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.

 

 

Update on Elle

I apologize for the lengthy absence of updates on the site. It has been a busy couple of months.

We are pretty much still where we were after our visit to Dana-Farber in April...hoping that these options we have will work. Elle had a double dose of Cisplatin/Doxorubicin and Etoposide/Ifosfamide in May and early June that all but brought the tumor to a halt. But now she has a little trouble absorbing the fluids used to hydrate her for these chemo rounds. Due to the location of the tumor near her heart, it has to work harder to re-absorb all that fluid. So it makes it much harder.

So now Elle is doing something called metronomic dosing, which is taking smaller doses of chemo every day as opposed to large does over a short period. There is some encouraging literature on this idea. And we are combining that with an increase in anti-angiogenesis treatment. Elle was taking Celebrex to begin with and that is continuing. But we have added two more drugs to the mix that do the same thing (kill blood flow to the tumor/stop its growth).

The first is fenofibrate, which some people may know as Tricor. It's an anti-cholesterol drug that also seems to have a good response in fighting tumor growth. The other is an older drug that raises eyebrows: Thalidomide. Since Elle isn't in any danger of getting pregnant, it is relatively safe for her.

The hope is that these three drugs, in combination with oral daily low-dose chemo (Etoposide and Cyclophosphamide) will halt the tumor's growth and (fingers crossed) begin to even bring it down a little. And there was a good discussion with the radiology department. If we can definitely halt the tumor's growth, we may be able to start targeting parts of the tumor with radiation therapy. And if that happens, who knows...

But with all this, Elle has still been full of energy and life and joy. Here is a picture of her and her brother on vacation in Vermont last week.

And here they are as Ben and Jerry

Just a Pic

Elle enjoys frosting!!

Quick Update and Photos

Elle is in her "off-week" of her Irinotecan treatment. She finishes it next week and then has a CT scan on February 8 and a PET scan on the 10th. So fingers crossed... And she is handling it like a pro. As always, she is full of energy and never stops moving. It's an amazing thing to behold.

And now some photos! First is one of Davey and Ellie showing off their snowman:

Next up is Elle in her fancy red dress and coat for her birthday a couple of weeks ago:

And finally we have Elle in her fancy dress and sporting the classy red bow as she orders steak at Bugaboo Creek.

Do I even have to say that she charmed the entire wait staff? I didn't think so...

New Chemo

So Elle has started her new regimine of chemo drugs. The two she is getting this week are Etoposide and Ifosfamide. Etoposide is different from, but does a similar job, as Irinotecan, which is what Elle had in her very first chemo round. Ifosfamide is related to Cyclophosphamide (part of Elle's old VAC round) but is a step up on the potency scale. She gets these two drugs in limited doses each day in a five-day period.

These are heavier hitters and will hopefully *knocking on wood* start the process of whacking down the tumor once more. So far Elle has handled them well, but we are only into Day 2.

However, since arriving on Tuesday she has received numerous gift bags, goodies, a t-shirt from the Maine Red Claws mascot and a chance to shop with pretend money at a Xmas Store set up by Rite-Aid in the Children's Hospital Atrium. Currently she is singing Christmas songs in the Atrium and I am sure she'll come back with some gift even though there shouldn't be any there. Because that is how Elle does things.

And now a couple of pics.

Here she is taking a well-earned nap yesterday. She had to get up at 6:00 AM for a 7:30 PET scan.

This allowed her to get rested up for the shopping. Will it surprise any of you to find out that Elle got extra shopping money to cover her "expenses"? No, it didn't surprise me either.

And here she is singing Christmas songs in the Atrium today around lunchtime. She is the spitting image of a North Pole Elf, isn't she?

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.

Raising The Blues

Raising the Blues is a non-profit that visits sick children and uses the Blues as a way to raise their spirits and spark an interest in music. You can read more about them here. This is the organization that came to the hospital when Elle was in last week for her chemo. TJ Wheeler was the blues musician who came to visit and Elle loved every second of it. Here are a couple of photos that Beth took.

You can also find a couple more photos of Elle on the Raising The Blues website under the "Photo/Video" link.

