Wednesday, December 16, 2009

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?

Monday, December 14, 2009

Regrouping

Elle has a PET scan tomorrow morning and then it is back to MMC for chemo. We won't know what chemo drugs she will be taking, or the schedule for them, until we reach the hospital tomorrow.


What happened is that there was some regrowth in the tumor. And that is become some of the cells in the tumor became chemo-resistant to the VAC and Doxo/Cisplatin regimen that was being used. And those cells began to grow.


There was really no way to catch it before they did. And it was a silver lining of sorts: the CT scan in Boston that caught the growth was a last-second decision. And had the surgery been performed with the tumor growing...it wouldn't have been good for Elle.


So while this setback is disappointing, Elle is still raring to go and so are we. The chemo is just the first step. And we WILL beat this thing.


And just so you can see how well Elle is doing...here is a pic of Elle and Davey in Boston at the Public Garden. I made a special trip to get Davey so the whole family could spend our (early) last night in Boston before we came back to Maine. This was taken right before we left the next morning.


Tuesday, December 8, 2009

Surgery Called Off For Now

The surgery scheduled for the 10th has been called off. Unfortunately, the CT scan taken today has shown a small amount of growth in Elle's tumor. While it is still far below the size it was originally in March, the surgeon feels that with the growth, surgery wouldn't be the right thing to do.


So the next step is to meet with her doctors and figure out a new avenue of treatment. There are still different chemo regimens to try and other treatments altogether. We are, by no means, beaten. This is just a setback on the road to recovery. Elle is still full of energy and fire and she IS going to beat this. It's just going to take a little longer.

Thursday, December 3, 2009

Surgery

It's official: Elle's surgery will take place the morning of December 10 at Children's Hospital in Boston. We are going down for a pre-op interview on the 8th and will be there until at least the 15th for Elle's recovery.


This is good news. And still it guts you. You know you've made the right decision to have the surgery...but you are removing your daughter's lung. It brings up a dozen different emotions at once and they all conflict with one another. If anything makes it easier, it is Elle's attitude. Her fight and spirit through all of this has been awe-inspiring. But it's hard.


So please keep us all (and Elle especially) in your thoughts. And send as much positive energy as possible her way on the 10th.

Tuesday, December 1, 2009

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.

Tuesday, November 24, 2009

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.

Monday, November 23, 2009

In And Out

Not that it is ever that easy, but Elle's chemo last week went easier than expected. They decided to do another round of VAC as opposed to the doxo/cisplatin combo. We aren't sure exactly why, but our guess is that it's because she recovers more quickly from the VAC and with surgery on the horizon, the faster Elle is back at a level to do surgery, the better. So rather than spend three days in the hospital, Elle and Beth were there for just the overnight and left the next morning.


Not that there still wasn't a lot for Elle to do. There was a blues player that does music therapy for the kids visiting and Elle was all over that. To the point she was trading riffs with the guy on a harmonica. Which they then gave Elle to keep. Because Elle...is Elle.


And then two therapy dogs (Golden Retrievers) visited. Elle enjoyed that as well. So she had a lot packed into her 24-hour stay.


But that is it now for the chemo until the surgery occurs.

Tuesday, November 17, 2009

Next Chemo Round

Just an update. Elle has a round of Doxo/Cisplatin starting tomorrow. She should be out Friday morning *knock on wood*. Beth will be going in with her as always. Sleeping on those couches...she is a brave, brave woman.


Elle is still kicking maximum ass; energy at 100+ and as feisty as ever. She told me yesterday that if I didn't give her a cookie she would "hit me 22 times...with power!" It was hard not to laugh as I sternly told her that wasn't an acceptable way to ask for a cookie. She will also be playing pre-school basketball this year. Elle with a large ball that is expected to be thrown at people...this could be interesting.

Monday, November 9, 2009

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.


video



video

Monday, October 26, 2009

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!




Saturday, October 24, 2009

Home From Chemo

Elle finally got in for her VAC on Friday and came home late this morning. It went as easy as these kind of things can. Beth went with her and took one for the team by sleeping on those god-awful couches. Elle was in a good mood the whole time, though she decided to complain between the hours of 12 and 3 in the morning. Which didn't make that couch any more comfortable.


