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.

 

 

Quick Pix, Part 2

Elle has had a pretty quiet week. Getting filgrastim shots to up her white count after the chemo from 1.5 weeks ago. Going to dance class. Raising 100 different kinds of hell. The usual stuff.

But today Beth and Elle went out for breakfast at a local Saco eatery called The Golden Rooster. It's awesome for many reasons, one of which is that they serve breakfast all day. Elle wanted pancakes. She got one. Enjoy!

Fishy-Whip!

Elle got out of the hospital on Friday and is doing well in her post-chemo recovery. She had one bout of vomiting (or as Elle said "I did the barf.") but her Zofran seems to have kicked in and hasn't done that since Friday evening. She has a slight foot-drop issue with her left foot, a side-effect of the chemo meds. But she tends to somehow make that go away in a few days. She attended dance class this morning and by all accounts did just great. The one thing I have noticed is that she gets a little more tired the first day or two after she finishes the chemo. Now, though, that has vanished as well and she is running Beth and me ragged...again.

There was one upside to Elle going to the hospital...the reintroduction of the ages-old game of Fishy-Whip! (Yes, the exclamation point is mandatory.) I believe it was first played by the Vikings in the Sixth Century and then permeated throughout Europe before being lost to memory during the Black Death 600 years later. But now, here it is recreated for you by Beth and Elle. These are Beth's pictures and comments below. It is, by all accounts, a rollicking good game and much better than Shin Whacking or Catch the Greased Weasel. Enjoy!

The age old battle of Fishy-Whip!

Where you slap your opponent with a stretched out Swedish Fish...

Until you can no longer take being pummeled by a gummy...

Or Elle eats the fish...:)

Back Home

Elle is back home after her latest round of chemo. She handled it pretty well, although this time the cyclophosphamide did make her throw up once or twice. But she powered through it and came home yesterday afternoon.

So while her and her brother were downstairs, The Empire Strikes Back came on television. Now, Davey is into this already. To the point where he wants to be Obi-Wan Kenobi for Halloween. So he's excited to see it. Meanwhile, Elle is crying and yelling "I DON'T WANT THIS!! I DON'T WANT THIS!!"

...five minutes pass...

"Daddy, why does the monster want to eat that guy?"

And with that, Elle was hooked. She wanted to know who everyone was and what they did. Did they live on planets or in their ships? Who is Darth Vader and why is he dressed all in black? Why are they fighting with laser swords? Why does the Empire want to kill them? Did you see the Princess shoot that guy? And did you know that DARF VADER IS LUKE'S DAD??!!

I thought I would get Davey to share my geek love of Star Wars. How thrilled am I to get both kids? Can't even put it into words...

This morning she woke me up with my old VHS set of the first three movies in her hands. "I want to watch these" she said. And so when I left for work Elle and Davey were watching the original film, with Elle firing rapid-fire questions about the movie to Beth. Beth, who isn't as much of a fan of the series, gave me what I hope was a mock glare as I left. (It really was. :) )

Speaking of...I want to take a second here to talk about Beth. She has a very hard job that goes pretty much unseen. She is the one that takes Elle to the hospital every time she has in-patient chemo. She stays in that room with Elle 24-7, barely gets a bite to eat (b/c of a gluten allergy...hospitals don't have a lot of gluten-free food), sleeps on an uncomfortable couch, breathes recycled air that plays hell with her asthma and is physically and mentally exhausted when it is all said and done.

We can mitigate the food issue somewhat by bringing food in from the supermarket, but the rest of it...Beth hunkers down like a champ and just does it. Every. Single. Time. It's awe-inspiring to watch sometimes. She'd never say it herself, but Beth sets the gold-standard for mothers in my book. I'm lucky beyond belief to have her as my wife, and the kids are just as lucky to have her as their mother. I say all the time that Elle is "tough as nails". She gets that from her mom.

Great Day!

Sorry I didn't update last night. The whole family was out and when we came back we all pretty much crashed and fell asleep.

But it was a good tired, because we had a great day yesterday. I'd say it was one of Elle's top five days since this began more than a month ago. She was chatty and alert. She was telling jokes (100 variations on a knock-knock joke that involves bananas). She was eating well. The only downtime was when she needed to get her filgrastim shot.

But even that wasn't so bad, because Beth gave it to her. And however she did it, it worked like a charm and didn't hurt Elle nearly as much as the one from the day before. So Beth is now the official Giver of Shots (by Elle's request). I have the lesser title of "Guy Elle Looks At When Shot Is Given."

