April 2010 Update
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.
September 2009 Update
Amy had surgery on September 14 to remove an external tumor on her right leg that was covering the Achilles tendon. Initially Amy's surgeon believed there was a very strong chance that the Achilles would be damaged during surgery. This would mean that Amy would never walk again and therefore be unable to continue living independently. Thankfully, the tumor was removed without damaging the tendon so Amy will be able to walk on her own (with the aid of her brace) and, most importantly to Amy, continue to live independently. In yet another example of Amy's determination to live as normal a life as possible, Amy decided to return home to continue her recuperation after only a brief stay at Hospice.
Although it is quite difficult and painful, Amy is able to get around her apartment with the use of a walker. It will be several weeks before the wounds from this most recent surgery heal enough to allow to once again walk independently with the use of her brace. While she is recuperating, the wonderful people at Hospice are providing home care and a dedicated group of volunteers and friends continue to provide support and assistance to Amy.
Please continue to keep amy in your thoughts and prayers.
If you would like more information about Amy and how you can help her, please visit our donations page.
May 2009 Update
Over the course of the last several months Amy has had quite a rough road, but in true Amy fashion has once again emerged as a beacon of light ready to consume as much of life as is humanly possible!
Since being admitted into the Hospice Home Care program in April '07, she has had 3 very involved and significant surgeries to remove tumors from her feet, legs, knees and arms. The forever-challenge for her is to try to recoup as quickly as possible so that she may resume some form of "normal" living before another round of malignancies send her back into the hospital. As many of you know, following surgery she's now able to go to the Hospice facility in Branford to recuperate.
This past October she had multiple tumors removed from her legs and feet--a grueling 5 hour surgery. Her recovery time was extremely long, first in Hospice for over 3 weeks and then back home where it would take months for her to make her way back. It starts with being able to first place her feet on the ground, and then eventually a few steps with the walker and then, over time, with some luck, leaving the walker behind.
For Amy every day of life is about staying on a path that leads to relief… relief from deep, chronic, physical pain; relief from the pressure of financial worries, relief from the heightened-anticipation of where the next tumor is going to show up and the ramifications of its presence. Her endurance comes from that bright light that shines deep within her, and gives her a beauty that no symptom can seem to compete with.
She was able to somewhat enjoy the December holidays, yet almost immediately afterward an aggressive growth of new tumors was detected, abruptly flipping her optimistic path to recovery into that all too familiar rocky road that leads to the dark unconsciousness of a cold, steel surgical table. Before going in for surgery, in a moment of both realization and resignation, as she sipped a hot cup of tea, she said to me: "all I want is just a little time to watch the flowers grow, have some dinner with friends, maybe go to a movie...that's all".
The surgery went well removing tumors from her right ankle area, unfortunately valuable cartilage, ligaments and muscle went with them. Her recovery at Hospice lasted into early March. If you've never visited Hospice I highly recommend it. The setting in Branford, at the site of the old Double Beach club, is picturesque and the atmosphere inside is as pleasant and as optimistic as all of our lives should be.
While at Hospice Amy once again developed strong friendships with her roommates, only to be the solitary witness to their passing. In all she has sat through this extraordinary experience on 6 occasions, before being given the gift of going home. In this last stay it was Amy's mission to be able to travel a sufficient distance on the walker before it was safe for her to go back to her 1st floor apartment in Hamden. Her spirits were good when she got home knowing quite well that every day was another "step" in her effort to get off the walker so she could once again drive her car and experience for her the true meaning of independence.
However shortly after Amy arrived home she found that the right ankle was no longer able to support her, even while using the walker. A visit to the surgeon revealed that there had been so much loss of cartilage, ligaments and muscle that the ankle -the lynchpin of leg and foot- could no longer do its job. This was a devastating set back but a temporary one in her mind. She was determined to find another way to walk and drive and with the help of friends she believes she may found the solution in a customized brace that will run from her knee over her foot and will act as the support of the ankle.
Right now she's very frustrated because its been close to 10 weeks and the brace still hasn't arrived. Quite fortunately, since her February surgery, there have been no signs of new tumors, which is the longest stretch she's had in quite some time. In fact she's gained 2 pounds over this period, something she hasn't seen in years ! The other day, while she was supervising the annual planting of her Morning Glories, she said to me: "The difference in my body is almost indescribable. I can actually feel the nutrients being absorbed inside me while I eat, instead of being lost to those nasty tumors".
Please continue to keep her in the forefront of your thoughts and if you're so disposed please say a pray for her often. Knowing that so many people care about her, think about her, and pray for her has been transforming for Amy in so many ways. All of you have made a difference in her life.
