Eleanor Clare Paye: January 10, 2005 - October 13, 2010

Elle fought the good fight for longer than anyone thought she would. When she passed away this morning both her dad and her mom were with her. Elle went quietly, peacefully  and in no pain. She went on her terms. Which was the way she did everything in her life.

Elle was the kind of girl that you felt lucky to know or to meet. And if you were fortunate enough to be her parent (as we are), you felt like you won the lottery every day of the week. She was sweet, generous, kind....as well as cantankerous and sassy. Smart, silly and sometimes stunningly insightful, she was an old soul from the day she was born.

Elle loved flowers, dancing and music (especially the Beatles and Big Time Rush). She loved to eat Fruit Rollups late at night and drink chocolate milk early in the morning. She loved the Red Sox, hated the Yankees and respected the Phillies (that's a direct quote). Her favorite all-time food was steak. Medium-rare steak. She ate half a pound of it not two weeks ago...and ribeye to boot. Her latest achievement, and one that set her chest to bursting with pride, was being able to write out her whole name. Eleanor.

Her favorite non-humans were her two cats, Winnie and Beezus (Winnie is pictured above). Winnie and Elle had a very special relationship. They were sisters. Winnie always followed Elle around and slept on her bed. And when she needed it, Winnie would stick to her side and never leave her.

Elle was not only a wonderful daughter and great girl...but she was a super sister. And lucky enough to have the best big brother in the world. David and Elle fought like brother and sister will, but they loved and defended each other with a constancy and devotion that was something to behold. And he loved to make her laugh.

Elle was so inspiring. She never once asked "Why me?" She never once said "I want to quit." Once she understood what had happened in March of 2009, she simply set her mind to beating the cancer. And for a long, long time, she did. And then she decided it was time. She decided...and in doing that, she did win.

She is our Half-Pint and our Shipoopi Tumnus. She is our Elle-Belle, Ellabean, Ellie Minelli and our Foofy-Doo. And I use "is" purposefully, because she will always be these things and everything I mentioned before. She will always be Ellie. And we will always love her.

You did great, sweetheart. We love you.

 

 

Nutcracker

This past Sunday, Elle went through a rite of passage for most little girls: going to see The Nutcracker. Beth and Elle went with Beth's mom, sister and Elle's cousin Avery to see it at the Merrill Auditorium in Portland. It was a HUGE hit for the two girls. To say they were spellbound would be an understatement. Of course, everyone got dressed up. Here are two pics: the first is Elle and Beth, the second is Elle and Avery.

Elle and Avery look like two girls in the 1920s ready to hit a speakeasy after doing the proper "ballet thing." And yes, that is a compliment.

The two men of the household went over to Uncle Jerry's for wings, meatballs and football. A good time was had by all.

LEAVES!!

Elle is doing well. She is getting vincristine pushes for the next couple of weeks as we await word of when her surgery will take place (between now and year's end). She is growing peach fuzz on her head that is coming in pitch black. Of course, with the post-surgery chemo it will fall back out and knowing Elle she'll will her hair to be blond the next time it grows back. And then it will be blond because what Elle wants, Elle gets. Once you accept that, life goes a little easier.

And with that, here are two videos of Elle jumping in a huge pile of leaves. She decimated it about a dozen times and made me re-rake it over and over. The kid is a grade-A leaf jumper.

Easter Fun

We all went over to Nana and Bing's for a fine Easter feast yesterday. That was preceded by the annual Egg Hunt and Candy Grab. Then we got dressed. First, Davey:

Very J-Crew, the lad is. You could hit a ballgame or go sailing in that outfit. You'll notice that pink blur in the background. That would be an Elle fueled by half of a Hershey Bar. And not one of those small ones. Here she is in a rare moment of stillness:

How awesome is that? I think this should be the standard for Easter outfits. Elle rocks the punk look like no one else. She makes Patti Smith look like a flower girl. And that blue blur is Davey after a couple of handfuls of Swedish Fish. That I was able to get still photos of these guys is a miracle of Cana-esque proportions.

The Easter repast was excellent, as always. We filled up on good food and good times. Then we headed back in the late afternoon. Once there, Elle discovered she had a box of pink Peeps in her basket from the morning.

Now, you may remember that in a previous post I called her "my little Cossack." Well, I should have been thinker bigger. Like Catherine the Great. I'm guessing that these Peeps displeased Elle is some fashion...

Sadly, there were no survivors.

I don't blame her. It's like a muffin; all the flavor is concentrated in the top.

All in all, a good day. She got cranky once or twice and she was quite tired at day's end (which is a constant thing now). But she has been so good these past few days. She has her vincristine later today. Hopefully that won't wipe her out too much, though she may be a bit crankier tomorrow.

Ice Cream, Hair And Pictures

The big deal today was the local ice cream eatery - Martel's - opening for business. We took a drive down there and Elle got a mint chocolate chip cone while Davey got vanilla. Elle finished it off and then fell asleep as we went for a ride along the shore. It was really nice.

The other big news was that we had to cut Elle's hair. We had run into an unexpected problem; hair would fall out and get tangled with the hair that was still attached to her head. We ended up with two matted masses that were just impossible to undo. So Elle said, "Just cut them out!" And so we did. She is now sporting a cut that reaches to her chin. She is much happier not having the matted hair and isn't complaining about the new cut. But her hair is getting very thin.

And now...pictures!

This is Elle posing with some boxing gloves sent as a gift from one of Beth's high-school friends. Thanks, Margaret! She uses them to punch me in the nose and about my back.

