My name is Sandy Aiello. Thank you for inviting me here today to tell my family's story and to let you know how important it is that this directory has been created. Within the past year and a half, I have experienced three devastating deaths-my father-in-law, my mother-in-law and my five-year-old daughter, Kayla. A death in the family is terrible enough but the questions you have and the answers you need make this unexplored land confusing and frightening.

First my Father in-law, Angelo, passed away in September 1999 after being diagnosed with lung cancer only two months earlier. We had so many questions and concerns for instance, was his condition terminal? Would insurance cover his care? After spending a short period of time in the hospital, Angelo was sent home in hospice care. Again questions where raised. Could we, the family, give him the care he needed at home? Once home, was a trip to the emergency room out of the question? He spent his remaining days at home where he was comfortable. This allowed his family to come and visit him while his medical needs where looked after by Hospice.

His final request was to have all his children with him when he passed away. His wish came true after the hospice nurse told us that it would be only a matter of hours. We were able to contact everyone in time to say good-bye.

This was our first experience with Hospice. The family had no idea what types of services where offered to us through Hospice, except for his medical care. For example, he needed a hospital bed, which we tried to get through the hospital, not knowing that this is a service provided by Hospice. Had we had this directory available to us at that time, it would have made things easier for us.

Kayla was my first-born child and came into the world on October 18, 1994. In July of 1998, Kayla was diagnosed with Wilm's tumor. After six months of treatment, sickness, worry and guarding her health, we enjoyed a six-month period of remission. We even traveled to Disney World in October 1999 for her 5th birthday.

No one saw it coming when in November that year we were told her cancer had come back and it was strong. We faced daily decisions on how best to attack this cancer. The doctors at MGH guided and supported us. After three more months of radiation and chemotherapy, the devastating day came when the doctors told us that nothing more could be done for our little girl. She would probably live about four more weeks.

It seemed only natural that Kayla would stay in the hospital. It was Kayla's doctor who suggested that we look into a hospice called Sand Castles. He thought that the services offered by Sand Castles could help us through this devastating time and that Kayla would be more comfortable in her own home.

Quite honestly, when I first heard the word "hospice," I became very angry. My father in-law had passed away just months earlier at home with hospice care. Never in my wildest dreams did I think that we would need hospice care for our five-year-old daughter. It seemed that everyone was giving up on Kayla. But, once I accepted that Kayla's time left on earth would be brief, we knew that hospice care would be best.

The first thing I did was make phone to have someone look on the internet to get more information about the Sand Castles organization only to find out that they were no longer in business. We where finally referred to HealthCare Dimensions in Waltham. Once again, if this directory were available to us during this trying time, we would have one place to go where all of our questions could have been answered.

You cannot imagine the concerns and questions when it comes to your baby. We wanted to know: Could Kayla's VA nurse still care for her? Who are these people and do they have any experience with children? Do they know how to deal with parents that have terminally ill children? What about my other daughter Amanda? Where any programs offered after the child dies for parents, siblings, and children. What are our rights when it comes to resuscitation?

Kayla spent her final days at home -- the one place that she felt safe and secure. She would sleep in her own bed at night and resume her position on the couch during the day. Kayla spent eight weeks at home. Her last request--or in Kayla's case it was more of a demand--was to have all her family members in the room with her. On May 26, 2000, Kayla passed away on the couch in our den surrounded by her parents, grandparents, uncles, aunts, cousins and friends.

Lastly, my mother in-law, Mary passed away on January 26, 2002 in a nursing home. When we where told that Mary's life was coming to an end we knew who to call. What we did not know was what services she would receive since she was in the nursing home. After many phone calls, we found that we could have a volunteer sit with her at the nursing home so that she would not be alone. Once again, Mary died surrounded by her family.

Hospice was very helpful to our family but I know not everyone is right for hospice care and not everybody chooses it. However, as family of a dying parent, spouse or child, we share many of the same challenges and much of the same pain at the unimaginable loss. A directory like this gives us information and shows us where to get help, Hopefully, some people will even use the directory before they have a crisis in their family.

When you are told that someone you love is going to die, it is the most devastating thing that you can imagine. Even though you are told what services are available to you and your family, it is hard to fully understand or comprehend. With this directory, people can look up what is available to them whenever they want information. This directory acts as repository that holds information necessary to guide a family through this difficult time in their lives.