Evolution of a Concept

December 25, 2006

nurse in the hospital: What did Santa bring you Eliot?

Eliot: makes confused facial expression and continues playing with the truck got that morning - just the next toy in a long list of toys he'd received over the past 8 days

December 1, 2007

Eliot's Doctor Burke: So is someone from the North Pole coming to visit you at your house soon Eliot?

Eliot: makes confused facial expression and continues playing with his favorite train at the sedation center

Sara: Oh we're lazy parents, we haven't really taught him about Santa yet.

Eliot's Doctor Lund: (whispering) Have you taught him about Christmas?

Sara: Oh yeah, he knows about Christmas, we've just been lazy on the whole Santa Clause, where Santa Clause is from, presents part.

Eliot: Is Christmas the Jesus time Mama?

Sara: (in her head) Oh shit, is it a good sign or a bad sign that all he knows about Christmas is that it has something to do with Jesus?

December 25, 2007

Sara: Someone came to visit our house last night Eliot. Do you know who it was?

Eliot: Was it Santa?

December 30, 2007 after getting a small gift for the 12 days of Christmas each morning

Eliot: Mama, I really want more cars for my train. Can you call Santa to ask him for more?

....Under the Mistletoe Last Night

This morning while playing with our new Christmas presents Aron started singing, "I saw Mommy kissing Santa Claus under the mistletoe last night." And I piped in that Daddy was kissing Santa Clause (since I was Santa Clause last night and set up the toys while Aron went to the late Christmas service). As far as I could tell the whole thing was ignored by the kids who were focused on their toys.

We called Gramma and Grampa this morning and this is what we heard on our end of the conversation:

Santa visited us.

We got trains.

Trains.

Trains and a kitchen.

We're playing with them.

Daddy kissed Santa.

We're having breakfast.

What did Naomi get for Christmas?

From Amelia

Amelia is my sister Laurie's awesome partner and has been the kids nanny for the past several months.

A year ago Laurie had just visited me in Oakland a month before and we were tortured by 1500 miles of distance. I'd just connected with you, Sara, about applying to universities in the twin cities because many of them had religious affiliations which scared me. Growing up in the Bible Belt and not being a believer made me quite nervous about these schools. Laurie mentioned you'd attended one and knew about another, so I emailed you. We'd just sort-of met, you and me. You were very helpful and reasurring and accepting, which was incredible.

I can't remember how I knew something was wrong with Eliot that day but I did. So I emailed you about how I hoped Eliot was okay. And you told Laurie you'd wait for her to tell me what was going on. Laurie called later that night. She said he had a blood transfusion and Heather seemed nervous about that treatment, and that it couldn't be good.

My only connection to the kids at this point was that I got to see Laurie's reaction when you and Nancy were pregnant. And Laurie getting to be an auntie. She was so freaking excited. She told EVERYONE. I remember Laurie scheduling her life plans around when you and Nancy had kids. I remember thinking in 2003, "I'll never get Laurie to move to CA because of those kids and those sisters." It was a bittersweet realization because I knew she was happy.

And then suddenly Laurie was back in my life last winter. I'd seen pictures of the kids and I'd emailed with you. Suddenly I had plans to MOVE to MINNESOTA. And Eliot had leukemia. I was deciding not to go into medical school. I was looking into social work. I was supporting Laurie emotionally over the phone. I remember saying to her, "you support Sara. I'll support you." Before I even met you all, I felt connected very quickly. It was a coincidental whirlwind for me and was quite meaningful.

Now that I'm here I've grown to know and adore all four of the kids. Many times after I've spent the day with Naomi and Eliot I come home to Laurie and I keep recalling funny and endearing things they both did. I tell Laurie, we laugh, we call the kids by the funny names they call each other. I ask Laurie for sibling relations advice. Little Eliot has broken my heart a few times during the heavy steroid weeks when he just feels awful. Whenever that happens I wonder, "how do Sara and Aron handle this? How in the world do they do it? How do they get up every day and face this pain?"

I'm utterly amazed by you four.

I'm so glad I'm here.

I'm grateful to now really know Eliot.

I'm comforted by this sense of family I have for the first time in ages.

Thanks, Sara.

From My Sister Laurie

Eliot was admitted to the hospital on a Monday. I had Mondays off of work then and I was returning from the ReUse center when you called. I was ever so slightly disoriented on the spaghetti highway near your house and I took a wrong turn. Instead of ending up by your house I somehow stopped in a parking lot on the bank of the Mississippi at the U of MN campus. I listened to you talk about Eliot being sick and needing a blood transfusion. You didn't know it was The Cancer just yet. I could hear in your voice that you were scared. I tried to remain calm.

