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?

Home From Chemo

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.

Fishy-Whip!

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 Home

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

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.

The Week In Review

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.

Not So Easy

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.

Back Home

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

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.

Hospital Visit

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.