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.

Tiny Dancer

One thing Elle loved to do prior to her diagnosis was dance. She goes to classes at a local dance studio and takes it all quite seriously.

Today she decided she wanted to go back. And so there she was, in leotard and tights with a chest tube securely pinned to her clothing. And she danced too, even after her teacher begged her to sit down and take a rest. I think she missed it.

The best part though, relayed to me by Beth, was what happened outside of class.

There is a vending machine that stands outside of the dance studio in the hallway. Elle was looking at it and Beth asked her if she wanted something out of it after class. Elle studied the machine and decided on a bag of Cheez-its. Beth agreed to get it after the class.

"No," Elle said, "you have to get it now. There is only one left."

Beth looked across the hall and told her there were plenty.

"There is one," Elle said, "and if you don't get it, someone will steal my Cheez-its." With that she turned and went into class.

Beth looked over at the machine again and then slowly walked over, just to make sure there were, in fact, plenty of Cheez-its.

There was one bag left.

Beth bought the bag and put it in her purse. After class, when the children came out, Elle proceeded not over to Beth but to the vending machine. She looked at the empty slot where the Cheez-its once stood. Then she turned and fixed Beth with a most murderous glare. She raised her arm and pointed at Beth.

"I told you to buy the Cheez-its! SOMEONE STOLE MY CHEEZ-ITS!"

At this point, Beth took the bag out of her purse to show it to Elle.

"Oh," was all Elle said. She then walked over, took the bag, thanked her mom and they went to the car.

Kid has attitude and fire to spare.

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.

It's All Relative

The big deal today was my sister Kristin and her daughter Maya came to visit.

Elle adores Maya. And the feeling is mutual. So for Elle to see her and play with her just made her day. And Davey and Maya get along great as well. So when Elle was resting on the couch, Davey and Maya were chasing each other all over the house.

It capped off a great day for Elle. Her temperature stayed low, so no return trip to the doctor. Her appetite was large, so mass quantities of pizza and crackers were consumed along with steins of milk and Gatorade. We painted and colored and wore yet another groove into her collection of Barbie DVDs. Then Beth's parents mixed it up with a new DVD: Peter Pan. Not the animated Disney classic but the 2003 live verison. Which, by the way, is fantastic. Elle's on her third viewing already.

Another piece of good news is that Elle's fluid drainage out of her chest tube has diminished significantly. So (fingers crossed) her chest tube may, may, be coming out soon. That would be great because she's about three days from wrapping that thing around someone's neck. No, she doesn't like it.

Tomorrow is Elle's entire chemo treatment for the week; a single Vincristine push into her central line. So we're hoping this week won't be too difficult for her.

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.

Good Friday

Today we colored. Pasted fuzzy balls to paper. Watched more Barbie DVDs. Ate chocolate.

We even un-clamped our line when Daddy had to flush it out. Because we all know how forgetful I am when it comes to that.

And once again we drew our own blood for the visiting nurse. She truly has an iron will.

But the big deal today was hats. Oh, the hats are beginning to come rolling in.

I don't remember if I mentioned it here, but I told people that I would like to collect hats for Elle once her almost-certain hair loss from the chemo begins. Hats from wherever people happen to be. Sports hats, regional styles...what have you.

Well, we've gotten a few in the past two days. And I was thinking we would try to have Elle show off her hats and then post the pictures, as long as she would let us take a picture of her.

Today Elle was very amenable to the idea. And so we have our first hat display. It was sent to Elle by my wife's close friend Henley, her husband Shaun and their daughter Lamira. They live in Texas, and you know what kind of hat they like to wear in Texas...

We think it fits her very nicely.

Flushing The Lines

Elle has something in her chest called a central line. It's a semi-permanent fixture (it'll be there until we're done) that allows the doctors to deliver IV drugs (including chemo) and draw blood samples through one of two lines. The base (where it enters the chest) and a majority of the two lines is covered with a waterproof dressing that is changed once a week (more if she takes a bath/shower/goes swimming in a pool). It looks like a clear piece of Saran Wrap.

But these lines need to be cleared, or flushed, every day. This is so blood doesn't clot and block the lines, which would render them useless. So every day each line has to have a sterile saline solution injected into it, followed by an injection of heparin. The heparin is an anti-clotting agent that flushes any particle of blood out of the line but breaks down before it hits Elle's bloodstream, so it's perfectly safe (ie she won't become a bleeder like a member of the Russian aristocracy.)

The visiting nurses, despite their name, don't actually visit every day. Care to guess who has to learn to do this?

