Wonderful Doctors & Nurses

Note: This is the second update I made to Addison's CarePages site. She had been diagnosed with Acute Myeloid Leukemia three days prior and we were quickly becoming versed in hospital lingo. Even today I am still in awe of the lengths the doctors and nurses in the ICU at Children's Hospital went to, to save our sweet girl. At the time I wrote that I "only tend to focus on the good." I need to do that a little bit more now. There is good in my life. Every day, in fact. It just isn't as good without her.

Posted Mar 23, 2012 12:42pm

Scott and I had the opportunity to sit in on formal rounds this morning. We are constantly amazed at the sense of teamwork at this hospital. These doctors and nurses are true problem solvers who work together for the greatest good of the patient and we are so thankful for that. Since yesterday they located a special bed that allows Addison to be elevated. This helps with the blood flow issues to her legs. But before they located the bed, they tossed around different options to help her, one of which was finding three extra mattresses from around the hospital to help get her further off the ground. Luckily we didn't have to do that because the bed came in time. Still, their ingenious efforts are at work. In order for the ventilator to work properly, it also had to be elevated. So today I look at a ventilator resting atop a child's table (stolen from some corner of the hospital, no doubt). Problem solvers, I tell ya.

So about what they said (and I only tend to focus on the good):

Good news: Her white blood cell count has gone from 200,000 to 89,000. That means the chemo is working. Her lactate (sp?) has dropped from 20 to 3.something. A normal level is 2.5, I believe. So that's good.

Not so good news: We still have to keep an eye on the leg that is hooked up to bypass. It has swelled quite a bit and there's concern about proper blood flow. However, during rounds, nurses indicated that the leg had improved after they repositioned her and placed another pillow under it. So that's a move in the right direction.

Messages to My Baby

Note: This is the first update I made to Addison's CarePages site. It was three days after she was diagnosed with cancer. By now we were in ICU. Doctors had worked hours upon hours to save her and she was alive. A day earlier a doctor had told us she would die. We never saw that doctor again. And on this day we were certain we would prove him wrong. 

Posted Mar 23, 2012 7:11am

"Goodbye, Addie. I love you."

"Love you too."

A simple exchange that happens between Addie and I every morning before school.

Good night, Goosie. I love you."

"Love you too, mom."

A night-time ritual between mother and daughter.

While miles of memories have run through my mind these past few days, it is the daily, every day exchanges that I keep coming back to. Addie has known love and shown love in her nine (almost 10) years. That continues through this challenge. When things were at their worst yesterday, I read 60 cards from her fourth-grade classmates. Why? To show her how much she's loved. I read messages off facebook from friends, family, and people we barely even know. Why? To show her how much she's loved. I surrounded her with various stuffed animals sent from friends and family both near and far. Why? To show her how much she's loved. I passed on the fact that various prayer chains had been activated and that literally thousands of people are pulling and praying for her. Why? To show her how much she's loved.

And so, the conversations continue. Why? I think you know the answer by now. But here's one more reason. One of my aunts relayed a story of a family friend who is an oncology nurse. Of course that's interesting given our current situation. But here's what really caught our attention. When she was 9 years old, this oncology nurse underwent cancer treatments just like Addie. While she too was sedated in the hopes of helping her to forget this trauma, she can recall the messages from loved ones. So our messages continue.

Please keep those messages and the prayers coming. They are absolutely appreciated.

Jamie

A Sacred Space

I've decided to move all of Addison's CarePages entries over to the blog. I'm not sure why really. I guess I feel like I need to have it all together. Safe.

Come to think of it, I'm not sure why I referred to Addie as Addison, her given name, in Paragraph 1. I do that from time to time. When she was here she was Addison to everyone else. Addie to us. Now that she is gone, and we've invited everyone in - through blog entries, through charity runs, through everyday conversation on the street - you've come to know her (and love her, I hope). So, you call her Addie too. And that's fine. In fact, nothing pleases me more than to hear from people who say, "I didn't know Addie, but I feel like I do."

