Wednesday, April 29, 2009

Special Gifts From Uncle Eirik

I have been promising to post these pictures for a while. Forgive my tardiness, but here they are.


First, a little background. My cousin Eirik is an incredible artist/animator/sketcher/creator of visual things. He's awesome at it. Anyway, he works for Nickelodeon on one of their big properties, "The Fairly OddParents." Which is very watchable as an adult even as your kids appreciate it on another level.


He sent Ellie and Davey a package FULL of Nick stuff. They both got water bottles, notebooks, magazines, games...it was generous beyond measure just for that. But Eirik included two special things.


First, there was a doll of Poof. Poof is the baby fairy on "The Fairly OddParents." Elle squeezes this thing to death on a regular basis.



Pretty awesome, isn't it? We also received this:



That is a sketch of Dora and Boots from Jeff Degrandis, the director of "Dora." It's an amazingly generous thing for him to do, both for Eirik and Elle, and we cannot thank him enough. She loves this picture. We are currently getting it framed for her room.


So thank you to Eirik, Jeff Degrandis and Nicole LaGrotta, who helped Eirik get all the items for the massive care package that arrived on our doorstep. Elle (and Davey) loved it all.

Sunday, April 26, 2009

Elle Dances!

It was a good weekend for Elle. My parents came up to visit and Elle made sure to get all she could out of Grandma and Grandpa. Much attention was spent and love was given. There was also some Martel's ice cream and a trip to the Clambake involved.


But the highlight was later today when Elle tried on her dance recital outfit and danced to some records (yes, real vinyl!) This video clip is her last dance to The Beatles. It's in Quicktime so if you don't have it and can't view this, trust me when I tell you it is cute beyond measure.


video

Thursday, April 23, 2009

We Got Hats!

Today's hat photos are courtesy of the wonderful people at the Surgery Center Of Fairfield County in Connecticut. We received from them a box full of hats for Elle. All of which she tried on and modeled for us. If I had taken a photo of all of them, this page would run on for five minutes straight. So thank you very much to our Facebook friends, and here are a couple of photos for your enjoyment.



This is for the beach. She wears the sunglasses everywhere, inside or out, rain or shine.



Every girl loves Hannah Montana...



This is more for those times in the garden. Elle is already planning the many flowers she will plant (and pick) as planting season approaches.

Wednesday, April 22, 2009

Things Are Well

Nothing much to report right now. Elle had her vincristine push on Monday and is handling it rather well. Usually, she gets tired/cranky for a couple of days after. But this time she has been pretty chipper. The doctors said that after a while that kids adapt to some extent to some of the chemo meds. Since vincristine has been the most common med Elle has experienced, that may explain her good demeanor this week.


The most pressing issue this week so far is what kind of ice cream Elle wanted at Martel's. The decision was chocolate.


I have some more pics coming up soon. Not only of hats, but of some very generous gifts from Elle's Uncle Eirik and the good people at Nickelodeon (where he works).

Monday, April 20, 2009

Fundraiser For Elle

Another good couple of days for Elle. Lots of playing and eating followed by sleeping all night. Can't ask for more than that.


The real news today is to talk about a fundraiser for Elle. It has been put together by Beth's sister Emily and Emily's sister-in-law Michelle. And we cannot thank the two of them enough for all they are doing.


The event is called "Give 'Em Hell - Get Well Elle!" It will be held May 16 at Champions Sports Bar in Biddeford from 7:00 - 11:00 that night. Tickets are $10 and can be bought one of two ways. You can either send payment for tickets to:


    Get Well Elle Tickets

    3 Shadagee Rd

    Saco, ME 04072

Or they can be bought at the door the night of the event. The address for Champions is:

    Champions Sports Bar

    15 Thornton St.

    Biddeford, ME 04005

The location of Champions, and directions to the bar, can be found here.


Not only will it be a good time, there will be plenty of raffles for goods and services donated by local organizations.


