1.30.10

A quick look at the MRI yesterday by our Boston Oncologist held good news: no tumor regrowth; the brain has grown into the large hole left by the resected tumor (Brian said the hole is now as small as her eye, and it was very large before); the questionable mark on the side of the tumor site is still there, perhaps scar tissue from surgery. The pros will analyze the MRI and give us a full report, but this initial glance looks fabulous!

1.28.10

I have been so lax about reporting news. If you have been following us from the beginning, you may notice that when we are home and Evy is well, I neglect the blog. Well, I am happy to report that we had a glorious time after Evy's last round of chemo. We have been in our homes (in Virginia and now in our comfy-cozy temporary home in Boston) just enjoying life and each other. Evy and Stella have been bonding so much, playing together and chatting. They have enjoyed having Grammy Pammy here this week and Evy actually got to see her instead of being in the hospital. Evy has been crawling around and walking with help. She has said some more words as well. She says the first part of "uh, oh!" So when something falls it's, "UH!" and an adorable little surprised face. She said "Grammy" twice, but only Grammy and I heard it and then she never said it again. So now I am wondering if the house came complete with an invisible ventriloquist.

Brian took Evy to the hospital today for her next round of chemo. (Did I mention we are in week 10? Yay for double digits!) She also had a hearing test and a CT scan of her head today. Tomorrow she will have an MRI. The radiation folks will blend the information from her CT scan and her MRI to create her radiation plan. Radiation is due to start on or around February 8.

We are used to always having a private hospital room back in VA, so having to share a room with another child here in Boston is crazy!

Did I mention our car got into an altercation with a Lexus shortly after we arrived? Luckily it's their fault and as my friend Gena assured me, we have now "appeased the problem Gods." No one was hurt and our perspective on life and what is important has changed so dramatically that we were able to have a nice chuckle about a car accident and a banged-up car.

We're in Boston!

Sorry it took me so long to post that we are safe and happy in Boston. Brian and the girls arrived on Thursday night and I got here on Friday. We are very comfortable in the house we are staying in and it already feels like home. Evy is starting chemo on Thursday and we have all sorts of tests for the radiation coming up.

So you know, why we are going to Boston

Why go to Boston for radiation when we already live near a major city and excellent medical facilities? Evy is going to be getting six weeks of proton therapy radiation, a newer kind of radiation that is only offered at a handful of institutions in our country. The radiologists can control the beam of radiation much better than they can with traditional radiation and will therefore not damage the healthy tissue in Evy's brain. Traditional radiation would have gone into her tumor site and then out the other side of her head, damaging all of the good stuff on the way out. With proton therapy, they can stop the beam where they want to inside her brain and not have it travel through that good stuff. We are so excited and grateful that this technology exists at this time. We are hoping that it is the key to Evy's survival. More info for all of you tech junkies at Wikipedia.

Evy update: Doing well! Still nauseous at times. We have our last appt. at the Clinic this afternoon and then it is time for the girls' first plane ride tomorrow. They are so excited. Yesterday Evy and I were looking out the back window while Stella was still napping and she spotted a plane in the sky. She got so excited and smiley, and then when it went over the house and disappeared from sight she started crying. I think with all of this airplane talk she may have thought that that was the plane coming to pick her up. She and Stella are also newly obsessed with the moon, so we had to take them outside last night about four times to look at it. They blew kisses goodnight to the moon at the end of the night.

And my favorite Evy story: the other night when I laid down with the girls to get them to sleep for the night, I explained to Evy that her boo-boo was all gone, but that we were continuing to take medicine and do "ouchies" to keep it away. When she heard that her boo-boo was all gone, she pumped her little fist in the air several times and got the biggest, most excited smile on her face. You could just feel the anxiety she must have melting away, and a sense of relief was evident by the sounds she was making. Like a little baby YESSSSSSSSSS! I have been reading a lot about the mind-body connection in fighting off disease, and I believe that if anyone has a positive outlook in life, it is Evy, and that will be her saving grace. She is just all smiles.

Run to help Evy Beat Cancer

Do you like to run? Do your kids like to run? How about your neighbors and/or coworkers? J. Brian's Tap Room and The Fredericksburg Area Running Club are holding their 2nd Annual J. Brian's Tap Room 15K/1.5K Family Fun Run/Walk in Fredericksburg, VA on Saturday, April 10, 2010 at 7 am. In the loveliest of gestures, J. Brian's Tap Room and FARC have decided that this year's proceeds will benefit Evy and her fight against AT/RT. We are overwhelmed with thankfulness. As fairly recent transplants to the Fredericksburg area, we realized how special this area is before Evy was even diagnosed. Virginians are a generous and kind-hearted bunch! Follow this link to find the registration form for both the 15K and the 1.5K and put on your running shoes for our darling girl.

