We have savings, and friends have been generous about helping us out with gift cards, etc. I just look forward to when all of this insanity is behind us, and work, home, everything can move into a post-cancer normal.