So if you are in the neighborhood or were looking for a ready-made excuse to visit southern Maine, here's your chance!

Saturday, April 18, 2009

No News Is Good News

Sorry for the long delay...but not much has happened. Elle is doing well. The "tired time" that comes after her treatment has come and gone and she is up and about all day. Of course, then she crashes at night.


Today we had lunch at Friendly's. Elle had the cheeseburger sliders and a Shirley Temple supercharged with about a pound of sugar. Davey ate what looked like half a fried chicken and a coke. Elle likes the sliders because of that Billy Mays commercial for the Big City Slider Station. She knows that thing by heart.


Right now the only thing coming up is her next vincristine push on Tuesday (monday is Patriots Day in these parts and the center is closed). So I think the next couple of days is just time to relax.


One other thing; Elle has discovered Annie. I am guessing every female 35-and-under knows what this means.

Tuesday, April 14, 2009

Tired/Elated

I was with Elle yesterday when she had to go to the clinic for her Vincristine push. The real downside to this med is that she gets tired. And sure enough, later in the day she was cranky and sleepy. But that passed (somewhat) and she was able to fall asleep rather sweetly and zonked the whole night.

The really good news is that the initial rounds of chemo are doing their job. Her doctor said that the mass on her lung had "noticeably shrunk" from the chemo we have done so far. That doesn't mean it's almost gone. What it means is that the shrinking of the tumor is visible from just looking at it. I couldn't tell you how much or anything like that. But the doctor said he would measure it and let me know next time.

The other really good news is that there has been no spread of her cancer outside of the initial area. As before, this means the chemo drugs are working and the decision to add the Vincristine/Irinotecan combo to the treatment schedule was the right one. In a very real sense, Elle is breaking new ground here. PPB is so rare that there is no set protocol for its treatment. It's really scary...hell, it's terrifying knowing that your little girl has a form of cancer that doctors still don't know a lot about. And yet it's inspiring as well, knowing that Elle's fight and eventual success could lay the groundwork for another child beating PPB.

In so many, many ways, she is a unique and special girl. And I am just so damn proud and humbled at the same time (if that is possible) that I am lucky enough to be her dad. And the way that Davey has treated his sister and has been there for her...we're twice-blessed.

Monday, April 13, 2009

Easter Fun

We all went over to Nana and Bing's for a fine Easter feast yesterday. That was preceded by the annual Egg Hunt and Candy Grab. Then we got dressed. First, Davey:



Very J-Crew, the lad is. You could hit a ballgame or go sailing in that outfit. You'll notice that pink blur in the background. That would be an Elle fueled by half of a Hershey Bar. And not one of those small ones. Here she is in a rare moment of stillness:



How awesome is that? I think this should be the standard for Easter outfits. Elle rocks the punk look like no one else. She makes Patti Smith look like a flower girl. And that blue blur is Davey after a couple of handfuls of Swedish Fish. That I was able to get still photos of these guys is a miracle of Cana-esque proportions.


The Easter repast was excellent, as always. We filled up on good food and good times. Then we headed back in the late afternoon. Once there, Elle discovered she had a box of pink Peeps in her basket from the morning.


Now, you may remember that in a previous post I called her "my little Cossack." Well, I should have been thinker bigger. Like Catherine the Great. I'm guessing that these Peeps displeased Elle is some fashion...



Sadly, there were no survivors.


I don't blame her. It's like a muffin; all the flavor is concentrated in the top.


All in all, a good day. She got cranky once or twice and she was quite tired at day's end (which is a constant thing now). But she has been so good these past few days. She has her vincristine later today. Hopefully that won't wipe her out too much, though she may be a bit crankier tomorrow.

Sunday, April 12, 2009

Overnight

The big fun Friday night was Elle and Davey staying overnight at their grandparent's house down the road. They both had a great time. Elle and her grandmother (aka Nana) stayed upstairs on the bed while Davey and his grandfather (aka Bing) slept downstairs in the television room and had some kind of pillow fight.


