Changing Treatment Goals
Retinoblastoma that spreads extensively to the brain, bone marrow or elsewhere has very poor chance of cure.
In this situation, parents and doctors face difficult decisions about how to proceed with the child’s care.
This is a deeply distressing time for everyone involved. Many families frantically research and attempt every remaining treatment, desperate to know they did everything humanly possible to save their child.
Many more families do not want to put their child through further trauma, and focus only on sharing time to love and create memories together.
Talk With the Doctors
Now more than at any other point on your child’s cancer journey, you need to make an informed decision about how to proceed with her care.
Knowing a treatment’s realistic chances of cure or halting progression of the cancer, will help you weigh your child’s options. Considering how her quality of life will be affected by treatment is especially important.
Treatments are evolving all the time that offer ever-greater chance of cure. They are bright hope in the darkest valley of childhood cancer. However, they can also do a great deal of harm to children and families, prolonging their agony and robbing them of precious quality time together.
Too frequently, families and doctors skim over the subject of their goals for treatment after serious relapse or diagnosis of advanced disease. Thinking about the probable death of a child is excruciating, so it is simply not discussed.
You and your doctors must talk frankly about your child’s care so that you can all give her the very best possible quality of life, rich in love and living.
Talk With Your Child
Children are often excluded from conversations in attempts to protect them from painful reality, or because they are thought to be too young to understand. Often parents are simply too overwhelmed by their emotions to to talk with their child about death.
Children feel an immense need to protect those who love them. They recognize their parents’ distress and keep fighting quietly. In the end, everyone suffers as a result of avoiding the most important conversations.
If you are unable to talk with your child about what lies ahead, ask a doctor, nurse, child life specialist, social worker or psychologist to help you. Don’t deny yourselves the opportunity to love and prepare her as you have done with such dedication throughout treatment.
As with all the procedures your child has experienced, she needs to know what will happen next. She needs to know that it’s ok to be sad, to share her fears, to say good-bye. Most importantly, she needs to know she is loved, that you will be with her every step of the way; that it’s ok to stop fighting, to let go and find peace.
To many parents, the inordinately difficult decision to end treatment, after months or years of fighting cancer, feels like giving up. Ending treatment does not mean giving up hope. The focus shifts from hope of cure, but hope of comfort remains. You can still do much to help your child live before she dies.