Q: What role can wishes play in the care of children with critical illnesses?
A: Anytime a child is ill, the whole family structure is impacted. A child’s illness takes an emotional, and often physical, toll on everyone – parents, siblings, grandparents.
It’s difficult to help repair the family but so important because kids draw so much of their strength from their parents and extended family. The wish is always fun and exciting for the child, but I think it’s even more special for the family as a whole. It helps to heal the brokenness that occurs anytime a child has a serious illness. It provides a sense of unity for the family and helps heal fractured relationships that illness and disease so often bring to a family.
Q: Why do you think wishes are important to the children you treat?
We want to treat children holistically. I may be a neurosurgeon and I may be concentrating on two square inches of the brain under a microscope during an operation, but you can’t forget there’s a whole person underneath. In the recovery process, and thankfully, most kids with these serious illnesses do recover, you have to try to bring them back to the wholeness of their life before the illness. I think the wish is absolutely unique in that sense because it almost allows them to live out a fantasy of what life would be at its best after often coming through life at its worst.
Wishes have proven physical and emotional benefits that can give children with critical illnesses a higher chance of survival.
“It’s cancer.” Hearing those words from your child’s doctor will shake any parent to their core.
HuffPost reporter Caroline Bologna asked families affected by pediatric cancer to share what they wished people understood about their struggle and how to help. She offers a range of ways you can be supportive, but certain themes emerge: Do less talking. More doing. And more listening.
Don’t ASK what you can do. OFFER to do something – anything. Make dinner, mow the lawn, go food shopping. Families are so overwhelmed that they may not even know what they need.
Leave the medical advice and platitudes at home. Your opinions on their treatment plan or how they should pursue a “miracle cure” based on an article you read online are not helpful. Leave that to the doctors. Nor is it helpful to say, “It will be ok” or “God doesn’t give people more than they can handle.” Yes, it is more than they can handle and you’re making them feel bad about feeling overwhelmed.
Stay present in their lives. And listen. Just because you don’t know what to say doesn’t mean you should stay away. They need to talk and be heard. It’s the only thing that matters to them right now. They don’t expect you to fix anything.
When you live day-to-day for almost three years in the childhood cancer bubble, you somehow adjust to a new normal. You don’t notice how pale, bald and skinny your child is. You adapt to being isolated and don’t miss socializing — and you don’t realize the full extent of non-medical impacts that illness has on your child and your family. And even when the treatment is complete, you don’t just snap back to your old life. For our family, the wish represents the capstone to Jack’s journey: both an end and a new beginning. It inspired such a positive attitude and outlook in him. I can now say that, unless you have experienced it yourself, you can’t really comprehend the sheer joy and transformational power a wish truly has.