How Is Elle?

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

2010-10-13T19:12:00.000-04:00

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.

Frustrating

2010-10-02T07:41:00.000-04:00

Elle just got her latest scans back. The growth of the tumor had stopped everywhere...except for one new part that grew up along the height of her lung.

It's so damned frustrating to see something work once and then take a step back the next. Especially when Elle is still fighting and has energy and isn't giving in.

But if there is an upside, it is that we may (finally!) get to do radiation treatment. We've been pushing for this for months and it looks like we may finally get it. And the idea of embolizing the tumor where possible is also going forward. And we are still going to do the chemo.

In happier news, Elle likes Kindergarten quite a bit! She has been going for about a month now and really enjoys all the art they get to do. She takes it easy and has to rest now and again, but she has fun. Elle is still doing dance as well. And if there is a five-year-old girl already looking forward to Christmas more than her, I'd be shocked.

Please keep Elle in your prayers. And keep your fingers crossed that these next measures get us back on track.

Positive First Step

2010-08-12T10:47:00.000-04:00

We got the news back on the first scan for Elle since she started her new treatment. And the news was positive.

The metronomic chemo dosing, combined with the anti-angiogenic drugs, has greatly reduced the tumor's growth after the first round. In this kind of treatment, that is actually what you want to see. When you start, it still takes time for the newest part of the tumor, and it capillaries, to be shut down. But the treatment seems to be working. They had to measure the scans several times to identify where any growth had taken place at all. So now we start round two and hopefully we see even less growth or possibly a complete halt.

What this has done for now, though, is reopen a possibility to reducing the tumor's size. There is a procedure known as embolization, which is basically identifying a blood vessel that feeds only the tumor and injecting it with a gel that completely blocks the flow of blood. Which, in turn, kills that section of the tumor. If we could use this procedure to reduce the size of the tumor, then even more possibilities could open up. But for now, the focus is on seeing if we can possibly do this.

After months of bad news, to hear some good news was...I don't think "amazing" is too strong of a word to use here. And Elle's appearance and energy have been remarkable. She seems more like old Elle than she has in a long time.

So keep your fingers crossed for more good news. But today is a good day indeed.

Update on Elle

2010-07-07T10:34:00.000-04:00

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

Hard News

2010-04-30T10:57:00.000-04:00

We met with the doctors at Dana-Farber yesterday. Unfortunately, her tumor's size, combined with its location, makes radiation therapy a non-starter. The resultant damage to surrounding tissue would be too great.

We've also exhausted the conventional treatments for PPB. Which means we are now into the more "fingers crossed" types of treatments.

We're starting on Monday with a re-visit to the Etoposide/Ifosfamide treatment she had after the surgery date was canceled in December. That combo actually halted the growth of the tumor. So hopefully we will get a similar result.

There is another treatment called Anti-angiogenesis, which targets the blood supply to the tumor. This would be a combo of low-dose etoposide on a regular basis combined with Celebrex. Yes, it's originally an arthritis drug that got some bad press because of related drugs like it that were causing heart attacks in elderly people. But Celebrex survived, in part because it has shown some promise in cancer treatment in combination with chemotherapy.

And then there are the "Phase I" trials, where a patient is given a new treatment to find out how safe it is and to find the best dose for future studies.

Beth and I decided to pursue the chemo options while also making Elle available for the Phase I trials. Basically, we are leaving no stone unturned.

It was hard to get that news yesterday. You are in a weird place when you are disappointed that the doctors don't want to irradiate your daughter's chest. But I still believe that Elle is going to beat this thing. I can't see another outcome. She is just too damned stubborn.

Back To The Drawing Board

2010-04-26T09:58:00.000-04:00

Elle's latest round of chemo just finished and, unfortunately, the tumor hasn't stopped growing. On the upside, the rate of growth was slowed. And, most importantly, it is still just the single tumor. Even more importantly, Elle is still full of energy and positive attitude.

So there are a few things that could happen now. We could try more chemo. We could go ahead with radiation therapy. There are some Phase 1 trials at Dana Farber that could be investigated. And there is discussion of a possibly biopsy. Apparently, in extremely rare cases, the type of cancer can change. So there are still a lot of options and choices on the table.

It's another disappointment, but actually better than the last couple of times. But in the end we will beat this thing. Elle simply won't allow any other outcome.

Here she is, showing off a very blue tongue after eating a very blue Fruit Rollup.

Walking for Elle

2010-04-10T21:46:00.000-04:00

My sister-in-law's sister-in-law, Michelle Harlfinger, is doing a charity walk in Massachusetts, the 11th Annual Champions Fighting Cancer Walk. She is graciously and wonderfully walking for Elle. So if you can give little, please visit her page. Because everyone should be able to get the care Elle is getting.

Thanks, Michelle!

Keepin' On Keepin' On

2010-03-31T21:29:00.002-04:00

Well, the unfortunate news is that the last round of chemo did not reduce the tumor. It actually grew some more. That was very disappointing to say the least. What made it bearable at some level is that Elle continues to have a ton of energy and vigor. She is chasing the cats, demanding that books be read to her and eating hamburgers like it was going out of style.

That said, we have another chemo combination to try. We are introducing a new drug here called Vinorelbine. It is related to the Vincristine that Elle has received so many times. You may be asking "What makes it different?" I really don't know, to be honest. But we are combining it with our old friend Cyclophosphamide, but in a pill form and in a lower dose.

