This is a post from the ACOR Sarcoma Group that may be of interest for families of pediatric patients:
The American Childhood Cancer Organization has decided to expand the
opportunity for writing for its new book on Pediatric Palliative Care to
children with cancer and to siblings in addition to parents.
Family perspectives, to be included at the end of each chapter, may be a few
sentences to a few paragraphs written on specific topics. A parent, child
with cancer, or a sibling may write on more than one topic. We are currently
collecting family perspectives for the first three chapters.
"The Parent's Role" - facing the cancer diagnosis, advocating for your
child's care, participating in providing quality care for your child at home
and in the hospital, the parent as caretaker for the child, the palliative
care team, quality of life
"What is Palliative Care?" - goals of palliative care for children with
cancer and their families, palliative concepts and guiding principles,
alternate names, palliative care principles from the time of diagnosis,
quality of life, thriving in spite of late effects of treatment, chronic
health issues, thriving while focused on surviving
"Symptom Management" - quality of life, symptom management while on
treatment and while dealing with late effects, management of any symptoms
(related to cancer and/or treatment) other than pain-feeding issues,
anxiety, nausea, etc.
I wrote for the American Childhood Cancer Organization's book on DIPG and
love being able to hold that book in my hands because my son Andrew is
sprinkled among its pages. I also love the fact that my experience is
Family Perspectives can be sent directly to me.
I look forward to hearing from you-parents who have experienced childhood
cancer in one of their own children, children with cancer, and siblings-as
soon as possible!
Always Andrew's Mom