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 Home

Elle is back home after her latest round of chemo. And while she is happy to be here, there is the unfortunate side effects of her chemo to deal with. Specifically, all the barfing.

For the next couple of days, Elle will be throwing up. Not non-stop, but more than anyone would want to do. Last night was rough b/c we got home late and the pharmacy was closed. So all we could do was use Benadryl to try and calm her stomach. It didn't work too well; she threw up about every 90 minutes.

This morning at the crack o' dawn, I went to the pharmacy and got her prescription filled for an anti-nausea drug called Zofran. It's designed to battle this kind of nausea. Sure enough, Elle went three hours after taking her first dose before she threw up again. And she seems more relaxed and comfortable. So hopefully this continues and Elle can try to eat something light.

When she isn't throwing up, she is in a pretty good mood. It is just incredible to see how upbeat she is after getting a one-two Punch of Doom like Doxorubicin/Cisplatin. Even after throwing up she smiles at me and then takes a sip of her juice. The kid is a trooper.

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.

Adjustments

Elle does not like her shots of Filgrastim. Doesn't like the numbing cream. Definitely doesn't like the needle.

It's the latest addition to Elle's chemo regimen. As I was saying before, the VAC (thanks to the cyclophosphamide) knocks her white blood cell count down. The Filgrastim boosts production and gets them back up. Of course, explaining the importance of this to a four-year old is somewhat difficult. Thankfully, the visiting nurses are doing it the next few days. But sooner or later, Beth and I have to do it.

Elle was really tired today and her bones hurt (another side effect). But her grandparents brought over a little Mint Chocolate Chip from Martel's, which really made her day. And since I worked from home today, she and I were able to do some painting together.

It's not going to be easy for Elle, but she is trying her hardest. Sometimes it overwhelms her. But she always comes back.

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.

Chemo: Round 2

So Elle got her Vincristine today. According to Beth, she tried to do it herself. While her doctors love and encourage her feisty spirit, they don't encourage it that much.

After that it was a visit to her surgeon who thinks Elle may be able to remove her chest tube on Thursday. That would be a very good thing indeed.

My sister and her daughter Maya were over again today. Elle and Maya had a blast today with painting and watching movies. While that was going on I went back to work for the first time in about two weeks. I had been working from the hospital/house. It's odd going back after all that time. But it was nice too; there's something to be said for the regularity of work and how it occupies the mind.

Tomorrow is another day of work and then we bring Elle to Dana-Farber in Boston for her official second opinion on Wednesday.

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.

Visiting Nurses

Today was our first visit from the VNA (Visting Nurses Assn.). They'll be coming here about 2-3 times a week unless Beth and I collapse into quivering masses of ennui and they decide to come every day. But since that isn't an option, they'll stick to drawing the blood samples and changing the dressing on Elle's central line while we deal with flushing the lines once a day and draining her fluid bulb.

The one we had today was great, engaging Elle in the process. She even helped the nurse draw her own blood, which I place in equivalence with Rambo cauterizing his own bullet wound with gunpowder and a flaming stick in Rambo III. Would you draw your own blood? No thanks.

Elle spent most of the day on the couch, but she did color and play while sitting there. There are days she'll have energy and days she won't, and this was one of the down days. She was able to keep down some McDonald's hotcakes and sausage for breakfast, which was great since her nausea only seems to come around that time. And she had lots of milk, juice and soup during the day. I conned her tonight into believing that milk and Ensure mixed together is just another kind of milk. Or maybe not; she gave me the stink-eye as she drank it.

The only chemo she has for the next week is a vincristine push on Monday. So this is pretty much downtime for Elle, short of the weeks that she has no chemo at all. And the bathroom-visiting properties of the irinotecan should fade in a day or two. Then the main concern is a lowered white cell count, which means anyone with coughs and/or sniffles is turned away at the door.

Improving

Each day Elle seems to get a little better.

Today we went to see some K-9 units who came to visit the children today. These dogs are remarkably friendly and well-behaved with the kids. Elle got to pat them all and watch them, which made her so happy she...fell asleep.

Once she woke up, though, she was chatty all day long. And her grandparents (my parents) came to visit again, which she loved. Also, we have watched this Barbie and the Diamond Castle about 1000 times now. The best thing I can say about the DVD is that Elle likes it.

