heinz family

We are a family of four - Susan, John, Evelyn and Alice - about to embark on a new journey. Our youngest daughter, Alice, has neurofibromatosis (NF) and is now experiencing her fourth brain tumor. Alice was diagnosed with her first brain tumor in May of 1999 and underwent a year and a half of chemotherapy. While it was difficult, the results were wonderful, and in retrospect, it was all well tolerated. Her second tumor in May of 2002 was surgically removed. While the surgery was gruelingly long, it was also very successful. Alice's third tumor was diagnosed a year later and in May of 2003 she began her hardest course of chemo. This round was poorly tolerated and lead to major bone marrow suppression and multiple (79 but who's counting) transfusions which continued for nearly 2 years. To add chaos to our madness, this spring Susan had a huge blood clot go to her lungs (pulmonary emboli) and not to be overly dramatic, nearly died. Her recovery was slow, but recover she did, and in retrospect, the timing was perfect - Alice was doing better than she had in 2 years and she was well recovered before we began this, our newest event . This, Alice's fourth tumor was just diagnosed in November of 2005, thus breaking her cycle of May tumors. Alice had surgery, craniotomy number 2, on November 28th. While this tumor was considered to be inoperable, the surgery was for the purpose of biopsy to determine the best future course of action. It was determined through the biopsy that she has a rare tumor type and will be undergoing surgery again - craniotomy #3 - on the 14th of February (Valentines Day); radiation may follow the surgery. This surgery will be the beginning of our next adventure. While all four of us are very unique individuals and have lives that are much more than this process of dealing with tumors and medical issues, we are also, each, profoundly affected by these events. It has carved much of our family's life and who we each are as individuals. It has affected our sense of humor (we affectionately refer to tumor humor - "so do you feed a cold and starve a tumor or is it starve a cold and feed a tumor?" - and have been known to have many vomit stories which at least we find entertaining). It has affected our profound sense of appreciation for the fact that we have each other and are all alive, here, and together. These life events have often affected our relationships with each other and with our friends and family; those we love. It is especially at times, such as now, when we are beginning a whole new chapter in our journey, that we are most affected and often misunderstood by each other and those around us. This site is an attempt to help those around us understand what we are experiencing and for our family to stay united in our journey. All families struggle. All people struggle. All of our struggles and difficulties are unique, but all are important. They shape who we are. This site is dedicated to all families, to all persons who care and struggle ... who laugh and cry ... who love. This site is dedicated in love and peace, from Susan, John, Evelyn and Alice.