Then, in the afternoon, we all went to the Maine Children's Cancer Center. Not for medicine or tests, but for puppets! They have a program there for children with cancer and their families. The activity last night was pretty cool; a woman came in with two puppets who interacted with the children and talked about having cancer and being the sibiling/friend of a child with cancer. Afterwards, the kids got to make their own sock puppets. Elle's has three eyes and Davey's has a fu-manchu mustache. Interesting thing about making sock puppets...they use hot glue guns to secure everything on the sock. One parent puts their hand in the sock, the kids tell them where to place the various objects, and the other parent uses the gun.

Hot glue isn't stopped by sock fibers when you press down on the objects to secure them. Which I found out when I stupidly pressed down on a feather. Beth, to her credit, immediately grabbed the feather off the sock as I yelped in my self-inflicted pain...and then burned her finger in the process. Elle looked over at the two of us yelping with a look that was equal parts pity and disgust. Davey just laughed.

After all that, we went to a local pizza parlor called Pat's Pizza and had some mighty fine pizza. This was especially great for Beth because she has a wheat/gluten allergy and Pat's has gluten-free pizza AND beer. I think this was the first pizza she has eaten in six months. The kids enjoyed a cheese pizza and fries while Beth and I tucked into some gluten-free pizza with just about every meat known to mankind on the top. It was delicious. By the time we got home it was just after eight and Elle was asleep.

It was a really great day.

Back Home

Elle is home sleeping again after her first VAC round yesterday.

It was rough, both for Elle and Beth. We found out that Elle suffers from nausea when taking the VAC. As in brutal, constant nausea for about 12-18 hours. So there was very little sleeping for both of them.

And then came the CAT scan. It was supposed to take place at 9 AM. Instead it happened at 3 PM. Add to that the fact that she wasn't allowed to eat or drink until the scan happened, and she basically ate nothing for close to 24 hours. It was horribly unfair to Elle. Beth and I both let people know we were not pleased.

But Elle handled it all like a pro. And now she is enjoying a well-earned rest in her bed.

The next interesting thing we get to do is give her growth factor (GF) shots. The VAC will drop her white blood cell count. We give her the GF shots to bring the count back up. I can't imagine Elle will be happy about this. But I would bet that, like with everything else, she'll suck it up and power through.

The Next Round Begins

Elle is back at Maine Med today with Beth for her next round of chemotherapy. We've moved onto the second round of treatment now with the VAC. VAC stands for Vincristine, Dactinomycin (or Actinomycin-D) and Cyclophosphamide. She needs to go to Maine Med for these and stay overnight. The reason being that while the time it takes to deliver the chems is relatively short, they cannot be allowed to settle in your system because of their toxicity. So she has to be hooked up to an IV and then flush the chems out through vigorous and constant urination.

The latter two chems are heavy hitters; Cyclophosphamide in particular is rough. Many people don't suffer from the side effects or have minor ones, but some of them including vomiting, diarrhea, darkening of the nails and skin, tiredness and joint pain. And, of course, the major side effect is that Cyclophosphamide can cause cancer in and of itself. The irony of using a potential cancer-causing agent to kill cancer hasn't been lost on Beth or myself.

But Elle has been so strong through all of this. Here she is at the hospital today waiting for her chemo to begin. Beth took the photo.

I know for a fact I wouldn't be smiling facing a round of chemo. The girl is tough as iron.

More tomorrow after I talk to Beth on the phone.

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.

Pictures!

First, Elle doing the Sprinkler...

And now...hats!

Finally...Elle making sure we all know who is the best mom in the Universe.

Flushing The Lines

Elle has something in her chest called a central line. It's a semi-permanent fixture (it'll be there until we're done) that allows the doctors to deliver IV drugs (including chemo) and draw blood samples through one of two lines. The base (where it enters the chest) and a majority of the two lines is covered with a waterproof dressing that is changed once a week (more if she takes a bath/shower/goes swimming in a pool). It looks like a clear piece of Saran Wrap.

But these lines need to be cleared, or flushed, every day. This is so blood doesn't clot and block the lines, which would render them useless. So every day each line has to have a sterile saline solution injected into it, followed by an injection of heparin. The heparin is an anti-clotting agent that flushes any particle of blood out of the line but breaks down before it hits Elle's bloodstream, so it's perfectly safe (ie she won't become a bleeder like a member of the Russian aristocracy.)

The visiting nurses, despite their name, don't actually visit every day. Care to guess who has to learn to do this?

Beth and I each took a line today while the nurse watched us. Beth did a great job. I forgot to de-clamp my line and tried for five seconds to push the saline through before I realized what had happened.

It's an intricate process. You have to:

• Wash your hands
  

  
  

• Wipe the cap on the end of the line clean for a minimum of 10 seconds with an alcohol wipe
  

  
  

• Do everything in your power not to let that cap touch anything else that occupies a point in space and time. Because if you do you have to clean it again.
  