In Evy news: her ANC was rock-bottom at her doctor's visit on Friday but so far we have dodged any neutropenic fever! Now go knock on some wood for me. Evy has been practicing walking, crawling, singing, and talking. Just being home this week has brought on so much more talking experimentation due to being around Stella. Stella is very helpful and pushes Evy's IV pole around when we move Evy or she practices walking. (The IV pole holds her feeds.)

A Quiet Week

What a wonderful title for a blog post. Today commemorates one week of Evelyn being at home. This has not happened since October! It has been so nice. Evy has been happy for the most part. She does have nausea and we are usually waking up 2-3 times a night to change the sheets, pajamas, etc, but that is easy-peasy compared to hospitalization. Today Brian and Evy are at the Clinic getting platelets and hemoglobin. I was supposed to take both of the girls but around midnight I decided that maybe we should split up the task. It is so much to try to get to the Clinic at 8:45 with both girls in tow; it's over an hour drive and in order to have them properly breakfasted, feeding tubed, clothed, and out the door... and then entertained at the doctor's office until 3pm ish... well, that is when I feel totally and completely overwhelmed. So thankfully I have a really wonderful husband who takes Evy and we have some really wonderful friends and perfect strangers who donated leave time to Brian. And Brian has a perfectly wonderful employer who has made to possible for Brian to work in the Boston office while we are up there for two months. Yes, there are some really wonderful things going on. (As an English teacher I say breaking the rules and using the word "wonderful" so many times in one paragraph is a style choice.) (-:

Speaking of wonderful things, mid-week we received the most beautiful act of love and comfort from a dear group of twin mama friends of mine. They each created a quilt square for both Evy and Stella and then made a quilt. The results are just beautiful. Check them out:




The birds represent Evy, and the stars represent Stella. The tags on each square show who made that piece. Aren't they just lovely? I imagine the girls curled up in them watching movies when they are let's say, 12. The quilts will be worn and soft and lovely from all of the comfort provided over the years. Thank you, friends!

We are starting to get packed for Boston. Corporate Angels has Brian and the girls on a flight on next Thursday. I am going to drive up with all of our stuff. What a mother will do for a little alone time, right? We are staying in a home in a Boston suburb provided by perfect strangers... a friend of a Fred friend whose parents will be vacationing the whole time we will need lodging... how perfect is this? (Or should I say wonderful again?)

PS to 11.13.09

Our Oncologist assured Brian that she calls it NED because ATRT is so aggressive and fast-growing that she thinks it would be very obvious to her if it came back. Makes me feel a little better, but not 100%.

1.13.09

Brian is with Evy getting more chemo today at the Clinic. He ran into our Oncologist's boss, the cancer bigwig at Children's National Hospital. (We are treated by Children's but get our "stuff" done at Inova Fairfax simply for convenience of location. The Children's Oncology group travels there.) He is a big name in pediatric neurology and although we have not met him, he has been very involved in reviewing Evy's MRIs and protocol and helping our doctor, who is also quite esteemed, make decisions. It looks like our NED has been stripped from us. He told Brian that the dye for the last MRI had been absorbed into something around the rim of where Evy's tumor was and he does not know what it is. It may be regrowth. We will find out more when she gets her MRI in preparation for proton beam radiation in Boston. To say that I am livid that a brief and chance encounter with this doctor brought us this news is an understatement; to say that my heart is not hurting would be a lie.

1.11.10

Hello, all. We have enjoyed our time at home. We have also run ourselves ragged with Evy's medications, ng tube feedings, and care (and of course, caring for Stella, too.) Evy has been nauseous at times but has also been having fun. Last night we put the girls down for bed and after Evy threw up twice and we got her back to sleep twice, we heard another cry. This time, Stella was sitting up in our bed covered in her own vomit. We just had to laugh.

Crossing our fingers for no fevers.

1.8.10

Chemo ends tonight at 7:30, after which Brian and Evy will come home for the first time since Dec. 22. Our at-home nurse is about to drop in to teach me how to administer Evy's feeds through her feeding tube. This week I was reading online about a transfusion of many people's plasma that help with the immune system (IVIG.) I had Brian mention it to the doctors today and they said, "no, no, we usually only do that if this different kind of count is low... etc." Then they come back in an hour or two later and announce that those counts are low so they will go ahead and do it. It makes one wonder, when would they have started looking at those counts if we had not learned of this independently and brought it up? Would she have benefited from it the last two rounds of chemo? Just reminds you that no one cares more for your child than you and to always, always ask questions!

Looking forward to having Evy home.

More new pics below. That finishes up our recent shots.

