Ah, deja vu, my old friend, nice to see you again. Wait though: isn’t deja vu meant to be a brain malfunction so you just think you are experiencing the same thing again?
Whatever. I’ve been here before but this is worse than the first time, and it is actually happening, so no wonder it feels so fucking familiar.
Tomorrow I fly out to Canada. I leave in the evening and I will be 27 hours in transit. My daughter’s surgeons can’t wait that long. She needs an operation right here (right there), right now, and I’m perfectly ok with that.
She has had her gastric specialist come by, and the guy that cuts. I wasn’t there but I am so lucky that the man I married has all of his family living in the emergency hospital city that my daughter was brought to (yet again); they were there and they saw the surgeon and they saw the specialist and their support enabled my girl to ask the hard questions and delve into statistics.
(Can I take a moment here to feel so proud that my daughter even bothered, given how ill she is? The surgeon said afterwards that he was so impressed about her grilling of him as to technique, side effects and success rates.)
She is really, really ill. I have been awake for what seems like the past 90 days, soothing her via online chat or phone or email,where I could. I’ve been reassuring her, trying to dissuade her from bad thoughts.
Her body is shutting down. The main mechanism used to excrete toxins doesn’t work anymore. She is sick, she is tired; blood transfusions aren’t keeping pace any more.
The miracle biologic drug, rumoured to cost $10000 a month, (thank you socialised medical system in Canada), isn’t working. She’s had at least $50 000 worth in the last two months. Her AS and her psoriasis have never been better. But it has done jackshit for the autoimmune disease of ulcerative colitis.
They were talking about a special new drug that might help. Except that it isn’t approved by the PBS in Australia: they aren’t going to on go pay for her medical care here past visa legalities. They also don’t want to release her to a protocol less than their standard (my interpretation entirely). They really pinned a lot on her responding to ultra high IV doses of steroids.
But she didn’t.