So why use a drug that didn't work the last time we used it? Apparently there is an emerging body of literature that suggests that combining it with the Vinorelbine can be effective against cancer types like Elle's. It's like drinking gin. You mix it with chocolate milk and it tastes like crap. But mix it with OJ and you have an Orange Blossom. The gin isn't any different, it just works better with something else. Obviously, we're hoping that this is the Orange Blossom of chemo treatments.

The other good thing for Elle is that this treatment takes relatively little time each day. The Vinorelbine is a push through her line and the Cyclo is in the aforementioned pill form. It will take all of 10-15 minutes each day for her to get the treatment at the clinic. This pleases Elle immensely.

There may be some form of chemo next week as well...that has yet to be determined. But we now have another plan and we are forging forward.

Just a Pic

2010-03-09T10:45:00.000-05:00

Elle enjoys frosting!!

Surgery Is Off

2010-03-01T19:42:00.002-05:00

Unfortunately, the Temodar/Iriniotecan treatment did not work. In fact, the tumor slightly grew again. Combined with the fact it grew in a place close to major vessels that supply the heart with blood, the surgeons feel that surgery isn't possible at this time. Until it shrinks in size, they wouldn't be able to remove all of it. And with the long recovery time, that would just allow what was left of the tumor to grow once more.

So it's another round of chemo. We are going to back to one of the VAC drugs, Cyclophosphamide, and a new one called Topotecan. Hopefully, these will restart the shrinkage of the tumor. And we are now discussing radiation treatment as well.

This is very disappointing to say the least. But Elle is still unflappable in her attitude and that helps quite a bit.

One other thing; if you can, pray for her. And ask your friends to do the same. I think that the power of prayer and positive thoughts is always something worth tapping into.

Elle Update

2010-02-12T10:04:00.003-05:00

Elle's schedule has been changed a little. She is currently doing another week of the Temodar and Irinotecan. She may do one more week of Irinotecan. But she will now get her scans on February 23. And from there we'll decide what the next step should be.

Through all of this, she has been...awesome. Full of life and fire, you wouldn't know she was on chemo if not for the bald head and line coming out of her chest. She has been going to dance, chasing the cats, jumping on my back in sneak-attacks...and more. This video isn't the greatest quality (the lighting was lousy), but you should be able to make out the Dancing Elle on her bed. Enjoy!

Quick Update and Photos

2010-01-27T10:41:00.006-05:00

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...

Massively Tardy Elle Update

2010-01-15T11:13:00.000-05:00

My apologies for the month-long absence of news. Holidays kick in and its like you completely lose track of time. So here's what we've been up to.

Elle finished the round of chemo with Etoposide and Ifosfamide. The result from the scans were that there wasn't any real shrinkage of the tumor. BUT, it did halt it's growth and stop it from being active. The PET scan showed the mass as a gray color, which denotes a lack of cellular activity.

So with that, and after a three-week rest period, Elle has begun her next round of chemo. Our old friend Irinotecan is back for a three-week stay (one bag by IV five days a week, with a week-break between weeks two and three). And for the first week she has been taking an oral chemo drug called Temozolomide. Now, if you look this up you will see that it is primarily used for brain tumors...

Elle does not have a brain tumor.

This drug is good at interrupting DNA growth and triggering cell death. So hopefully it will do the same with Elle's tumor. I would guess once the irinotecan ends we'll have a break and then another set of scans. So fingers crossed and all that.

As for the tumor and future surgery...we're essentially on standby with Children's. The surgeon has given the oncologists a size for the tumor at which he would be comfortable in performing the surgery. Once we hit that size, we go down. No waiting around.

So, besides all the medical stuff, Elle is still a ball of fire. Running around, ordering us to do things, dancing, singing, occasionally delivering a forearm shiver to my nose...she does it all. She and her brother had a great Christmas. Elle turned five on January 10 (Davey turned eight on December 20) and enjoyed a celebratory lunch at Bugaboo Creek with the family. And yes, pictures will be forthcoming. And much sooner than a month from now.

New Chemo

2009-12-16T12:16:00.007-05:00

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?

Regrouping

2009-12-14T21:38:00.004-05:00

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.

Surgery Called Off For Now

2009-12-08T20:42:00.000-05:00

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.

Surgery

2009-12-03T11:34:00.000-05:00

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.

Nutcracker

2009-12-01T20:57:00.004-05:00

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

2009-11-24T11:33:00.003-05:00

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.

In And Out

2009-11-23T11:55:00.002-05:00

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.

Next Chemo Round

2009-11-17T14:48:00.003-05:00

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.

LEAVES!!

2009-11-09T11:24:00.003-05:00

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.

Who Is Elle Rooting For In The World Series?

2009-10-26T14:08:00.003-04:00

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!

2009-10-26T10:56:00.001-04:00

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

Home From Chemo

2009-10-24T21:13:00.002-04:00

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.

Still No Chemo

2009-10-16T10:26:00.000-04:00

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.

No Chemo Until Tuesday

2009-10-08T10:30:00.000-04:00

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.

Scans And VAC

2009-10-04T08:13:00.002-04:00

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.

Quick Pix, Part 2

2009-09-23T11:31:00.003-04:00

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!

2009-09-15T11:40:00.004-04:00

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

2009-09-08T21:59:00.004-04:00

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

2009-09-02T11:16:00.004-04:00

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!

2009-08-28T07:29:00.004-04:00

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

2009-08-24T14:57:00.006-04:00

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...

Back Home

2009-08-12T13:10:00.002-04:00

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.

Next Round Starts Tomorrow

2009-08-09T15:38:00.003-04:00

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.

Elle The Transformer

2009-07-30T21:34:00.004-04:00

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.

