1 year old - Brain Tumor - Cancer

[WooTangLang33]

My beautiful 1 year old nephew has been diagnosed with a brain tumor, removed partially and confirmed as cancer.

Next steps are to wait for the swelling to go down and then chemotherapy.

Any advice? He hasn't regained movement in his arm yet (surgery was Tuesday) but his leg is twitching on the same side.

How can I help the family? He has other siblings. Next steps for treatment? How long is the hospital stay?

Thank you for listening.

The treatment depends on what sort of brain tumour it is. Most treatment involves surgery upfront with chemotherapy and radiotherapy but for some it's just surgery. Stay in hospital depends on recovery and treatment aswell. It's early days yet. To help see if the family need things at the hospital like food parcels. Family don't tend to get fed at the hospital and can work out expensive. Do they're pets need walking and feeding maybe

Thank you, it was a posterior fossa tumor. He has a twin brother so this weekend we are all doing shifts with either of them so the parents can have a break.

Food is a great idea.

Do they stay in hospital for chemotherapy and radiotherapy?

How awful, so sorry they and you are going through this.

I imagine practical help would be very appreciated, offering to look after the siblings, taking around some home cooked meals that can be stuck in the oven, picking up groceries, taking bags of dirty laundry to wash etc.

Ah poor little chap , sorry to hear your news OP.

Hospital during chemo is usually dependent on which drug he is given. My son had chemo for a brain tumour when he was young and some drugs he could have as an out patient, another he had to be admitted for a couple of days to have fluid to protect his kidneys.

Thank you, how long does it last? The chemotherapy? Is it like a block then see if it works? Or session by session? Were you work accommodating to you attending appointments?

His father doesn't drive currently (medical) so it's all on my sister / the mother.

Length of treatment usually depends on which drug is used, how well its working, how well its tolerated etc.
Theres usually two phases of chemotherapy - the more intense start, then moves into a maintenance phase. My son was on chemo for 18 months, if I remember rightly (it’s been 9 years), he had four weekly chemo, then 2 or 3 weeks off. He sometimes had longer between if his blood counts didn’t recover enough - chemo won’t be done if the child is neutropenic (meaning they have no defence against infection)

He had MRI’s every 3 months to see if the chemo was working

Work wise - I gave up as soon as we found out, but we were in a fortunate position that I only worked very part time and we could afford to lose my wage. I also worked at my sons school so they were very understanding and didn’t ask me to work my notice.

My husband worked full time and whilst I did the bulk of the hospital stays/ outpatient trips, he did attend some and his work were fantastic.

OP look at the work of Prof. Thomas Seyfried and his work using a ketogenic diet to complement allopathic treatment.

Can you and other family members help with transport as dad doesn’t drive, either by driving or supplementing taxi fares, to give mum a break

Sorry to hear about your nephew.
Home cooked healthy dinners that can be kept in the freezer and easily reheated.
Help with washing and cleaning.
Doing school/nursery runs for other children if you can.
When I’ve been ill I’ve found people who just get on and help without asking what they can do most helpful.
Eg just say I can pick up kids Monday and Tuesday this week, is that ok ? Helpful?

teddys_tonic on instagram is worth a follow. Her book is full of helpful easy to understand nutrition advice and general advice about having and ill child.

I also DETEST the word benign and how everyone assumes it will all be ok now , it’s cancer just not a high grade

Benign tumours aren’t malignant. But in this case, OPs nephews tumour is cancerous not benign anyway.

OP I’m so sorry to hear about your little nephew- you sound like a lovely caring sister and auntie. I would echo the others- healthy home cooked foods and just providing childcare, helping with shopping, cleaning, childcare etc when needed

Sorry op somehow I’ve posted on the wrong thread sorry to hear about your nephew , and yes they are cancer there just low grade I’m fully aware as my son has one

They are now actively not using the word benign as it isn’t the case for tumours in the brain

My nephew died in November 2025, thank you all for your kind words. He had 2 weeks out of hospital to make memories together then 6 weeks in an amazing Children's hospice.

I’m so so sorry to hear this , my son has one and it’s just devastating, send you all so much love

Thank you very much, he leaves behind his identical twin brother so watching him grow and change brings both joy and sadness.

I hope your son is responding well to treatment, make the most of the time together as it is so precious.