Frustrating

Elle just got her latest scans back. The growth of the tumor had stopped everywhere...except for one new part that grew up along the height of her lung.

It's so damned frustrating to see something work once and then take a step back the next. Especially when Elle is still fighting and has energy and isn't giving in.

But if there is an upside, it is that we may (finally!) get to do radiation treatment. We've been pushing for this for months and it looks like we may finally get it. And the idea of embolizing the tumor where possible is also going forward. And we are still going to do the chemo.

In happier news, Elle likes Kindergarten quite a bit! She has been going for about a month now and really enjoys all the art they get to do. She takes it easy and has to rest now and again, but she has fun. Elle is still doing dance as well. And if there is a five-year-old girl already looking forward to Christmas more than her, I'd be shocked.

Please keep Elle in your prayers. And keep your fingers crossed that these next measures get us back on track.

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.

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.

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.

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.

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.

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.

A Little More Good News

Elle had her PET scan today. This is a full-body scan to determine where the active disease is located. There were some worries about it extending to other areas of her chest.

If you have never seen this or been through it, you get injected with a radioactive dye. You have to sit still for 45 minutes to let the dye course through your body. Then you get loaded onto a metal shelf that slides into a tube where you have to remain completely still for up to a half-hour. The nurse and techs were telling me they have seen grown adults, including athletes, be unable to stay still and act like blubbering fools.

Elle fell asleep. PET scans? Not a problem with The Toughest Four-Year Old in the Universe.

And the result was great, in that the cancer hasn't spread. So now we have a solid baseline from which to work. Add in the clean bone scan from the other day and we got a couple of days worth of good news.

The fluid in her chest is dropping as well, which means her tube may come out soon. And that would leave just the central line in her chest, which delivers the chemo treatments. This would thrill her to no end as she is sick of that tube.

She is feeling well today. We had McDonalds for dinner again after she requested "a cheeseburger with onions". Between that and the multiple viewings of her Spongebob and Tinkerbell DVDs, she was quite content. And right now, that is about all you can ask for.

Attitude

Elle has it in spades. And it has been making a re-appearance over the past two days.

She has ordered around the nurses (with "please"s and "thank you"s, but they're still orders) and has demanded to be rubbed down with cream on her legs because...well, she's Elle and that's what she wants.

She has also charmed the pants off of everyone who has met her. One of the doctors let Elle play with her wedding ring while she rubbed Elle's back. The X-Ray lab let Elle bring a DVD upstairs because she like it so much. Remember that grouchy banker from It's a Wonderful Life, Mr. Potter? Elle could get a loan from him at 0% interest.

All this is great news because it gets her that much closer to coming home. She is also taking short walks, which is impressive anyway and doubly so when you realize she has a drain tube in her chest. How many of us would want to walk with a tube in us? I'd be moping in bed. She is eating more food (including a McD treat last night) which is a big step as well. And last night she slept without the oxygen thing that goes in your nose for the first time and her O2 levels were great, which means that right lung is getting back to normal.

So it has been a good 24 hours. We find out about her bone scan later today and lay out the course of treatment, which will start as soon as tomorrow.

Many of you have inquired as well about whether we would be taking Elle to Boston. Right now both Beth and I are thrilled with the doctors we have here in Portland. They belong to a regional pediatric oncological group, which means they are regularly discussing issues and treatments with doctors from Dana-Farber/Children's Hospital and Mass General in Boston. Our doctors here have also assured us that if they think at any time Elle would be better served in Boston, then we're going to Boston. That said, I have contacted Children's in Boston through a referral from a family friend. They will be getting Elle's information to review and we'll have an appointment down there in the next month or two for a second opinion. It should reassure all of you to know that they are very familiar with Elle's doctor in Portland and speak very highly of him. Trust me when I tell you this; Elle is in great hands right now.