This was great for Elle because it's the first time she has spent a night away from the house that didn't involve going to the hospital. And it went off without a hitch.


Yesterday was another good day. Lots of chattiness and laughter. She's had a few good days in a row. Hopefully that will continue after her vincristine dose tomorrow. Of all the meds, this is the one she tolerates the best.


But that is balanced out by the fact that her bones ache and she gets tired quite easily. Even on the good days, she has to rest a lot and she needs the medicine so the aches fade. That's the baseline, in a lot of ways. So when that (if you can use such a qualifier) is all there is, that's a great day for her.

Friday, April 10, 2009

Elle's Outfit

I just had to talk about this.


Beth had picked out a very nice outfit for Elle the other day before we went out. A blue-striped dress that had the coloring reversed on some leggings. It was very cute. And then Elle got into the act.


We got some head-gear from our Aunt Deb, Uncle Carl and our cousins Jessica and Rebekah in Michigan (thanks, guys!). Elle has taken to one particular hat. She then broke out her fuzzy pink Dora vest and some new Crocs that are pink and white with pink fur and Princesses on the top.


So first, here is the closeup...



Followed by the full-shot...



I called her "My Little Cossack" because, as you can see, she had the style down.



Elle's is a much cheerier Cossack, though. Spreading laughter and love instead of mayhem in 19th century Europe.


Oh, and she hasn't lost her hair yet. She just really likes that hat.

Great Day!

Sorry I didn't update last night. The whole family was out and when we came back we all pretty much crashed and fell asleep.


But it was a good tired, because we had a great day yesterday. I'd say it was one of Elle's top five days since this began more than a month ago. She was chatty and alert. She was telling jokes (100 variations on a knock-knock joke that involves bananas). She was eating well. The only downtime was when she needed to get her filgrastim shot.


But even that wasn't so bad, because Beth gave it to her. And however she did it, it worked like a charm and didn't hurt Elle nearly as much as the one from the day before. So Beth is now the official Giver of Shots (by Elle's request). I have the lesser title of "Guy Elle Looks At When Shot Is Given."


Then, in the afternoon, we all went to the Maine Children's Cancer Center. Not for medicine or tests, but for puppets! They have a program there for children with cancer and their families. The activity last night was pretty cool; a woman came in with two puppets who interacted with the children and talked about having cancer and being the sibiling/friend of a child with cancer. Afterwards, the kids got to make their own sock puppets. Elle's has three eyes and Davey's has a fu-manchu mustache. Interesting thing about making sock puppets...they use hot glue guns to secure everything on the sock. One parent puts their hand in the sock, the kids tell them where to place the various objects, and the other parent uses the gun.


Hot glue isn't stopped by sock fibers when you press down on the objects to secure them. Which I found out when I stupidly pressed down on a feather. Beth, to her credit, immediately grabbed the feather off the sock as I yelped in my self-inflicted pain...and then burned her finger in the process. Elle looked over at the two of us yelping with a look that was equal parts pity and disgust. Davey just laughed.


After all that, we went to a local pizza parlor called Pat's Pizza and had some mighty fine pizza. This was especially great for Beth because she has a wheat/gluten allergy and Pat's has gluten-free pizza AND beer. I think this was the first pizza she has eaten in six months. The kids enjoyed a cheese pizza and fries while Beth and I tucked into some gluten-free pizza with just about every meat known to mankind on the top. It was delicious. By the time we got home it was just after eight and Elle was asleep.


It was a really great day.

Wednesday, April 8, 2009

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.

Tuesday, April 7, 2009

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.

Monday, April 6, 2009

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.

Sunday, April 5, 2009

Ice Cream, Hair And Pictures

The big deal today was the local ice cream eatery - Martel's - opening for business. We took a drive down there and Elle got a mint chocolate chip cone while Davey got vanilla. Elle finished it off and then fell asleep as we went for a ride along the shore. It was really nice.


