Monday, July 29, 2013

a friend named phoebe.

i have spent days typing and deleting. i can barely put into words the things i want to say.

when we were at children's, originally, it was hard to find people who "got it". there is a limitation that friends and family, even, can feel that is the same as a parent and child.

in november, "a God thing" happened. my uncle met a woman at a funeral (his friend, her grandfather - the amazing and inspiring, zig zigler). my uncle told my mom that she would like to talk to me if i needed anything - and i was grateful for that line of connection. yet still did not know details.

within 24 hours, while at the hospital, an oncologist was talking in our room to the nurse... "you know who they should meet? phoebe". the nurse agreed enthusiastically. the oncologist told us that while reese's tumor is completely different, they shared some of the same endocrinology problems - the DI, the ddavp shots then, the cortisone, the monitoring pee, the ins and outs... but that phoebe's parents were "masters of DI" and if they could hook us up, would that be okay?

of course.

i tell my mom about it. she tells me who my uncle was talking about. and sure enough - same family. i knew i had to connect.

amey is a source of hope. wisdom. a mom who understood. we could chat about frustrations of getting the ddavp shot at the hospital, chat about how scary it was to wait for an MRI (she taught me the word "scanxiety"). and how she balanced 4 children. i could ask my "did phoebe ever...." or "what did you do when..." questions that no one else had the answers to. no one else understood.

(video posted less than a week ago) https://vimeo.com/70128830

https://www.facebook.com/PrayForPhoebe
http://atypicalmiracle.com

in medical short, phoebe had an AT/RT tumor. after surgery and a year of very very aggressive chemo, she went home clear. her hair growing back, happy with her family, they went on trips and spent every second of that time together...

she started to have headaches. and last friday, their post was:

"It is with great sadness that I post tonight. Phoebe's cancer has come back. She has a new tumor growing in her brain at the original tumor site, and a new tumor growth on her spine. Because the tumor site in her brain is in such a sensitive/integral area, it would not be ethical to radiate. She has already had the most intense chemotherapy protocol available; more chemo will not knock out these new tumors. We can expect to have 2-8 more weeks with our precious girl, unless we witness a miracle. We are clinging to the hem of His garment...Thank you all for praying for our family. We love you."

i read that while at the splash park with my family... i had been waiting all day. praying all day - for a clear scan.

i cried there at the park and my chest panicked like i did months ago. oh phoebe...

i can't seem to put into words, exactly how i feel. heartbroken. just... broken, completely, for them. i pray with every breath for their needs to be heard. every minute i hope for a miracle. phoebe is a miracle.

if you read the updates of late, phoebe has had a terribly high fever and they had to run to dallas for some morphine before hospice was set up. so quickly things turned.

phoebe has taught thousands of people how to live. how to smile. she's an inspiration that will live in the hearts of those thousands of pray warriors - many of the same warriors that pray for reese - forever.

amey and nathan, phoebe, and your boys, thank you for showing me how to be real, how to step up when needed, and how to cherish every single day of our lives. every minute.

and how to laugh and live through the tears... and how to live by faith.

phoebe_edited-1

anyone interested in purchasing a phoebe shirt, her church family has set it up HERE. put size in special instructions. all donations to the fair family, of course.

there's so much more my heart could say. fear, sadness, hope...

praying for you, phoebe. sweet baby. :(



4 comments:

  1. I'm weeping. May God have mercy on sweet Phoebe and her family. I'll be praying nonstop. I am so incredibly sorry.

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  2. Saw this on your Facebook. I've been praying for her and the family for peace and still for a miracle.

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  3. This made me sob! Every ounce of my being will pray for her and family......and always Reese!

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