Sunday, May 31, 2009

Change Of Schedule

Elle was supposed to go into the hospital on Monday to start her next round of treatment. However, her white blood cell count is just a little too low. This is not an unusual event. Sometimes, after getting fligrastim, the body's WBC production dips a little before picking up again. Elle just happens to be in that dip right as her next treatment is supposed to start. So it has been delayed to some time between the middle of this week and the beginning of next week. That's not a bad thing or something to be concerned with; these schedules are built for flexibility.

Also, Elle is still on for the dance recital on Saturday. She had her last practice before dress rehearsal yesterday. Beth was there and said Elle did great.

Tomorrow, a special set of pictures. I promise.

Thursday, May 28, 2009

Word For The Day

Skibbles: A hard-shelled, fruit-flavored candy more commonly known as Skittles.

Example of Usage: Elle decided that she wanted some Skittles and called Daddy at work to get some. But she called them Skibbles and told Daddy he was wrong when he tried to correct her. Daddy went to the store and bought Elle some Skibbles.

Frankly, I think it's a better name for them.

Wednesday, May 27, 2009

Late Update

Sorry for the long period of silence. But there hasn't been too much to report. Elle is no longer getting the fligrastim shots, so her white cell count is back up where it should be. She has a lot of energy and is raising havoc 24/7. I think her energy level is surprising the medical staff at Maine Med; they seem to expect her to be sleeping a lot more. She does sleep deeper at night, but she hardly takes naps. Too much to do, apparently.

One piece of news is that I was wrong about the different chemos going forward. I assumed that since we used a vincristine/irinotecan combo at the start, that would continue to be used. But apparently that was just to kick it off. So this upcoming Monday Elle goes back into the hospital for her next round of VAC (vincristine/actinomycin-D/cyclophosphamide) which gave her an 18-hour technicolor vomit marathon the last time. But, that was in part due to the fact they didn't give her any anti-nausea meds when she got the drugs. So this time they should put her on Zofran before it begins and that should hopefully help her somewhat. The upside is that this round doesn't have the long-term nausea effect of the cisplatin/doxorubicin combo. So once she rides it out at the hospital, that should be it for the nausea.

I hope to have another update in the next couple of days about a very special gift that Elle received. So stayed tuned!

Thursday, May 21, 2009

Ride & Rock

On June 6, the 2nd bi-Annual Ride & Rock is going to take place. This is a motorcycle run for charity that ends with a rocking party, also for charity. And this year, the recipient of the latter event is going to be Elle.

The event is organized and run by two wonderful people in Saco, Michael and Christine Paul. For them to choose Elle to be the beneficiary of this is incredibly generous of them both and Beth and I are so thankful to them for what they are doing.

The day itself begins with a motorcycle run that starts at 12:30 in Old Orchard Beach at Jimmy the Greeks', a popular restaurant/watering hole in the area. To join you have to make a cash or food donation to the Saco Food Pantry, which I encourage everyone who can to do regardless of whether you are riding or not. And if you aren't in the area, find a local food pantry and make a donation if you can.

The ride then winds south along the coast to Wells, where there will be a pig roast and burgers stop (that's my kind of stop!) at Torches Pub and Grille from 1:30-3:30. From there, the ride will work north through Sanford and Waterboro before cutting across to Saco. That's when the party starts.

At 5 PM, the music starts up at 172 Flag Pond Road in Saco. You can attend whether or not you took part in the motorcycle ride. There is DJ music from 5-7 PM and then live music from The Local 109 from 7-11 PM. It's $5 per person until 9 PM and then $10 from 9-11 PM. All ages are welcome until 9, but then it is 21+ from 9-11 PM. It will be a lot of fun and if she is up to it, we'll try to get an Elle Appearance at the party.

As for Elle herself, she is doing as well as we could want right now. She is still getting the filgrastim shots, which irritates her to no end. But besides that, she's in good spirits. I'll have a couple of photos and a video up soon as well.

Sunday, May 17, 2009

"Get Well Elle" A Great Success

If you were unable to attend the benefit last night, you missed a good time. Get Well Elle filled Champions in Biddeford last night and at evening's end, we had raised over $3,000 for Elle's expenses. It was just an incredible night and the generosity and kindness from everyone was just amazing.

