How do you tell your child they are dying?
Six months prior to Violet’s death we were told there were no more options to treat her cancer, she was palliative and had days to weeks to live. It wasn’t as simple as that, there were options, but none were great, all ended with death. There were two key reasons for this; firstly the neuroblastoma had spread to the meninges of her spine and brain, which there is limited treatment options for (in initial or early relapses) in the US, secondly her marrow was so fatigued it would not recover from heavy treatment.
We knew this day could be a possibility, and there were times in the previous five and a half years where it was close, but when it’s real there are thousands of thoughts that hit you. One of those was how do we tell her there’s no more options?
We’ve always been honest with Violet, but let her lead the conversation, giving her heaps of detail was lost, she put importance in things like what prize she’d get for being brave. Initially we told her she’d relapsed which is why she had rib and leg pain, then left it at that while we worked through it. We told close family then traveled to see family in Cairns and Kingaroy; it was the best weekends we have ever had!
During those early days we had decisions to make around treatment and wishes. Hospital options were chemo or phase 1 trials, medium to heavy chemo was out due to her marrow, trials were a long shot and not a perfect match to her cancer. Understandably Violet was done with hospital, so any option involving overnight stays was definitely out. Home options were treat the pain and/or slow the cancer; we chose the latter which involved oral chemo and selection of opioids.
As the days turned to weeks we were still torn how or if to tell Violet. We sought advice from professionals and others who’d been through it, all said similar things; let the child lead, you know her best, it’s up to you. We had previously discussed death with Violet, talking of all the people she knew in heaven. It’s a different conversation when death is a reality. Honesty is really important to me, I wanted to tell Violet, to get her input in how she’d like her life to be celebrated, to create a bucket list. However, I agreed with Colleen’s perspective; Violet was wise beyond her years but still an 11 year old girl, her mental state was fragile, once we tell her it can’t be untold.
We struggled with guilt for accepting her prognosis, a spiritual wrestle; “have I given up”, “am I still a Christian if I’m not believing for a miracle”. At different times we accepted and realised healing was not going to come for her in this life. This gave us peace. Not because we don’t have faith that she could be healed, but because we have faith in God regardless of the outcome. It’s hard not to think we give up, but we also didn’t want Violet to suffer. We know a place without pain and suffering exists for her in heaven.
Colleen and I knew Violet would eventually ask and were prepared this could happen when just one of us was with Violet, which it did. About 12 days before Violet passed, as Colleen was helping Violet from the shower she asked what was next. Apart a minute of denial, Violet took this amazingly well, the conversation quickly shifted to asking if she would get to meet many people she already knows in heaven.
Until she passed, Violet was still processing the news, she would ask how long we had known, who knew and if she’d make it to see Christmas. She told Oliver and Piper, which was hard. She was mostly concerned for her friends, she didn’t want them to be sad, she wanted them to know she would be ok. Unfortunately, although she bought some toys to make breaking the news easier, she didn’t get to tell her friends. We managed to talk briefly with her about what she wanted done with her things, most importantly her Bilbies. She also spent time surfing the Kmart website looking to buy lots of toys (with her hard earned elephant profits) to make sick kids in hospital happy.
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