We also have a better idea on when surgery will occur. It's now "before year's end." So anytime between now and the end of December we'll finally get that surgery done. Which is a good thing...it really is. But it's still hell to have to choose to take your daughter's lung out.


But for now, the focus is on the Halloween Parade tomorrow in the center of town. All the kids dress in their costumes and follow the Headless Horseman down Main Street. Elle will be Dorothy and David is Luke Skywalker. There are rumors I may be getting dressed up as well...not likely, but possible.

Friday, October 16, 2009

Still No Chemo

Elle's chemo was delayed...again...until next Tuesday. The reason is b/c one element of her white cell count was down again. This time, though, we may know why.


There has been a recent issue with Elle's two lines. The issue is that Miss Elle is sick of her two lines and decided that playing with, twisting and swinging them was the best way to express that displeasure. And so both lines developed breaks. They were small, but needed to be repaired. So they were, but they give her a large dose of antibiotics at the same time. So this happened twice, and the theory is that this may have impacted the development of whatever it is in her white cell count we need to grow. So we are giving her one more week and laying off the Bactrum this weekend. Hopefully that will do it.


Other than that, things have been pretty mellow for the girl. The "big deal" is that she has her Dorothy outfit for Halloween. And yes, as soon as we have the whole ensemble on her, there will be pictures posted.

Thursday, October 8, 2009

No Chemo Until Tuesday

A slight change of plans. Elle's white cell count was a little low on Tuesday but had a lot of new white cells forming. So the decision was made to delay the admittance for her VAC round until this upcoming Tuesday. Not a big deal; these kinds of delays are common. Still, it's a little nerve-wracking when it happens.


She handled her CT and PET scans like a champ. Older men, athletes even, freak out and have to be sedated when they enter these machines. Elle just lays there and occasionally snoozes. Ain't no one tougher than my little girl.

Sunday, October 4, 2009

Scans And VAC

This week will be a little busy for Elle. She is getting her next round of scans to see how the chemo has been doing. And then Wednesday, right after her PET, she goes into Maine Med for her VAC round of chemo. This is the easier of the two; it goes pretty quickly over the first day and there's only one night in the hospital. Easier is a relative term, though. Sleeping in the hospital is tough and I admire the hell out of Beth for doing it each and every time.


The other big news is Elle has discovered and fallen in love with "The Wizard of Oz." She has had the DVD for four days and has watched it about 9,374 times so far. I think she likes it.

Wednesday, September 23, 2009

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!


Tuesday, September 15, 2009

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...:)

Tuesday, September 8, 2009

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.




Wednesday, September 2, 2009

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.

Friday, August 28, 2009

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.

Monday, August 24, 2009

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...

Wednesday, August 12, 2009

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.

Sunday, August 9, 2009

Next Round Starts Tomorrow

First off, my apologies for the long time between updates. The simple truth is that not too much has been happening. I still have to upload all the photos from our Fenway outing. But Elle has been healthy and happy the whole time. Her counts are up across the board.


We had a discussion with her primary doctor last week and her progress is very positive. So now they will start to have internal discussions about when surgery should occur. But for now it's another round of chemo and it starts with the VAC. This is the one she tolerates quite well. So hopefully that will continue.


So positive thoughts for Elle and we should have a requisite hospital photo in the next day or two. For now, here's one from her last stay in the beginning of July.


Thursday, July 30, 2009

Elle The Transformer

Today Elle had a couple of tests; a hearing test and an ECG. These are done because some of her chemo drugs can affect her hearing and her heart if they are not promptly flushed out of her system.


She passed both easily. She especially enjoyed her ECG; she liked being able to see her heart on a screen. It was colored blue and red, which she though was top notch.


But the best part for Elle was having the wires attached to her chest. She thought it made her look like a Transformer. A Transformer that turns into a princess (her words). And with that, I give you Elle the Transformer.


Saturday, July 25, 2009

Going To Boston...For Fun!

