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.

New Chemo

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

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

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

And now a couple of pics.

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

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

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