Look how well her scar is healing!
Jammin'
As Brian says, this is why the nurses love her.

This current hospitalization: Evy riding in her wagon
Stella and Evy's new tats
Stella is playing with the suction tool, and Evy is scared. Mama is oblivious.

More pics

The big snowstorm right before Evy went back into the hospital
Skinny underneath those layers

More pics

Dada dancing with girls after last round of chemo
Stella with new hat
Evy with new hat
Dada and Evy
Stella

1.7.09

Noticed Brian has not updated the blog, so I will. Why would Brian update it, you ask? Well at 1 am last night a stomach bug hit me in the hospital. I weakly called Brian and we switched places at 2:30 am. Send your positive vibes that Evy does not get this! Brian sanitized the room like crazy when he got there. Crossing fingers. Last time I spoke with Brian, Evy was still very happy and not sick from chemo (or my illness) yet.

I started uploading some old pics below. I apologize that they are a little out of order. And old. Blogger is not terribly user friendly picture-wise. In fact, I wanted to upload several more for you but it is now not letting me. So enjoy this installment and I will post more soon.

Brian had fun decorating Stella for Christmas while Evy and I were at the hospital.


Stella munching.
Dada with girls, post-surgery, pre-chemo.

Catching up on pics

These pics are from a while back. This batch are post-surgery, pre-chemo.
Stella experiences her first lollipop ever!
Evy does, too.

Evy asks to re-don Stella's Halloween costume, gets kisses.

Birthday

Evy and Stella are 2. We can hardly believe it. Evy spent the morning getting chemo inserted via spinal tap. When we arrived in the sedation suite the nurses down there had decorated her room and even had a little gift for her there. So sweet. The biggest gift of all was that they got a lot done for her while she was sedated all at once. So pulling stickers off of places that would hurt, giving her a shot, her repeat hearing test complete with wax removal, all were done without her knowing it. She needed a repeat hearing test because she "failed" it yesterday. Chemo may permanently impair or destroy her hearing, so we have to check it each time we start chemo. If her hearing is getting bad, we will back off on the drug that hurts hearing. (Same with vocal chords- she gets a test for that, too.) Turns out she just had fluid in her ear and her ears are fine.

Today we finally got to hang out with the therapy dogs, which I have really been wanting for her for the whole time we have been here. We got one of the doctors to write a pet therapy order for her so that she can see the dogs even if she is neutropenic. She should see the dogs 2-3 times per week. She was overjoyed to see them. We saw a miniature Datsun [Dada has to edit this to Dachshund, but loves the mental image of a miniature Datsun visiting Evy] named Moxie, and a Golden Lab named Miles. She just loved it. She threw the ball for Miles and petted them both like crazy. I know it reminds her of our bygone summer days when we first got Misha. Evy, Stella and I would spend a lot of our time hanging out in the backyard with Misha, playing fetch. What a great birthday gift!

Stella is home with Grammy Pammy and I am sure she is having a lovely birthday as well. Weirdly, the hospital is starting to feel like home to me. I imagine Evy and me as college roommates living in a dorm room. Now if only there were copious amounts of beer, my dream would be a reality...

Edited to add: Um... Brian, I may have to cut off your access to the blog if this commentary on my lack of canine knowledge continues! -Jill

Edited to add more: I just googled it and a Datsun is a CAR! I will never live this down when I get home.

1.5.10

No new news. Evy slept in 'til 10:30 am today. She thinks she is a teenager. Now she is wide awake at 9:40 pm in a darkened room sitting in her high chair by request. Our nurse is singing her a monkey song. Yes, this is how we roll.

1.4.10

New central line in. Chemo postponed until Wednesday to let antibiotics from last illness to run their course. Dada and Stella have a stomach bug of some disgusting proportions, so tomorrow's birthday rendez-vous is postponed. The girls turn 2 on Wednesday but we had to all be here tomorrow for genetic testing so we were going to celebrate a day early. Looks like we'll have to wait. Things that made me happy today: Evy saying "wa" for water, "ya" for yogurt and eating some food (after being starved til 3 for her surgery- the one day she actually wants to eat.) Go figure. She is in good spirits and feels great.

Twofer Sunday

Jill here...

I want to thank all of you federal workers for so generously donating leave to Brian. He was only allowed to receive three months worth of vacation days and he was given six by all of you wonderful people! The excess time has been kicked back to those who donated it... We cannot express how much this helps our family. Thank you so much.