Going To Boston...For Fun!

2009-07-25T08:00:00.002-04:00

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.

Good News

2009-07-17T13:01:00.000-04:00

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.

Scans Are Done For Now

2009-07-15T10:44:00.002-04:00

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.

Scans: Day One

2009-07-13T07:44:00.003-04:00

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.

Back Home

2009-07-10T10:55:00.002-04:00

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.

Tomorrow Is Go

2009-07-06T20:57:00.002-04:00

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.

No Hospital On Monday

2009-07-05T20:27:00.003-04:00

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.

Elle...Parade Princess

2009-07-01T14:09:00.005-04:00

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!

Picture Time

2009-06-24T10:43:00.007-04:00

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.

Not Much To Report

2009-06-21T20:57:00.002-04:00

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.

The Week In Review

2009-06-13T19:33:00.003-04:00

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.

Oh What A Day!

2009-06-07T20:25:00.013-04:00

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.

Busy Weekend

2009-06-05T09:52:00.002-04:00

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.

A Special Package

2009-06-01T10:58:00.005-04:00

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.

Change Of Schedule

2009-05-31T20:29:00.004-04:00

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.

Word For The Day

2009-05-28T10:33:00.001-04:00

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.

Late Update

2009-05-27T10:29:00.001-04:00

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!

Ride & Rock

2009-05-21T13:22:00.000-04:00

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.

"Get Well Elle" A Great Success

2009-05-17T21:42:00.002-04:00

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.

One Last Note On The Benefit

2009-05-15T10:00:00.003-04:00

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.

Couple Of Pics

2009-05-14T16:43:00.002-04:00

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!

So Where Are All The Updates?

2009-05-12T09:05:00.002-04:00

You know you've been asking that question. Rest assured, everything has been fine.

Beth and I attended a friend's wedding over the weekend and my parents were gracious enough to watch the kids in our absence. We left on Friday morning and returned last night. And during that whole time, Elle and Davey were...wonderful.

They played a ton and behaved themselves perfectly. Elle took her Zofran and didn't have a single episode of nausea. She didn't need any pain medication. All she did was bounce around all weekend with the energy dial on 11. It couldn't have gone any better.

So right now Elle has a couple of weeks off from chemo to recover from the potency of the doxorubicin and cisplatin. She also has to get some filgrastim shots to boost her white cell count back up. But she is still doing great. As always, no news is good news.

Back Home

2009-05-07T13:31:00.002-04:00

Elle is back home after her latest round of chemo. And while she is happy to be here, there is the unfortunate side effects of her chemo to deal with. Specifically, all the barfing.

For the next couple of days, Elle will be throwing up. Not non-stop, but more than anyone would want to do. Last night was rough b/c we got home late and the pharmacy was closed. So all we could do was use Benadryl to try and calm her stomach. It didn't work too well; she threw up about every 90 minutes.

This morning at the crack o' dawn, I went to the pharmacy and got her prescription filled for an anti-nausea drug called Zofran. It's designed to battle this kind of nausea. Sure enough, Elle went three hours after taking her first dose before she threw up again. And she seems more relaxed and comfortable. So hopefully this continues and Elle can try to eat something light.

When she isn't throwing up, she is in a pretty good mood. It is just incredible to see how upbeat she is after getting a one-two Punch of Doom like Doxorubicin/Cisplatin. Even after throwing up she smiles at me and then takes a sip of her juice. The kid is a trooper.

Not So Easy

2009-05-05T12:34:00.001-04:00

Yesterday Elle went to Maine Med for her round of chemo involving Doxorubicin and Cisplatin. These two chemo drugs are heavy hitters; they can make you feel awful and lay you out. They both present their own dangers if not flushed out of the system; Doxorubicin can affect your heart and Cisplatin can damage your kidneys. Both can cause some nasty vomiting. And the doxorubicin is red...the stuff just looks alien and evil in the IV bag.

So this is not going to be an easy one for Elle. There are some good things, though. First, she has a double line in her chest. That means they can give her the chemo and flush her system with an IV drip at the same time. Usually, they have to interchange between the chemo drug and the IV flush. This way, both happen at once and it keeps the levels of the two drugs from getting too high and it shortens the overall time. Second, she slept through the first part last night, so that will cut down on her overall "feeling bad time." And third, they gave her an anti-nausea medicine that is steroid-based but completely safe (believe me, I asked!) It makes her hungry and a bit moody, but really seems to be controlling her nausea.

So right now she is in her room. I left her with Beth, eating a cup of Jello and watching television. Which is about as good as she can be doing at this point. She'll be there all day and tonight to keep flushing the chemo drugs out of her system, and then she is supposed to come home tomorrow.

Reading what I wrote at the top...these two drugs are rough, but they are also very effective. Doxorubicin has been around almost 30 years and is the genesis for a new class of anthracycline antibiotic-related drugs that may be useful in cancer treatment. Cisplatin has been around almost as long and is a cornerstone drug in treating numerous types of cancer. It absolutely sucks that we have to pump this toxic stuff into Elle...but it gives her the best chance to beat this.

Visiting With Uncle Eirik

2009-05-02T21:40:00.003-04:00

The big deal this weekend was my cousin Eirik and his girlfriend Tanya coming up to Maine to visit the family. Elle was thrilled her "favorite artist" was visiting and it didn't hurt that Tanya brought her a sweet treat.

That is a handmade box, inside of which resided some tasty jellybeans. And that happens to be Elle's favorite candy. So to say that Tanya and Elle became fast friends would be an understatement.