Amy O'Neill (2006)
Content Copyright 2006, Yetta Lautenschlager M.S.W.
The triumph of the human spirit over insurmountable obstacles is a true inspiration to others. Many people have survived horrible traumatic events and lived to inspire others. Amy O’Neill has had a lifetime of fighting an insidious enemy in Recessive Dystropic Epidermylosis Bullosa, otherwise known as “E. B.” This disease robs a person of the safety of the largest organ of their body, the skin. Because of this genetic disease, Amy’s skin layers do not bond and her skin deteriorates. The slightest pressure on her skin causes it to blister and bleed. Her body is covered with painful areas that are red, raw, and scabbed. Miraculously, her face is spared. The skin on her legs is so fragile that it has to be covered constantly with salve, bandages, and then ace bandages. She walks without bending her knees. The skin on her hands is fused forming a fist. She has endured many operations to continually separate her thumbs from her hands so she can pick things up, write, draw, paint, drive a car, and live independently. She was diagnosed shortly after birth and has had over 100 surgeries in her lifetime to enable her to live independently (and just continue living). She is not only the longest survivor of this progressive disease, but the only one who lives independently in a rent-subsidized apartment.
Don’t be put off by her appearance; what is on the outside is only the very beginning of who Amy O’Neill is. In spite of her pain and disabilities, Amy has an indomitable spirit that shines through her physical appearance. Amy is neither bitter nor angry about her life. Her sweet personality, courage, generosity, optimism and creativity continue to endear her to all who meet her. Our own aches and pains and troubles fade away in comparison.
Amy graduated from Lauralton Hall and Briarwood College. She spent some of the time at college with a feeding tube following surgery to replace her esophagus with part of her colon. She worked at Yale-New Haven Hospital for many years as the operating room coordinator. When her illness forced her to cut back to part-time work, she worked in communications at St. Vincent’s Hospital. Now she is unable to work at all due to the frequency and seriousness of her surgeries.
Energetic Amy continues to fill her days with activity. She cannot hold a brush to paint any more because her thumbs have fused to her hands. She reads and uses a knitting machine. She painstakingly puts the yarn, a strand at a time, over the metal prongs to make a scarf for a friend. She does what she can, and more than we might expect. She shops, cooks, and washes clothes for herself. Every evening it takes two and a half hours for her to change the dressings that cover her legs.
Amy’s immune system is continually compromised by E. B, and consequently her body develops cancerous tumors. These have to be removed surgically because she cannot tolerate radiation or chemotherapy. Some of these tumors are the size of a grapefruit, located on her extremities. Because of the frequent surgeries and skin grafts she has little of her own skin left, her blood system is also compromised. She has to have injections every Monday to boost her blood cells, and every few months she spends eight hours with an intravenous drip to replenish iron in her blood. Amy recently started doing Ti-Chi at the senior center to help with her balance since she lost part of her heel last fall in an operation to remove a tumor.
The issue that Amy is struggling with now is that her surgeon has been talking about amputation as a treatment, since she has no skin left for grafting and she is slowly losing parts of her legs that cannot grow back. She struggles with this decision on a daily basis. If that were to happen, she would not be able to live independently. Living with her family is not an option, so she would face the rest of her life in a nursing home. This would not be a good outcome for Amy because she would require much more care than nursing homes are equipped for, and there would be an increased risk of infection. It has taken Amy years to educate the medical community on what E.B. is. Because it is so rare, most health care workers have never seen it and are unfamiliar with the constant attention it requires. One reason that Amy has been able to fight this disease so long is that she has been her own medical caretaker and has found joy and meaning in the challenge of living an independent, non-institutionalized life.
Another problem with a chronic debilitating disease is that your caregivers begin to burn out. Amy has had many caring, loving people in her life that have helped with rides to the hospital, doctor’s office, pain clinic, etc., since after a surgery she cannot do it herself for sometimes up to three months. Can you imagine how many people it requires? A friend cleans off her car after every snowstorm so Amy can get out. Other people bring food since she cannot prepare it after surgery. Others carry her garbage out to the dumpster. An organization has just begun paying for someone to clean her apartment. People do this willingly since they love and admire Amy. Unfortunately, people are busy with their own lives and do as much as they can. Sometimes it’s not quite enough.
Amy just celebrated her 49th birthday on August 11th, 2006. A few of her friends will take her out to dinner. That is usually a three-hour party. Since Amy’s gums cannot sustain teeth, and her esophagus is so fragile, she must have most foods ground with a food processor. Her favorites are mashed potatoes and dessert. She never complains.