About Amanda and her family Amanda is a beautiful 20 year old girl. A twin to brother Matthew, and sister to 21 year old Jeffery. Amanda was diagnosed in October 2001 with Alveolar Soft Part Sarcoma (ASPS), a very rare cancer that feeds off her blood as it grows into deadly sacks. Amanda has the only known case of this type of cancer in Canada and among 20 reported cases internationally. Only one percent of cancers are sarcomas and Amanda's type of cancer in her lungs and thighs is only one percent of all those. Because it is so rare, there has been little research conducted on this type of cancer. Amanda. In the summer of 2001, Amanda found a lump on her thigh. Initially, a clinic doctor dismissed it as natural fatty tissue. It wasn't until the growth was removed and tested in the fall, that it was diagnosed as alveolar soft part sarcoma (ASPS). In December 2001, lumps in Amanda's lungs were removed. But in January 2002, just two weeks after the surgery, the tumours returned to Amanda's lungs. As the family was told by the specialist that it could take 5 to 10 years before a relapse, this was devastating news. And in the midst of her treatments, Amanda lost her grandfather to cancer in April. Amanda and her family returned to North Bay in early June and has been participating in a clinical trial which required her to travel to Sudbury 3 times a week for chemotherapy and once a month to Toronto for testing. This has been extremely hard not only on Amanda, but also her family. The grace and the dignity with which Amanda and her family, parents Janette and Mike Minderlein, along with twin brother Matthew, and her 19 year old brother Jeffery, is a testament to the love this family holds for each other as they have struggled for appropriate access to medical services for Amanda and the survival of their family. This is an average Canadian family. Ask yourself what you wouldn't do to support your child through a life-treatening illness? Amanda was quoted in the North Bay Nugget (August 20, 2002) in an article by Dave Dale, as saying that: “Fighting cancer is like being trapped in a mystical novel laced with drama and suspense…a world in which wizards are doctors and heroes just want to survive.” I waited almost all day for the results of my tests. The thought going through my head “Do I have cancer?” Me, a 17-year-old girl - how could I have cancer? I have been healthy my whole life, or at least I thought so. I am very active; I play sports and attend dance classes; I sing and I love to talk to people. How could I have cancer? Well, the results showed I have Alveolar Soft Part Sarcoma, which has metastasized to my lungs. I did my own research and found out that my type of cancer is one percent of all sarcomas, and sarcomas are one percent of all cancers. After my lung surgery, the oncologist from St. Jude’s, who specializes in this type of cancer, told me I had time on my side; he said that if this cancer grew back it would take up to ten years. But in just two weeks I had relapsed. As far as I know I am the first person to have this cancer grow back this quickly. My doctor offered me a clinical trial which has never been used before anywhere in the world. We won’t know until April 14th if it is working. I have a positive attitude and feel that this trial is going to work. No, not a feeling - I know it is going to work. I wanted my whole family to be with me in Toronto while I am being treated at Sick Kids, but our home is in North Bay. We heard about Toronto’s Ronald McDonald House while I was in the hospital, It’s a place where children with serious illnesses and their families stay while kids are having surgery, receiving treatment for cancer or waiting for a transplant. Staying at Toronto’s Ronald McDonald House has changed my whole family. Seeing other kids living with cancer, especially the very young ones, has made me think, “Wow, look how strong these kids are!”. My first day at the House a little boy came up to me and said “What’s your name, my name is Alex. I have a tube in my neck.” Alex is amazing. At the age of six he knows more than I do about a lot of things. I am always complaining that I want to go home (I have been here since January 4th). But when I look at my little friend Alex and think about him staying here for a year and half, not going home even once, I have changed my outlook on things. Some kids come and never go home, leaving their moms and dads with only memories to take away with them. It is sad, but it happens. There are days when all the sadness takes a toll on me, but not for long. Here at the House there is a lot to do. Volunteers (who are very patient) come in and do arts and crafts. There is a computer room for kids and parents to use to keep in touch with friends. There is a lounge for us kids to watch TV, an air hockey table that we all love so much it is almost worn out, and a Nintendo 64. My favorite place is the kitchen, where all the families spend a lot of time. I love the kitchen because that is the place where we all talk and get to know each other. My family and I make the best of it here. Mom tries to keep me motivated by getting me out of bed and doing things. Dad is the joker; he is always doing crazy things like putting rubber gloves on his head and just being goofy. My two brothers are staying here as well, my twin Matt and my brother Jeff, who just turned 19. Sometimes they can be really annoying, but having them here makes me feel at home. And for now, Toronto's Ronald McDonald House is our "home away from home". Amanda and her family would like to hear some words or poems offering support to them at this difficult time.