Annika bled Monday, Tuesday, and Wednesday of last week. Thursday we brought her to see her docs in Chicago, but that was the day she finally stopped bleeding. Whew. Now we are working to set up arrangements for Annika to receive transfusions at our local ER, so that we don't have to haul her to Chicago every time her hemoglobin gets too low.
We also had asked for someone to entertain the girls elsewhere for a few minutes, so that we could ask Annika's GI some questions without worrying about Annika overhearing the conversation. It turned out that Annika's transplant coordinator, Joan of the Amazing Footwear, volunteered for the job. Talk about your expensive babysitters.
Mainly I wanted to know, honestly, what the doctors feel Annika's prognosis is. When we asked about prognosis, Dr. Alonso again began explaining that Annika is just not a good candidate for surgery right now, which was a point we already understood. But then she went on to say that it's the worst feeling when you've taken a child into surgery, and then lose them on the table, thinking that perhaps, if you'd just let them be, they could have had 4 or 6 more months of life to enjoy. Which then, of course, begs the question, is that what they think Annika's situation is? That we're just eking out months here by avoiding a dangerous surgery?
The fact of the matter is that, of all the kids we've known who have needed a transplant but been told by their doctors that they need to wait until something or other improves or changes or whatever, those children have all died within a year or so. Jörg always tries to tell me that Annika's case is different, but I'm not so sure that just because her specifics don't match up exactly to those other kids that she's necessarily in a better position.
It was pretty clear that Dr. Alonso, although she was trying to be straightforward with us (after all, we had the world's most expensive babysitter waiting for our conversation to end), wasn't exactly sure how to answer the question. She said that, if Annika were to have a major, uncontrolled bleed, that there would be very little that they could do about it. And that would be it. But, she said, maybe if something like that happened in October or sometime very close to Dr. Superina's boundary of November for transplant, they might be able to convince him to give it a shot. But there was much shrugging of shoulders as she laid out the various scenarios.
We know that there is no saying with any certainty how things will go for Annika in the next 8 months. We do know that. I suppose that I was just angling for some sort of information on her gut feeling on the matter. So finally I asked, "Well, are you nervous
about Annika?" She was nodding practically before the question was out of my mouth. "Yes. Definitely, we are nervous." I think she saw the way I started to blink very rapidly at how quickly and forcefully she had agreed with that assessment, because in the next breath she was trying to soften her words. "But there are some situations that we are pessimistic
about, when we all say to ourselves, 'This is very, very bad.' And we're not there yet with Annika. We're just nervous
We asked her, too, what she thought about sending Annika to kindergarten in the fall. When I asked this, I could almost see Annika's face, eyebrows raised in that hopeful way she has when one of us has said, "Well, go ask your dad (mom) if it's all right." Dr. Alonso said that, if Annika really wanted to go, then we should send her. "Of course," she continued, "it might be that she catches something there that leads to a massive bleed..." (a longish pause, in which we all contemplate the unsaid) "Well, then, at least she's gotten to enjoy going to kindergarten." Then she said something about palliative care
, but I was too busy blinking like mad again to follow.
It's all like the punchline of a bad joke: "The number one cause of death? Living!
" Or maybe the chorus of a Townes Van Zandt
As usual, though, everyone was impressed with how good she looks, with how well she's walking and her energy level, given all she's been through. In last week's New Yorker
Calvin Trillin contributed a beautiful piece on his late wife, Alice. (If you clicked on the palliative care link above, you might have noted that Alice Trillin was the author of an essay, Of dragons and garden peas: a cancer patient talks to doctors
, discussing her diagnosis of lung cancer.) Reading Trillin's tribute reminded me of the fantasy we cling to that perhaps will
itself is enough to thwart death. Alice Trillin calls it one of her "talismen" in her famous essay, acknowledging its irrationality, but still granting it a place in our thinking. Watching Annika run around with Frankie and Joan, it's easy to understand how powerfully hope can depend on such wispy things as will, as a laugh that seems to defy any notion of illness.
In other news, now that Jörg has been officially granted tenure, he's applying for American citizenship. I'm not sure if citizenship can be granted to someone who refuses, in general, to eat casseroles. He tried telling me that lasagna
is a casserole and he's not opposed to that, but I explained that in order to truly qualify as a "casserole," some variety of Campbell's soup must figure as a prominent ingredient.
If you're looking to celebrate Easter, but just aren't sure that the Target bunnies
are hip enough for you, check out spidercamp's Etsy shop
. She's offered to make bunnies with scars on their tummies for kids like Annika, so you know she's Good People.
And, speaking of incredibly cool bunnies, the generous, lovely, and loquacious Marla
has offered up one of her prized possessions, a 1912 edition of Peter Rabbit
for raffle on Annika's internet insurance policy raffle page
. It's a beautiful gift and Marla lovingly recounts its provenance. Wow.
Plus, Catherine Newman offers a signed copy of Waiting for Birdy
(I've been wondering if maybe Birdy might also be convinced to smash one of her beloved string cheese sticks inside the front cover for added personalization). If you're not addicted already to Catherine's Bringing Up Ben and Birdy column
, this book should certainly do the trick.
And, of course, All The Wonderful People Who Knit have contributed items, including this round's lovely scarf from Gawdessness
Jörg has received two emails from Michael Moore's staff. Evidently, one of their "this is how it should be done" cases involves a little Canadian girl who received three liver transplants with no insurance woes whatsoever. So Annika's case offers up a nice symmetry. Plus it cannot have escaped their notice that we live in a town called "Normal" and that quite a few Canadians
have taken up Annika's cause.
Finally, here's this post's gratuitous Frankie photo: a totally spontaneous, unsolicited hug for Riley during their visit last week. Really, I just happened to have my camera sitting on the coffee table in front of them. There was no "give us a hug for the camera" business involved at all. If this picture doesn't make you feel all warm and happy, then you probably need a Frankie Hug yourself.