The Worst Blog Post Ever

Dear friends (because that is what so many of you have become to me, and to my family, over these last 5 years),

This is the hardest blog post I’ve ever had to write, and I debated whether or not to write it at all. Partly because I didn’t know if it’s just too much to expose about our family and the struggle ahead of us. And partly because writing it somehow makes it more real, and I don’t want it to be real.

But sharing our family’s story with you has become a big part of our life over the past few years, and I feel like sharing this latest development will help us out – knowing you’re out there thinking of us and sending your prayers and good thoughts our way.

So, here’s the deal: Clio has leukemia in some form or another. I am tearing up as I write this, because it’s so horrible, and so unthinkable. But it’s true.

Over the past six to eight weeks she’s had some odd symptoms – pain in her legs, recurrent fevers, complaining of a belly ache, few other little things – that we weren’t able to pinpoint. I of course ran to Dr. Google and had already diagnosed her with leukemia myself.  (Because isn’t that what we all do in the Internet age? Look online and find the WORST POSSIBLE THING it could be?)

But when blood tests were run just 3 weeks ago, there was nothing alarming; it just looked like maybe she had a virus. And I was relieved and felt silly for worrying. Still, we were going to see a rheumatologist in case there was something arthritic happening.

But yesterday (god, was it just yesterday?) she had a high fever and I brought her to the ER at the hospital affiliated with our pediatrician. They ran a number of tests (bad news in the bloodwork) and immediately transferred us here, to Floating Hospital For Children in Boston. Tomorrow they’ll do a bone marrow biopsy and lumbar puncture (under general anesthesia) and also use the opportunity to get some chemo into her.

Over the next couple of days, we’ll get the results to tell us what kind of cells we’re dealing with and what treatments we’ll go forward with.

To say that Alastair and I are terrified / distraught / overwhelmed / in shock is the ultimate understatement. I think of myself as a strong person, but I don’t feel very strong right now. A few days ago Clio was her happy usual self –- a little tired, when the fevers hit, and a little gimpy, with her sore legs. And now, here we are in hospital land. It is an awful place to be.

She’s feeling OK – just dehydrated and tired, since they have to keep waking her up to check vitals. Occasionally she’s perked up. But this is hard for her, of course. She’s had to put up with all manner of poking and prodding and drinking yucky stuff. And Clio is, God love her, one stubborn, spirited little thing.

Elsa was by to visit this afternoon with Alastair’s parents. (Who have already been a Godsend.) It’s hard for her to really understand what’s happening and we’ve only explained it in broad strokes. She was mostly just excited by the novelty of getting to eat out all the time and then being in a hospital and all the equipment and gadgets and stuff. She also thought it was super cool to find out that your bones make blood. Ain’t it, though?

We’ll try to make things as normal as we can for her – keep her going to camp, still start the tap dance classes she’s so excited for. They just gave us a book called “Oliver’s Story – For ‘sibs’ of kids with cancer.” It made me cry. Everything makes me cry.

I hope once we get a bit more information about the kinds of cells, the type of treatment, etc. I can buck up a bit and be all brave and determined and courageous and all that shit.

I don’t know how often or how much more I’ll be writing over on Baby Squared in the coming months. I will, though, probably post updates on my new Facebook Page on Twitter and here. I also ask that unless you’re a close personal friend you don’t email me. But know that I read every single comment here, and anything you write on my Facebook page wall or via Twitter.

Your prayers and thoughts and hopes for us would be a great, great comfort. Please no medical advice or scary stories.

With so much love and gratitude to you all for being “out there” for us.

xoxo

Jane (and Alastair)