In the fall of 2002, Rosalie was diagnosed with a very rare and aggressive form of leukemia. She was only six months old. Her doctors recommended a bone marrow transplant as the most promising treatment for this cancer. While we were waiting for a donor match, Rosalie spent most of the next few months at Children’s Hospital in Seattle. She had two rounds of chemotherapy.
After four long months, a bone marrow donor was found! An anonymous, unrelated forty-two year old woman matched Rosalie perfectly. To prepare her body to receive this life saving gift, it was necessary to destroy all of her existing bone marrow. Rosalie had more chemotherapy and eight intense sessions of full body radiation.
At just ten months old, Rosalie had her bone marrow transplant. By the grace of God, she recovered very quickly and was producing new blood cells ahead of the doctor’s best-case predictions. She had almost no graft v.s. host disease; a common problem with this type of transplant. For the next year, Rosalie could not risk exposure to any illness or disease. She couldn’t even touch the dirt outside or receive flowers.
At about 15 months old, we started noticing that Rosalie was occasionally “falling asleep” in her highchair. When she was 3 years old, we determined that she was actually having seizures. At that time, we were optimistic that her seizures would be controllable with medication and that she would even grow out of them. Rosalie was seeing a variety of therapists as part of her long term cancer recovery plan. Her seizures were a hinderance to her progress and development.
The road since then has been very long for Rosalie and her family. There have been stretches of time that are seizure free. But the types, effects, and even the triggers of her seizures have changed many times. Seizures can be triggered in multiple ways. For Rosalie, common triggers are lack of sleep, too much activity, being told "No", among others. Some of Rosalie's seizures are triggered by the act of falling asleep. Epileptics, like Rosalie, can actually develop a fearfulness of going to sleep. Rosalie has reduced energy (an aftereffect of cancer treatment), exhaustion from seizures, and difficulty sleeping; she is very limited in what she can do and is often homebound.
For years, everyone (doctors, therapists, and family) believed that Rosalie could develop normally if her seizures were ever controlled. Right now, there are days she has only one seizure; other days it may be dozens. At this point, it is highly unlikely that we will ever be able to get her seizures under control. Today, she is many years behind her peers and was recently diagnosed as mentally handicapped too.
The frequency of seizure activity affects Rosalie’s behavior and mood. Rosalie is often very aware of the seizures and can become panicky, distraught, and feel unsettled. During a seizure, every muscle in Rosalie's body contracts. This has made Rosalie physically very strong. However, she lacks common sense and, with her mental handicap and developmental delays, meeting her needs is often difficult.
Rosalie is now 10 years old. She is home schooled and the oldest of four children. She is very sweet and fun to be with. She has always been very content with herself and who she is. We are looking forward to how a seizure/multipurpose assistant dog will help in her daily life.