Today was the last day of her first cycle of Irinotecan. It's also known amongst the nurses as "I run to the can" for its rather...explosive properties. And last night Beth got to find out why, to the tune of four diaper changes in four hours. Today was a little better though, with only a couple of episodes. They have her on a medication to counteract that effect. Hopefully that won't get too bad in the days ahead.

But she is as good as she has been in a while now. Right now she is regaling me with a story about how she was the princess in the Barbie DVD. It is long and rambling and more than a little silly. And it couldn't be better.

Outside

Today was a big day for Elle. After another dose of Irinotecan (the fourth of her first five-day cycle) and a healthy round of coloring pictures (most of which related to her new favorite DVD - Barbie and the Diamond Castle), Elle and I, along with her mom and Elle's favorite doctor (Dr. Katie - a great 4th-year resident who has a natural rapport with kids) went for a walk outside!

Maine Medical Center is built on a hill in Portland overlooking the Fore River where it empties into Casco Bay. That part of the hill is called the Western Promenade and it is a beautiful place to walk with a lot of old houses. The view...well, if you like watching planes take off it's not too bad. The river is nice, but you also get an eyeful of the fuel depot in South Portland.

We walked to a bench on the Western Prom, no more than a quarter-mile from the hospital. And Elle was a real trooper; she walked most of the distance. I carried her now and again but she wanted to walk most of it. And that is important because it works that right lung of her that was compressed for so long.

I don't think I ever went into why we came in originally. Elle was having trouble breathing and the X-ray showed that her right lung was essentially compressed into a small useless ball by a god-awful amount of fluid. Fluid we later found out was the by-product of the cancer. There was so much fluid that Elle's bronchial tube and heart were pushed from their proper center position into the upper-left part of her chest. Her attending doctor said that if you or I had that much fluid in our chest, we'd be dead.

Elle wasn't because kids have an amazing ability to adapt. The fluid had been building up for a period of months and her body simply worked around it until it couldn't any more.

Now that the fluid is being drained off (and the chemo should limit, and hopefully eliminate, future production), that lung is learning to work again. But it takes time and usage. So every time Elle goes for a walk, that lung gets stronger and stronger. So hopefully as the weather improves there will be more walks on the Prom in Elle's future.

The other big thing for Elle was her first blood transfusion. This is necessary because chemo slows down the production of new blood cells in the bone marrow. And since Elle is usually slightly anemic to begin with, it hits her a little harder. So every now and again chemo patients get a transfusion. And I have to say, it does a lot of good. Elle looked better, with a glow in her cheeks and a lot more energy.

It was a good way to end the week.

Chemo

Vincristine.

Irinotecan.

These are two names my wife and I will become very familiar with over the next year. These are the first two drugs Elle is being given in her treatment cycle. Or, to look at it another way, these are the first two poisons my daughter is being given to kill off a deadlier poison in her body.

Let's not dance around this; these are powerful chemicals and in an ideal world, no one would ever have to take them. They attack healthy cells as well as the cancer cells. And they have side effects. Which is why the nurses where protective gowns and face-shields when they give Elle the liquids. And why her diapers are disposed of in a hazardous waste bin.

That said, kids respond differently to chemo drugs than adults. They are tougher than adults. Whether that is because they don't know any better and live in the moment or they are physically stronger when it comes to chemo tolerance isn't known. But the truth is that if you or I took this stuff, we'd be a much bigger mess.

And she is okay right now. The nurse said that we wouldn't see any possible side-effects until tomorrow at the earliest. And that it would likely be nausea, which is easily treated with an anti-nausea medication.

Elle was up and walking again today. The big news aside from the chemo is that her chest tube may come out tomorrow. If that happens then she'll likely be home by Monday. She looks good and sounds good, chatting up a storm as she always does. And that has baffled the doctors to some extent. She looks a lot better than someone with a tumor on their right lung should look.

You may want to know what these two drugs do. Vincristine disrupts cellular production by halting mitosis in metaphase, so it is supposed to stop the growth of her cancer. Irinotecan does the same thing but targets the DNA of the tumor. It's a relatively new drug, coming to the US only in the mid 1990s. Recent studies suggest that starting Irinotecan at the outset of chemo (it usually comes in later during the process) would be beneficial to fighting the cancer. So when they presented it as an option, we agreed with it. Both of these drugs attack the tumor, but also impact white blood cell production and, classically, hair growth.

That isn't guaranteed to happen to Ellie, but it likely will. Which works out alright since she isn't fond of her hair right now. Sadly for all of you, if she does lose her hair then I am shaving my massive dome. That will not be a pretty sight.