As soon as I got off the phone with you I called Heather. She has worked as a nurse in the Radiology department of Children's Hospital and I wanted to ask her what on earth would cause Eliot to need a blood transfusion. Her responses weren't comforting but she didn't talk about The Cancer either.

It was later that day when you called and told me Eliot was in the hospital with The Cancer. I was having coffee with a friend who is a social worker. I'm grateful she was there with me. I remember feeling a rush to help. You had asked me to come to the hospital to relieve you and I felt like I had to get there as soon as I could. Even though there was little I could do.

From Dawn over at Kaiser Alex

I interviewed Dawn - if anyone else wants to answer the same questions - I'd love to hear your responses!

Read all of Dawn's articulate amazingness over at her blog which I love, love, love.

What do you remember the most about the past year of The Cancer?

Well, mostly I remember that we were JUST at your house for the first time over Thanksgiving weekend. We were in the early stages of getting to be friends, and I was excited that Scout had a GUY he could talk to. Specifically a NEW guy, who he hadn't known forever.

The night I found out, I was all dressed up, in black stretchy pants and a maternity shirt I was wearing for the first time. I was going to see Grease in Chan with girls from work. I missed the phone call, but actually listened to our voicemail. (I never listen to voice mail.) It was someone from the church leaving the message that Eliot had The Cancer.

Which suddenly explained why my boss had asked just that day if anything interesting was going on at church. (She's the Canon's sister and was really trying to find out if I knew or not, without being obvious or tacky.)

I had that icky sick feeling of too much adrenaline and too little ability to do a damn thing to help. So I wrote the following email:

"Just got the call from Lou Schoen at the church. Tell us how you need us - I'm home all next week - Scout's home most of the week - I am capable of cooking, and diaper changing, and whatever else you might need (that we can actually do - I'm assume "make this go away" would top your list of needs requests right now.)

...Okay, sat here and looked at the keyboard for a few minutes and tried to think of something to say that wasn't trite, complete BS or just plain stupid. Can't think of anything. This sucks, we've got your back, just tell us how best to help."

It was one of those times where I had to say something, but I ran the risk of saying the wrong thing, but I gave it a shot anyway.

The four of us were at a beginning of our friendship, and The Cancer completely changed the landscape. In the absence of The Cancer, I wonder if we would have hung out more, if we would have actually gone to church (my complete exhaustion combined with knowing you weren't going to be there took away my motivation to go. Scout's been since I've been, which is hilariously funny in it's own way.) I wonder if we would have become those cute couple friends. I wonder if The Cancer stole that from us.

Or. I wonder if The Cancer GAVE this friendship to us. If it gave Scout and I roles to play in your life, if we were supposed to be in the background helping when we could. If we put in more effort when we would have otherwise stuck our heads up the rear end of pregnancy, parenthood and moving.

What surprised you the most

I'm surprised Eliot never went in the hospital. Not because of the care he received, but because DUDE, Minnesota in the fuckin' winter time and NOT getting sick. Jump back and kiss yourself for that one.

What is the biggest question you've had about this whole crazy ass thing that you haven't asked?

eh. It's not a big question, but I'm curious what ya'll have had to do w/ vaccinations - I know you were having to postpone -

Answer to the question - yes we've had to postpone a lot of Naomi's vaccines and all of Eliot's. I'm not actually sure when we pick all of that back up again - hmmm....maybe I should figure that one out.

From My Dad

When I give scholarship money to young peacemakers at our local high school, Heather’s family is there. They give a scholarship to someone who wants to become a nurse. Heather was Nancy’s classmate, and Sara and Laurie knew her too. She struggled with leukemia for several years. She would come to school wearing a scarf after radiation treatments. She wanted so badly to graduate from eighth grade. She did that and a week later leukemia took her. Leukemia was a word I threw into a corner. I found it once a year for about two minutes. Leukemia was death. When I look up “leukemia” in the dictionary, Heather’s face was there.

Eliot had been very ill over the weekend. At one point I got within about five feet of him and he started wailing and crawled up tighter into Sara’s arms. Sara called the doctor’s hot line on Saturday and was told “Your son has a cold”. As the weekend wore on it was clear to her that it was more than a cold. She took him in on Monday and when she called us with the news we were all shocked. I knew, or I thought I knew that Eliot was going to be sick, and he was going to struggle and he was going to die.

