The last couple have days have been an amazing whirlwind of people reaching out through the blog, phone, email and Facebook. Thank you so much to everyone in our network of friends and family for spreading the word about Ana to their own networks. I don’t think I’ve ever seen so much traffic to this blog in a two day time frame – not even when Ana got the call for transplant.
I would have loved to sit down today and write out Ana’s bucket list, but the truth is that she only had a couple of items on it originally, and trying to talk with her about it has proven to be incredibly painful. She does understand how serious her condition is – we all do – but it’s very hard to reconcile that she is, in fact, sick and what that means for her quality of life in the near future. It’s also a slippery slope to say outright, “You’re terminal,” because, quite frankly, I don’t believe it myself. I shouldn’t believe it because that would mean giving up hope and right now, hope is the one thing Ana’s got going for her.
Ana is brave and wicked smart but she’s also thirteen and she’s terribly embarrassed that she’s getting attention for this, for being sick. For those of you who know me and have been following this blog, it’s not news that I rarely post updates for this reason. But I felt that it was important to post another one so soon to welcome (and thank) the new people who’ve heard about Ana through various sources in my extended network.
As for news, well, we’re hoping to speak with Dr. Yamashiro (her oncologist) today and iron out a plan for Ana’s next steps. We’re probably going to go with the less invasive drug that restricts blood flow to the tumors, and then she’d get another scan in January. Also, we may try radiation on the larger tumors. The goal is to treat these tumors as noninvasively as possible in order to preserve her quality of life while we also prolong her life. The wild card is the cancer itself – how quickly will it grow now that she’s not on Jakafi? Ana was previously not open to chemotherapy at all, but now that she’s had the weekend to think about it, and we’ve talked very frankly with her about what will happen if we can’t slow these tumors down, she seems to be settling into some acceptance of having to do that.
There are no words to describe how hard this decision was for her to make – to let us give her this treatment. Chemotherapy was, hands down, the worst part of everything for her. She would rather have surgery – any kind of surgery – than chemo. This post from October 2012 is a reminder of how brave Ana has to be to even consider going this route again. It took nearly two years for her hair to reach her shoulders after falling out. And, nothing has changed – chemo is still a shot in the dark.
But for now we’re hoping to put that off a little while longer. I took Ana to get her hair highlighted on Saturday which was something she’s always wanted to do (I guess you could call it a bucket list item, but I did this before all the donations started pouring in). She looks gorgeous and I’m very much hoping to get a picture of her so I can post it. Right now it’s top secret because she wants her friends to see it at school today before I start posting it all over the place.
One final update. The Health Exchange seems to have fixed the glitch that was preventing me from enrolling the girls in a new plan through Child Health Plus. I got an email from the Exchange yesterday, and I can now go in and update all the plans (the one for the girls, and the one for me and Jim). The Exchange deserves a separate post for their response to fixing this (I know I was very upset when nothing was getting done the first two weeks – but now I believe it’s because they didn’t quite get how serious my specific situation was. Ana NEEDS that health insurance). So hooray for small (and large) blessing.