But every once in awhile, I call her Addison. I guess I need to be different every so often. To remind myself that she is mine.

So, I'm asking for extra thoughts as I retrace my steps.

I'm entering a sacred space.

The Last Photo

It's a simple photo, snapped on an unseasonably warm day. March 14 to be exact. On that day - a Wednesday - Scott and Addie and two neighbor kids took advantage of 75-degree temps and tossed the ball around. Took turns hitting it. And just generally enjoyed this gift of a day.

Isaac and Tripp spent the afternoon circling the driveway once, twice, three times on their Cozy Coupes. I spent the afternoon on the World Wide Web, reeling from the results of a positive pregnancy test and introducing myself to an online group of women who were also expecting their fourth child in November. I could have gotten sucked in to all that (let's face it, I probably did) but I could hear the squeals of laughter outside, so I set the laptop aside, grabbed the camera, and I went outside too.

And I took three photos.

Within hours of capturing this moment I sat with Addie in the emergency room at St. Elizabeth's Hospital listening to a doctor tell us this spike in temperature, this pain in her chest, was nothing more than a viral infection and the only thing to do was go home, wait it out, follow up with a doctor two days later. We followed doctor's orders to a T. We waited. We followed up. We took a second doctor's word. Just give it some time, he said. And 12 days later - twelve. days. later. - she was gone.

And I still can't believe it.

But this post isn't about the events that unfolded over the course of those 12 days (which, believe me, I could go on and on and on about and have, trying to make sense of it all). It isn't about how a perfectly healthy girl - healthy enough to toss around a softball on this day and healthy enough to go on a two-mile bike ride the day before that - had the life shaken right out of her.

It isn't about any of that.

It's about a photograph. This photograph.

I had no idea it would be the last photograph.

If I did, would I have composed it differently? Certainly I would have tried to capture her face. I've spent three years going over the details of that face - the spray of freckles across her nose, the way her teeth stairstepped into a smile, the eyebrows that arched perfectly across her brow. I've committed it all to memory so I will never forget.

And the photo I have - the last photo - doesn't even show that beautiful face.

Because never in a million years could I have dreamed it would be my last.

I counted on so many more.

Her birthday was two weeks away. So was the field trip to the state capital and I was slated to go. I'd submitted my sub request and everything. We were making plans. Surely I would have snapped a photo of Addie and her friends in the Rotunda. And a few days later, a pic of those same friends with Addie front and center snuggled up in sleeping bags for a slumber party on our family room floor.

I'd counted on concerts and pictures of Addie in front of the fireplace, all dressed up and ready to go. I'd look at those photographs years from now, in awe of the little girl she once was and the beautiful woman she'd become. I'd wonder where the time went.

I'd counted on team photos. Twelve girls lined up after a basketball game or volleyball game or softball game. Any game.

I'd counted on vacation pictures. Our family of six lined up in front of the Disney castle. On top of a mountain. At the beach.

I'd counted on first day of school pictures. First day of fifth grade. Sixth. And now, seventh.

I'd counted on selfies. Yes, selfies. A tween mugging for the camera, holding up a peace sign. Pictures where I'd flip through her phone or Instagram page and say, "seriously?" But there is no phone. No Instagram. And sadly, no selfies.

Seriously?

I'd counted on so much.

But never, never this.

You've Run Ahead

You are there and I am here and I don't even know where there is.

What it is.

If it's a place at all.

But there are days when I know here and there surely must intersect.

Because I feel it. Know it. Believe it. 

And still it doesn't seem to be enough.

Because you are there and I am here.

I'll Try Thanksgiving

I didn't cook my first turkey until I was 35 years old.

Hard to believe, isn't it?

Not if you live in our house.

For 35 years I'd done a pretty good job flying under the radar, bringing the green bean casserole and similar side dishes.