It's been a quiet week. Elle's counts on her platlets and white blood cells were down slightly at the beginning of the week but had come back up by Thursday. Elle is scheduled for another round of the VAC in the hospital on August 3. That has pretty much been the only news of note for Elle as far as the cancer goes.


But the big news is we're going to Boston to see the Red Sox! This is all thanks to Mike and Christine Paul, who made Elle the focus of their Ride and Rock fundraiser a couple of months ago. We're doing it up with a limo ride and everything. The kids are beyond excited and, frankly, so are Beth and I. It's going to be a blast.


And yes, I promise to take (and post!) plenty of pictures.

Friday, July 17, 2009

Good News

We got Elle's results from her scans this morning. And the news is positive.


The main tumor, while still present, has continued to noticeably shrink. Some of the nodules that had formed on Elle's cavity wall have disappeared. And there has been zero spread of the cancer to any other part of her system. So to say Beth and I are happy with the latest news is an understatement. And while it's just one step in the long haul, it's a big one.


Now the question becomes whether we go one more round of chemo (VAC and Doxo/Cisplatin) or can we do surgery now? That hasn't been decided yet. If we do one more round that would be another two months of chemo. The surgical doctors will examine the scans and then we'll all get together to talk. So that decision is still a few days off, at least, from being made.


But for now, we are breathing a sigh of relief and celebrating another victory for Elle.

Wednesday, July 15, 2009

Scans Are Done For Now

Yesterday Elle had her PET scan. As usual, she was a total pro. She didn't move a muscle and fell asleep while it was going on. The techs commented again on how great she was and compared her to athletes that freak out in the tube. In their defense, it is a tight tube. I'd probably spaz as well.


But now we play the waiting game for a couple of days. And then we find out how effective Elle's chemo has been. That will dictate the next series of events. But for now Elle gets to relax...except for the daily filgrastim shot. Sorry, kiddo.

Monday, July 13, 2009

Scans: Day One

Today and tomorrow are very important. We are getting a series of scans done on Elle that will let us know how effective her treatment has been thus far. All the external signs have been positive up to now, so *knock on large piece of wood* hopefully the scans will prove the same.


Today it's the CAT scan at MMC. Tomorrow is the PET scan. So pray extra hard for Elle today and tomorrow. The better the news, the better chance we can start surgery earlier and get this damned tumor out of her.

Friday, July 10, 2009

Back Home

Elle came home yesterday afternoon after finishing her second round of Doxorubicin and Cisplatin. She threw up a couple of times but it was nothing approaching "Exorcist" levels of spew. The bigger issue was all the pee she kept expelling because of the massive hydration that is required to flush these chems out of her system. Many pants were changed, my friends. And...Elle discovered a new fun thing to do in the hospital.


You can unplug IV racks from the wall because they have a battery pack that keeps them running for a couple of hours. That allows nurses and doctors to transport patients without any worries about a drip stopping, or allows parents to walk their kids down to the playroom and then plug in there. Elle discovered a third thing it allows; riding the IV rack like a scooter as your dad pushes you. The bottom of the rack has two metal bars that cross each other and a wheel at each end. Elle discovered that she can hold the pole that holds the IV rack and place a foot on each of the bars. She is short enough that her head doesn't hit the stuff on the IV pole.


So yesterday if you were at the Barbara Bush Childrens' Hospital, you saw me pushing Elle around the floor as she held onto her IV rack and yelled "Faster, faster!!" Since the nurses laughed at the sight of this nearly-bald, elf-sized girl riding her IV rack around the ward, I am guessing this is okay. Or it just may be because it's Elle and she can warp reality to her needs. Either way, she had a blast.


So she is back home and demanding waffles. She is taking her Zofran but has thrown up once or twice since she got home. Again, nothing major but it is a side-effect of these particular chems. The Zofran does seem to be slowly lengthening the time between those moments, so hopefully it will kick in soon and stop the vomiting. And she wants to toast marshmallows tonight on the grill, so she must have an appetite of some kind.


