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

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

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

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

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

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

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

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

You did great, sweetheart. We love you.

 

 

Frustrating

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

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

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

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

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

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

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

Elle enjoys frosting!!

Surgery Is Off

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

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

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

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.