About this blog

About this blog

Alice was diagnosed with high-risk neuroblastoma, with MYCN amplification in 2019, a week before her second birthday. Blog written by: Jamie

  • Patient Name: Alice
  • Cancer Type: Neuroblastoma
  • Age when diagnosed: Week before 2nd birthday

Staying positive in the lockdown

21st April 2020

Nothing like a global pandemic

It has been a long time since we have experienced freedom. I don’t mean freedom in the sense of being locked up like a prisoner, but freedom to do what we want to do, when we want to do it, like we used to do; freedom to make plans and live our dreams. Last January, just before her second birthday, our beautiful little girl Alice was diagnosed with a rare and aggressive form of neuroblastoma. The journey has been a tough one, a rollercoaster of emotions, complications, recoveries, demonstrations of resilience and, above all, pride in what Alice has overcome in her short life. As we see the light of the end of her treatment over the next few weeks, we thought we could start to get back to our normal, everyday lives. We thought we’d seen it all, how wrong we were… there is nothing like a global pandemic to put paid to all that! And so our life in limbo continues.

Remaining calm

Due to still receiving the immunotherapy and differentiation therapies of her treatment, Alice, like many others in our situation, received her notice from the NHS that she was at particularly high risk of becoming seriously ill if contracting COVID-19 and that we should isolate for 12 weeks. However, whereas for the vast majority of the population, isolation or lockdown or however you refer to it, means an alien loss of the freedom that we all take for granted, to us it is a very different experience. We are remaining calm about this latest period of madness.

Simple in comparison

Having experienced the true depths of emotions, the intense periods of worry that comes with having a seriously ill young child. ‘Living’ in hospital for months on end (many of those months being in isolation whilst Alice received the hard-hitting treatment which stripped her immune system bare, throughout her stem cell transplant and during the numerous infections she picked up). This temporary lock-down, where we can spend time as a family in our own home and with our home comforts around us, is proving quite simple in comparison. Of course, the most worrying aspect of the pandemic for us at this point is ensuring that Alice is kept away from any likely source of transmission. The hospital continues to function and the team of wonderful community outreach nurses are doing their all to see patients at home – to keep them out of the hospital where possible. Alice’s treatment continues at home and we have seen no difference in the treatment delivery through COVID-19.

You will get through it

If I could pass on some words of wisdom to anyone feeling down about having to temporarily stay at home for the greater good, drawing from our experiences over the past 18 months, it would be that you will get through it. Try your best to enjoy some family time if you can. They will get back to their normal lives soon enough and soon the memories will fade into the background – just like they have to a certain extent for us. It’s boring I know, but you are safe at home! Stay safe, stay home.
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