Wednesday, December 16, 2009

New Chemo

So Elle has started her new regimine of chemo drugs. The two she is getting this week are Etoposide and Ifosfamide. Etoposide is different from, but does a similar job, as Irinotecan, which is what Elle had in her very first chemo round. Ifosfamide is related to Cyclophosphamide (part of Elle's old VAC round) but is a step up on the potency scale. She gets these two drugs in limited doses each day in a five-day period.

These are heavier hitters and will hopefully *knocking on wood* start the process of whacking down the tumor once more. So far Elle has handled them well, but we are only into Day 2.

However, since arriving on Tuesday she has received numerous gift bags, goodies, a t-shirt from the Maine Red Claws mascot and a chance to shop with pretend money at a Xmas Store set up by Rite-Aid in the Children's Hospital Atrium. Currently she is singing Christmas songs in the Atrium and I am sure she'll come back with some gift even though there shouldn't be any there. Because that is how Elle does things.

And now a couple of pics.

Here she is taking a well-earned nap yesterday. She had to get up at 6:00 AM for a 7:30 PET scan.

This allowed her to get rested up for the shopping. Will it surprise any of you to find out that Elle got extra shopping money to cover her "expenses"? No, it didn't surprise me either.

And here she is singing Christmas songs in the Atrium today around lunchtime. She is the spitting image of a North Pole Elf, isn't she?

Monday, December 14, 2009


Elle has a PET scan tomorrow morning and then it is back to MMC for chemo. We won't know what chemo drugs she will be taking, or the schedule for them, until we reach the hospital tomorrow.

What happened is that there was some regrowth in the tumor. And that is become some of the cells in the tumor became chemo-resistant to the VAC and Doxo/Cisplatin regimen that was being used. And those cells began to grow.

There was really no way to catch it before they did. And it was a silver lining of sorts: the CT scan in Boston that caught the growth was a last-second decision. And had the surgery been performed with the tumor wouldn't have been good for Elle.

So while this setback is disappointing, Elle is still raring to go and so are we. The chemo is just the first step. And we WILL beat this thing.

And just so you can see how well Elle is is a pic of Elle and Davey in Boston at the Public Garden. I made a special trip to get Davey so the whole family could spend our (early) last night in Boston before we came back to Maine. This was taken right before we left the next morning.

Tuesday, December 8, 2009

Surgery Called Off For Now

The surgery scheduled for the 10th has been called off. Unfortunately, the CT scan taken today has shown a small amount of growth in Elle's tumor. While it is still far below the size it was originally in March, the surgeon feels that with the growth, surgery wouldn't be the right thing to do.

So the next step is to meet with her doctors and figure out a new avenue of treatment. There are still different chemo regimens to try and other treatments altogether. We are, by no means, beaten. This is just a setback on the road to recovery. Elle is still full of energy and fire and she IS going to beat this. It's just going to take a little longer.

Thursday, December 3, 2009


It's official: Elle's surgery will take place the morning of December 10 at Children's Hospital in Boston. We are going down for a pre-op interview on the 8th and will be there until at least the 15th for Elle's recovery.

This is good news. And still it guts you. You know you've made the right decision to have the surgery...but you are removing your daughter's lung. It brings up a dozen different emotions at once and they all conflict with one another. If anything makes it easier, it is Elle's attitude. Her fight and spirit through all of this has been awe-inspiring. But it's hard.

So please keep us all (and Elle especially) in your thoughts. And send as much positive energy as possible her way on the 10th.

Tuesday, December 1, 2009


This past Sunday, Elle went through a rite of passage for most little girls: going to see The Nutcracker. Beth and Elle went with Beth's mom, sister and Elle's cousin Avery to see it at the Merrill Auditorium in Portland. It was a HUGE hit for the two girls. To say they were spellbound would be an understatement. Of course, everyone got dressed up. Here are two pics: the first is Elle and Beth, the second is Elle and Avery.

Elle and Avery look like two girls in the 1920s ready to hit a speakeasy after doing the proper "ballet thing." And yes, that is a compliment.

The two men of the household went over to Uncle Jerry's for wings, meatballs and football. A good time was had by all.