Oh, and she got her blood transfusion. So now Elle has even more energy... help! :)


Next up should be some scans on Monday. That will hopefully set up the plan for going forward, including when the surgery will take place.

Monday, July 6, 2009

Tomorrow Is Go

Just a quick note to let you all know that Elle is going into the hospital tomorrow for her next round of doxorubicin and cisplatin. Her white count was up enough today that she is good to go.


While Elle is in she's also going to get a transfusion. While she is still full of energy even with her lower red cell counts, the transfusion gives her more color and (God help us all) even more energy.


If memory serves me right, Elle and Beth will be there until Thursday. And then they come home and the filgrastim shots begin. Which Elle just loves, as you all know.

Sunday, July 5, 2009

No Hospital On Monday

Elle won't be going into the hospital tomorrow to start her doxorubicin/cisplatin round of chemo. Her white cell count was just a little too low so they want to give her another day or two to build it up before her next round. So it looks like she will be admitted on Tuesday.


Not that you would know her white cell count was down. Elle went with Davey and their cousins to the local amusement park (Funtown) with Beth's parents, sister and her husband. They were there for 4.5 hours. Elle rode every ride she was tall enough for. Twice. Maybe three times on a couple.


So she is doing very well. But you have to have the white cells at a certain level, so it's a waiting game. Which is frustrating b/c she has a scan scheduled for next week. And if everything looks good then surgery may be the next step. We just want to get the tumor out.

Wednesday, July 1, 2009

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!


Wednesday, June 24, 2009

Picture Time

Just a couple of photos from the past couple of weeks...



This is Elle in the playroom at MMC with Beth when she was in for her VAC two weeks ago. That cupcake looks...delicious?



Here is Elle doing her best imitation of "The Thinker", complete with knitted cap. She looks wise beyond her years...or she may be hatching a nefarious plot. We still aren't sure which one it was.




These two pictures were taken after Elle got back from MMC. She is modeling the last fashion trend; wearing a Ramones t-shirt over a nightgown before going to bed. I think she pulls it off with ease.



This photo was actually taken before the other two but I save it for last for two reasons. First, to show off the nice hat Beth's friend Buffy and her family sent Elle (anything with Tinkerbell is a winner). Second...notice how the room behind her has been utterly destroyed? That is all courtesy of Cyclone Elle, who ripped through the playroom with a furious vengeance.

Sunday, June 21, 2009

Not Much To Report

This past week has been relative calm. Elle had her vincristine push last Monday (and has another one tomorrow). And Elle and Davey got a visit from my parents for a couple of days, which thrilled them to no end. Elle monopolized my mother's time while Davey rough-housed with my dad so much I think the poor guy has a hernia.


I am going to try and upload some Elle photos tomorrow as she poses in various costumes and outfits. Her next major chemotherapy session should occur July 6, when she has to take Doxorubicin and Cisplatin.

Saturday, June 13, 2009

The Week In Review

Yes, that's right, you are looking at Beth and Elle sitting on the floor and listening to Barbara Bush read a book.


This occured when Elle had to go in for her next round of chemo on Monday. They got into the hospital around nine that morning and were informed that Mrs. Bush would be arriving around 11. So Beth gave Elle a quick primer on how the hospital was named after her and that Monday was her birthday. Elle then took it upon herself to write out a birthday card for Mrs. Bush.


When Mrs. Bush arrived with her Secret Service contingent, she came by and talked with the different patients and their parents. Then it was time for Mrs. Bush to read to the kids. You can't see it in the picture, but Elle is holding her birthday card for Mrs. Bush. After the reading Elle gave it to her, which Mrs. Bush appreciated very much. And then there was birthday cake.


So Elle was eating a piece of cake and about halfway through, she decided she was done. Beth had stepped away for a second, so Elle turned to the nearest adult...a Secret Service agent. She looked up at him, extended the half-eaten cake and said to him, this agent with the gun, the suit and the earpiece, "You can take this, I'm done."


The agent willingly took the cake from Elle to throw away. Beth rushed over to apologize but the agent said he didn't mind at all. Apparently he didn't mind the line of frosting he got on his sleeve either. Chalk up another convert to Elle.