It was a great visit and we all had a blast. Today was drinking Shipyard beer, grilling up some streaks and telling some funny stories. And Elle is still in seventh heaven tonight after the visit. Davey as well; he wants to be "a moviemaker" when he grows up and with Eirik being an animator at Nickelodeon...the word "hero" may be too tame.

Special Gifts From Uncle Eirik

2009-04-29T11:29:00.005-04:00

I have been promising to post these pictures for a while. Forgive my tardiness, but here they are.

First, a little background. My cousin Eirik is an incredible artist/animator/sketcher/creator of visual things. He's awesome at it. Anyway, he works for Nickelodeon on one of their big properties, "The Fairly OddParents." Which is very watchable as an adult even as your kids appreciate it on another level.

He sent Ellie and Davey a package FULL of Nick stuff. They both got water bottles, notebooks, magazines, games...it was generous beyond measure just for that. But Eirik included two special things.

First, there was a doll of Poof. Poof is the baby fairy on "The Fairly OddParents." Elle squeezes this thing to death on a regular basis.

Pretty awesome, isn't it? We also received this:

That is a sketch of Dora and Boots from Jeff Degrandis, the director of "Dora." It's an amazingly generous thing for him to do, both for Eirik and Elle, and we cannot thank him enough. She loves this picture. We are currently getting it framed for her room.

So thank you to Eirik, Jeff Degrandis and Nicole LaGrotta, who helped Eirik get all the items for the massive care package that arrived on our doorstep. Elle (and Davey) loved it all.

Elle Dances!

2009-04-26T21:12:00.002-04:00

It was a good weekend for Elle. My parents came up to visit and Elle made sure to get all she could out of Grandma and Grandpa. Much attention was spent and love was given. There was also some Martel's ice cream and a trip to the Clambake involved.

But the highlight was later today when Elle tried on her dance recital outfit and danced to some records (yes, real vinyl!) This video clip is her last dance to The Beatles. It's in Quicktime so if you don't have it and can't view this, trust me when I tell you it is cute beyond measure.

We Got Hats!

2009-04-23T21:19:00.006-04:00

Today's hat photos are courtesy of the wonderful people at the Surgery Center Of Fairfield County in Connecticut. We received from them a box full of hats for Elle. All of which she tried on and modeled for us. If I had taken a photo of all of them, this page would run on for five minutes straight. So thank you very much to our Facebook friends, and here are a couple of photos for your enjoyment.

This is for the beach. She wears the sunglasses everywhere, inside or out, rain or shine.

Every girl loves Hannah Montana...

This is more for those times in the garden. Elle is already planning the many flowers she will plant (and pick) as planting season approaches.

Things Are Well

2009-04-22T21:15:00.003-04:00

Nothing much to report right now. Elle had her vincristine push on Monday and is handling it rather well. Usually, she gets tired/cranky for a couple of days after. But this time she has been pretty chipper. The doctors said that after a while that kids adapt to some extent to some of the chemo meds. Since vincristine has been the most common med Elle has experienced, that may explain her good demeanor this week.

The most pressing issue this week so far is what kind of ice cream Elle wanted at Martel's. The decision was chocolate.

I have some more pics coming up soon. Not only of hats, but of some very generous gifts from Elle's Uncle Eirik and the good people at Nickelodeon (where he works).

Fundraiser For Elle

2009-04-20T21:16:00.003-04:00

Another good couple of days for Elle. Lots of playing and eating followed by sleeping all night. Can't ask for more than that.

The real news today is to talk about a fundraiser for Elle. It has been put together by Beth's sister Emily and Emily's sister-in-law Michelle. And we cannot thank the two of them enough for all they are doing.

The event is called "Give 'Em Hell - Get Well Elle!" It will be held May 16 at Champions Sports Bar in Biddeford from 7:00 - 11:00 that night. Tickets are $10 and can be bought one of two ways. You can either send payment for tickets to:

Or they can be bought at the door the night of the event. The address for Champions is:

The location of Champions, and directions to the bar, can be found here.

Not only will it be a good time, there will be plenty of raffles for goods and services donated by local organizations.

So if you are in the neighborhood or were looking for a ready-made excuse to visit southern Maine, here's your chance!

No News Is Good News

2009-04-18T20:45:00.002-04:00

Sorry for the long delay...but not much has happened. Elle is doing well. The "tired time" that comes after her treatment has come and gone and she is up and about all day. Of course, then she crashes at night.

Today we had lunch at Friendly's. Elle had the cheeseburger sliders and a Shirley Temple supercharged with about a pound of sugar. Davey ate what looked like half a fried chicken and a coke. Elle likes the sliders because of that Billy Mays commercial for the Big City Slider Station. She knows that thing by heart.

Right now the only thing coming up is her next vincristine push on Tuesday (monday is Patriots Day in these parts and the center is closed). So I think the next couple of days is just time to relax.

One other thing; Elle has discovered Annie. I am guessing every female 35-and-under knows what this means.

Tired/Elated

2009-04-14T10:14:00.000-04:00

I was with Elle yesterday when she had to go to the clinic for her Vincristine push. The real downside to this med is that she gets tired. And sure enough, later in the day she was cranky and sleepy. But that passed (somewhat) and she was able to fall asleep rather sweetly and zonked the whole night.

The really good news is that the initial rounds of chemo are doing their job. Her doctor said that the mass on her lung had "noticeably shrunk" from the chemo we have done so far. That doesn't mean it's almost gone. What it means is that the shrinking of the tumor is visible from just looking at it. I couldn't tell you how much or anything like that. But the doctor said he would measure it and let me know next time.