I am back tonight with Evy and have nothing terribly exciting to report. We are starting chemo tomorrow and she has surgery at 12:30 to put her new chemo port in her chest. She is currently snoring. Maybe all of this time of sleeping with dada has made snoring rub off on her, too? We did have a snafu when I got here... they gave us a high chair to use and when I took her out of it her feeding tube was snagged on her port in her groin, the sticker that holds it on her face was instantaneously ripped off, and her feeding tube came flying out. (Yes, sounds like a scene in an Indiana Jones movie when I type that.) The poor thing then had to have another feeding tube shoved down her nose. So sad. They had had the last feeding tube going into her lower intestine but did not place this one properly so it is in her stomach. Today we switched what she is being fed in her tube from a generic soy formula provided by the hospital to a hard-core cancer fighting concoction dreamed up by lil' ol me and inspired by a new ATRT mama friend of mine. Hemp milk, flax seed oil, turmeric, and while her ANC is good, dehydrated and then blended cancer-fighting raw veggies... Take THAT, cancer! On a side note, she has gained so much weight since she got her feeding tube and that makes me incredibly happy. Like a little sack of sweet potatoes. And very, very sweet.

1-3-10

Well, the lack of post yesterday was mainly due to a lack of happenings, which is a good thing. We're basically in a holding pattern for a day or two until tomorrow, when her next round of chemo will start. The main thing we are dealing with right now is diaper rash, which we are trying to clear up before chemo, since it will only get worse once she starts peeing out the chemicals. Unfortunately, with all the IV stuff that she's on, she pees about every 12 minutes, so keeping her dry is a Sisyphean task (nice reference, eh?).

Other than that, we are just trying to work on eating and physical therapy. As for eating, yesterday she would at least put some food in her mouth, before spitting it out. The main concern is that she would lose her appetite for food completely, but we're hoping that a nice non-hospital stretch will get her back on track (fingers crossed for a non-hospital stretch). Her stomach is still a little iffy, since it hasn't had food in it for a while. That should be remedied by Mama's arrival today and some nursing. As for PT, she has definitely been using her arm and leg more than at the time of her surgery. We just have to keep working on things, so we don't lose any ground. The biggest challenge is practicing walking, as she is always tethered to an IV pole by several tubes. Once the antibiotics are finished (today or tomorrow) that will lessen, and she'll get some freedom when not getting chemo.

I guess that's about it. Mama will be reassuming her blogging duties today, as I'll be heading home with Stella. Goodbye for now.

Happy New Year

[Dada again]
Sorry for the post being so late...Happy New Year! Also, I hope to post some pictures either here or on Flickr in the next couple of days. I'll let you all know.

Today was a good day, and Evy is acting much more like herself. The only problems faced were a swollen foot, which they thought might be caused by another bloodclot (ultrasound was negative), and a slightly low hemoglobin count resulting in a blood transfusion. Other than that, the day was spent riding in the wagon, playing with toys, pointing to lots of stuff, and acting silly. There were times that I would walk out of the bathroom to find Evy sitting on the bed with her fleece doggy blanket over her head. Just waiting for me to pull it off and see her smile. We did pick up a rather annoying new game around bedtime tonight, which consisted of Evy moving her jaw side to side to grind her teeth together making a fingernails-on-chalkboard like sound. It made me shudder, and Evy thought it was HILARIOUS to keep doing it to get a rise out of me.

Her mouth sores are all gone, and her congestion is lower but still there. I suctioned a ton of goopies (as we call them) out of her one nostril tonight. She hates that little suctioner, but I find it strangely satisfying. Her belly has filled out, and is no longer wrinkled. Tomorrow we are going to focus on walking, and today she was trying to use her bum arm several times. It's great to see her with some energy and spunk in her. She even put my bread from dinner in her mouth, and once the straw from my drink, so she's thinking about eating and drinking, but still doesn't completely trust that her mouth won't hurt and that it won't make her sick. This happened last round, where just as she was starting to eat again she was right back into a new round of chemo which knocked out her appetite. Hopefully we can buck the trend of hospital stays in between rounds of chemo.

So, looking forward to the new year, it will certainly be an adventure. In a couple of weeks we head up to Boston for a week of preliminary tests, then a week off, then we start proton therapy. Still no confirmed dates, and still not exactly sure how travel will happen if Evy happens to be sick at the time. But I'm sure we'll work all that out.

Five more days until our little girls are two. Hard to believe how much they've gone through in their as yet brief lives. It's hard to believe Evy is as young as she is, and is as strong as she is through all this. There's another little girl in the hospital with us right now who is 6 days younger than the girls and has been having treatment since she was 10 weeks old. I guess we were lucky that Evy got so much time before treatment to learn to walk, run around the backyard with her sister, etc. And we are all just looking forward to getting back to normal. Sometime around 2011. Can't wait to see what 2010 (we're all pronouncing it "twenty ten," right?) has in store for us...