But that wasn't all. After the agent came back he said to Elle "Aren't you the perfect little princess?" Elle smiled sweetly and answered "I know", which elicited smiles from the whole Secret Service contingent. No matter how tough you are...you stand no chance against Elle.


And when Mrs. Bush was leaving, she made sure to stop back in Elle's room to say good-bye. Maybe we'll get an invite to the compound this summer...


That set the positive tone for Elle's stay. Her chemo went so well that she got out a day early, which weren't expecting at all. Now for the rest of July she gets a vincristine push once a week. And she needs some filgrastim shots this week, which Elle isn't fond of in the least.


The rest of the week went very well for her. And Elle and Davey got to sleepover at Beth's parents last night, which they always enjoy. So it was a great week for Elle.

Sunday, June 7, 2009

Oh What A Day!

Where to begin about Saturday?


First, there was the dance recital at the Merrill Auditorium in Portland. Elle and her class did wonderfully. Below are a few photos of Elle dancing to "Candyman."







And then we got a very special surprise. After the dance, her teacher kept Elle out on stage. She told the story of Elle having cancer to the audience and then gave her a special award, the "Heart of Dance" trophy. This thrilled Elle to no end. Especially because earlier she had seen older dancers get 5, 10 and 15 year trophies for how long they had danced and asked Beth "Where is my trophy?"


Beth said "You can get one when you dance 5, 10 and 15 years."


Elle's response? "I want one now." And by God, it happened.



And one last picture of the recital. This one is post-dance with Elle holding all her flowers and with her trophy.



Then, after a celebratory dinner at Applebee's (complete with the aforementioned "burrito") we went to the "Ride and Rock" at Mike and Christine Paul's home. Which was a great time.


The Paul's had a tent set up in the back complete with a band. There were lots of people there and everyone was waiting to meet Elle.


The first picture is with Elle and me talking to the singer of the band as she and Mike (in the middle) introduce Elle to everyone. She was shy at first but came out of her shell when they asked who her favorite ballplayer was (David Ortiz was the answer).



The next picture is of Elle playing the tambourine with the band. She loved this and has spoken often of starting her own band. In fact, the whole way home in the car she used her trophy as a mike, had Davey introduce her and then would sing each song that came over Beth's i-Pod. It was pretty great.



And then later came what may have been the highlight for Elle. Mike brought his bike around and Elle got to sit on it with him. You'll notice the do-rag Elle is wearing. This great guy at the party saw Elle and gave her his, which put a HUGE smile on her face. She wouldn't take it off for about the next half-hour.



Elle slept like a log last night after what was a wonderful, wonderful day. And after a relaxing day today, she heads back with Beth to the hospital tomorrow to start her next round of chemo. If all goes as planned, she'll come home on Wednesday.

Friday, June 5, 2009

Busy Weekend

Just a quick update on Elle's treatment: she goes in Monday for her next round, which will be the VAC. She recovers relatively quickly from the VAC round but has a nasty bout of vomiting while getting it. But now that the medical staff give her the anti-nausea meds before she starts, that may be mitigated somewhat. No word yet on when the surgery will take place.


In happier news, Elle has her dance recital tomorrow afternoon. She'll be on stage at the Merrill Auditorium in Portland with her dance class, hoofing it to "Candyman". It's pretty damn cute and yes, there will be pictures forthcoming. After that, it's the annual post-dance meal at Applebee's (her choice) where she gets a burrito. Yes, I know there are no burritos at Applebee's. We get her a quesadilla and tell her its a burrito. Why? Because she insists that Applebee's has burritos.


Then, after coming home for a quick rest, it is off to the Ride and Rock that I wrote about earlier. It's a combo fund-raiser for the Saco Food Pantry and one other cause, which happens to be Elle this year. The motorcycle ride starts at 12:30 at Jimmy the Greek's in Old Orchard Beach at 12:30. The music kicks off at 5 PM at 172 Flag Pond Road in Saco and runs until 11. If Elle is up to it, that's where we'll be showing up. Hopefully we can get a good shot of Ellie on a bike. And thank you again to Michael and Christine Paul for making Elle the recipient of this great event. Make sure to show up if you can; Mike and Christine put a TON of work into this every year and it's all for a good cause.