Thank you to the owner and staff of Champions for allowing us to hold the event there and for being great to everyone all night long. And a huge thanks to Michelle, Emily and Lea for all the hard work they did in arranging the evening. It never would have happened without the all the effort they put into it.

And where was Elle, you may ask? We wanted to bring her in at the start, but her white blood cell count is at its nadir right now. That means big crowds are out for her until the count goes back up. So she spent the night along with Davey and her cousins at their grandparents' house. It was a big ol' sleepover and everyone had a good time.

Friday, May 15, 2009

One Last Note On The Benefit

Several people have asked about buying tickets for "Get Well Elle" tomorrow night even though they cannot attend. If it were more than 48 hours before the event, I would say to just mail the money to the address I posted earlier and just add a note saying you cannot attend. At this point, though, the money would likely get there after the event.

So if you would still like to do this, the easiest thing to do would be to send the money to the bank account we have set up for Elle at Saco & Biddeford Savings. All the money raised for Elle goes to this account, so you're just cutting out the middleman at this point. :) Here's the address:

Power of Elle/Eleanor Paye
c/o Lynne Belanger
Saco and Biddeford Savings Institution
252 Main Street
Saco, Maine 04072

And thank you to everyone who is buying a ticket, has sent a check to her account, has sent her a hat, a nice note or anything at all. All of your support is so appreciated and has just blown our whole family away.

Thursday, May 14, 2009

Couple Of Pics

Not much to report. Elle is doing well but approaching the nadir of her white blood cell count. This usually occurs 7-10 days after she gets her high-level chemo treatments. This is the time you have to keep her out of large crowds and ban anyone with the sniffles from coming within 500 yards of her. It also means Elle gets her Filgrastim shots, and that results in a lot of crying and yelling that stops the second the shot is over. It's an Oscar-worthy performance.

So rather than take pictures of Elle screaming at us and/or the visiting nurse as she gets the shot, here's a couple of happier pictures.

This is Elle and I posing for a picture on the dining room floor using my cell phone camera. It's really the only way to do it, because I have to practically dislocate my shoulder stretching my arm out to get the framing wide enough for the shot. And when Davey saw this, he wanted to take a picture as well.

This one got a little silly. We decided to do a "crazy face" photo. I'd say we met the crazy quota with little trouble.

Also, a reminder that the "Give 'Em Hell, Get Well Elle!" benefit fundraiser/dance/good time is happening this Saturday from 7:00 - 11:00 PM at Champions Sports Bar in Biddeford. The address is 15 Thornton St. in Biddeford and here is a map if you need directions. Tickets are $10 at the door and there will be a raffle for all sorts of neat stuff. I think they have beer there as well. So if you are looking for something to do on Saturday night, come and join us!

Tuesday, May 12, 2009

So Where Are All The Updates?

You know you've been asking that question. Rest assured, everything has been fine.

Beth and I attended a friend's wedding over the weekend and my parents were gracious enough to watch the kids in our absence. We left on Friday morning and returned last night. And during that whole time, Elle and Davey were...wonderful.

They played a ton and behaved themselves perfectly. Elle took her Zofran and didn't have a single episode of nausea. She didn't need any pain medication. All she did was bounce around all weekend with the energy dial on 11. It couldn't have gone any better.

So right now Elle has a couple of weeks off from chemo to recover from the potency of the doxorubicin and cisplatin. She also has to get some filgrastim shots to boost her white cell count back up. But she is still doing great. As always, no news is good news.

Thursday, May 7, 2009

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.

Tuesday, May 5, 2009

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.

Saturday, May 2, 2009

Visiting With Uncle Eirik

The big deal this weekend was my cousin Eirik and his girlfriend Tanya coming up to Maine to visit the family. Elle was thrilled her "favorite artist" was visiting and it didn't hurt that Tanya brought her a sweet treat.

That is a handmade box, inside of which resided some tasty jellybeans. And that happens to be Elle's favorite candy. So to say that Tanya and Elle became fast friends would be an understatement.

It was a great visit and we all had a blast. Today was drinking Shipyard beer, grilling up some streaks and telling some funny stories. And Elle is still in seventh heaven tonight after the visit. Davey as well; he wants to be "a moviemaker" when he grows up and with Eirik being an animator at Nickelodeon...the word "hero" may be too tame.