One day Anni was twirling and singing one of her original compositions.
"It's my gift!" she declared.
Dizzy, she fell with spectacular gracelessness.
Laying on her back on the tile floor she began flapping her arms and legs
as if she were making a snow angel.
"Falling down is also a gift!" says she.

Monday, March 27, 2006

lots of blinking

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 right now." 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 song. 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. warm fuzzy

41 Comments:

Blogger Amanda M said...

The first part....ah, my stomach drops and drops and drops...and then yes, I'd love a Frankie hug...such ups and downs and love all around.

The thought that comforts me is that Annika has been such a fighter and pulled through such tough situations again and again.
Dancing on a cliff for sure, but dancing.

I know that you're super devoted to your docs with excellent reason, but is a second opinion an option?

Hugs, hugs, hugs.

I'm so sorry the docs had scary things to say. :(

3/27/2006 10:59 PM  
Blogger Rowan said...

Nervous, but not pessimistic. That's something.

I would be far beyond blinking. But I'm a big crybaby.

You are in my thoughts every day. I can only hope for the very best of possibilities.

Good for Jorg with the Tenure. Shame about the casseroles. Again, I can only hope for the best. ;-)

The Michael Moore thing sounds more interesting all the time.

And finally, the hugs look wonderful. Truly one of the joys of parenthood.

3/27/2006 11:23 PM  
Blogger Jenevieve said...

You are so right about the casseroles. My husband called my baked spaghetti "spaghetti casserole", but I quickly corrected him along your lines.

Um, I'm sorry about the scary words with the doctors. Geez.

At least you have Frankie there to give you as many hugs as you gan get!

3/28/2006 12:11 AM  
Anonymous Beanie Baby said...

That is a beautiful photo. Frankie is a gorgeous girl.

I think will can do amazing things--and Anni doesn't have just her own going for her, but hundreds of people in the computer.

To Moreena's Readers:

On Beanie Baby today (the link is in my name) I will post details about how you can get a .pdf file for a brochure/poster of the Peter Rabbit raffle. This is for helping to sell tickets offline--if you are nervous about mentioning the blogs to your real-life circle, you can hand out a brochure or put up a poster!

3/28/2006 6:40 AM  
Anonymous Mary Lee said...

We have been in a few meetings like yours; allowed myself to feel "nervous" for a lttle while, then, shook it off, and held firmly to the belief that "she" will be the "one" to defy their odds. Annika is definitely that "one".

Re the local ER transfusions, please have your Chicago doctors establish the protocol for transfusing -, ie. IV size, amount of blood and infusion time. Don't just assume that any hospital can do it correctly.

Mary Lee

3/28/2006 7:46 AM  
Anonymous Anonymous said...

Oh Moreena. The will is an amazing thing, Anni's in particular. I have so much to say and so little that can be captured in language here--a thing you do so beautifully, capturing in language. If you are wolloped today with the psychic equivalent of heat in your face from opening an oven door, it's just us here, thinking about you guys.

xo

3/28/2006 8:18 AM  
Blogger Moreena said...

Amanda - Well, the problem with a 2nd opinion is this: the only question for another doctor would be whether or not there is something surgically to be done about the clot that is causing her problems. But we've done enough reading to know that they've tried the best options to surgically fix this problem. And, really, we have no interest in subjecting her to another major surgery, which she might not survive and would likely only be a temporary measure to hold off re-transplant. So even if someone else suggested another option, I'm not too sure if we'd be interested in pursuing it.

The second question, I suppose, is whether another surgeon would be willing to re-transplant sooner. If Annika were re-transplanted and everything goes well, she could be healthy for a long time to come. *But* we really do believe Dr. Superina when he says that another transplant would be even more dangerous for her right now than just waiting and hoping. I think we would be way too scared to put our trust in another surgeon, one who has never been inside her, at this point.

3/28/2006 8:56 AM  
Blogger Moreena said...

Oh, and I should add...

Jörg and I came out of the conversation with an entirely different feeling about it all. Jörg turned to me and said, "So! Do you feel happy about those answers?" He sounded kind of happy himself, but I wasn't sure if he meant maybe "happy you got all your questions answered satisfactorily." I certainly wasn't going to reply, "Sure! I'm happy the doctor said she's nervous about Annika dying!" because I really am trying to curb my sarcasm, since I know that it is annoying and unpleasant.

I think maybe Jörg really did feel that Dr. Alonso was much more upbeat about Anni's prognosis than I did. I'm not sure if maybe it was because he had a much bleaker outlook coming into the discussion or maybe we just hear things completely differently.

3/28/2006 9:00 AM  
Blogger corndog said...

I'm still furiously blinking over here, and finding some fierce hope in Annika's amazing buoyancy. And also thankful for your amazing writing.

I think the citizenship casserole requirement might be waived for Jörg if he goes to a baseball game and eats a hot dog and some Cracker Jack. And washes it all down with some warm, crappy America beer.

