6.30.10

Having a nice, healthy week. We have crammed 7 appointments into 5 days. Check-up, PT, OT, ST, more PT, EKG, and leg brace adjustment. I think that when I got pregnant we got lucky to have surprise twins because at the same time we went from being city people to being country people. Twins + Mama = Instant Access to HOV Lane. How is that for positive thinking for you?

I never really understood the difference btwn 95 and 495 when we lived in DC for 6 years. We didn't even have a car for half of that time! I would smirk when I heard about traffic on the beltway on the radio. Now I get it, I totally get it!!

6.25.10

Evy is still doing well. She did get a platelet transfusion yesterday. She is still nauseous and loses her lunch pretty often. (I love how that is doing "well." But it really is!)

The other night Brian made the girls a little stepstool. I told the girls yesterday that the stool was theirs to use to reach things they normally cannot, like the bathroom sink for handwashing. In our playroom there is a shelf that is quite high that stores all of the girls' puzzles. Today Evy pulled her little two foot stepstool over beneath the puzzle shelf (7 feet off the ground) and begged me to drag over a kitchen chair so that she could climb from the stepstool onto the chair to reach her puzzles. Let's just say my worries about the effects of radiation, chemo, and a brain tumor on her IQ were eased a bit. Devising multi-stepped plans to reach PUZZLES? Awesome.

6.23.10

So far, so good this round. Evy has been having fun at home with Stella. She is neutropenic and you know the drill. She gets so mad that she can't go roll in dirt outside. She did have a rough go of it for several days. From Friday til about Tuesday she barely kept any food down. I think that carpets should come with a chemo-vomit warranty, don't you? Ha, ha. Just a little cancer humor. Anyways, Evy has a clinic appointment tomorrow so we will see if she needs an transfusions, etc. Same old, same old.

Pics from the last month or so

Stella with sticker on cheek (she wouldn't take it off for days; she wants to be like Evy.)

This girl is a dream!

Stella with skirt on her head.

Chemo Round Week 27

Who notices the chemicals going into their veins when they get to paint?

Evy with Nurse Jen and Margy (Evy's favorite play therapist EVER!)

Gretchen (art therapist and one of Evy's best friends at the clinic.)

Pictures from Growing Hope Picnic 5.20.10

6.18.10

Evy just completed her tenth round of chemo. Today I was chatting with a doctor about Evy's progress and the fact that this is her tenth round. He reminded me that the majority of chemo rounds she had endured which have been high-dose have been heavier than what adults get for cancers for which chemo is considered a viable therapy. Her light weight + HEAVY chemo needed to kick AT/RT in its arse = heavier chemo than an adult with cancer sees.

Our little girl is a super-hero... and considering that she has been powered so much by her amazing ng tube diet, when I picture her in her super-hero outfit she has a huge kale leaf as a cape.

I am just so proud of us. The four of us have banded together to fight. We all play our role, and we are succeeding. The challenge has been more than a family of four should have to handle, but we have been doing a pretty awesome job. Is our house immaculate? Is our laundry always done? Is our lawn always mowed? Of course not. What is important? That we help our daughter/sister/friend kick cancer's ass. And that we make sure that each part of our four-piece puzzle is pretty happy, if not very happy. And somehow, we make it. GO TEAM! GO, EVY, GO!!!

6.16.10

Day three of chemo- Evy is doing well. Got pretty sick this morning before getting in the car to go to the clinic. All of her hair is gone again due to starting the heavy chemo again last round. This cycle is 5 days long. The first 3 days take all day, so Brian takes her. Having both the girls there for so many hours with no naps just doesn't work. Thursday and Friday are shorter chemo days, so I will take both Stella and Evy and Brian can get back to work. He hasn't been to work since last Tuesday. All of the time donated by you federal workers has really been a huge help to our family. Thank you so much.

6-13-10

[dada]

Today is the last day of week 29, and tomorrow will bring a new round of chemo, just as Evy was getting nice and healthy. Of course, this is the cycle that we'll be going through many more times, and we just hope Evy can do as well as she did last round and stay out of the hospital.