The other really good news is that there has been no spread of her cancer outside of the initial area. As before, this means the chemo drugs are working and the decision to add the Vincristine/Irinotecan combo to the treatment schedule was the right one. In a very real sense, Elle is breaking new ground here. PPB is so rare that there is no set protocol for its treatment. It's really scary...hell, it's terrifying knowing that your little girl has a form of cancer that doctors still don't know a lot about. And yet it's inspiring as well, knowing that Elle's fight and eventual success could lay the groundwork for another child beating PPB.

In so many, many ways, she is a unique and special girl. And I am just so damn proud and humbled at the same time (if that is possible) that I am lucky enough to be her dad. And the way that Davey has treated his sister and has been there for her...we're twice-blessed.

Easter Fun

2009-04-13T10:30:00.004-04:00

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.

Overnight

2009-04-12T07:34:00.001-04:00

The big fun Friday night was Elle and Davey staying overnight at their grandparent's house down the road. They both had a great time. Elle and her grandmother (aka Nana) stayed upstairs on the bed while Davey and his grandfather (aka Bing) slept downstairs in the television room and had some kind of pillow fight.

This was great for Elle because it's the first time she has spent a night away from the house that didn't involve going to the hospital. And it went off without a hitch.

Yesterday was another good day. Lots of chattiness and laughter. She's had a few good days in a row. Hopefully that will continue after her vincristine dose tomorrow. Of all the meds, this is the one she tolerates the best.

But that is balanced out by the fact that her bones ache and she gets tired quite easily. Even on the good days, she has to rest a lot and she needs the medicine so the aches fade. That's the baseline, in a lot of ways. So when that (if you can use such a qualifier) is all there is, that's a great day for her.

Elle's Outfit

2009-04-10T14:35:00.006-04:00

I just had to talk about this.

Beth had picked out a very nice outfit for Elle the other day before we went out. A blue-striped dress that had the coloring reversed on some leggings. It was very cute. And then Elle got into the act.

We got some head-gear from our Aunt Deb, Uncle Carl and our cousins Jessica and Rebekah in Michigan (thanks, guys!). Elle has taken to one particular hat. She then broke out her fuzzy pink Dora vest and some new Crocs that are pink and white with pink fur and Princesses on the top.

So first, here is the closeup...

Followed by the full-shot...

I called her "My Little Cossack" because, as you can see, she had the style down.

Elle's is a much cheerier Cossack, though. Spreading laughter and love instead of mayhem in 19th century Europe.

Oh, and she hasn't lost her hair yet. She just really likes that hat.

Great Day!

2009-04-10T09:57:00.000-04:00

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.

Adjustments

2009-04-08T22:56:00.002-04:00

Elle does not like her shots of Filgrastim. Doesn't like the numbing cream. Definitely doesn't like the needle.

It's the latest addition to Elle's chemo regimen. As I was saying before, the VAC (thanks to the cyclophosphamide) knocks her white blood cell count down. The Filgrastim boosts production and gets them back up. Of course, explaining the importance of this to a four-year old is somewhat difficult. Thankfully, the visiting nurses are doing it the next few days. But sooner or later, Beth and I have to do it.

Elle was really tired today and her bones hurt (another side effect). But her grandparents brought over a little Mint Chocolate Chip from Martel's, which really made her day. And since I worked from home today, she and I were able to do some painting together.

It's not going to be easy for Elle, but she is trying her hardest. Sometimes it overwhelms her. But she always comes back.

Back Home

2009-04-07T23:24:00.002-04:00

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

2009-04-06T18:35:00.005-04:00

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

2009-04-05T19:38:00.010-04:00

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.

All Is Well

2009-04-04T19:55:00.004-04:00

No stories to tell. Appetite is good. The next big thing is her trip to the hospital on Monday for her next dose of chemo. That will be an overnight trip. The actual time getting the drugs is short; the bulk of the time is spent with an IV flushing the chemicals through your system so they don't collect in your kidneys.

Sorry there isn't more to tell. But in some ways, that is a very good thing.

Nothing New To Report

2009-04-03T19:11:00.003-04:00

Another good day for Elle. Cereal for breakfast and sides of ham for lunch. But we faded at dinner time and barely touched our treat: I-Hop pancakes. But we did make a banana smoothie this afternoon, which has become our new, favorite drink.

We get more packages every day. More hats and other treasure. Pictures are coming soon, I promise.

There is one story to tell. Elle has long hair. As it falls out, it has this very annoying trait of tangling up with other hair and creating a matted mess. Well, one of the these groupings of hair (healthy and otherwise) was annoying Elle. So did she call us to untangle it?

Of course not! She just reached up and ripped the damn thing out. Damn the pain and the visual of a wad of hair in her hand. She saw a problem and directly solved it. Gotta like that kind of attitude going forward.

Elle's Big Day

2009-04-02T20:13:00.002-04:00

Not big as in "went to the moon and conquered the Moon People" (thought that would be pretty cool). Big as in "went to her grandparents' house and played with her cousins and brother outside for three hours."

She really packed it in. Swinging, running around, blowing bubbles...Elle did it all. Of course, at the end of it she was really tired. But that is going to happen no matter what; she'll always be tired by day's end. The measuring stick is how she does during the day. By that standard today was a home run.

When we got home, a special package from her Uncle Eirik was waiting. I'll post some pics later of her presents, but she loved them all. And Davey was thrilled with the stuff Eirik sent for him as well. Way to go, Viking Man! She also got a special hat from Grandma and Grandpa Paye, which she adores and put on right away. Pics are coming of that as well.

