Navigating treatment decisions: A parent’s perspective

Solving Kids' Cancer UK Trustee Helen Duffy, mum to Michael Duffy, who was diagnosed with high-risk neuroblastoma in July 2021 (now 5 years old and healthy), writes about how she came to decide not to fundraise for maintenance treatment.

I remember those first few nights in the hospital room so well. We knew it was cancer, but we didn’t know what type. You Google statistics on childhood cancer – okay, there’s some good news: 80% of children now survive, and so many types are treatable. Just get through treatment, and maybe everything will be okay.

Then comes the diagnosis – it’s high-risk neuroblastoma. I can tell, even in the oncology world, this is not good news from the consultant’s grave face. She looks me in the eyes and says, “He is so precious to us, and we treat to cure. We will do everything we can to save him.” That got me through so many hard days.

You’re back on Google. You see the statistics – around a 50% five-year survival rate. A flip of a coin (never torture yourself by flipping an actual coin!). You look to connect with other families and head onto social media. There are so many families fundraising… What is the vaccine? What is maintenance treatment? Wow, so many children have relapsed – what does that mean? The most heartbreaking statistics.

I think this will sound familiar to any parent reading this whose child has been diagnosed with neuroblastoma in the last few years. As someone who has been in your shoes, I have some things I wish I had known in those early days, and I really hope they can help.

1. Social media is not an accurate picture of all children with neuroblastoma in the UK

When you first log on and search #neuroblastoma, there are so many accounts with heartbreaking news. It’s important to remember that you are seeing a skewed sample. Many families share updates about their child from the start, but others only begin posting when they need to fundraise – for example, when treatment isn’t working or their child has relapsed. Nowadays, social media is such a key part of fundraising, and it’s hard to imagine trying to raise funds without it.

Therefore, it’s more likely that you’ll come across those families online. There are, I promise, lots of families who don’t share anything publicly – just enjoying normal life after their children have been treated.

2. Maintenance treatment in the UK is evolving quickly!

When we were looking at trials for maintenance treatment, the options were the vaccine at MSK or DFMO – both in the US, both costing £100k+. What was available didn’t change during our treatment, and there weren’t any significant publications from the trials to influence our decision-making.

One thing that did emerge was the really encouraging results from the CAR-T trial in Rome. Suddenly, it felt like there was a glimmer of hope for children who relapse, and we decided we would save our energy and fundraising network in case that ever happened to us, with a view to heading to Rome if possible.

Now, DFMO is available on the NHS. If that had been the case when we finished treatment, we would have taken it.

3. If you choose not to fundraise, it doesn’t mean you care less or love your child less

Deciding whether to fundraise is a huge undertaking. I honestly felt like it just wasn’t possible for us. My son was one year old, and I also found out I was pregnant the day we were admitted for high-dose chemo. Pandemic restrictions meant I was often the only person in the room for days on end. I could barely go to the toilet, let alone raise hundreds of thousands of pounds.

It’s okay to feel that you can’t do it, and it has nothing to do with how much you love or care for your child. We would all do anything for our kids if we felt it was the right thing to do.

4. Listen to your gut

There’s a really strong instinct that comes into play when making this decision. Some parents feel that even if there’s only a 1% chance something could help – or improve their child’s chance of survival by 1% – it’s worth it. They will leave no stone unturned.

Others feel more cautious, not wanting to put their child through more treatment and its side effects without clear evidence it will make a meaningful difference. They want their child, who has already been through so much, to get back to normal life. They may not want to uproot the family to go abroad or simply be unable to.

Both of these are completely valid responses. You don’t always have to know why you made the choice you did, and you certainly don’t have to justify it to anyone else. Sometimes, you just know.

5. Sadly, crystal balls don’t exist

Relapse is the thing everyone fears – so much so that, at times, you might struggle to even say the word. Every time we got reassuring scans, I would say to my husband, “It’s not good news, it’s just not bad news.” That might sound pessimistic to some, but when you know what relapse means and how cruelly the odds swing against children, it’s hard to ‘stay positive’.

Sadly, there’s no crystal ball to tell you what will happen depending on the path you take. When I decided not to fundraise, I made peace with the idea that if relapse happened, I had saved my energy and capacity to fundraise at that point. That was enough for me.

I am so grateful every day that my son remains well. He didn’t relapse in the first three years after finishing treatment, and I’m confident that the decision I made was the right one for us. I love that SKC never pushed us either way (no matter how much I begged them to make the decision for me!). They just presented the facts and data and were there as a listening ear when we needed it.

My son’s little sister was born a couple of months before he finished frontline treatment. She was the perfect post-treatment antidote – keeping us tired enough to keep the anxiety at bay (at least when scan results weren’t due).

Solving Kids’ Cancer funds so much incredible research. I really hope that one day there’s a breakthrough that means parents don’t have to make these difficult choices. Until then – hope, always.