Pictures!

First, Elle doing the Sprinkler...

And now...hats!

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

Hair

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!

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

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

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

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

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.