Let me introduce you to a key piece of cancer parent terminology:
Scanxiety - The gut-wrenching anxiety felt by cancer patients and parents in the run-up to scans, as well as waiting for the results.
If you're lucky, scanxiety is followed by
You-silly-bugger-phoria - The euphoria felt by cancer patients and parents when the results come back clear, and you wonder why you ever doubted it.
This week, we felt one but not the other. Here's what happened.
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What is High-Risk Neuroblastoma?
I may have watched way too much Netflix but let's recap previous episodes.
Annabel was four when she was diagnosed with Stage 4 High-Risk Neuroblastoma. A childhood cancer so evil that when our consultant broke the news, she said 'I wish I could tell you it was just leukaemia, but it's not...'
High-Risk Neuroblastoma (HRN) is extremely hard to treat, hard to get rid of, and hard to escape long-term. It's a cancer that affects very small children, predominantly, and has pretty shitty survival rates.
Hospitals throw everything at this disease in the hope of getting rid of it first time and forever. Because if it comes back, it comes back strong.
Annabel went through surgery, chemotherapy, high-dose chemotherapy, radiotherapy, and immunotherapy. She had countless general anaesthetics, painful procedures, and spent long periods living in hospital.
But it turns out that wasn't enough.
Bald and bold
Annabel may have lost her hair, and huge chunks of childhood, but she never lost her spirit. This child is a force of nature. Any teachers reading will understand the heavily euphemistic nature of that statement.
Spirited is bad for beleaguered parents. But it's great for fighting cancer. While other children were understandably laid low by treatment, Annabel bounced right back from every horror she was subjected to. Nothing brought her down for more than a few days. We were in awe.
When she was declared cancer-free after treatment, a new medicine entered the mix. DFMO. Available in America only, our amazing friends and community raised £100,000 to get her there. In parallel, my husband worked with our local MP to lobby for UK access.
Long story short, she got the drugs here and the money raised wasn't needed. It sits in a heavily protected fund with a charity, for any future medical or pastoral needs she might have.
Onward...
Shhhhhhhh... No bells here
After completing frontline treatment, Annabel was desperate to ring the bell. But I didn't want to tempt fate. Like a snapped twig or stifled scream in A Quiet Place, I felt like ringing the bell would let the cancer know where we were and help it find its way back.
As we navigated this precarious new normal post-cancer, we laid low, crossed fingers, tempered every positive statement with a muttered Hail Mary.
One month clear. One year clear. So far so good.
High-Risk Neuroblastoma has zero chill
Now, the timelines aren't literal. Cancer can't use a calendar. But, generally speaking, if a child gets to two years without relapse, their long-term survival chances increase. Same again after five years.
Next month would have marked that two-year milestone for Annabel. We'd been quietly counting down. Cautiously counting our chickens. 18 months... 23 months... Nearly two years!
But it turns out that no matter how much wood you touch when you tell people 'Yeah, she's doing really well, thanks', cancer can find you again.
And here we are.
23 months cancer-free.
One week into her relapse.
Fuck cancer.