  
  

• While holding the cap at its base in one hand, attempt to de-cap a syringe filled with saline solution in your other hand. Oh, and it's threaded, so good luck.
  

  
  

• Once you figure out how de-cap it without dropping the cap on the line, you take the syringe and screw it onto the end of the cap.
  

  
  

• Then you unscrew it and draw some air into the syringe to break the seal and then push a little water through the top to get rid of the air.
  

  
  

• Rescrew the syringe onto the cap and start to push the saline solution into the line.
  

  
  

• Realize that the water isn't going through because you forgot to de-clamp the line.
  

  
  

• Undo the clamp on the line and try to inject the saline solution again.
  

  
  

• Unscrew the syringe from the line because by trying to push the saline through with the clamp on, you create a vacuum that you have to break. And for God's sake, do not let that cap on the end of the line touch anything!
  

  
  

• Screw the saline syringe on for a third time and finally push the solution through the line.
  

  
  

• Look away as your daughter, who drew her own blood the other day, glares at you with thinly-veiled disgust.
  

  
  

• Repeat with the heparin.
  

On the bright side, I only have to do this 200+ more times over the next year. I have to get good at it at some point.

Elle had a good eating day today. Right now the goal is getting calories in her. So while I was able to get her to drink an Ensure shake made with ice cream and milk, she also had soup, vanilla wafers, Goldfish and french fries to go with multiple cups of juice. It's easily the most she has had to eat in two weeks. And she didn't have any nausea today.

She also sat on the couch watching her numerous Barbie DVDs (Barbie and the Magic Pegasus, Barbie as the Princess and the Pauper, Barbie Explains How to Sell and Buy Credit Default Swaps) and coloring with those great Crayola markers that only show up on their special paper. Her diarrhea lessened today and her fluid production was down slightly. So it was yet another good day. And that's all you can ask for right now.

Improving

Each day Elle seems to get a little better.

Today we went to see some K-9 units who came to visit the children today. These dogs are remarkably friendly and well-behaved with the kids. Elle got to pat them all and watch them, which made her so happy she...fell asleep.

Once she woke up, though, she was chatty all day long. And her grandparents (my parents) came to visit again, which she loved. Also, we have watched this Barbie and the Diamond Castle about 1000 times now. The best thing I can say about the DVD is that Elle likes it.

Today was the last day of her first cycle of Irinotecan. It's also known amongst the nurses as "I run to the can" for its rather...explosive properties. And last night Beth got to find out why, to the tune of four diaper changes in four hours. Today was a little better though, with only a couple of episodes. They have her on a medication to counteract that effect. Hopefully that won't get too bad in the days ahead.

But she is as good as she has been in a while now. Right now she is regaling me with a story about how she was the princess in the Barbie DVD. It is long and rambling and more than a little silly. And it couldn't be better.

No More Pleur-Evac

The Pleur-Evac is this box-like device that you hook up to a suction nozzle. It then uses sterile water in one chamber to create a vacuum in a chest tube to draw fluid out and into one of three storage chambers. It's about the size of a notebook computer case stood on it's end and much heavier. You hang it off the hospital bed

This is what Elle has had lugged around behind her every time she walked anywhere or went to the bathroom. She couldn't roll everywhere in the bed because she risked yanking on the tube, which apparently hurts like hell.

Well, the Pleur-Evac is no more. Her fluid production is down enough where they were able instead to attach something that looks like the squeeze bulb on a turkey baster. Except the bulb is clear, made of tougher material and I would wager is a lot more sterile. What they do is squeeze the bulb, hook it up to the tube and then secure the bulb (it has a loop attached) with a safety pin to Elle's shirt. Then suction draws the liquid out over time. And when it is time to empty it, you just clamp the tube, detach the bulb and then clean it, squeeze it and re-attach it.

So now Elle is essentially able to go anywhere she wants without a massive box behind her. And once her fluid gets down to a level where she'll be able to naturally re-absorb it and pass it, she can come home. Hopefully that will be early next week.

The only other news is that she had her second dose of Irinotecan. She handled it pretty well with just a touch of nausea. So they gave her Benadryl for it, which actually works well for nausea with kids. I prefer it for Elle as opposed to this stuff they gave her last night that made her look more stoned than James Franco in Pineapple Express.

Also, there are two local radio stations doing a charity drive for the Barbara Bush Children's Hospital (the pediatric wing at Maine Med where Elle is). And Beth got to go on the air and tell Elle's (and our) story as part of it. She did well enough that she is going on again tomorrow. And Elle may be with her. It depends on her mood and if they can get her painkillers into her on time. Otherwise you get Cranky Elle and no one wants that on a live mike.