End of Life Care
Losing a child is almost unbearable agony for the entire family and close friends.
For most families who lose their child to retinoblastoma, grief is deepened by the knowledge that the cancer could be cured with earlier diagnosis or better access to essential care.
Children often endure months or years of intensive therapy. They and their families experience moments of elation and high hopes, and periods of deep discouragement and despair.
Around the world, many families struggle to access early diagnosis and potentially life-saving care. They are traumatized by months or years of begging for help that never comes, while their child suffers unspeakable pain.
Families are mentally, physically and financially exhausted by the journey they share with their child. Moving the focus from hope of cure to hope of comfort, and walking with the child to the very end of the road, is a deeply emotional experience.
As with all aspects of retinoblastoma care, clear communication between family and medical staff can ease the process considerably. Even when cure is no longer a realistic goal, much can still be done to ensure effective end of life care for your child. Having a plan will help you give her the best possible quality of life.
Changing Treatment Goals
When retinoblastoma has spread extensively outside the eye, difficult decisions must be made about how to proceed with medical care.
When hope for cure is succeeded by hope for comfort, making an effective care plan is one of the very best last gifts you can give your child.