AT/RT Cancer - 1 Year Old

[ChineseAlan8910]

Nephew diagnosed with AT/RT cancer, he is 1 years old with a brain tumor that was mostly removed. Any experience with this type of cancer? Thanks in advance.

'Rare and aggressive' is the category.

No idea about this, but just wanted to send some love to you and your family.

Yes, I work in the field. Your family will get the best information from their consultant and nurse specialist, who will be able to answer any questions they/you have. I'm sorry that your family are facing this, and wish nephew and family the best for the future.

Edited for clarity.

My son had a different type of brain tumour but was also grade 4. I am so sorry your nephew and your family are facing such a diagnosis. Each child will respond to treatment uniquely and so even doctors find it very hard to predict response and prognosis.

The Brain Tumour charity is a good source of information and help.

as a suggestion, when my son was going through his illness I was exhausted trying to keep everyone informed as to what was happening. We set up a communication ‘tree’ where I only had to tell one person and they told the next/kept everyone else informed (I did not want to read/be bombarded by WhatsApp - my own shock and fear was enough to deal with without everybody else’s, if that makes sense).

sending your nephew and family love.

Sending you lots of love for this, please lean on support available outside of direct treatment in hospital too - play specialists, charity opportunities for memories and fun outside of the treatments. All the best x

I didn't realize advanced meant he had grade 4. 😭 Isn't that terminal?

Not necessarily please discuss it with the doctors and nurses at the hospital. Grades can mean different things for different conditions in terms of outcome. I know it’s hard but please don’t catastrophise! All the best lovely x

This is why it's important to speak with the hospital team. They can give your family clarity about prognosis and lots of other questions you might have. If your brother or sister think it's appropriate, you could speak with one of the medical team when you go to support them. Equally, if they would prefer to keep hospital contact just between themselves, you may need to find ways to cope with the 'not knowing'. The parents will tell you what they want you to know when they want to share anything. Again, sorry for your worries.

It is grade 4 or stage 4, all AtRt tumours are given this grade automatically.

Just an update. He passed away in November 2025, he had 2 weeks out of hospital then 6 weeks in an amazing Children's Hospice. Much love to anyone going through this.

Just seen this. I am so very sorry for your loss. I am sending my love to your family. I lost my son to a brain tumour. It’s a very long and lonely road but 12 years on I have learnt to live with grief alongside love and life.

Thank you so much for your message, I seem to be getting sadder and sadder. I think because we spent so much time with him in the hospice when he had passed away (4 days) in the special cold room, then he was buried rather than cremated. The thought of him laying in the ground on his own is incredibly hard.

We still have his identical twin who is such a joy, thank you for sharing your story.

@ChineseAlan8910 I am so sorry for your loss

Very sorry to read this.