This Star Won't Go Out

Just last Friday evening Esther strolled (or rather was pushed by Angie in a wheelchair) around a local cemetery where she picked out her spot. Am I saying this? What parent helps their child choose a plot? This is not what we want. The joy and sadness of watching two sisters roll the grounds and simply be together was surreal. I cannot explain why hope sustains us even in the presence of innocence undone. Very few people in our culture talk about death and dying or if they do it’s “embrace the light/suffering” or “fear not, heaven will reunite us with loved ones.” I do not worry about death, at all, though I do not welcome Esther’s dying. I do not care about joyous celebrations there, I want to give her away in marriage here!


Heaven is Esther doing cartwheels again, her cloud of fire-white, brittle hair shining, waving at waiting earth.


—Esther’s dad





Thursday, June 10, 2010 10:57 AM, CDT


A BETTER DAY


I’m sitting beside Esther now. After a frightening yesterday, she’s waking up, the fog of last night’s morphine finally lifting. She finds it best to rest leaning back like a seasoned sun worshipper. No tan though, as her skin’s a porcelain white. She’s more than a beautiful young lady and a mature version of that wild hair, now chemo ravaged and of uncertain color, has returned.


Once she’s able, our goal is to get her back home to her cats, around her family and visiting friends and in her own room. Besides, she’s behind on three Doctor Who episodes and Graham simply won’t watch one without her! Her Make-A-Wish is scheduled to come true in three short weeks and she is more than a little excited about that. Then follows her 16th never-been-kissed birthday party (and, no we are not looking to change that status). Esther has always been my muse and tolerates what I write here (from “oh, dad” to “that’s good”) but it’s your guestbook entries that really touch her and give her hope. She sends her love.


—Esther’s dad





Saturday, June 12, 2010 10:39 PM, CDT


Just a forewarning: my entries are much less poetic and reflective than my dad’s. lol ;D


I woke up this morning around 8 am, having slept the night pretty soundly (I mean, hey, I was only woken up by my dad’s snoring a few times). At some point-9, was it?- I started getting a headache, so one of my favorite nurses gave me a massage and I fell back asleep. Nothing much there!


At noon, my two sisters and brother Graham were standing over me, shaking me slightly and (what sounded like) screaming at me to wake up. I was completely confused as to what was going on, but they handed over a large box with a pet logo on it and set it on my lap. By this point I was gaining consciousness enough to think they were giving me some sort of cat-shaped cake, but, no! Upon opening the box a BLACK CAT JUMPED OUT. Hello, Pancake!


Yep! Apparently, my fam and one of the really nice ladies that works here at Children’s worked together to get my cat, Pancake, snuck into my hospital room! He’s currently purring happily on my legs and it feels so nice to have my kitty with me, even be it in the hospital.


So, although I’m stuck in the hospital for now, I’m happy. I like the room I’m in (it’s the same, huge one I was in last time. score~), I have my kitty, I’m feeling good, and I spent the entire day playing games with my sisters, Abby and Evangeline, and older-younger bro, Graham. My cat visiting being the biggest news as of late is quite a nice thing to say. Hope you’re feeling well this nice evening, and remember to give your pet a hug.


Don’t forget to be awesome -love, Esther



Pancake and Blueberry,

QUINCY, MASSACHUSETTS, 2009





Saturday, June 19, 2010 11:28 AM, EDT


Seems like Grand Central Station around our house these days! Several friends have stopped by for visits, grandparents have come and gone, wonderful meals get delivered three days a week, the visiting nurse is in at least three times a week, and then there are sisters, brothers and their friends . . . ! Abraham came home with 3 friends from school on Thursday, and they entertained Esther with their 6-year-old rendition of “Shake your booty . . . ” It was hilarious!


We do pace the days for Esther, as her breathing issues have continued. Oxygen is up to 7 liters, but the new PICC I.V line allows continuous meds that help keep her comfortable.


Most of the excitement around our house is the upcoming Make-a-Wish event. Our family and 6 special friends of Esther’s will be staying at a hotel in Boston from July 1-5. Activities include a harbor luncheon cruise, a celebrity visitor(!), a Harry Potter movie marathon, a concert, games, food, fireworks from 7 floors above the Charles River, and more! Esther is EXTREMELY excited . . . ! Watch for photos and info after the fact.


With several eloquent writers in the family, my role tends to be the pragmatic one . . . From our house to yours, Lori



Boat Cruise!

BOSTON HARBOR, MASSACHUSETTS, 2010