This Star Won't Go Out

On Wednesday Esther moved from ICU to the oncology floor, and into the most amazing room they have! It’s like a hotel suite, with 2 tvs, a couch, a queen size hospital bed, and our own microwave and fridge. Even better, it looks like we’re on track for her to come home by about Tuesday of this next week.


Her prognosis hasn’t changed, and her cancer is pretty advanced. We have hope, though, that if this new experimental chemo she started kicks in, it could halt the cancer for a while and give us some time. She’ll be coming home to an electric bed that moves up and down (Abe has already been experimenting on it!), and with all the pain meds, and breathing apparatus that she needs to be as comfortable as possible.


Thank you for all your notes. Esther has been reading everyone of them . . .


Lori



Esther and Pancake in her bedroom,

QUINCY, MASSACHUSETTS, 2010





Friday, May 21, 2010 8:26 PM, EDT


Esther came home from the hospital on Tuesday, and is settling into her newly designed downstairs room (the dining room converted to better things!). We have good care daily from the Brockton Visiting Nurses who come in for an hour or so to check on vitals, do labs, and drain her chest catheter. Some days are good, some just okay. This afternoon Esther sat for a while on our porch, and earlier she watched 2 episodes of Doctor Who with her brother Graham (Abe is too little for the doctor . . . ).


She says thanks for all the great messages and internet love and hugs . . . They really make her happy.


Lori (mom)





Thursday, June 3, 2010 7:49 PM, EDT


Esther is doing okay. She has been more tired lately, and more nauseous—probably the new chemo she’s been on. They are giving her a one-week break this week, so hopefully that will help. She is comfortably moved in to her downstairs bedroom, and it’s wonderful since people can pop in and out, and her brothers can check on her. It’s a close walk to play WII with them, or join us in the kitchen or the porch for a bit.


She is excitedly planning a Make-a-Wish “reverse” trip right now, where they are flying out several of her close friends to visit her at a hotel in Boston. That will be over the 4th of July weekend, and since we get to be there, we are excited about it too!


Esther had a wonderful time with Grandma and Grandpa this past week, visiting from South Dakota. We managed one special dinner out at a favorite restaurant—but mostly just hung out in her room.


Also, big sis Abby recently arrived home from Germany, which is a great encouragement to everyone! We’ll update again soon.


Lori





June 5, 2010





It’s the Adivan. It’s the bloody Adivan and I know it but I’m still feeling emotional and . . . well . . . shitty—Annette said when you take Adivan, you lose your inhibitions—the emotions you already have are just amplified.


So basically: I’m sad. I’m incredibly lonely. I’ve no one to talk to except Lindsay, who I feel doesn’t deserve this Adivan-shitty-mess talk (plus she’s busy right now) or like Mom/Dad. Kind of sad.


What do I say to Angie? She’s over there. On the futon. I could ask her about her “bf” Bill. Or her friends. Or booze or weed. Or angst. There are things she’ll talk about with me. I could ask what she thinks about. If she ever wonders when I’ll die. Because, let’s face it, we just picked out my spot in the cemetery. Very literally. Nice spot, nonetheless.


“I think that’s why I go out all the time. Because I don’t like to think.”—Angie. Yeah, okay. Angie and I are two extremely different people— Oh dear goodness I haven’t hugged anyone for a hug in a long time. I feel sad. And a little angry. At what, I don’t know. I miss Angie. I want people to ask if I’m ok; if I’m scared; if I’m unsure what the hell I’m feeling.




My cancer? suspected to be in my shoulder.

adivan

is quite a little

asshole.

excuse moi francais

although . . ..

it helps

me sleep

and it isn’t

taken until

the nighttime.





Wednesday, June 9, 2010 1:28 PM, EDT





A quick note: we are soon off to the hospital as Esther continues to have ups and downs. Last night, Oma and Opa (Lori’s folks), Abby, and mom and dad were together for big sister Angie’s high school graduation (yeah Angie!). It was a gorgeous evening here in Quincy and Esther was simply “radiant” (as Charlotte said to Wilbur). Now, today, she’s having trouble breathing so mom and daughter are leaving soon via ambulance. I’ll meet them there.