Now she's settling into bed with our latest DVD - Barbie Thumbelina. I'm glad she loves them so much, but they're turning my brain to goo little by little.

Visting

2009-04-01T20:24:00.002-04:00

Elle took her first out-of-the-house trip today since she came home. Just a quick jaunt over to her grandparents' house, but she had a good time and did well. She painted and snacked on Cheetos. She was also given a mountain of presents.

Her hair loss has accelerated (the vincristine's hair-loss side-effect is really kicking in now). When her grandmother noticed, Elle told her "I am going bald. But Daddy will be bald to so I won't be lonely."

I'm guessing that no later than the end of April, both Elle and I will be rocking the chrome dome look. And I will be sure to post photos. She will still be the cutest thing on two legs. Me...I can't make any promises.

Pictures!

2009-03-31T10:54:00.003-04:00

First, Elle doing the Sprinkler...

And now...hats!

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

Hair

2009-03-30T21:06:00.002-04:00

Elle's is starting to fall out.

It isn't obvious if you have never met her before. But if you know Elle, then you can tell she is losing her hair. It's only going to accelerate as she starts the next phase of her chemo next week, a triple drug dose called VAC (Vincristine, Actinomycin-D and Cyclophosphamide). That one also marks her first visit back to the hospital. While the VAC is a push through her line that doesn't take too long, the toxicity of the dosage means she needs a lot of fluids to flush it through her system. It's only an overnight, but it's a tough one.

Today was tough as well, just for her Vincristine push. She was a little more tired than before. She is still pretty happy and her appetite was excellent today. But the truth is that, as I wrote before, we are giving her toxic chemicals to destroy something that is even more toxic in her body. That will wear down anyone. What we have going for us is that she's a tough four-year old who fights every step of the way. You couldn't ask for a better profile than that.

Beth took some pictures today and I will try to get a couple up on here soon.

Guts and Glory!

2009-03-29T20:15:00.002-04:00

That is what Elle has been yelling around the house today. Followed up by "Never give up!"

I have no idea where she heard this. It may have been from her copy of Peter Pan (the live action film from 2003) or maybe she cobbled it together from random bits of dialogue from various films and shows. Whatever the case, I think she has found her motto.

She also socked me in the eye (if you can call it that from a four-year old) this morning after I said she had to change into pants and a shirt if she wanted to wear a costume. Later she apologized thusly:

"Daddy, I'm sorry I punched you in the eye. You should have blocked it."

She makes it hard to be stern sometimes.

She had a great appetite today as well. Waffles for breakfast and ham for lunch. Now it's a good night's sleep before our Vincristine tomorrow.

Lazy Saturday

2009-03-28T22:57:00.002-04:00

It was a day of Very Little Happening.

We watched television. We painted and colored. Elle did get a new hat, and I will be starting to post hat pictures in the days ahead.

Elle is happier without that tube in her. She is much more comfortable and that translates into a better mood.

Tonight she is enjoying some solid sleep. You know, the kind where their eyes are half-open but you can wave a hand in their face and they won't wake up? Elle does that all the time.

Tomorrow we plan on doing much of the same.

No More Chest Tube

2009-03-27T20:19:00.004-04:00

Another piece of good news today. Elle went in to see her doctor and her chest tube came out! The fluid was down enough that they feel any more that gets produced she'll be able to absorb and expel on her own. We just have to keep an eye on her suture for a couple of days to make sure it heals properly. And there will be some follow-up scans to make sure the fluid isn't pooling up again. But that isn't expected to happen.

The various fish restaurants are opening again up here for the weekend. And so we got some seafood for dinner. Elle asked for fish and chips, which surprised all of us. But I'll be damned if she didn't tuck into those pieces of haddock. She scarfed them down and demolished a decent amount of the fries as well. Now she's in bed and once again covering her doll in tape and 20 pieces of gauze.

Nothing else is really happening until Monday when it's time for Elle's next dose of Vincristine. So it should be a relaxing weekend for once. You have to grab the quiet moments when you can.

Nurse Elle

2009-03-26T20:20:00.002-04:00

Today was a really good day for the wee one.

She ate a hearty breakfast and lunch. She colored and played. She helped the visiting nurse with her lines. And then she scored the motherlode; a small treasure sack from the visiting nurse with extra medical supplies like gauze and tape and gloves.

Nurse Elle has since taken to making her baby feel better. She has gauze held in place by patches on her boo-boos. She has been cleansed with many alcohol wipes. And medical tape covers her head. I'm not exactly sure why that is, but Elle seems to think it is helping her doll. She is in bed, right now, continuing to administer her special brand of care to her doll.

Tomorrow at 11 Elle sees her doctor about her chest tube. Fingers crossed but her fluid production is so low now I think the chances are good it can come out.

Changes

2009-03-25T19:19:00.007-04:00

We have a new diagnosis.

This isn't entirely unexpected. Both Beth and I knew that the rhabdomyosarcoma diagnosis wasn't 100% sure. But we didn't want to tell anyone that because we figured it would be too much to have everything up in the air for that long. The other reason being that the new diagnosis is almost exactly the same as the original diagnosis. In fact, these two cancers can only be differentiated in their basic genetic code. (Update: After reading this, what I said isn't entirely accurate. The two types do share a common genetic pathway. I don't know if that means they're exactly the same.)

Elle's cancer is officially pleuropulminary blastoma. It occurs in and around the lungs. It's also quite rare; only 10-25 cases per year are diagnosed in the United States.

