Whew! What a week. We're all feeling pretty worn down around here. These last two weeks with only two days of chemo were supposed to give Lily some time to build up her strength because we are back to chemotherapy every day next week. Unfortunately, it hasn't worked out that way. Lily has continued to have stomach pain and lose weight. She is usually in pretty good spirits throughout the day, however, and has been working on Valentine's crafts and doing some sewing, but at night she has a hard time sleeping and experiences a lot of pain and numbness.
Lily has also started losing her hair by the handfuls. I am surprised at how easily she has accepted this as just part of the process. In the past, she never wanted her hair cut and always liked it down and long. Unimportant things like this just don't seem to matter any more.
It is obvious from the severe symptoms that Lily has been having that she is particularly sensitive to the Vincristine chemo. The doctor plans on cutting back her dosing for now and hopefully that will help with her stomach pain.
Lack of sleep has sure worn me down; I've had a sore throat this week and it's been hard to stay positive and have the energy to deal with each day. I have also started back at work this week, but am so thankful that I have the most amazing job and get to work from home.
We have been visiting the naturopathic doctor and he has been giving Lily vitamins and amino acids through her port IV. Lily also started physical therapy this week to help get her walking again without depending on her walker.
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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.
2 comments:
Im not sure if Lily likes tea but my Mom would drink Traditional Medicinals Organic Chamomile with lavendar tea during her chemo and it really helped with her stomach. I also would give her Nauzene chewable tablets. Maybe one of these could offer some relief for her. God Bless you all <3
Thanks Alisha for the update. I'm sure it's hard to recount all you go through just to tell us but please know that we are so grateful to know.
Our prayers are for you all. Especially this week we will focus on special strength for you. You are the rock and heart of your family. Please take the best care of yourself that you can, sweet girl. We love you Uncle Don and Aunt Jane
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