3/28/2006 9:05 AM  
Blogger Phantom Scribbler said...

Blinking a lot here.

I'm with Jörg -- lasagna is totally a casserole.

3/28/2006 9:56 AM  
Anonymous Anonymous said...

Just some HUGs and prayers for you guys. What a lot to think about and try to keep upbeat. Praying for sunny days and hugs and many good friends.

3/28/2006 9:57 AM  
Anonymous Mary Lee said...

Have you heard of a handheld machine called a hemocue? Unfortunately, it is not approved for home use, but our doctor was exploring the possibility of obtaining one for us to use just before Nora's surgery, our insurance company had agreed to purchase it.
It reads hemoglobin level immediately similar to the way a diabetic checks their sugar level.
They are having a demonstration at the National Kidney Foundation in Chicago in April. Their website is www.hemocue.com/hemocueus/
Might be worth checking out.

3/28/2006 9:57 AM  
Blogger Yankee T said...

All this blinking is good for my contacts, I just know it. You have a serious fighter on your hands there, Moreena, so go with the "nervous, not pessimistic" view. I wish I could help. Great love to the four of you, and yeah...sign me up for a Frankie hug.

3/28/2006 10:04 AM  
Blogger Rev Dr Mom said...

Oh, Moreena, I'm blinking here, too. Anni remains in my prayers.

A friend of mine became a citizen last spring....lots of hoops to jump through, but you can have some fun helping him study for the test :) LOts of obscure facts to remember!

3/28/2006 11:45 AM  
Anonymous Heather said...

I read your blog, but havent been able to as of late due to our own daughters emergency in January. I am so sorry to read what you are going thru, we are going thru something similar at the moment. Emma needs a second heart transplant, but the doctors are also wavering. I understand where you are coming from, and also wish I could say something to help you feel better.

There rarely is nothing to say. Just know that you and your daughter are in my thoughts and prayers. I will continue to follow her journey, and wish your family the very best.

-H

3/28/2006 12:22 PM  
Blogger elswhere said...

I loved that New Yorker piece.

Just wanted to tell you, too--Mermaid Girl happened to be noodling around my computer several weeks ago, when I was watching the video you posted of Annika in the hospital thanking your friend for the concert. We talked about Annika, and about what a liver is, and about how she'd had to be in the hospital for a long time.

I'm not big on saying I'll pray for people, or even on doing that regularly, but now every night when we say shema (evening prayers) and think for a minute about people who are sick, she always mentions Annika even if I don't, and even sometimes stops fiddling with her gazillions of in-the-bed toys for a minute to really concentrate.

And MG is very *very* willful.

I know will--their own, or other people's--can't keep someone alive all by itself. But if anyone has enough people pushing for her, sending out their thoughts and hopes and stubbornness and determination, to make a difference--it's your girl.

Blinking over here, too.

3/28/2006 3:28 PM  
Anonymous Sheryl, Justice's mom said...

Moreena, all I have is a big sigh. I'm so sorry that you're still dealing with so much unknown. We will pray for medically unexplainable healing in Anni. We've known our share of miracle children....

As for Jorg and the casseroles, I had to giggle when I read it because my first thought was that a casserole cookbook fundraiser for Anni could be fun!

Hugs to you all...

3/28/2006 3:32 PM  
Anonymous Anni Metz said...

Frankie's hair has gotten so LONG!!

3/28/2006 4:11 PM  
Blogger susan said...

Blinking here, too, and just feeling my body go up, and down, reading through this post.

Curious Girl said to me yesterday, "mama, do you miss Annika?" and I said, "well, I can read about her on her mama's blog." "I miss Annika," she said, and so we went back to look at pictures. She, like Mermaid Girl, feels a connection to Annika through the pictures on the blog. I so wish that all the connections Annika has made were of more use in helping her not bleed.

You're in my thoughts, daily.

3/28/2006 4:17 PM  
Blogger liz said...

Muffin Man likes to check in with Annika's pictures too.

Big hugs and continuing prayers.

3/28/2006 4:42 PM  
Anonymous Amy said...

I've tried to come up with something profound to say, but I am at a loss for words as I sit here pondering the pathways of Carly's new journey that lies ahead and all the while thinking to myself how selfish that is of me because you've already climbed mountains. Thinking of you. Annika is surely in my heart.

3/28/2006 10:25 PM  
Anonymous Anonymous said...

Moreena,Anni and you all are in my thoughts.
Hugs,
Hannah

3/29/2006 1:09 AM  
Blogger Chana said...

My heart goes out to you and your family. This Canadian family thinks of you often and loves you even though we are strangers...Your little angel sounds like a fighter and she is filled with love from a world of strangers and family. May God's Blessings be with you. (The picture is precious, love at it's purest :) ).

3/29/2006 3:57 AM  
Blogger purple_kangaroo said...

Oh, Moreena. I am praying for you and your family. Annika is so strong in spirit that's got to make up for some of the issues with her body.