Monday, June 1, 2009

A Special Package

A few weeks back, Elle received a package in the mail. We opened it up to find this:



Inside was a letter from the best swimmer in the world, Michael Phelps:



Along with a lot of cool stuff from the Beijing Olympics:



There's some neat stuff there, including a swim cap that Michael got from a Hong Kong swimmer (they exchange caps the way soccer players exchange jerseys), some Olympics pins and a lanyard that Michael used for his credentials.


Elle loved all of it...heck, we all did. Beth and I stayed up all hours of the night watching Michael win his medals. And to have something like this come in the mail was just amazing. Suffice it to say, Elle has a new favorite athlete (sorry, David Ortiz). And she wears the baseball cap all over the house yelling "I'm an Olympian!!"


This was made possible by Marissa Gagnon, a Saco resident who works for the Michael Phelps Foundation. So thank you to Marissa for doing this. And thank you to Michael Phelps as well for taking the time out of his busy, busy schedule to do this for Elle. It was incredibly kind of both of you to put this together.

Sunday, May 31, 2009

Change Of Schedule

Elle was supposed to go into the hospital on Monday to start her next round of treatment. However, her white blood cell count is just a little too low. This is not an unusual event. Sometimes, after getting fligrastim, the body's WBC production dips a little before picking up again. Elle just happens to be in that dip right as her next treatment is supposed to start. So it has been delayed to some time between the middle of this week and the beginning of next week. That's not a bad thing or something to be concerned with; these schedules are built for flexibility.


Also, Elle is still on for the dance recital on Saturday. She had her last practice before dress rehearsal yesterday. Beth was there and said Elle did great.


Tomorrow, a special set of pictures. I promise.

Thursday, May 28, 2009

Word For The Day

Skibbles: A hard-shelled, fruit-flavored candy more commonly known as Skittles.


Example of Usage: Elle decided that she wanted some Skittles and called Daddy at work to get some. But she called them Skibbles and told Daddy he was wrong when he tried to correct her. Daddy went to the store and bought Elle some Skibbles.


Frankly, I think it's a better name for them.

Wednesday, May 27, 2009

Late Update

Sorry for the long period of silence. But there hasn't been too much to report. Elle is no longer getting the fligrastim shots, so her white cell count is back up where it should be. She has a lot of energy and is raising havoc 24/7. I think her energy level is surprising the medical staff at Maine Med; they seem to expect her to be sleeping a lot more. She does sleep deeper at night, but she hardly takes naps. Too much to do, apparently.


One piece of news is that I was wrong about the different chemos going forward. I assumed that since we used a vincristine/irinotecan combo at the start, that would continue to be used. But apparently that was just to kick it off. So this upcoming Monday Elle goes back into the hospital for her next round of VAC (vincristine/actinomycin-D/cyclophosphamide) which gave her an 18-hour technicolor vomit marathon the last time. But, that was in part due to the fact they didn't give her any anti-nausea meds when she got the drugs. So this time they should put her on Zofran before it begins and that should hopefully help her somewhat. The upside is that this round doesn't have the long-term nausea effect of the cisplatin/doxorubicin combo. So once she rides it out at the hospital, that should be it for the nausea.


I hope to have another update in the next couple of days about a very special gift that Elle received. So stayed tuned!

Thursday, May 21, 2009

Ride & Rock

On June 6, the 2nd bi-Annual Ride & Rock is going to take place. This is a motorcycle run for charity that ends with a rocking party, also for charity. And this year, the recipient of the latter event is going to be Elle.


The event is organized and run by two wonderful people in Saco, Michael and Christine Paul. For them to choose Elle to be the beneficiary of this is incredibly generous of them both and Beth and I are so thankful to them for what they are doing.


The day itself begins with a motorcycle run that starts at 12:30 in Old Orchard Beach at Jimmy the Greeks', a popular restaurant/watering hole in the area. To join you have to make a cash or food donation to the Saco Food Pantry, which I encourage everyone who can to do regardless of whether you are riding or not. And if you aren't in the area, find a local food pantry and make a donation if you can.