Here is Elle rocking the new haircut. You can see how thin her hair has gotten. But she is more comfortable like this. And she's still the cutest thing going.

Here we are posing for a picture on the porch. It was incredibly nice here in Maine today, close to 60 degrees. We must have spent an hour on the porch today and Elle just loved it.

Here's Dad and the kids. Elle and Davey had a dance party on the porch later as we played some music through the window.

And here is Elle giving us the full-body pose to show off her Cinderella tattoo. That would be Davey in the background. I believe he is doing the "floor shake" dance made so popular by John Belushi in Animal House. Just following in my footsteps, though I had the twin excuses of college and alcohol when I did it.

It's All Relative

The big deal today was my sister Kristin and her daughter Maya came to visit.

Elle adores Maya. And the feeling is mutual. So for Elle to see her and play with her just made her day. And Davey and Maya get along great as well. So when Elle was resting on the couch, Davey and Maya were chasing each other all over the house.

It capped off a great day for Elle. Her temperature stayed low, so no return trip to the doctor. Her appetite was large, so mass quantities of pizza and crackers were consumed along with steins of milk and Gatorade. We painted and colored and wore yet another groove into her collection of Barbie DVDs. Then Beth's parents mixed it up with a new DVD: Peter Pan. Not the animated Disney classic but the 2003 live verison. Which, by the way, is fantastic. Elle's on her third viewing already.

Another piece of good news is that Elle's fluid drainage out of her chest tube has diminished significantly. So (fingers crossed) her chest tube may, may, be coming out soon. That would be great because she's about three days from wrapping that thing around someone's neck. No, she doesn't like it.

Tomorrow is Elle's entire chemo treatment for the week; a single Vincristine push into her central line. So we're hoping this week won't be too difficult for her.

Home

Elle is home.

Along with Elle came all of the gifts and cards everyone sent to our little girl. You may be interested to know that your outpouring of love can be quantified; four trips to two cars, each time with a tri-level cart filled with bags of stuffed animals, art supplies and whatnot. It was amazing. And heavy.

Her being in her bed right now, snoozing away, is unusual in that they released her with a chest tube. The fluid still isn't down low enough to take it out, but it was the only thing keeping her there. So they showed us how to drain the bulb and everything should work out okay.

We also have a small pharmacy downstairs. Between the meds for controlling side-effects of chemo, antibiotics, gauze, wraps, handwash and the rest, I'm thinking of adding a candy section and opening for business.

Her brother couldn't be more thrilled. He probably told me how happy he was that Elle was home no fewer than 10 times. And that is making Elle even happier.

This was a big step. She is already so much more content being in her own bed in her own house. And yet we have such a long road ahead of us. Trips to clinics, more stays at the hospital, nurse visits and who knows what else.

Winston Churchill made a comment after the British defeated the Germans at El Alamein in Northern Egypt in 1942, the first substantial victory by the Allies over the Germans. Churchill said "Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning."

I think that is where we are now, the end of the beginning. We have a long way to go, but we are on the road to recovery.

Trooper

Another day of chemo, another day of Elle coming through it with flying colors.

She felt well enough today to take another walk to the playroom on the floor and draw some pictures with markers. She also regaled Beth and me with a story of what she is going to do once she gets out of here.

In short, she and her Uncle Eirik (my cousin) are going to tour America and Mexico in her band. She is going to play guitar and Eirik will play harmonica. And there will be a lot of pizza and soda. And she'll buy me some beer and Beth some coffee. So I am on board with this plan. I cannot vouch for Eirik's musical skills, however.

This Elle, the chatty storyteller, is the one we have missed for most of the past 10 days. And it is great to see it coming to the fore again.

She is laying in bed right now, watching her Tinkerbell DVD and drinking a cup of milk. She is so peaceful and content that it is almost impossible to believe there is a tumor in her chest.

But man, did Cancer ever pick on the wrong girl. She is doing this well right now. Imagine how much ass she'll kick when she gets pissed.

Cancer

It's a hard word to read, harder to type and heartbreaking when you have to use it for a family member.

Our four-year old daughter Eleanor (new nickname: Elle. Her choice.) has cancer. And it's a rare one called rhabdomyosarcoma, a bunch of gibberish that means our little girl has a year's worth of chemo and possible radiation treatments coming up with surgery to boot. If any cancer can be called good...this isn't one of them.

But it could be worse. There are a hundred other types that leave you no room for hope. We have hope. People do get better from this. And if there is anyone that can beat the odds, it's my little girl.

If you are unlucky enough not to have met Elle yet, she is the one giving cancer the bird to your right. She has the attitude and the sheer will to crush this thing like a paper cup. Example: do you know a lot of people who could battle through a dose of morphine AND oxycodone to stay awake 30 minutes and tell their parents to "Shut up!" so they could watch their favorite television show from a hospital bed? She makes Ah-nuld in the original Terminator look like a wimp. Elle is a genuine force of nature.

That is what is so great about her. She is a spunky fighter and that attitude is so critical in fights like this.

So many of you have asked about her and have sent so many kind words our way. And the truth is that we have been overwhelmed by the love and support all of you have shown for Elle and rest of the family. So rather than send 1,000 emails and make 1,000 calls, we are setting up this website so you can follow Elle (and the rest of us) on her "Kicking Cancer's Ass" 2009 Tour.

We know this road isn't going to be an easy one for Elle or for us. But we also know that it will end with her beating cancer into the ground. Because, quite frankly, she won't have it any other way.