Luckily for us, our doctor at Dana-Farber is the doctor to see for this kind of cancer. As in, out of a global population of six billion, he is the one you want to see your child when they have PPB.

Better yet, he and our doctor at Maine Med know each other quite well and were already working together on Elle's case before our referral. I can honestly say that between our two doctors, I know with 100% certainty that Elle is getting the best treatment possible.

Now, the good news and bad news. Start with the bad...in treating PPB, the best way to have an optimal result is to remove the lung. And not just the lung but the lining and wall around the lung. So regardless of how well she responds to chemo, the lung is being removed. It's just a matter of when.

It sounds bad, but in reality it isn't horrible. She will be able to live a completely normal life with one lung. Short of being an Olympic marathoner or deep sea diving without a oxygen tank, Elle will be able to do anything. We (and she) will just have to be vigilant in avoiding the flu and pneumonia. And she absolutely will not be able to smoke.

Now the good news. The chemo regimen for PPB is not as extensive and toxic as the one for rhabdo. And instead of a 12-month cycle, it's a nine-month cycle. And her hospital stays will be fewer days at a stretch.

Also, it appears (everyone knock on wood) that Elle is responding very well to her vincristine and irinotecan sessions. Her lung apparently sounds better than it has before. And her fluid output is down even more. There is a good chance (knock wood again) her chest tube could come out tomorrow.

Oddly, I almost feel relieved by this. Now we know for sure what we are up against. And Elle has been kicking ass so far and I have no doubt she'll continue to do it.

We will beat this. The diagnosis just gives us a name to dance on when Elle wins.

Funny story: At Dana-Farber, our doctor's assistant has given up potato chips for Lent. Elle was eating some chips and the doctor suggested that she offer his assistant a chip. As a joke, of course.

Elle offered her the chip. When she turned it down and we all chuckled, the doctor said he would take it.

Elle locked him with a look and extended the chip. As he reached for it, Elle closed her hand around the chip, shook her head, and crushed it in her hand. Then she ate the crumbs.

And the doctor fell in love with her. Just another convert falling to the Power of Elle.

Tiny Dancer

2009-03-24T20:33:00.003-04:00

One thing Elle loved to do prior to her diagnosis was dance. She goes to classes at a local dance studio and takes it all quite seriously.

Today she decided she wanted to go back. And so there she was, in leotard and tights with a chest tube securely pinned to her clothing. And she danced too, even after her teacher begged her to sit down and take a rest. I think she missed it.

The best part though, relayed to me by Beth, was what happened outside of class.

There is a vending machine that stands outside of the dance studio in the hallway. Elle was looking at it and Beth asked her if she wanted something out of it after class. Elle studied the machine and decided on a bag of Cheez-its. Beth agreed to get it after the class.

"No," Elle said, "you have to get it now. There is only one left."

Beth looked across the hall and told her there were plenty.

"There is one," Elle said, "and if you don't get it, someone will steal my Cheez-its." With that she turned and went into class.

Beth looked over at the machine again and then slowly walked over, just to make sure there were, in fact, plenty of Cheez-its.

There was one bag left.

Beth bought the bag and put it in her purse. After class, when the children came out, Elle proceeded not over to Beth but to the vending machine. She looked at the empty slot where the Cheez-its once stood. Then she turned and fixed Beth with a most murderous glare. She raised her arm and pointed at Beth.

"I told you to buy the Cheez-its! SOMEONE STOLE MY CHEEZ-ITS!"

At this point, Beth took the bag out of her purse to show it to Elle.

"Oh," was all Elle said. She then walked over, took the bag, thanked her mom and they went to the car.

Kid has attitude and fire to spare.

Chemo: Round 2

2009-03-23T21:47:00.002-04:00

So Elle got her Vincristine today. According to Beth, she tried to do it herself. While her doctors love and encourage her feisty spirit, they don't encourage it that much.

After that it was a visit to her surgeon who thinks Elle may be able to remove her chest tube on Thursday. That would be a very good thing indeed.

My sister and her daughter Maya were over again today. Elle and Maya had a blast today with painting and watching movies. While that was going on I went back to work for the first time in about two weeks. I had been working from the hospital/house. It's odd going back after all that time. But it was nice too; there's something to be said for the regularity of work and how it occupies the mind.

Tomorrow is another day of work and then we bring Elle to Dana-Farber in Boston for her official second opinion on Wednesday.

It's All Relative

2009-03-22T21:45:00.003-04:00

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.

Hospital Visit

2009-03-21T19:13:00.002-04:00

One of the protocols with a young cancer patient on chemo is that, when their temperature goes over 100.5, they have to come into the hospital. They are given a mega-dose of some antibiotic that could wade into a petri dish full of bacteria and live while their blood is worked up. That is so any possible bacteria-based illness is cut short.

This morning we took Elle's temp, and it was 101.5 in both ears. Now, she wasn't acting sick. She was painting while I took the reading. But you always follow the protocol. So it was off to Maine Med and a four-hour stay in an ER examination room.

She was given the antibiotics and the blood work was done. Turns out her labs were fantastic. Her white blood cell count is actually higher after a round of chemo, as if her body watched it work and said "Step aside, junior, and watch how the pros get rid of cancer." Her red blood cell count is solid. They took a chest X-ray and her right lung looks even better. And her temperature when we left? 98.6 on the nose.

We don't know why her temp was so high this morning. As far as we can figure it may have been b/c she was sitting by the window with the sun streaming in and maybe that heated up her ear somewhat. But the bottom line is we're all back home, she ate some pizza for dinner and is now watching DVDs in her bed (one guess what it is).