Last week we spent a couple nights at the Ronald McDonald House, as we had several appointments. Evy had a PT and an OT session at our new therapy group, which is where we had taken her when she was little (well, littler) and had torticollis. We really like everyone there, and know they'll do a great job. We also had a clinic check up, just to make sure that all systems are a go for the next round, which they are. Stella also had her first dentist appointment.

So, we're just enjoying our weekend and getting ready for next week. Evy is going bald (again), reminding us that we're back on the heavy stuff. But if anyone can handle it, it's her...

6.7.10

Well, somehow Evy did it! She was neutropenic with absolutely no white blood cells/immune system for roughly a week, and she never got a fever. We are scratching our heads wondering how we could all be so lucky. Her counts are back up and when she got home from the doctor today I released the girls back into the wilds--our yard. We had some water out front from a thunderstorm and the girls kept throwing sticks in it. Evy was looking at it like she really wanted to jump in. She knew that I was watching her and that she shouldn't (her shoes and leg brace can't be wet or they could break down her skin, and she has a central line and cannot submerge it in water, let alone nasty pondish water.) She succeeded and got halfway in before I could get her out and all along she had this devilish grin, just laughing at me. So cute. I am more and more reminded of the pre-cancer Evy, she was always the fearless twin, the one most likely to not get scared and to jump right into new situations. (I used to call her Amelia Earhart!) Today a big truck went by and as usual Stella came running for me like Cary Grant running from the plane in North by Northwest. Evy just looked at the truck and kept playing. This fearless attitude and downright gumption are what is getting her through this ordeal. She is our inspiration and our heroine.

Once her counts rose, I was able to start up my Vitamix once again for Evy. I swear her high-raw vegan diet is doing wonders for her health.

The hair that has been growing back while she has been getting the lighter chemo is now falling out again. This is the first day of week 29, in 24 weeks we can say buh-bye to chemo and let those dark tresses grow like crazy. I can hardly wait!

We have been keeping busy and doing more around our house than you'd think possible with our situation. But it is helping us keep our minds off things and focus on happy stuff. And I am so happy that Evy's tumor has stayed away, no new ones have grown, and we have this luxury.

Life is good, people! Now enjoy yourselves.

BEST NEWS EVER

The email we just received from our doctor:

We have confirmation that this is not a germline mutation!!! That is excellent news!

No INI1 deletion. Not lacking tumor suppressing gene on chromosome 22. Andie was right; 22 is still our lucky number!

Edit: Just to give some more info...
We had sent our blood work off to Philly (the #1 AT/RT geneticist works up there) to find out whether or not Evy had this particular gene deletion. There's basically two ways that this tumor can come about (of course, they're still discovering exactly how this all works). It can either be a gene deletion, in which at time of conception the mother's and father's genetic info combine in a way that leaves out a gene on the 22nd chromosome. This particular gene is a tumor suppressor gene (i.e. it fights off tumors), which is good. They think that one of the parents can actually be a carrier, but not have the disease. But, of course, you wouldn't know you were a carrier until your kid got it and you were tested. Most AT/RT cases have this deletion (approx 75-90%).

In the remaining cases (like Evy), the tumor arises based on some random mutation during cell growth, but the tumor suppressing gene is still there. This is very good for a couple of reasons. First, since she has the tumor suppressing gene, she is better able to fight off tumors both now and in the future. And second, since it's not based on heredity she won't have to worry about passing it on to her kids, and we wouldn't have to worry about passing it on to another child if we had more (which ain't happening, regardless of what Jill thinks).

Needless to say, we are very excited to hear this news. It is still a battle, since this disease is really nasty and it's difficult to know if every tumor cell has been removed or destroyed. We still have lots of chemo and then years of scans to make sure that no more tumors grow, but it gives us some hope...

6.4.10

Clinic visit yesterday. Got some platelets and then came home. Her ANC is zero. Brian started to discuss our good luck so far with no fevers and our oncologist told him to hush up and please not jinx this. So maybe I am jinxing it by telling you? I dunno. Evy is doing well, happy as a clam, only throws up about once a day. Yay.

6.1.10

Clinic visit went well today. She didn't need platelets or hemoglobin yet but she did get her routine dose of antibiotics. She is neutropenic and has almost no white blood cells at the moment. Looking forward to her counts coming back up and hopefully no fevers.