What is palliative care?
We will not hear of it! We WILL cure Nick of his Neuroblastoma, and even thinking about palliative-only care is unacceptable. We will not talk with anyone about palliative care. Not the doctors, not the nurses, not the social workers. We will NOT give up on our child. If the offered therapy does not have a potential for cure, even a slim one, then we are not interested, and palliative therapy means that you believe my child does not have that chance at a cure.
We are still fighting for a cure. And fighting. And suffering. Seven years we are still fighting for a cure and ignoring everyone who uses the obscene “P” word. We live in a war zone and we fight. That is what we do. If palliative care equals giving up hope, then how can we exist without hope? We are exhausted and don’t know where we are going to get the energy to continue on, but please don’t take away our hope. It is our only sustenance.
I don’t know when we were first approached about palliative-only care. We were always quick to raise our hand and say, “ttsh, talk to the hand.” Many times the oncologist told us there was nothing more to try. No new therapy. No hope for a cure. Go home and enjoy what time you have left with him. Our typical response was to thank them for their time and effort, move to another hospital, find a new oncologist, and start afresh. We would merely regroup and continue the war and the suffering in a new location with new poisons and renewed hope.
As we learned more, and understood more, we finally figured out that palliative care is more than giving up. We finally learned the true meaning of palliative care. It is the entire medical and family support team doing their utmost-best to make sure our child has the very best, most pain free, stress free, and most fun next possible, whether that next is expected to be an hour, a day, a week, or an undetermined amount of time. Who are we to set that timeline? It is between Nick and his god to decide when it is time to leave the body.
Through those years of fighting and suffering, we could have concurrently received palliative care along with the potentially curative care, but we did not understand. Apparently our doctors did not understand either, or they would have made more of an effort to explain the concept well enough for us to accept it. Reaching for a cure does not need to mean maximum suffering.
Palliative care needs to begin at the beginning, but it also needs to end after the ending. We did not receive any bereavement services, just as we did not receive any pre-death palliative services. Palliative care needs to continue on in the form of bereavement services to the survivors. The surviving family members shouldn’t become casualties just because their child didn’t survive.
We regret the suffering Nick endured. Some of it could have been eased or avoided if we had opened our minds to the concept of palliative care.