parent opinion

'My daughter was dying of cancer, and a friend dropped a 'miracle cure' on our doorstep.'

When my daughter was undergoing treatment for cancer, a container of “holy water” arrived at my door from an acquaintance who had taken a trip to a sacred spring somewhere in the Middle East. “Have her drink this,” the note said. “It has miraculous healing properties.”

I politely thanked this well-intentioned person, but I was, frankly, horrified. My daughter was immunosuppressed! All I could think about were the germs I’d be introducing into her system.

This wasn’t an isolated incident during my daughter’s treatment. While most of our family and friends trusted that we were doing everything we could to save Ana, there were also those who insisted we could do more. They pushed “miracle cures” on us — things like high doses of cannabis, frankincense oil (rubbed on her stomach near the tumour), and other dubious remedies. They meant well, but they were only adding to the pain I felt over not being able to heal my child.

It wasn’t just the “alternative” or “holistic” treatment advice that caused distress. My (now-estranged) cousin frequently sent me clinical studies and journal abstracts about Ana’s specific tumour type, many of which I’d already seen and reviewed with Ana’s doctors.

At first, I was receptive, letting my cousin know I’d forwarded a particular study to Ana’s oncologist and keeping her informed about his response. In most cases, though, the treatments she forwarded had to do with immunotherapy, which Ana wasn’t a candidate for due to her immunosuppressive drugs.

My cousin ignored my explanations regarding why we couldn’t explore a particular treatment and continued sending studies. When I asked her to stop, explaining that those of us involved in Ana’s day-to-day care were already monitoring (and even using) the latest available treatments, she stopped speaking to me. She never reached out after Ana died, and she skipped Ana’s memorial service.

Watch: What Briony Benjamin learnt after being diagnosed with cancer. Post continues after video.

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Now, more than two years after Ana’s death, I wish I’d spoken up sooner about the pain this kind of advice caused. If I’m being honest, it’s still causing me pain because the question continues to linger in the back of my mind: If we had given Ana one of these remedies, would she be alive today?

Maybe to outsiders, it looked like I’d given up. But I stopped talking about a cure when Ana became terminal not because I didn’t want one — not because I didn’t lie awake at night and dream about a magic pill, potion, or plant that would shrink her tumours — but because I knew that road would only lead to despair. When it became apparent that a cure was impossible, our goal became to help our daughter live her life to the fullest for as long as possible. The reality was that the miracle cures being pushed on us had the potential to do more harm than good.

It was particularly painful to get links to miraculous stories about people who were cured of their cancer. It was like dangling food just out of reach of someone who had been starving for a long, long time. As much as I prayed and begged and hoped that something or someone could cure Ana, the reality was there would be no miracle cure for us.

Ana had an extremely rare type of tumour, and we explored every possible treatment option with her team. When there are no precedents for treating a disease when the standard treatments don’t apply, when you are faced with monumental decisions like surgery to remove an organ or a limb — you’ll do just about anything to save your child. Mixed in with all that fear, doubt, and helplessness is the perpetual feeling of failure. It’s a constant hum: I can’t make it better. I’m not doing enough. My child will die because I can’t fix it.

This is a powerful hum. It can lead us down very desperate roads. But as a parent, I had a responsibility to make sure I didn’t do more harm than good. The physicians that treated Ana shared this responsibility.

my child died cancer
Ana, Age 15. Image: Supplied.
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We made a choice to let the physicians lead and to walk the path of Western medicine, but we weren’t blind followers. We were always informed. We asked questions, sent the doctors research, and weighed the pros and cons of every possible treatment option.

But, at some point, we had to let go and have faith in the doctors because we weren’t doctors ourselves. We didn’t understand the complexity of cancer and how drugs stop it from happening and why Ana’s body seemed to be turning against itself.

I know this wasn’t good enough for some people. I know people meant well, and I cherished our support system. But every time someone would emphatically suggest an herb, oil, or juice fast, it would throw me into a tailspin of doubt. Were we doing the right thing? Maybe there was some miracle remedy out there? It let that dark despair in.

It was already difficult for us to figure out what to try or not to try among the known treatments for cancer — the ones with actual studies and documented success stories. When someone would hint at the promise of a magic pill, the one that could cure her, the one that we absolutely must try, we were faced with the more-harm-than-good dilemma all over again.

And each and every time, the implication was that I wasn’t doing everything I could to save Ana. Each and every time, I was reminded that if I failed at this, I failed spectacularly, and with devastating consequence.

The best way to offer support to a family with a very sick child is by asking what they need. Then really listen to the answer. Some people want information on alternative treatments. Some people want a combination of both mainstream and alternative treatments. And some people just want prayers, hugs, and healing thoughts.

This story originally appeared on Human Parts and has been republished with full permission. For more from Jacqueline Dooley, you can find her on her Medium profile, or on Twitter.

If this has raised any issues for you or if you would like to speak with someone, please contact the Sands Australia 24 hour support line on 1300 072 637. If you think you may be experiencing depression or another mental health problem, please contact your general practitioner. If you're based in Australia, please contact Lifeline 13 11 14 for support or beyondblue 1300 22 4636.

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