This Star Won't Go Out

Summer is zooming by . . . the Earls are getting ready for college, middle school, and first grade! And Esther has decided now that she is sixteen to officially withdraw from high school, and begin working on passing her GED. So we’ll be ordering a few books and encouraging her to study. Plus, that will allow her to continue her sleep-all-day, stay up until midnight routine!


Medically, Esther’s blood pressure continues pretty high, but is controlled. The newest complication is possible damage to her kidneys from the chemo. Which means daily blood tests until we see if her kidney will spontaneously recover. Wayne says cancer is like fighting a battle on one front, thinking you’re winning, then finding out the enemy has snuck up from the side to engage you again. (well, he says it more eloquently!—that’s my summary) All I know is that each day is new, uncharted territory.


We’ll keep in touch . . .


Lori





“LOVE IS STRONGER THAN DEATH”


by Wayne Earl


“And those who are wise shall shine like the brightness of the sky above; and those who turn many to righteousness, like the stars forever and ever.”

~Daniel 12:3


On August 17, 2010, Esther sat down to complete her 11th VEDA for the month. In what would be her final YouTube post, she showcases the downstairs of her home. Beginning with her trademark cheerfulness, she says playfully, “I know what we can do! Let’s tour my house!” She then takes the viewer on a walk through her bedroom: “ . . . now it’s my bed, and now it’s my lamp, and now it’s my bookshelf, and now it’s my Harry Potter shrine. Archie comics shrine! Oh and this is Denmark! You guys have never met Denmark. He’s, um, my oxygen machine. I love him.” She walks through the kitchen, entryway, living room and finally ends up in the bathroom where she concludes by saying, “Look at this! Lookin’ at myself in the mirror! Lookin’ at myself in the camera . . . in the mirror! Lookin’ at myself—at you!” Finally, she pauses, smiles broadly and ends with a familiar good-bye: “Hey . . . Love ya!”

After that, her video shows a drawing of her cookie monster character at the bottom of the stairs and we hear her voice saying, “Lalalala, whoa! Stairs! Whoa! I do not pass. You shall not pass!” At the bottom of this drawing, Esther added the words: “And so he never passed the stairs again.”

She recorded one more, brief video clip on Sunday, August 22nd as part of Catitude’s group greeting for John Green’s upcoming 33rd birthday. In it, she looks tired, and is obviously struggling to breathe, her face pale and puffy; but she is smiling. Uncharacteristically, her comments are brief as she offers a sincere, “happy birthday” and “I love you” along with a promise to contribute something more appropriate later when she’s feeling better.

The following day, August 23rd, Esther was exhausted and spent most of her time in bed. That night, she sent what would be her final text message to a fellow Catitude member, containing two words: “love you.” She also viewed various TED talks online and was struck by one discussion concerning developmental disorders in children and the relationship of such disorders to the brain. Thinking about its application to her brother Graham, she sent the link to us, writing, “Idk it’s interesting but probably irrelevant to Graham but y’know still interesting and it’s only 10 minutes hey not too bad!!! She then commented on the same video via Twitter, saying: “I really like watching someone talk about something they are passionate about because as they talk they get all THIS IS A REVELATION, GUYS-y and to me that is entertaining/inspiring/hilarious . . . ”

It was her last time on the computer.

Her attempt at sleep that night was impossible. She couldn’t catch her breath. By early the next morning, it was clear that she needed more care than could be provided at home. We watched while the EMT’s carried her out, carefully placing her into the ambulance. Lori got in beside her for the ride to Children’s Hospital in Boston. Esther smiled bravely, though weakly through her oxygen mask, and then waved good-bye.

Before long, we arrived in the emergency room and gathered around our Star who was once again lying down on a familiar hospital bed. I went right to her side.

“Hi, Daddy, I’m glad you are here,” she said groggily. “Where else would I want to be? This is the main event. After all, you’re famous in this place!”



She smiled and took my hand, and held it tightly, closely, like a child on her first day of school who knows she must soon part, and do so bravely, keeping the tears in check.