The other big news was that we had to cut Elle's hair. We had run into an unexpected problem; hair would fall out and get tangled with the hair that was still attached to her head. We ended up with two matted masses that were just impossible to undo. So Elle said, "Just cut them out!" And so we did. She is now sporting a cut that reaches to her chin. She is much happier not having the matted hair and isn't complaining about the new cut. But her hair is getting very thin.


And now...pictures!



This is Elle posing with some boxing gloves sent as a gift from one of Beth's high-school friends. Thanks, Margaret! She uses them to punch me in the nose and about my back.



Here is Elle rocking the new haircut. You can see how thin her hair has gotten. But she is more comfortable like this. And she's still the cutest thing going.



Here we are posing for a picture on the porch. It was incredibly nice here in Maine today, close to 60 degrees. We must have spent an hour on the porch today and Elle just loved it.



Here's Dad and the kids. Elle and Davey had a dance party on the porch later as we played some music through the window.



And here is Elle giving us the full-body pose to show off her Cinderella tattoo. That would be Davey in the background. I believe he is doing the "floor shake" dance made so popular by John Belushi in Animal House. Just following in my footsteps, though I had the twin excuses of college and alcohol when I did it.

Saturday, April 4, 2009

All Is Well

No stories to tell. Appetite is good. The next big thing is her trip to the hospital on Monday for her next dose of chemo. That will be an overnight trip. The actual time getting the drugs is short; the bulk of the time is spent with an IV flushing the chemicals through your system so they don't collect in your kidneys.

Sorry there isn't more to tell. But in some ways, that is a very good thing.

Friday, April 3, 2009

Nothing New To Report

Another good day for Elle. Cereal for breakfast and sides of ham for lunch. But we faded at dinner time and barely touched our treat: I-Hop pancakes. But we did make a banana smoothie this afternoon, which has become our new, favorite drink.


We get more packages every day. More hats and other treasure. Pictures are coming soon, I promise.


There is one story to tell. Elle has long hair. As it falls out, it has this very annoying trait of tangling up with other hair and creating a matted mess. Well, one of the these groupings of hair (healthy and otherwise) was annoying Elle. So did she call us to untangle it?


Of course not! She just reached up and ripped the damn thing out. Damn the pain and the visual of a wad of hair in her hand. She saw a problem and directly solved it. Gotta like that kind of attitude going forward.

Thursday, April 2, 2009

Elle's Big Day

Not big as in "went to the moon and conquered the Moon People" (thought that would be pretty cool). Big as in "went to her grandparents' house and played with her cousins and brother outside for three hours."


She really packed it in. Swinging, running around, blowing bubbles...Elle did it all. Of course, at the end of it she was really tired. But that is going to happen no matter what; she'll always be tired by day's end. The measuring stick is how she does during the day. By that standard today was a home run.


When we got home, a special package from her Uncle Eirik was waiting. I'll post some pics later of her presents, but she loved them all. And Davey was thrilled with the stuff Eirik sent for him as well. Way to go, Viking Man! She also got a special hat from Grandma and Grandpa Paye, which she adores and put on right away. Pics are coming of that as well.


Now she's settling into bed with our latest DVD - Barbie Thumbelina. I'm glad she loves them so much, but they're turning my brain to goo little by little.

Wednesday, April 1, 2009

Visting

Elle took her first out-of-the-house trip today since she came home. Just a quick jaunt over to her grandparents' house, but she had a good time and did well. She painted and snacked on Cheetos. She was also given a mountain of presents.


Her hair loss has accelerated (the vincristine's hair-loss side-effect is really kicking in now). When her grandmother noticed, Elle told her "I am going bald. But Daddy will be bald to so I won't be lonely."


I'm guessing that no later than the end of April, both Elle and I will be rocking the chrome dome look. And I will be sure to post photos. She will still be the cutest thing on two legs. Me...I can't make any promises.