by Melanie Gruenwald
March 24th of 2016 (on Purim!) my vibrant, bright-eyed, 11 year old son, Koby, was diagnosed with glioblastoma, an incurable brain tumor. The future we assumed would be his suddenly evaporated. We had in front of us significant recovery, as a result of the damage caused by the tumor breaking, and we were given a timeline for his life, of 12-18 months.
He spent seven weeks at Children’s Hospital of Colorado, from the PICU to the Rehab floor- revealing diagnosis, uncovering intricacies of his tumor, living through brain drains and surgery to remove as much of the tumor as they could—and experiencing life moment by moment. He engaged in ongoing physical, occupational, and speech therapies and began treatment for the cancer and brain healing.
As I look back on this period, just five years later, I don’t know how we got through each day. Somehow we did. Much of it is a blur to me now.
The most important advice we received was from Dr. Bob Casey at Children’s Hospital. Dr. Casey’s advice: always be honest. Most importantly, be honest with Koby and with our twins (his siblings). Talk about and acknowledge death. If Koby asks questions about his prognosis, don’t lie. As we navigated his illness, having these conversations with Koby, and being able to talk honestly, was incredibly painful and powerful. These conversations allowed us to talk with Koby and his siblings about life and death. What do they imagine happens after you die? What do we imagine? And we always reminded Koby that he will always be part of our family and our story, and to please come back to visit us.
Koby was angry, he sobbed that it wasn’t fair. And as he said in his last words- he believed this was bulls***. We were able to scream and cry and question together. Koby and the twins were able to trust us to be honest with them. And that trust helped us through our grief and healing over the past five years.
This past November, I heard an interview on Colorado Public Radio, about a film called PALLIATIVE. PALLIATIVE is a documentary short exploring the conversations during end-of-life care with pediatric Palliative care specialist Dr. Nadia Tremonti. PALLIATIVE highlights the caretakers and families working with Dr. Tremonti. Filmed in Detroit at the Children’s Hospital of Michigan over several years. PALLIATIVE aims to draw attention to a vital area of care struggling to overcome the stigmas of death and dying.
This film and the raw honesty involved, touched me, and brought me back to the many incredible professionals who supported us through Koby’s illness and death. We experienced the power of Palliative care, and of being able to have the toughest conversations in the world with our son.
Jamie Sarche, of Feldman Mortuary, frequently talks about demystifying the taboos of death and dying. I reached out to her, and we decided to bring this important film to our community. We are looking forward to the screening of Palliative on March 7th at 4pm MST. Jamie and I will moderate a conversation with Dr. Tremonti, a pediatric Palliative care specialist.
It’s about death. And it’s about life.
Please join us if you can. Details here