3/29/2006 4:57 AM  
Anonymous Kim Faust, mom to Sami and Kyle said...

It sounds like you had a very emotionally difficult conversation with Dr. Alonso....sometimes I can't decided if knowledge/ frankness is good or bad. I do think Anni is a fighter - look what she has already been through and how amazed they are at how well she has recovered! I am keeping Annika and your whole family in my prayers. I pray that the bleeding preferably stops or stays under control, that Anni gets her needed new liver and that she goes on to a long, happy, healthy life - wowing all of us with her spirit and zest for life. Sending you big hugs!

3/29/2006 6:11 AM  
Blogger angela marie said...

You wanna know, but you don't want to really hear it all. I wish the things the doctor had said could have been all lilacs and daisies, but your little girl has shown us all how she can confound the medical community. She'll do it again.

3/29/2006 8:27 AM  
Blogger Michelle said...

I know that Becca and Jason just love Dr. Superina so I'm sure he is doing what he thinks is right and best for Annika.

Riley goes to school with my son, Davin, and those girls are just adorable! I think that whenever things get bad, Frankie should be hired to just give out hugs. What an adorable picture!

3/29/2006 9:36 AM  
Blogger halloweenlover said...

Blinking here too. But maybe what Jörg figured is that doctors are often pessimistic, and nervous for this doctor is nothing serious. I'll be over here hoping that is the case.

I'll take a frankie hug too! Your girls are so beautiful.

3/29/2006 11:24 AM  
Blogger Liesl said...

I agree with the others - nervous is OK. It just means they want to keep an eye on things.

All four of you have such a wonderful spirit, and that's why Annika is such a fighter :)

And yay for bunnies, spring, and happy little girls!

3/29/2006 8:42 PM  
Anonymous Marisa said...

Moreena, I know nothing can help ease or rest your mind right now but wanted to tell you about a little boy I know. He has had 3 liver transplants. All I know is that he had bleeding trouble and the 3rd transplant turned out to be the charm and as far as I know he's been doing great...I think for at least 5 yrs now. I do not know if his circumstances were similar to Anni's or not. Just thought I would try and pass along a littel HOPE! HUGS

3/29/2006 9:53 PM  
Anonymous Anonymous said...

Over here in Shickshinny,Pa USA we pray to a wonderful Saint named St. Jude Thaddeus. He has been very good to us when things weren't going so well. I've been praying to him every night for you, Annika, Frankie and Jorg. I believe in Annika and her strong will and I believe with all my heart and soul that she will conquer this. Children are amazing and never cease to astound me. They do not know the world like we do--it's a special gift that they possess. They are untainted and this I believe helps them in achieving great things--like miracles. Love, hugs and kisses to you. Susan

3/29/2006 11:01 PM  
Anonymous Robyn, Emma's mom said...

Thinking of you...

3/30/2006 7:38 AM  
Anonymous Becca - Natalie's mommy said...

Um...yeah...I need a Frankie hug. They're just so addicting...much love to the girls.

Oh and I loved the part about Joan and her shoes - I thought that I was the only one that noticed such things.

As always you and Anni are in my prayers.

3/30/2006 10:16 AM  
Anonymous Mary Owen said...

I am still following, still praying, and blinking a lot.
Love to all,
Mary

3/30/2006 11:11 AM  
Anonymous Renee' said...

Praying & Crying with you guys....

3/30/2006 1:33 PM  
Blogger Mike said...

I'm glad, at least, that Annika's doctors are talking to you honestly, with respect and kindness. All too often I've seen the "well, you wouldn't really understand this" attitude from doctors.

I'm with Jorg, though, in thinking that it may be a good sign that the doctors are nervous, but not pessimistic.

On Will and Death, I don't know if it works long term, but I sat vigil with a dying friend back in my 20s, and he hung on for days longer than anyone expected, and of all the times to go, he died during the one stretch of time in which the room was almost empty, and those who were there were sleeping. It was almost as though he was waiting for a little privacy.

And I've heard enough stories from friends and family of people holding on until someone special gets to say goodbye to wonder if Will doesn't play at least some role in the process.

I guess we won't really know until it's too late.

3/31/2006 2:24 PM  
Anonymous Cheryl and Angel Haley said...

Moreena,
Those conversations leave you asking yourself "Did he/she really say what I thought he/she said". You question what you heard, play it over and over in your mind...and then live with that ever present fear in the pit of your stomach.
How I wish I could change that for you.
Haley's situation was very different and more bleak with the brain bleed and then her lungs developing hepatopulmonary syndrome. So, please don't think I am comparing.
I just know what you are feeling, and I hurt for you.
Please let me know if there is ever anything I can do.

4/01/2006 9:09 AM  
Blogger jo(e) said...

(o)

4/01/2006 1:53 PM  
Anonymous Anonymous said...

Hope you are all o.K., even with this last talk to your doctor still waying heavily on your shoulders.

4/04/2006 2:10 AM  
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