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Coronavirus vs Childhood Cancer Treatments

When a child is diagnosed with cancer, a parents world can be turned upside down. Their only focus becomes making sure their child gets the best possible treatment so that they can survive and thrive. For many the treatments are gruelling, causing well-known side effects such as vomiting and hair loss as well as other problems including a reduction in their  immune system.

This reduction in immunity makes it hard for children undergoing treatment to fight off viruses such as covid19. So for those needing treatment now, doctors are faced with a difficult decision – do they treat the cancer knowing the child will be more susceptible to the effects Covid19 or delay the treatment until the risk is reduced?

For parents this decision can be heart breaking, knowing that the treatment that they need to save their lives, can put them at higher risk of covid19, a situation that Kidscan Ambassador Emma and her family have had to go through. This is Emma’s story.

Aged 15 months, Emma was diagnosed with a pilocytic astrocytoma (brain tumour) on her hypothalamus. Emma began twenty months of chemotherapy which was effective at reducing the size of the tumour. Unfortunately when Emma finished chemotherapy the tumour started to grow and after just a 6 month gap Emma had to restart chemotherapy. Now 11 years old, Emma has needed treatment on and off for 10 years to halt the growth of the tumour.

At the beginning of March, Coronavirus had started to spread across the UK. But Emma and her family had different news to process after they were told that the tumour was growing again. Doctors told them that Emma would need more treatment including possibly proton beam radiotherapy.

Emma: ‘When I first found out [that her tumour was growing again] I got upset as you would. People don’t know how to talk to me. To be honest I want to know, I will ask, I don’t want to be left in the dark. Some people talk over my head, so I’m like ‘wait what does that even mean’ or they patronise me or try to tell me everything is going to be fine. So they’re telling me my tumour has grown and telling me all will be fine when coronoravirus is happening?! It’s best to know the facts, so I can understand.”

By mid-March Coronavirus has escalated and Hospitals where struggling to maintain infection control in high risk areas such as transplant and oncology wards, making treatments that suppress the immune system risky. Emma and her family where face with the reality that the treatment may move her into the high risk category.

“Emma has not been on chemo for a while so currently she is not very immunosuppressed. She hasn’t been sent a text to say she’s vulnerable [by Public Health England] but if they do make the decision to start radiotherapy, that will then put her into the vulnerable group. We’re in no man’s land”

 “We can’t completely shield her, whether she gets this new treatment or not, as we have to take her into hospital once a month, there is a risk associated with that.

And more cases of coronavirus stretched medical resources, capacity for other medical care was reduced. Emma and her family where then told that some cancer treatment where being delayed, not only because of the risk to Emma, but also because of a lack of resources.

“The consultant said they’ll put in the application for treatment but because Emma is young and hers is a low grade tumour, she is low priority. Obviously this is devastating as we hoped Emma’s treatment would all go ahead in Manchester and all would be fine. We’re all very keen that she has proton beam therapy as it has less damaging results.”

“We’re all thinking that if they can defer it to a safer point in time that’ll be a better treatment for her. Although this is very frustrating, if they can defer it in a way it gives her body the chance to do a bit more growing. It’s a balancing act and ultimately a lot of it will come down to capacity. If there is not the capacity in Manchester then we’ll wait. The thought of two of us going to Germany at the moment just doesn’t bare thinking about.

We know she’s got to have horrendous treatment and that coronavirus could have a severe impact on that, added to that risk is time as we know the tumour is growing. We’ve got to wait until someone decides what they can do.

After the applications went into the hospital, Emma and her family received the news that she had been accepted for proton beam therapy.

“On Wednesday the consultant rang again to say that she’d been accepted for Proton therapy. So now Emma doesn’t know whether she’s coming or going.  We’ve got to spend some time trying to gather information and to make a decision as to what is really the best course of action for her”

We’ve been told that Emma will need a course of 28 sessions so for over a month, that’s a long period of time she’ll be at increased risk. They couldn’t guarantee she wouldn’t contract coronavirus during that time and if she contracts coronavirus during treatment and it starts effecting her health, they’ll have to stop. They wouldn’t be able to start radiotherapy again so it’s just a one ditch chance.”

For families who are fighting childhood cancer, social distancing is even more important. Something Emma feels strongly about, whilst remaining positive.

“If I wrote something or did a speech to those people [who are not following advice to stay in], don’t be stupid. You need your exercise we all agree, and if you’ve got small children yes they get hyper, but this is what life is like for some kids every day – you’re putting tomorrow’s adults in danger.

This is going to have a massive impact on mental health too. I want to show people you don’t need to be down, there is a light at the end of the tunnel…”

1 in 500 children will be diagnosed with cancer before the age of 14. At Kidscan we are dedicated to finding safer treatments so that children like Emma and their families can fight cancer without worrying about the side effects. We wish Emma and her family all the best  whatever course they decide to take.

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