The ride then winds south along the coast to Wells, where there will be a pig roast and burgers stop (that's my kind of stop!) at Torches Pub and Grille from 1:30-3:30. From there, the ride will work north through Sanford and Waterboro before cutting across to Saco. That's when the party starts.


At 5 PM, the music starts up at 172 Flag Pond Road in Saco. You can attend whether or not you took part in the motorcycle ride. There is DJ music from 5-7 PM and then live music from The Local 109 from 7-11 PM. It's $5 per person until 9 PM and then $10 from 9-11 PM. All ages are welcome until 9, but then it is 21+ from 9-11 PM. It will be a lot of fun and if she is up to it, we'll try to get an Elle Appearance at the party.


As for Elle herself, she is doing as well as we could want right now. She is still getting the filgrastim shots, which irritates her to no end. But besides that, she's in good spirits. I'll have a couple of photos and a video up soon as well.

Sunday, May 17, 2009

"Get Well Elle" A Great Success

If you were unable to attend the benefit last night, you missed a good time. Get Well Elle filled Champions in Biddeford last night and at evening's end, we had raised over $3,000 for Elle's expenses. It was just an incredible night and the generosity and kindness from everyone was just amazing.


Thank you to the owner and staff of Champions for allowing us to hold the event there and for being great to everyone all night long. And a huge thanks to Michelle, Emily and Lea for all the hard work they did in arranging the evening. It never would have happened without the all the effort they put into it.


And where was Elle, you may ask? We wanted to bring her in at the start, but her white blood cell count is at its nadir right now. That means big crowds are out for her until the count goes back up. So she spent the night along with Davey and her cousins at their grandparents' house. It was a big ol' sleepover and everyone had a good time.

Friday, May 15, 2009

One Last Note On The Benefit

Several people have asked about buying tickets for "Get Well Elle" tomorrow night even though they cannot attend. If it were more than 48 hours before the event, I would say to just mail the money to the address I posted earlier and just add a note saying you cannot attend. At this point, though, the money would likely get there after the event.


So if you would still like to do this, the easiest thing to do would be to send the money to the bank account we have set up for Elle at Saco & Biddeford Savings. All the money raised for Elle goes to this account, so you're just cutting out the middleman at this point. :) Here's the address:


Power of Elle/Eleanor Paye
c/o Lynne Belanger
Saco and Biddeford Savings Institution
252 Main Street
Saco, Maine 04072

And thank you to everyone who is buying a ticket, has sent a check to her account, has sent her a hat, a nice note or anything at all. All of your support is so appreciated and has just blown our whole family away.

Thursday, May 14, 2009

Couple Of Pics

Not much to report. Elle is doing well but approaching the nadir of her white blood cell count. This usually occurs 7-10 days after she gets her high-level chemo treatments. This is the time you have to keep her out of large crowds and ban anyone with the sniffles from coming within 500 yards of her. It also means Elle gets her Filgrastim shots, and that results in a lot of crying and yelling that stops the second the shot is over. It's an Oscar-worthy performance.


So rather than take pictures of Elle screaming at us and/or the visiting nurse as she gets the shot, here's a couple of happier pictures.



This is Elle and I posing for a picture on the dining room floor using my cell phone camera. It's really the only way to do it, because I have to practically dislocate my shoulder stretching my arm out to get the framing wide enough for the shot. And when Davey saw this, he wanted to take a picture as well.



This one got a little silly. We decided to do a "crazy face" photo. I'd say we met the crazy quota with little trouble.


Also, a reminder that the "Give 'Em Hell, Get Well Elle!" benefit fundraiser/dance/good time is happening this Saturday from 7:00 - 11:00 PM at Champions Sports Bar in Biddeford. The address is 15 Thornton St. in Biddeford and here is a map if you need directions. Tickets are $10 at the door and there will be a raffle for all sorts of neat stuff. I think they have beer there as well. So if you are looking for something to do on Saturday night, come and join us!