Nancy was not at Sara’s house on Monday and was very concerned. She called at one point to see how Eliot was doing. I knew, or at least I thought I knew. For some typically over cautious reason I didn’t want to tell her. Concerned that it might be contagious, she pressed me about whether anyone else could get what he had. “No,” I said, “You guys can’t catch it. But I’d better let Sara tell you.” That was the first burden I could have lifted from my Sara’s shoulders.

Soon we learned that he would start treatment right away. We learned that induction therapy achieves remission over 90% of the time. We learned that there was hope, in fact a lot of hope, that Eliot would die long after I’m gone, from some cause other than leukemia. We learned a lot about leukemia in a short time.

The first months were very difficult as we watched him struggle with the treatments. When he made it to the maintenance phase, we started to see him lose some of the weight he had gained with the steroids. By autumn he was running around more like a three year old should. We all have the strong hope that he will beat this thing in the next several years.

I missed the scholarship award this year. I missed talking to Heather’s parents. But leukemia doesn’t have Heather’s face on it any more; it has Eliot’s face. There are a lot of other faces there too. They belong to Sara and Aron and all the rest of our family and all those at work who know about Eliot and pray for him, and all the other faces from halfway around the world. I’m proud and happy about all the efforts everyone has made

On My Sister's Blog

Check our her post about the anniversary - thanks Nan!

From my mom

Fond memories I recall are
frequent requests to go see the light rail
going to the coffee shop to have - bananas
walking down Frankling Street headed for the co-op to buy Mama some tea
listening for wind chimes and checking out favorite flowers on Milwaukee Avenue

Often Eliot would often ask me to sing about pasta as we walked down Franklin.

Choose your own tune ...
I love my pasta from the co-op
I love it with red sauce on the top
I love it when Mama makes a mountain (of spaghetti)
I eat it with my special tiny fork - yum!

I'd insist on hearing "Yum" or I wouldn't sing any more. His first
responses were so quiet and vacant that Naomi would often answer for
him. Eliot eventually felt good enough to holler "Yum!"

I had the priviledge of spending Naomi's first birthday with her...
sending her Mama an e-mail about it ... and making cupcakes for her. A
true priviledge.

I particularly remember the moment when Eliot was playing with the
train. We had all been trying to get him to be a little more active.
The train set and cars sure came in handy!

Certainly a year filled with horror and sadness - but many great moments, too.
Thanks for allowing me to be a part of it.
Mom

Here it Is

One year ago tonight I said the words that earned me The Mom of the Year 2006 Award.

One year ago tonight Eliot felt like total crap and I kept going on and on about how he had a cold and now we were all going to get a cold and how Christmas was going to suck because we'd all be sick. Eliot had had a hard week and a really hard weekend. He had whined and cried and wouldn't leave my side.

One year ago Eliot wore his red-footy pajamas all day. He woke up in the morning with weird purple-y blue marks under his eyes.

One year ago today we skipped church because Eliot was just too crabby to go.

And one year ago tonight when my parents and sisters and brother in law and niece and nephew all celebrated an early Christmas and I was trying to be a good hostess and Eliot wouldn't leave me alone I said, rudely, "It could be worse Eliot, you could have cancer."

One year ago tonight I didn't know that leukemia is totally curable. I didn't know Clare from the cancer clinic, or Dr. Mulroony who we met at the hospital or Dr. Troy Lund who has been with us since that first day of the hospital and will be an amazing doctor whenever they let him loose. We didn't know our doctor Dr. Burke who looks nothing like the doctor who got kicked off Grey's Anatomy. We didn't know all of the amazing nurses on 5B.

One year ago today I didn't know that Eliot was the bravest person I'd ever know. I didn't know what 6-MP or dexamethazone or bactrim or miralax or methotrexate were. I didn't think I could ever live through the horror of watching a child be hospitalized, or anesthetized (I literally thought about that less than a week before Eliot was admitted to the hospital).

I didn't know that I actually wasn't the fattest I've ever been. I didn't know that I could actually live through really having no sleep.

I didn't know that I actually can ask for help. I didn't know the length people will go to to support me and my family. I had no idea how many people spread so far around the world would pray for us. I didn't know anything about prayer.

Sometimes, lately, I wonder if I knew anything a year ago. Mostly, lately, I realize we never, ever, know whats going to happen the next morning. Not really. We just don't know.

1 Year Anniversary By YOU

So for so many reasons I haven't been able to blog now for a long time.

Here we are on the brink of passing the year anniversary date of Eliot's diagnosis. I've been writing about it for a year.

Now its your turn.

I'd love to hear your stories.

How you got the news. How you remember the past year. Hellish moments. Amazing moments.

I'd love to blog it all. I won't blog yours if you ask me not to.

Email me. saramcginley@gmail.com.