So, it was all good news. But what a hell of a way to get it.

Good Friday

2009-03-20T20:26:00.003-04:00

Today we colored. Pasted fuzzy balls to paper. Watched more Barbie DVDs. Ate chocolate.

We even un-clamped our line when Daddy had to flush it out. Because we all know how forgetful I am when it comes to that.

And once again we drew our own blood for the visiting nurse. She truly has an iron will.

But the big deal today was hats. Oh, the hats are beginning to come rolling in.

I don't remember if I mentioned it here, but I told people that I would like to collect hats for Elle once her almost-certain hair loss from the chemo begins. Hats from wherever people happen to be. Sports hats, regional styles...what have you.

Well, we've gotten a few in the past two days. And I was thinking we would try to have Elle show off her hats and then post the pictures, as long as she would let us take a picture of her.

Today Elle was very amenable to the idea. And so we have our first hat display. It was sent to Elle by my wife's close friend Henley, her husband Shaun and their daughter Lamira. They live in Texas, and you know what kind of hat they like to wear in Texas...

We think it fits her very nicely.

Flushing The Lines

2009-03-19T19:19:00.005-04:00

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.

Visiting Nurses

2009-03-18T18:55:00.003-04:00

Today was our first visit from the VNA (Visting Nurses Assn.). They'll be coming here about 2-3 times a week unless Beth and I collapse into quivering masses of ennui and they decide to come every day. But since that isn't an option, they'll stick to drawing the blood samples and changing the dressing on Elle's central line while we deal with flushing the lines once a day and draining her fluid bulb.

The one we had today was great, engaging Elle in the process. She even helped the nurse draw her own blood, which I place in equivalence with Rambo cauterizing his own bullet wound with gunpowder and a flaming stick in Rambo III. Would you draw your own blood? No thanks.

Elle spent most of the day on the couch, but she did color and play while sitting there. There are days she'll have energy and days she won't, and this was one of the down days. She was able to keep down some McDonald's hotcakes and sausage for breakfast, which was great since her nausea only seems to come around that time. And she had lots of milk, juice and soup during the day. I conned her tonight into believing that milk and Ensure mixed together is just another kind of milk. Or maybe not; she gave me the stink-eye as she drank it.

The only chemo she has for the next week is a vincristine push on Monday. So this is pretty much downtime for Elle, short of the weeks that she has no chemo at all. And the bathroom-visiting properties of the irinotecan should fade in a day or two. Then the main concern is a lowered white cell count, which means anyone with coughs and/or sniffles is turned away at the door.

Home

2009-03-17T21:48:00.002-04:00

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.

Improving

2009-03-16T18:56:00.002-04:00

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.

Outside

2009-03-15T20:36:00.003-04:00

Today was a big day for Elle. After another dose of Irinotecan (the fourth of her first five-day cycle) and a healthy round of coloring pictures (most of which related to her new favorite DVD - Barbie and the Diamond Castle), Elle and I, along with her mom and Elle's favorite doctor (Dr. Katie - a great 4th-year resident who has a natural rapport with kids) went for a walk outside!

Maine Medical Center is built on a hill in Portland overlooking the Fore River where it empties into Casco Bay. That part of the hill is called the Western Promenade and it is a beautiful place to walk with a lot of old houses. The view...well, if you like watching planes take off it's not too bad. The river is nice, but you also get an eyeful of the fuel depot in South Portland.

We walked to a bench on the Western Prom, no more than a quarter-mile from the hospital. And Elle was a real trooper; she walked most of the distance. I carried her now and again but she wanted to walk most of it. And that is important because it works that right lung of her that was compressed for so long.

I don't think I ever went into why we came in originally. Elle was having trouble breathing and the X-ray showed that her right lung was essentially compressed into a small useless ball by a god-awful amount of fluid. Fluid we later found out was the by-product of the cancer. There was so much fluid that Elle's bronchial tube and heart were pushed from their proper center position into the upper-left part of her chest. Her attending doctor said that if you or I had that much fluid in our chest, we'd be dead.

Elle wasn't because kids have an amazing ability to adapt. The fluid had been building up for a period of months and her body simply worked around it until it couldn't any more.

Now that the fluid is being drained off (and the chemo should limit, and hopefully eliminate, future production), that lung is learning to work again. But it takes time and usage. So every time Elle goes for a walk, that lung gets stronger and stronger. So hopefully as the weather improves there will be more walks on the Prom in Elle's future.

The other big thing for Elle was her first blood transfusion. This is necessary because chemo slows down the production of new blood cells in the bone marrow. And since Elle is usually slightly anemic to begin with, it hits her a little harder. So every now and again chemo patients get a transfusion. And I have to say, it does a lot of good. Elle looked better, with a glow in her cheeks and a lot more energy.

It was a good way to end the week.

Trooper

2009-03-14T19:13:00.003-04:00

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.

Radiothon for Barbara Bush Childrens Hospital

2009-03-14T09:42:00.002-04:00

This is where Elle is staying at Maine Med. They have been having a three-day radiothon to raise money for things like IV pumps and Sleeper Chairs for the parents. Here are the links if anyone wants to donate some money.

http://www.1075frank.com/

http://fundraising.mmc.org/NetCommunity/Page.aspx?pid=377

They do a lot of great work here. And like most places that do good things for a lot of people, they are under-funded. So every dollar helps them do that much more for kids like Elle.

(Thanks to Aviv for reminding me to put this up.)