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!