But then I decided to host Thanksgiving and pretend I was all grown up.

This involved getting up at 6 a.m. to prepare the bird (one word: gross).

Since this was such a momentous occasion, I convinced my mom (or maybe it was Scott?) to document it on videotape. I could tell you exactly who was behind the camera if I'd take the time to watch the tape. But, I've been off family videos for about a year now. When you're trying to hold it together for the rest of your family, function at work, and convince yourself you can do this, you do everything you can to keep up the facade. And right now that means not watching family videos. At some point I will. When I can schedule in time to fall into a puddle of tears on the floor and not come out of the house for a few days.

Anyway, back to Thanksgiving 2011.

I'm preparing the bird and Addie stumbles out of her room (it's 6 a.m. remember). She takes a look at the turkey, faces the camera and deadpans, "So I guess mom cooks now."

And I guess I don't need a videotape to remember that moment.

That's one memory fixed firmly in my mind.

I relive it often. And it makes me smile.

Laugh.

Cry.

And double over in pain.

That was the first time I cooked a turkey.

And, the last.

Thanksgiving hasn't been all that great the last two years.

Year one was a complete disaster.

I was one week postpartum and eight months out from losing Addie. I wanted nothing to do with Thanksgiving. My family was fractured.

But my mom showed up with something called a turkey loaf (because that's what moms do). She cooked it up, plus a handful of other Thanksgiving side dishes, all the while taking care of Landry and taking care of me. God. Bless. That. Woman.

The timer went off, dinner was served. I took my spot at the table and tears fell right onto the turkey loaf. This was the first time we'd sat at the table as a family without Addie.

We haven't sat down as a family since.

Year two was a bit softer. We went to my mom and dad's house, a house Addie never set foot into, which somehow makes things easier as there isn't a memory lurking around every corner. We had real turkey. It was nice, uneventful.

Now we're on year three.

And I'm trying. Really, I am.

That's the important thing, right?

I bought a turkey. A teeny-tiny 6 pound bird, but a turkey nonetheless. I bought stuffing. And a box of instant potatoes. Corn. A spice cake mix.

I know, I know. It sounds like Thanksgiving out of a box.

But this is progress.

For me.

And then I got sick. Pre-Thanksgiving diet sick.

Perhaps that was a sign.

Thanksgiving was not to be this year.

But I'd started thawing the turkey two days ago.

Aaaaand, it was still frozen as of 9 p.m. last night.

Perhaps another sign?

The turkey's sitting in cold water now.

Guess I'm still trying.

Because that's what moms do.

They try to give their kids Thanksgiving, this holiday they've been learning about at school all week. Our boys need a frame of reference, they need a story similar to the ones their classmates have at school.

So, I try even though Thanksgiving at our house is nothing like Thanksgiving at theirs.

I'll give them Thanksgiving.

And I'll keep saying it over and over and over again.

So I guess mom cooks now.

Wrong

If everything was right in my world, there would be 12-year-old girl asleep in my basement.

She'd be impossible to wake up in the morning, what with the activities and homework and hormones and all.

There'd be blinds on the window of her bedroom and various beauty products scattered across the top of her bathroom counter. There'd be uniforms to wash, math homework to struggle over, and friends moving in and out of her circle and back in again.

If everything was right in our world, we'd be prepping for our first junior high dance, laying out potential outfits and experimenting with hairstyles, all the while pretending not to care about impressing anyone.

Instead, Scott and I are desperately trying to find a way to escape this weekend, to wrap ourselves in some sort of soft cocoon that surely will protect us until it's safe to come out.

If everything was right in our world.

I've said it before: our axis shifted the day Addie died. Our world will forever be off. And my visions of a pre-teen girl sacked out in her bed stressing over homework (and, let's be honest here, seriously stressing over whether anyone will actually ask her to dance at the dance) are visions that exist only in my mind. They are what I remember from being a 12-year-old girl.

And what I wanted so much for my girl.