This Star Won't Go Out

Esther is not doing well. Next week they will be putting in one or more shunts (tubes for draining fluid) into her right side. All the fluid, and more, that they drained out a week ago is back again. This is very likely a sign of tumor growth. She’s uncomfortable and tired a lot and has asked for a hospital bed so she can sleep for longer stretches. Our health care team is looking at yet another experimental chemo and maybe something more. We are willing and Esther is game to keep fighting, so we’re not giving up hope!


Still, suffering seems a useless business. I see no value in my daughter’s pain. I know the standard answers (“redemptive” “result of sin” “an evil attack” “bigger purpose”). But the only reality is mystery and that sucks. Our faith remains but is changed; we have “put away childish things.” We talk about death and dying and living and loving and we wait, and try to dream a little together each day. Esther knows more about these things than any 15 year-old should. The grief for us is like a tightening of the chest, a closing in, a sadness and an anger and mostly, a helplessness. I can’t do anything to make my little girl’s pain go away! And she’s so perfect, to me.

I wish I could tell you more but those treasures are ours for now. Thank you for waiting with us.


Wayne





May 2, 2010





I don’t think we’re going on the road trip (the one to visit the majority of my friends). Seeing as I’ve been sicker.


I want to invite friends out here.


Where? some hotel?


Who: Abby, Lindsay, Katie, Teryn, Maddie


Maybe also: Blaze, Arka, Destiny, Sara, Geri, Arielle


What we’d do: watch TV (The Office, DW, Community, w/e), baguette duel . . .





“Friends of Esther,”

SQUANTUM, MASSACHUSETTS, 2010





Friday, May 7, 2010 12:48 PM, CDT





To our friends:


Esther just came successfully through a chest catheter procedure last night, and she is recovering in the Intensive Care Unit. The doctors removed another liter of fluid and put in a permanent tube during the hour procedure, and within a few hours she was able to go down from 5 liters of oxygen to 3 liters—so her lungs definitely have more room to work with the fluid gone.


The CT scan they did a few days ago showed something suspicious in the right shoulder—once she is a few days out in recovery they will do an MRI to see if the cancer has spread to her bone.


She is on frequent pain meds right now, but is stable and lucid and once she can go off the IV pain medication and they teach us how to use the fluid pump on the chest tube we should be able to go home in a few days. Right now they are draining off the fluids again, trying to get out some air trapped in the lung cavity.



Last night Esther said how thankful she is to have doctors who don’t just do their job, but really care about her. Our team at Dana Farber’s Jimmy Fund and Children’s Hospital is the best of the best! We are grateful. Thanks for caring, and we’ll keep you updated.


Lori





Sunday, May 9, 2010 11:52 AM, EDT


Esther is still in ICU, struggling with getting a handle on her pain and her breathing. Obviously taking out the fluid has improved her ability to use her lungs, since her settings went down to 3 liters of oxygen. Her right lung is not fully re-inflating, however, so we’ve gone up on her bi-pap settings, and she has been staying on her bi-pap rather than a nasal tube all but 2 hours or so a day.


She’s been running a low-grade fever, so today they are going to start her on 48 hours of antibiotic while they wait for the cultures to indicate whether there is any infection. Switching her from morphine to another pain med over the last 24 hours brought on a migraine last night—so they’re bringing in the pain team to help find the best medicines for her.


So . . . Things aren’t dramatically worse, but they also aren’t improving much. It’s hard not to fear the future as I contemplate bed-ridden days of pain and increased interventions for my 15 year-old. Perhaps with new chemo we’ll have months of better days . . . Not knowing is hard. Seeing Esther struggle with anxiety and pain is harder. We hope for reprieve, and pray for acceptance.


Isn’t it sad that so often it takes facing death to appreciate life and each other fully? I hope you are making a difference for someone today . . .


Lori



Chillin’ with Graham,

QUINCY, MASSACHUSETTS, 2010





Saturday, May 15, 2010 11:52 AM, EDT


Wow! The power of the internet, twitter, and especially nerdfighters! Once John Green got the word out that Esther was sick and needed encouraging, the awesomeness coming her way has been an amazing thing to see. As her parents, we thank you for brightening her days with your messages.