Beth and I each took a line today while the nurse watched us. Beth did a great job. I forgot to de-clamp my line and tried for five seconds to push the saline through before I realized what had happened.

It's an intricate process. You have to:

• Wash your hands
  

  
  

• Wipe the cap on the end of the line clean for a minimum of 10 seconds with an alcohol wipe
  

  
  

• Do everything in your power not to let that cap touch anything else that occupies a point in space and time. Because if you do you have to clean it again.
  

  
  

• While holding the cap at its base in one hand, attempt to de-cap a syringe filled with saline solution in your other hand. Oh, and it's threaded, so good luck.
  

  
  

• Once you figure out how de-cap it without dropping the cap on the line, you take the syringe and screw it onto the end of the cap.
  

  
  

• Then you unscrew it and draw some air into the syringe to break the seal and then push a little water through the top to get rid of the air.
  

  
  

• Rescrew the syringe onto the cap and start to push the saline solution into the line.
  

  
  

• Realize that the water isn't going through because you forgot to de-clamp the line.
  

  
  

• Undo the clamp on the line and try to inject the saline solution again.
  

  
  

• Unscrew the syringe from the line because by trying to push the saline through with the clamp on, you create a vacuum that you have to break. And for God's sake, do not let that cap on the end of the line touch anything!
  

  
  

• Screw the saline syringe on for a third time and finally push the solution through the line.
  

  
  

• Look away as your daughter, who drew her own blood the other day, glares at you with thinly-veiled disgust.
  

  
  

• Repeat with the heparin.
  

On the bright side, I only have to do this 200+ more times over the next year. I have to get good at it at some point.

Elle had a good eating day today. Right now the goal is getting calories in her. So while I was able to get her to drink an Ensure shake made with ice cream and milk, she also had soup, vanilla wafers, Goldfish and french fries to go with multiple cups of juice. It's easily the most she has had to eat in two weeks. And she didn't have any nausea today.

She also sat on the couch watching her numerous Barbie DVDs (Barbie and the Magic Pegasus, Barbie as the Princess and the Pauper, Barbie Explains How to Sell and Buy Credit Default Swaps) and coloring with those great Crayola markers that only show up on their special paper. Her diarrhea lessened today and her fluid production was down slightly. So it was yet another good day. And that's all you can ask for right now.

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.

Home

Elle is home.

Along with Elle came all of the gifts and cards everyone sent to our little girl. You may be interested to know that your outpouring of love can be quantified; four trips to two cars, each time with a tri-level cart filled with bags of stuffed animals, art supplies and whatnot. It was amazing. And heavy.

Her being in her bed right now, snoozing away, is unusual in that they released her with a chest tube. The fluid still isn't down low enough to take it out, but it was the only thing keeping her there. So they showed us how to drain the bulb and everything should work out okay.

We also have a small pharmacy downstairs. Between the meds for controlling side-effects of chemo, antibiotics, gauze, wraps, handwash and the rest, I'm thinking of adding a candy section and opening for business.

Her brother couldn't be more thrilled. He probably told me how happy he was that Elle was home no fewer than 10 times. And that is making Elle even happier.

This was a big step. She is already so much more content being in her own bed in her own house. And yet we have such a long road ahead of us. Trips to clinics, more stays at the hospital, nurse visits and who knows what else.

Winston Churchill made a comment after the British defeated the Germans at El Alamein in Northern Egypt in 1942, the first substantial victory by the Allies over the Germans. Churchill said "Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning."

I think that is where we are now, the end of the beginning. We have a long way to go, but we are on the road to recovery.

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.

Trooper

Another day of chemo, another day of Elle coming through it with flying colors.

She felt well enough today to take another walk to the playroom on the floor and draw some pictures with markers. She also regaled Beth and me with a story of what she is going to do once she gets out of here.

In short, she and her Uncle Eirik (my cousin) are going to tour America and Mexico in her band. She is going to play guitar and Eirik will play harmonica. And there will be a lot of pizza and soda. And she'll buy me some beer and Beth some coffee. So I am on board with this plan. I cannot vouch for Eirik's musical skills, however.

This Elle, the chatty storyteller, is the one we have missed for most of the past 10 days. And it is great to see it coming to the fore again.

She is laying in bed right now, watching her Tinkerbell DVD and drinking a cup of milk. She is so peaceful and content that it is almost impossible to believe there is a tumor in her chest.

But man, did Cancer ever pick on the wrong girl. She is doing this well right now. Imagine how much ass she'll kick when she gets pissed.

