For Uncle Stu

I was chastised by my uncle the other day as I have not written a blog post in many moons. It's true. I haven't been in the mindset to write as everything has been kind of boring around here. Eleanor is switching on more and more as each day passes. She is comfortably cruising and getting more adventurous with her movements. She attempts to pull herself up on things that seem impossible (the hinge of a closed door? A knee-height toy?) and is being met with moderate amounts of success. She has excellent stamina now. She used to tire so quickly when we would practice standing or crawl around the room, but now she could go all day. Well, at least until her next nap! Her sleep is much improved, thanks to some med tweaking, late-night snackies and pushing her bedtime a little later. She sleeps 10 hours overnight (7pm-5am) and still naps twice a day, but sometimes skips her morning nap and does two hours in the afternoon. It all seems very normal, very boring.

Her last visit to the oncology clinic revealed that her Mitotane (adrenal suppressant/chemo-type pill) levels are astronomically high. She should sit between 14-20 on their measurement scale (I think it is ppl) and her last three blood draws put her at 33-38, which is considered highly toxic and very dangerous. Her oncologists agree that these blood draws cannot be accurate as she would have severe cognitive impairment if her levels were indeed this high. So we are just shooting from the hip and keeping her dose the same and hoping for the best. It seems to be all one can do with cancer.

I have a heavy heart this morning as I have learned of two new relapses - one of them dire, the other still undetermined. It seems that all the kids we knew at BCCH have suffered relapses. I can think of two others who have not (yet) been affected since finishing treatment, and a good 7-10 that have. It's really, really hard. I know that spending seven months on the ward meant that we would see the sickest of the sick, and that there are lots of kids who have cancer that are doing great, but it's hard when the only ones you know are suffering or dying. It brings on the inevitable question of "when is it our turn?" I am on a support board for people with adrenal cancer and a whole bunch of them have passed away in the last three months. 99% of them are adults and most of them courageously fought for many years as this is a cancer that is slow-to-grow, but I have hard time hearing this.

...I don't want to think about this anymore today. It's only 9am and I can't spend my day sobbing. Eleanor gets freaked out, and does a weird laugh/cry when I do and I don't like it.

So here are some cute photos from the last few weeks!

Crankasaurus Rex after her swim

Early morning shenanigans

Late night snuggles

Daddy-Daughter time

Halloween!

Sleeping angel.