This site is intended for use as a resource for brain tumor caregivers and families. The information stems from the anecdotal experiences of thousands of patients and families over the last 20 years. This resource is intended to supplement the expertise of the hospice team and improve dialogue with them, empowering caregivers to make the best decisions for the patient. The information contained here is not a substitute for the advice of medical professionals.
THE JOURNEY with a brain tumor is an emotional roller coaster for patient and caregiving family alike.
Anyone who has been a part of this experience understands the difficulty of these ups and downs. But no matter how long or hard the journey...no matter what the grade or type of tumor...when the road narrows and it is time to think about end-stage comfort, no one feels truly ready for the letting go.
This site is not intended to take hope away from those who are new to the diagnosis or who are still fighting to defy overwhelming statistical odds. I wish them distance---and victory!
Rather, I've created this site so that caregivers approaching this important new junction may recognize and understand end-stage events that are likely to happen, as well as find support in providing the best of loving care during this critical time. I share not only my own experiences with my father, but also those of literally hundreds of others who've been there as well.
I'm not a medical professional. I have nothing to sell. I came to this through my father's own journey with gbm (1999-2000) and the learning that continues as others so generously share with me.
Throughout Dad's battle, I educated myself on radiation and chemo, side effects, and symptoms, feeling fairly well prepared at each turn. But when it was time for the referral to hospice care, I was at a loss. There was no information, or it related only to general cancer death at best. Hospice was a marvelous support to us, but their knowledge about brain tumor death was no better than ours. They didn't see it coming, and so, neither did we. Since then, in working with other brain tumor families, many things have come to light which now enable families to better prepare and to make the most of the time that remains. That is my wish for you.
The information and advice provided here will, I hope, help you identify your own questions that can be shared with your loved one's medical team. I hope that the site will assist you in this, the most important "work" of your life. When all is said and done, I wish you peace, a heart that soars, and absolutely...positively...no regrets.
Diane Phillips
Founder, Brain Hospice