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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.

Saturday, April 23, 2011

This week Lily did not have any chemotherapy treatments; after 5 consecutive days of chemo last week, she needed the break to improve her blood counts before going back next week.  On Wednesday we went to the clinic for a blood draw and her counts were extremely low even after the daily Neupogen shots I have been giving her. That night, Lily's finger that had been poked for blood labs was really sore and swollen and was obviously a bit infected- a source of concern considering she didn't have the white blood cells necessary to fight infection. Thursday morning we had an appointment for Lily to have another blood transfusion and the doctors cleaned and wrapped her finger and gave her some antibiotics.

Other than her sore finger, Lily has been feeling good this week and it seems like her energy is increasing. She hardly uses her wheelchair anymore. The only time she needs it is if we go for long walks. I was surprised by the amount of energy she had this week, considering how anemic she was before the transfusion.

Her appetite is more normal now too. She is a little more willing to eat a wider variety of things. She even has been willing to drink my fresh juice lately! I have to be super careful about bacteria- washing and peeling the apples, beets, carrots, etc. before I juice them, but it's worth the effort. When her counts are at their lowest, I cook all her veggies first...I will admit I have become a germaphobe lately!

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