Who Is Elle Rooting For In The World Series?

Considering we are all die-hard Sox fans, I think the answer is obvious. But courtesy of our good friends Joan and John in New Jersey, Elle makes the definitive statement.

Go Phillies!

Costumes!

Just a quick post of Elle and Davey in their Halloween garb!

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 To The Hospital

Elle has her next round of chemo starting tomorrow. The entry day was delayed two days so she could build up her white cell count. This is the rougher of the two, the doxorubicin/cisplatin combo. She'll likely throw up once or twice, and have to take anti-nausea meds for a day or two after she comes home.

On the upside, the delay meant Elle could go to her first dance class of the season. Following are two post-practice photos. Keep Elle in your prayers and thoughts tomorrow. She's tough as nails...but every bit helps.

Quick Pix

If you have ever wondered what kind of outfits Elle wears to her doctor appointments...

And if you were wondering what she looks like when she is bored and about to raise a little hell...

These are from this morning. Elle has to get another ECG (a standard procedure) to make sure that the chemo isn't affecting her heart. Some of the meds can play with the heart if they aren't flushed promptly and properly from the system. Which is why it's great Elle has the two lines; she can get her chemo and flush at the same time.

The photos are courtesy of Beth, who has the toughest job in the world right now; wrangling a bored Elle.

Bring It!

If you thought Elle was unprepared for this battle with cancer...you don't know Elle. Here she is, ready to kick ass and take names.

No, I'm not exactly sure why she's wearing the cowboy hat.

Kudos to Beth for being able to take a steady photo. I would have been laughing too hard.

All Is Still Well

Elle has been getting her weekly Vincristine treatments this month. Other than that, there hasn't been much to report as far as her cancer goes. There's going to be a meeting with doctors and surgeons from Portland and Boston next week about her case (we thought it was this week) and some decisions will hopefully be made about the next steps for Elle. For now, though, I am almost 100% sure Elle will finish this round of chemo (Doxorubicin and Cisplatin are next...ugh.) before any next step is taken.

So, with very little going on right now, here are a couple of pics. Baseball game pics coming soon!

Here are Elle and Davey with gifts sent by Beth's friend Betsy. Elle has already whacked Davey in the head with that lightsaber. And she loooovees the purse. Thanks, Betsy!

Here is Elle showing us her guitar skills. Beth was playing tunes on her iPod (I won't mention the song, but it's 80s hair rock) and Elle decided to play along. Personally, I think she made the song 800x better.

And here they both are, now playing to the Violent Femmes (much, much better). Of course, "play" is a term used loosely here. But they don't sound all that bad. Sadly, neither of them decided to smash their guitar after their performance. It's showmanship, guys...!

Oh, and to make something clear...Elle still has hair. Not a lot, but its there. And while I WILL shave my head when she goes bald...there's no reason to jump the gun. Trust me, I'm doing this for you as much as it is for me. I have a HUGE melon. Shave it bald and small rocks will start orbiting it...

Elle...Parade Princess

You may have heard that Miss Elle was recently in a parade. That she may have even been the star attraction of one group in the parade.

You would be right.

Every year in the Biddeford/Saco area they hold "La Kermesse", which is a week-long Franco-American festival that has music, food, rides, activities galore and the aforementioned parade. The Relay for Life / American Cancer Society had a float in the parade and they wanted Elle to be their special person. And so, of course, Elle became a parade princess. Specifically, she was "Miss Relay Survivor".

Here is the sign that went on the side of the car. Elle got to take it home.

Here is Elle getting her sash secured around her. Beth rode with Elle and got one that said "Caregiver." Unlike Elle, though, she didn't get a tiara. I think she is still bummed out about this...

And here is Elle all set and ready to get in the car. Was there anyone cuter at the parade? I think we know the answer to that...

I don't actually have any photos of the parade in progress yet. But as soon as I do I will post them. Suffice it to say, she was a great float rider, waving to the crowd and winning them over with the total package of cute that is Elle.

So, until then, here is a bonus photo of Elle eating a taco at Costa Vida in South Portland. Enjoy!