This Star Won't Go Out

Early Thursday morning, and Esther has been holding her own here at home! A few panic moments here and there, like the fuse blowing 4 times in a row in her room due to all the machines going at once—some adjusting of what’s plugged where, and so far so good! (We’re also getting the landlord over to see if he can update the electricity upstairs in this old house!) Then, Esther woke me at 4:30 this morning because her oxygen count was really low—we checked it out, and her biPAP was going, but the oxygen wasn’t connected. Oops!


Esther’s visiting nurse yesterday said her numbers look good. We got to practice French with her, since she is from Haiti. Thanks to all of you for your encouragement: spiritual, emotional, and financial. Happy Thursday!





Saturday, November 8, 2008 3:51 PM, EST


Saturday—We’re getting used to our “new” routine, making sure Esther has her medications at the right time, making sure everything is hooked in and turned on! She had a LONG hot shower yesterday, and feels like a new woman. Amazing how we can appreciate small things as luxuries, when we’ve gone without them . . .


Some have asked what Esther enjoys. She likes reading Archie and Garfield comics, and teen & fashion magazines. She plays computer games on her Mac, and has a few favorite TV shows like “What Not to Wear,” “Jon & Kate + 8,” and “Grey’s Anatomy.” She loves painting her nails (latest models were white, sporting dots like dice!). We never know what new activity will catch her fancy—in the hospital she did 8–10 huge puzzles. We’re just so happy to see her enjoying life!





Sunday, November 9, 2008 1:29 PM, EST


Thought you’d enjoy Esther’s thoughts on what makes a good nurse:


? They can get blood out of your veins on the first try.

? They don’t wake you up in the morning.

? They know how to put on and take off duoderm without taking off your skin too.

? They don’t talk to me as if I’m a baby.

? They don’t wake me up when I’m sleeping.

? They’re patient even when I’m grumpy.

? They listen to my requests with respect.

? They don’t wake me up!



Most of the staff at Children’s Hospital were wonderful, and we appreciate all they’ve done for us. The few who were challenging gave us opportunity to grow! So thanks to them, too!





Tuesday, November 11, 2008 11:25 AM, CST


MAKE A WISH


Esther had a great day Monday! It started off with our first appointment at The Jimmy Fund cancer clinic in Boston which was a positive experience as our primary caretakers there are a joyful duo, perfectly suited for Esther. All told, she was off the Bi-pap machine for 16 hours, drew some cool pictures for friends, ate some Chinese food, texted big sister Abby and visited long and well with the dog, sundry cats, mom, dad, Abe and Angie.


Last week the Make a Wish people stopped by but couldn’t get any ideas from our Star. She simply does not wish for anything—except to be well of course. Recently she dreamt that she was in France walking briskly along with her sister when suddenly she noticed she didn’t have her oxygen tank! She began to panic when she happily realized that she no longer needed one! That’s the stuff of wishes . . .


What do you wish for when you already have all you want and need? She said she’d like another cat but we told her she’d have to trade one in first! (Had we the room, she’d have many and varied members of the animal kingdom.) She mentioned she’d like to visit India because she loves the color and cuisine there, but she can’t travel. She’d like to swim again . . . There isn’t anyone she’d like to meet, nothing she longs to have. Her ideas are always about what she’d like to give and not get. Any ideas for such a hard case?



Esther’s room,

QUINCY, MASSACHUSETTS, 2009





Wednesday, November 12, 2008 7:26 PM, CST


Hi there.:) Quick update to let you know I’m doing good! I had a hospital appointment in Children’s on Monday, and that went really well, even waking up at 8am was . . . okay. Hahaha. And Tuesday some friends came and visited for a while, which was wicked fun. We took a lot of pictures and played Scene-It, and hung out.:) Then Wednesday and today I’ve just spent time with the family, watched tv, played games and stuff. So yeah, things are going good, I’ve been feeling alright. I love reading all the messages and cards people send! Also wanted to post a link to a site (it’s called Flickr) with many more pictures of me and the family. Go here to see them!


Love Esther





Friday, November 21, 2008 6:07 PM, EST