4.28.10

Went ahead and asked our neurosurgeon to give us his opinion on Evy's MRI. He agrees that the spot is probably scar tissue and at the end of his thoughts he said that the MRI looked "awesome."

Big smiles.

4.27.10

Today in the car on the way to our doctor's appt, Evy threw up all over herself and her car seat. Stella was so grossed out, that she threw up all over the place, too. Luckily we were near a Target so I could run in and buy us all new clothes! It actually ended up being fun and I got a cute top out of it (: Thank goodness Brian was with us.

We finally got our blood drawn to see if Evy's cancer is genetic or not. It probably will show that it is a genetic chromosomal deletion on chromosome 22 (our former lucky number.) Stella had to get blood drawn and she didn't even flinch or cry! She has such a tough streak, just like Evy. We were all so surprised that she was so relaxed about it.

Evy started another round of chemo this week. The last light chemo til the big stuff hits us again next round. She is taking oral chemo at home. We are on week 23, wooo-hooo!

4.23.10 MRI results

As you probably remember, after our last MRI one of the doctors told us that there was a questionable spot on the scar tissue area of Evy's former tumor location. This MRI showed the same spot. It is within the area that was irradiated, and it could be inflammation. AT/RT is an extremely aggressive cancer, so we are taking these MRI results quite happily. AT/RT doesn't hide in the shadows and grow slowly... if grows fast and furiously. We don't have NED officially, but we think we have something that is not bad. We have more of a question mark.

Our Oncologist is away on family business and has not seen this MRI. Last MRI, she didn't even bother to mention the questionable spot because she did not think it was a tumor growth. We will not get her opinion until next week.

Happy Friday and have a great weekend! Thanks for your love for Evy. She loves you right back, and so do we.

4.23.10

Still no news on the MRI. They don't seem to understand that these are families wanting to know the fate of their children. We're pretty good at waiting, though. Last night as Brian cooked dinner the girls sat on their stools and watched, Mama and Dada downed some gin and tonics, and then we had a family dance party to Abbey Road. Cancer ain't stoppin' us!

News will come as soon as available.

A Great Cause

Team Lick is raising money for AT/RT research. This is definitely not something you hear of every day as AT/RT is extremely rare and the vast majority of cancer research funding goes towards cancers that affect adults. Go Team Lick!

Evy in Fredericksburg 15K Tee Shirt

Catching up on Boston pictures

Aquarium

Saying goodbye to Heidi- the wonderful nurse who entertained/took care of us at the Clinic

Saying goodbye to sweetheart Child Life Specialist, Heather
(Note Evy's cute leg brace.)

Radiation complete - Time to ring the bell!

Stella has to try it out

Evy rings it!

Plaque on bell- made me cry every time I read it.

The famously loving and beloved Nurse Rachel!

Stella in our home-away-from-home in Newton, Mass. (Home of the Fig Newton.)

Mama and Dada

On a walk with the girlies

Stella snacking

4.18.10

No news is good news. Still enjoying our little break and Evy is very happy. MRI is scheduled for April 22. Part of me says that Earth Day is good luck... the other part of me is frightened that the Earth heard me when I said I was going to use as many paper products as possible to spite it for giving my daughter AT/RT until she was all better. Shhhhhhh! Don't tell!

But seriously, start up your No Evidence of Disease vibes. Thanks. (-:

4.13.10

Evy with Aunty Jess

Dada and Evy

Stella Bella and Evy Beth

Evy with Aunty Karen

Evy day was a success. We had a wonderful time at the Fredericksburg run, and our family up in NYC raised money for us as well at the Evy Beats All 3K and drinkathon. Thank you so much to Andie McConnell who coordinated the 15K, Jack Hyland of J. Brian's Tap Room for choosing us as their charity, Meg Best for putting together the Evy Beats All 3K, The Gutter in Brooklyn for donating money per drink, and all of the family, friends, and people we have never even met who all came out to support us.

Evy is doing well. This is the one large gap in our protocol so we have 3 weeks off before the next chemo. She will be getting an MRI soon, so start up your NED vibes. (No Evidence of Disease.)

4.6.10

Evy just had her last dose of an oral chemo that she has been taking at home. She has done very well so far. This is typical; chemo side affects don't usually catch up with her right away. She was nauseous in the beginning, then got better, and then got nauseous again tonight. Luckily, Brian had her in his arms on the edge of our deck, so Evy just had to lean forward and puke off of the side. A cancer parent's dream throw up! No clean up. Ha, ha.

Life is seemingly normal. We came home to our fixer-upper needing some help, so we are acting on that, and that makes life seem as it was before. You get on a high when everything seems great and normal. I DVR'd Oprah while we were away and got about a zillion episodes, so I have been watching them when I get the chance to relax. Tonight Brian was finishing getting the girls to sleep and I watched a seemingly innocuous episode about diabetes. The doctor said, "With diabetes it comes on slowly.. I mean, it's not like brain cancer where you pretty much know that your life expectancy is short." I was like, DUDE. You just sucker-punched me. And it made me sad. But we are doing well and truly, truly, truly hoping for the very best for our baby girl.

Today I was reading books to the girls in the backyard and I noticed Evy was tangled in her feeding tube. When I untangled her I saw her index finger point a bit. I freaked out and just said, "Your finger moved!" over and over again. She got so happy because she knows we are working on getting that hand to work again. She is just so sweet. I hope that it wasn't a fluke. I want that hand to work!

I have been getting compulsive about using my VitaMix to make ridiculously healthy food for Evy's feeding tube. I can put in anything and it just obliterates it and squeezes it into her tube. It's fabulous. How many mothers dream of having a direct line to their kids' stomachs so that they can get all of those nutritious foods in? Many, I am sure.

We have entered the twenties, as in Week 20, a milestone I have been excited for. I fantasize about the day that Evy gets her central line removed from her chest and she can take a bath. Yesterday Evy became fixated on a little pond in a picture book we have and wouldn't let me turn the page.. she just said, "me, me, me, me!!!" I told her that when she gets her tubies out we will go and stay in a hotel with a pool. That appeased her.

April 10 is Evy day.... runs in Fredericksburg and in NYC. Very exciting.

4.3.10

After a particularly hellish day yesterday with major delays in Evy's treatment and Brian and Evy not getting home until 2am, we have been reintroduced and welcomed back to the PITA that our treatment in DC has been. Yay. Only 34 more weeks. Oh wait, no, because radiation was delayed by 4 weeks now the chemo drugs on her road map don't jive with recent radiation so we may be continuing our treatment well into the Christmas season. Yay.

Sorry to be whiny. I hate reading whiny blogs. It's just not all sunshine and roses. Evy couldn't eat until after her procedure at 2pm yesterday and that was delayed until 6pm. That does not a happy mama make. Don't mess with my girly, people!

Evy got a lumbar puncture and an IVIG infusion yesterday. She started oral chemo meds yesterday that will last 5 days. Our chemo round was delayed because our regular doctor is on vacation and the doctor in charge in the interim seemed confused.

But the good news is that it is the weekend and we are all home together.