Progress of eye-saving treatments for retinoblastoma is very exciting, but an increasing number of curable children are developing metastatic relapse and dying after eye-salvage therapy. With parent experiences woven throughout, Retinoblastoma survivor Abby White, asks why this is happening and what can be done to prevent it.
So many days I feel I am banging my head against a wall, watching children die who could have been saved with clear information, simple surgery and emotional support. But the knowledge of how life could be made better for each child, family and survivor is a strong motivational pull. The suffering that can be mitigated with relatively small resources. Somehow when I think I have no more energy, I mine a new seam from within, and from the encouragement and kindness of others, and I move forward, one step at a time.
A positive, open relationship between parents and the child’s medical team is vital throughout treatment and beyond. A therapeutic alliance requires good communication, mutual trust, respect and care, as well as knowledge and skills to provide high quality medical care.
