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On January 5th, 2011, Lily was admitted to the Phoenix Children's Hospital because she was experiencing pain in her legs and back. A week later and after what felt like a million tests, scans and biopsies, we had a diagnosis: she has a soft tissue tumor called Alveolar Rhabdomyosarcoma. A PET scan revealed a small tumor in her foot that was not apparent from the outside; it was not until the cancer had already spread to her bone marrow that she experienced any symptoms. This came as a total shock to everyone as Lily has always been healthy, active and full of energy. We love our darling girl and her sweet, happy, loving spirit. This website is for friends and family to stay connected during this difficult time.

Thursday, September 27, 2012

It’s been a while since I’ve written.
In life, sometimes, there simply are no words.
I’ve felt this way lately; I’ve felt that there are no words that can even begin to describe the kaleidoscope of emotions that I-- we-- have been experiencing. When I have a moment to myself (which is rare), I consider how I can best articulate my feelings and I tend to come up blank.
I am not profound. This brain is unique, but not brilliant. I have no deep insight, no fountain of knowledge to impart. But I feel. I feel so strongly, it hurts--
I know cancer is there. I feel its looming presence every day. It likes particularly to make its existence known at night when our tired, sleep deprived brains are not quite rational. Sometimes Lily has a hard time sleeping. She tosses and turns, can’t get comfortable, goes from her bed to my bed to the couch and back again. Her shoulder has been hurting her for some time now and we fear what this means for her--for us.  But—
she is Lily—and regardless of how she is feeling, she always exudes love, beauty, and that special unique Lily-ness that tends to draw people to her.
Every day—
She laughs, dances, makes something wonderfully creative, and says something super smart and/or something super hilarious.
Every day—
 I ask her (multiple times really), “How are you? How do you feel?” Her answer is inevitable: “good,” (usually accompanied by a smile).  Even in the mornings, when she is so tired after a long night, it’s “good,” with a smile and she is off to play some Flaming Lips or Ween while she stretches out, dances around the living room, and drinks her Flor-Essence tea.
And despite everything, when I consider what I feel most, I feel love.
And gratitude.
And wonder.
At how amazingly complex, yet simple life is. How inter-related we all are. How abundantly fortunate our family is to be blessed with love from so many wonderful people.
Every day—
I am awed at the kindness, the thoughtfulness of others who each give of their own unique talents to make life better for one special girl.
Each person has such individual beauty; shines in their own way. When they share that inner light, the whole world has feels it.
I feel it. And I thank you.