I'm sorry you're going through this @fishandchips85 . It is horrendously shocking and I felt all you can do is get through it one minute at a time, not even an hour, but a minute.
My DS was diagnosed with medulloblastoma when he was 6. He didn't have proton beam therapy. They never explained why, and I was too upset at the time to ask, but I think it's because his cancer had already spread throughout his brain and spine.
The treatment he had was:
Oct - surgery to remove the brain tumour, followed by a second surgery to insert a shunt (a shunt isn't necessary for everyone)
Dec - 2 rounds of intensive chemotherapy. It's my understanding that they usually do radiotherapy first, but because there was a delay getting him on the list for radiotherapy, he had 2 rounds of chemo first, to try to delay cancer growth.
The first round of chemo was five days, during which time he was an in-patient. Two parents could stay during the day, and he could have visitors if he wanted them, but only one parent could stay with him overnight.
He then had a week or two break, followed by a second intensive round (another 5 days, but this time they let us go home every night, which was much better).
Jan to Feb - 6 weeks of high dose, head and spine radiotherapy, 5 days a week, with the weekend off to 'recover'.
April to Aug - chemo. This is usually every month, 4 days per month, as an in-patient; but it depends how well they are between sessions. If they get an infection and have to be hospitalised, the next round of chemo may be delayed.
If you're being treated at GOSH, they insist all paediatric cancer patients have a PEG tube (this goes in their stomach, for feeding, if they can't eat) and a PIC or Hickmann line inserted (for delivering chemo). These are surgeries done under a general anaesthetic.
My DS started losing his hair after the first round of chemo. Hair may or may not grow back after radiotherapy. If it does start to grow back, it starts from the places that had the least amount of exposure to radition. The parts that had the most exposure are likely to remain bald the longest (e.g. my son's hair has just started to grow back, but he is still completely bald at the back of the skull, where the medulloblastoma was and where the radiation was most concentrated).
Eyelashes start growing back after 7 weeks. Eyebrows may take a little longer.
I thought about writing a lot more, but it's a huge amount to take in, so I won't burden you here. I found that I just didn't know what to ask as our consultant in particular was extremely bad at telling us what was happening and what to be prepared for. If you think of questions and want to know what our experience was like, please ask.
Wishing you and your little one all the best. x