Radiothon for Barbara Bush Childrens Hospital

This is where Elle is staying at Maine Med. They have been having a three-day radiothon to raise money for things like IV pumps and Sleeper Chairs for the parents. Here are the links if anyone wants to donate some money.

http://www.1075frank.com/

http://fundraising.mmc.org/NetCommunity/Page.aspx?pid=377

They do a lot of great work here. And like most places that do good things for a lot of people, they are under-funded. So every dollar helps them do that much more for kids like Elle.

(Thanks to Aviv for reminding me to put this up.)

No More Pleur-Evac

The Pleur-Evac is this box-like device that you hook up to a suction nozzle. It then uses sterile water in one chamber to create a vacuum in a chest tube to draw fluid out and into one of three storage chambers. It's about the size of a notebook computer case stood on it's end and much heavier. You hang it off the hospital bed

This is what Elle has had lugged around behind her every time she walked anywhere or went to the bathroom. She couldn't roll everywhere in the bed because she risked yanking on the tube, which apparently hurts like hell.

Well, the Pleur-Evac is no more. Her fluid production is down enough where they were able instead to attach something that looks like the squeeze bulb on a turkey baster. Except the bulb is clear, made of tougher material and I would wager is a lot more sterile. What they do is squeeze the bulb, hook it up to the tube and then secure the bulb (it has a loop attached) with a safety pin to Elle's shirt. Then suction draws the liquid out over time. And when it is time to empty it, you just clamp the tube, detach the bulb and then clean it, squeeze it and re-attach it.

So now Elle is essentially able to go anywhere she wants without a massive box behind her. And once her fluid gets down to a level where she'll be able to naturally re-absorb it and pass it, she can come home. Hopefully that will be early next week.

The only other news is that she had her second dose of Irinotecan. She handled it pretty well with just a touch of nausea. So they gave her Benadryl for it, which actually works well for nausea with kids. I prefer it for Elle as opposed to this stuff they gave her last night that made her look more stoned than James Franco in Pineapple Express.

Also, there are two local radio stations doing a charity drive for the Barbara Bush Children's Hospital (the pediatric wing at Maine Med where Elle is). And Beth got to go on the air and tell Elle's (and our) story as part of it. She did well enough that she is going on again tomorrow. And Elle may be with her. It depends on her mood and if they can get her painkillers into her on time. Otherwise you get Cranky Elle and no one wants that on a live mike.

Strong Like Bull

That pretty much says it all.

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.

A Bit Of Good News

We got the word yesterday that Elle's bone-marrow tests came back negative. After a week of unremitting bad news, it was a welcome change of pace.

Elle has also had one of her two chest tubes removed from her side. These tubes are draining the fluid that had built up in her chest from the cancer as well as from the initial surgery to place the tubes in. And the epidural catheter, placed in originally to help manage the pain of two tubes in her side, came out this morning.

She is eating more now (scrambled eggs this morning with some Cheerios) and yesterday she took a walk down the hall.

Taken all together, she is getting closer to being able to come home. And then we can start the real work.

Cancer

It's a hard word to read, harder to type and heartbreaking when you have to use it for a family member.

Our four-year old daughter Eleanor (new nickname: Elle. Her choice.) has cancer. And it's a rare one called rhabdomyosarcoma, a bunch of gibberish that means our little girl has a year's worth of chemo and possible radiation treatments coming up with surgery to boot. If any cancer can be called good...this isn't one of them.

But it could be worse. There are a hundred other types that leave you no room for hope. We have hope. People do get better from this. And if there is anyone that can beat the odds, it's my little girl.

If you are unlucky enough not to have met Elle yet, she is the one giving cancer the bird to your right. She has the attitude and the sheer will to crush this thing like a paper cup. Example: do you know a lot of people who could battle through a dose of morphine AND oxycodone to stay awake 30 minutes and tell their parents to "Shut up!" so they could watch their favorite television show from a hospital bed? She makes Ah-nuld in the original Terminator look like a wimp. Elle is a genuine force of nature.

That is what is so great about her. She is a spunky fighter and that attitude is so critical in fights like this.

So many of you have asked about her and have sent so many kind words our way. And the truth is that we have been overwhelmed by the love and support all of you have shown for Elle and rest of the family. So rather than send 1,000 emails and make 1,000 calls, we are setting up this website so you can follow Elle (and the rest of us) on her "Kicking Cancer's Ass" 2009 Tour.

We know this road isn't going to be an easy one for Elle or for us. But we also know that it will end with her beating cancer into the ground. Because, quite frankly, she won't have it any other way.