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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.

Tuesday, May 10, 2011

This week is another loooong 5 day chemo week. Lily gets two chemotherapy drugs each day- Ifosfamide and Etoposide and comes home with a hydration pack and Mesna to help protect her bladder from the chemo. She has been tired and sick off and on the last few days. There are several anti-nausea medicines that she takes, but she really doesn't like taking them either. One causes headaches and another "makes her feel funny." Her counts are low too, so that also contributes to her fatigue. She is scheduled to have a blood transfusion on Thursday on top of getting chemo that day. Friday we will meet with the naturopathic doctor. Next week, Lily won't have any chemo so that she can recover from this week. She will have daily neupogen shots to help get her white blood counts back up, though. In two weeks, it will be time for another evaluation and Lily won't have chemo that week either. She will have another PET scan and an MRI of her foot. At that point, her doctors will recommend her radiation treatment plan.

To help raise her spirits this week, I agreed to build Lily a new bigger and better dollhouse. We went to Hobby Lobby and she picked out the biggest one they had. She was so excited and now has something fun to look forward to when she comes home from the doctor.

I've been super busy with work, but that should be winding down a bit in a few weeks. I am really looking forward to Lily having a few weeks off from chemo too, although there will still be several doctor visits during that time. I am NOT looking forward to the idea of Lily getting radiation treatment. This is not something that we have yet experienced and the whole idea of it really freaks me out.

Today; helping pick veggies for dinner

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