This Star Won't Go Out

Esther was ‘out and about’ on Saturday; first as a face painter at a special education conference that mom helped to organize and then to high-coffee with mom and sister, Angie. After that, the girls went grocery shopping which was a big deal because, as best we could figure, Esther had not been full blown food shopping for nearly a year! While the others walked, she scooted around driving one of those engine driven carts for a while without incident until she rounded a tight corner and bumped up against a stack of something-or-others. Other than that, not too shabby for someone who has never been to driving school!


Beginning this week, along with her regular visits to check up on her general status, Esther starts twice weekly visits to a physical therapist. She now has at least three separate appointments a week in Boston (two trips total though, thankfully). Also, within the next week or two, her growing medical team (oncology, endocrinology, etc) will meet to confer about the next step. There are some differences of opinion on how to go forward in her treatment so they, and we, need wisdom. The great news is that they have instructed us to think in terms of a “long term” care plan! What this means we are not quite sure, but it sounds pretty good! We’ll take this news as they intended it: great news, indeed.





4pm-ish Tuesday, March 31, 2009


I had this weird dream last night. It was spectacular. You know how I’ve complained about wanting to kiss a boy? Sounds dumb but I want to like someone and someone to like me. Eesh I sound like a 2nd grader. Whatever.


In my dream we were watching tv or something, and this boy I was with kissed my cheek and I got all tingly and it felt amazing. (haha not like I was getting turned on, oh geeze this sounds wrong.) Then he traced my neck and kissed the back of it. Oh my goodness it felt nice. But there were like people watching us, or something, so we went into another room. We played GameCube and watched tv, and I put my lips like near his face or something?? But nothing happened.


Then I woke up and felt sad cause it wasn’t real. But then I was thinking and I was like, who was the guy? hahaha.


I also had this dream about the B-s boys. They came and I hugged Bruce and he lifted me up really high or something? Then I went to hug JT but he just waved his hand. Then I went and waved at Ryan. They were all scowling.


Later I asked them why they seemed so upset, and they said cause it was Graham who was sick. But he wasn’t . . . so odd.


So yeah I thought the kid in the kissing dream might be Ryan? But then I remembered I had a dream about Jake S (cohenism) and he’s awesome so it might be him?


Or just some guy as made up as those kisses.


Oh and I don’t know if I’ve said this before, but I can’t even kiss a boy now because my chemo from my spit could harm him. Kinda makes you sad when something you want can’t even happen.


Hmm. Speaking of wants, the LeakyCon 2009 is happening from May 21-24. IN BOSTON.


Wtheck is this you ask? It happens like once every two years. Harry Potter fans from around the world meet up to hang out and listen to Wrock—hP music—and HANK AND JOHN GREEN ARE GOING TO BE THERE. IN BOSTON. IN BOSTON AT THE LEAKYCON!!!


I want to go awfully bad. SO bad. But tickets cost 195$ a piece, plus 30$ to hang out with the Greens. Plus I don’t know anyone going. But like Mom or Abby and Angie could [go] with me! Sadly we really don’t have money. I could do this for Make-A-Wish . . .




Eek anyway I wish I could go and I wish I could kiss someone and I kinda wish I could make friends with someone going to the magical LC09. Sigh.


Anyway this was an incredibly immature and frivolous entry. Thinking of this more than health.


Oh, on a good note, I made a “pal” on OMGPOP.com/#/balloono (haha), and we make designs out of balloons and kill ourselves with it. Like stop signs, triangles . . . it’s cool and it makes me happy. :)




Okay bye.

Untitled,

APRIL 10, 2010





Wednesday, April 15, 2009 12:55 PM, EDT


Esther’s team of doctors at Children’s, Dana-Farber and Mass General Hospital are very happy with her progress so far! After much discussion and review of her case, their recommendation at this time is to continue with her Sorafenib (a “smart” drug) chemo treatment which she takes twice daily at home, and NOT to treat her at this time with I-131 Radiation. Fortunately her side effects to the chemo have been minimal compared to what some suffer (she has some rash, hair thinning, stomach discomfort). I have to admit I’m happy to hold off on the radiation, since last October is when she had her last treatment and got so sick we were afraid we’d lose her. The doctors are also waiting to see the result of her CT scans/PET scan next week on the 23rd. If they see either continued shrinkage of the tumors in her lungs, or no change for the worse, then we’ll continue with her current treatment schedule.