It has been quite some time since our last update. Many thanks to all of you who have been asking of her. Keeping her in your thoughts is of great help.
During the fall and winter Amy was able to enjoy many of the things she appreciates, namely the changing seasons and the holidays. This year she was able to spend time with many of her friends and enjoyed the freedom and independence her mobility afforded her.
Unfortunately her mother was diagnosed with lung cancer in the Fall and by December wasn’t doing well. At the time Amy and her doctor were watching 3 possible tumor areas on her right ankle. As her Mom’s health continued to deteriorate Amy decided to put on hold any thought about having her surgery. Her Mom passed on March 1st.
On Monday April 5th Amy underwent surgery to remove a tumor that had been growing on her right foot and ankle, an area where she’s had tumors removed a few times before. The surgery was a success, but following the operation Amy’s surgeon stated he now believes that the probability of malignant cells infiltrating the bone of Amy’s right, lower leg is extremely high. Once in the bone these cells will travel at an extremely rapid rate spreading throughout Amy’s body if gone untreated. The only treatment option would be amputation of the infected area.
You may recall that about a year or so ago the possibility of having her legs amputated was presented to Amy. At that time her surgeon told her she had some decisions to make, but in the end he was able to find a way to avert that specific procedure, which has enabled Amy to continue to live with the type of freedom and mobility that keeps meaning in her life.
It now appears that amputation is inevitable and will likely take place with the next 6 months based on the cycle of tumor growth she has experienced over the past few years. Amputation will radically alter Amy’s lifestyle. She will no longer be able to drive, which will have a devastating impact on her strong desire to remain mobile and independent. Her housing situation will also need to change within the next 6 months. The last place Amy wants to go to is a nursing facility, so efforts are being made by Hospice, her medical team and some friends to determine what options may be available to her. The ideal situation would be for Amy to move to an assisted living facility or a handicap accessible apartment with services provided with home health care aids. Unfortunately the options for a person who suffers from such a severe skin disease and is continuously battling cancer are quite limited, so our work is cut out for us. Of course, financial resources are central to the issue; we’re currently in search of large benefactors and also welcome any and all ideas for raising funds.
Despite all of this, Amy continues to maintain an amazingly positive attitude, but she wouldn’t be able to sustain such an attitude if it wasn’t for the thoughts and prayers from all of you. Please keep her in the forefront of your hearts and minds.
If you would like more information about how you can help Amy please visit our donations page.
Please click here for previous health updates and information about Amy.
Click here to read an article about Amy that was published in the New Haven Register on July 12, 2009.
Video about Amy and EB
One of Amy’s goals is to utilize her life experience to help increase awareness and understanding of Recessive Dystrophic Epidermolysis Bullosa (EB). To accomplish this, she asked her good friend Jack Gambardella capture various aspects of her life on tape with the ultimate goal of producing a video that can be used to educate the public. This video is a work in progress; click here to see a segment in which Amy describes the devastating effects of EB in her own words. Most of the video for this segment was filmed when Amy was 44; her health has deteriorated significantly since that time.