This Star Won't Go Out

Three years ago this weekend we found out Esther had cancer. The next year, Thanksgiving 2007, was when Children’s Hospital finished their review of Esther’s medical history, and stated that we were looking at maintaining, not curing her cancer. Then during Thanksgiving 2008, Esther had just come out of a month in ICU, where our family came at the doctors’ request to say our goodbyes—just in case. For all seven of us to gather together at the table for Thanksgiving 2009 is a cherished celebration of life! So, if you haven’t done it, thank God for your family and friends, and look someone in the eye today and tell them you love them.


From our home to yours.


Lori





Saturday, January 23, 2010 2:07 PM, EST


Esther has been doing well, attending high school about three days a week. She loves photography and French, and is doing well in her English class. She has a tutor for Algebra at home, and is doing her history course online. This past semester she was on the highest honor roll at school!


Healthwise she has been doing good, until this week’s episode with her bi-pap machine. Her hair has grown back, so after Christmas she went back to school “au natural,” without her wig. She has been having a lot of pain in her feet, so her medical team just decided to give her a “drug holiday” for 2-3 weeks to see if the nerve damage will diminish.


However, this week Esther had a tough week. She uses a bi-pap machine at night to give her breathing support, and the machine didn’t work well Monday night. The therapist came out to fix it Tuesday, then 1/2 hour after Esther went to bed Tuesday night, the machine quit. I thought she’d be ok for one night (this has never happened since we started using the machine in November), so waited to call them back Wed morning. They finally came at 1 pm Wed. Esther couldn’t sleep all night—she was upset, exhausted, emotional, and her lungs hurt. The company gave us a loaner machine, so Esther put it on for the rest of the day. Thursday we had clinic, and she was so tired she used a wheelchair—something she hasn’t done for a couple of months. Then unbelievably, Friday morning about 6 am the loaner machine quit! Again, it took the company until 1 pm to bring us another machine.


The sober lesson from all of this for me has been to see how compromised her lungs really are. I knew using the bi-pap added to her comfort level; I didn’t know NOT using it compromised her health to this degree. Now we realize that the huge gains Esther has made this year might simply be attributed to the support she’s been getting for her lungs. Without that machine at night, I’m not sure the chemo or G-tube would have made any significant improvement in her health. Having that support has given her the energy to eat more, to gain weight, and to start school again. It’s given her a feeling of improved health and wellbeing.


Anyway, a couple of long paragraphs. Our hope is that by Monday she’ll have recovered her equalibrium and be back to feeling better. Just in time for her midterms next week! It’s been a reminder to me to rejoice in each good day, and we hope you will take that to heart in your own lives as well . . .


Blessings,


Lori (for the Earl clan)





March 17, 2010





There was a quote on an episode of Lost one day, though I forgot what it was wait I typed it somewhere? Yeah: “you’ve just spent so much time running away to realize what you’ve been running toward.”


Deep, right? ha. I like it. Lost has been my new love for a while. I love its biblical references and mythological feel. It’s quite good. Sad it’s almost over waaaa.


I’m in a lot of pain right now, lol. I mean not too bad, just regularly I don’t really have . . . any pain. I did something screwy with my left leg (stretching I think?), and now it hurts when I move it at all. waaa yay. It’s not too bad though because I haven’t moved really at all the past week/or so. Why? lol. Because I have a smidgen more of fluid in my lungs (like, literally a smidgen; they barely considered it more. but, because my lungs notice everything, I feel it. ugh) Anyway, it kind of feels like something is pressing on my lungs. Ugh. when I wake up it’s the worst.


But I feel like a butt for complaining! Because there are kids who suffer so much more and yet do good for the world. :|


Ok. Gonna listen to music/doodle.


Bye.





Star of nerdfighteria,

BOSTON, MASSACHUSETTS, 2010





Thursday, April 29, 2010 6:48 PM, EDT





Loved Ones,