Sick?

First of all, let me say thank you for all your kind words and emails. I'm so touched at how many of you shared similar stories and offered to help. I am slowly trying to respond to all of them! I am starting to feel a little bit better, thanks to a fabulous weekend with old friends and family and a 17km run...

But.

A little stressed about Eleanor at the moment. The irritability and tiredness and decreased appetite continue to plague us and are now accompanied by terrible reflux and some vomitting. These are all side effects of Mitotane, but she has never really exhibited them before. Her dose might be catching up with her and it might be bordering on toxic. Or it could be her steroid. Either way, I don't think she is "sick", she is just unwell from her medications. It's very troubling because it's all a crapshoot. There are very few studies of toddlers on these drugs, so we would just have to play around with them to see what helps and what hinders. We are going out to see endocrine today and popping into oncology for some blood work so I will be dropping a million questions on both.

It's very frustrating to have an almost-well child. In so many ways she she seems completely normal, and then we have a couple of weeks of trying times and everything seems awful. I hate it. I feel like an ingrate. We are so lucky to be where we are. Like, horseshoes are falling out our bums-lucky. We have been graced with a tiny window of relative normalcy and I bristle at any bump in the road, like I deserve better. It's pretty pathetic. Really, I hate not knowing the answer to the problem, and the pediatrician I spoke to yesterday offered zero insight and zero reassurance. I am afraid I will find similar dead-ends today.

Why couldn't she have gotten leukemia like a NORMAL child?!?!? Why does she have to be SO COMPLICATED ALL THE TIME?!?!

Bah.

I know leukemia is awful (especially for boys) and I'm not trying to belittle it. I'm just jealous. The cure rate is so high and the funding so ample and I want that for my cranky baby. Instead we get the weird cancer that nobody seems to know much about with only one course of treatment.

Bah.

So to warm the cockles of my black and bitter heart, here is a photo of the Els & Bea Dynamic Duo doing a duet.

Awwwww....