Medulloblastoma - not responding to treatment

[C152]

Does anyone have any experience with childhood medulloblastoma (Grade 4, group 3) and outcomes?

My DS has had surgery to remove the tumour (which had already spread throughout his brain and spine when diagnosed), 2 rounds of intensive chemo, 6 weeks of radiotherapy and now another 3 rounds of chemo. Due to the constant strikes, he had no MRI for 6 months. He's just had an MRI and it shows absolutely no change to his cancer. (i.e. it hasn't spread further, but it hasn't shrunk at all either.) Our meeting with the consultant has been cancelled and pushed to a few months from now.

Does this mean he is chemo resistant? He has 1 more round of chemo to go (which I feel is pointless at this stage, as it obviously won't do anything other than cause more toxic damage), but what happens next? Will they force him to keep having more chemo after this 'final' round?

I want to focus on him getting the most out of life, however long it is, but I also want a bit of a guide as to how long that will be, which his consultant has always refused to give.

Does anyone know how to ´un-disablé private messaging? I can’t get it to work. I have my setting s set to ‘NOT block pms’. I cant see any other options

Sorry for being dim, what does CNS stand for? Who are they?

That's odd. I just clicked on 'Private Message' in my account, which would normally then show me a list of my messages, but today I just get a grey page that says, "Private messaging is currently disabled." Is that what you see too? Maybe it's been disabled by Mumsnet.

Yep i am getting that message. Will try again tomorrow

@confused9 A CNS is a 'clinical nurse specialist'. I don't know if it's the same in all areas, but at the 3 hospitals we've been at, a CNS is "assigned" to a certain number of children. In theory, parents can email/call them with questions, but I have never found any of ours useful (except for stealing necessary medical supplies from UCLH - don't get me started on why that's even necessary; or doing 2 kind things for DS at GOSH, like getting him a personalised badge and arranging a lab visit).

@C152 I am raging about school. I know you are a grown up and can handle yourself, but I am 100% ready to come with you to advocate or hand hold, and am going to ask teacher/school sh*t expert friends for advice. Hitting a disabled child must merit some sort of action.

Hi I know you have far more important things but I picked up via site stuff that there had been some illegal images shared on threads and also maybe via messages? So I think image posting and messaging was stopped, not sure for how long.

Thanks, @ScaredOncologyMum . I appreciate the offer of a handhold, and it made me feel better after sending the 3rd formal complaint in 2 weeks of this other boy hitting DS in the face hard enough to leave marks. You'd think the school would be extra cautious about people hitting disabled kids - especially those with brain tumours and shunts! - but it seems not. The love to spout crap about how disability friendly they are yet, in reality, they try to force out any kids who are a little bit different. I will let you know how the school (eventually!) respond.

Hello all. I hope everyone is getting on ok.

Scan results have just come back. They can see something 'non specific' on one area, but at least the consultant added 'scan is fine' to the brief notes. Will have to wait for the post scan meeting in a month to ask what this non specific thing may be.

Since the latest complaint (with photo attached), the bully seems to have stayed away from DS, thank goodness.

Its hard to believe children bully children who've had cancer. However a grown adult in the street laughed at my child's balding head once so I can believe it. Glad bullies are staying away for now. What is your gut feeling on what the non specific thing is? Why don't they tell you straight away, a month feels lik such a long time to wait. They wouldn't say scan is fine without justification I suppose. Hope the month goes as quickly or slowly as you want it to!

I honestly don't know. I was really worried before the scan, as the two weeks leading up to it, DS had regular headaches and was dizzy...but the consultant said 'scan fine', so I just have to hope that's really the case.

Hello all. I've been wondering how everyone is getting on @Castlereagh , @ScaredOncologyMum , @banabak , @confused9 ?

We had a good summer, but have a scan coming up...you know the worries associated with that.

DS is at an age where I need to start thinking about high schools...I am at a loss. We're within the catchement area for 1 local school, but it has a big bullying problem (not addressed by the Head) and the local online forum is full of nothing but complaints from parents who have children with SEN. I've looked at special schools, but none are appropriate for a child who is smart, just needs more time than others their age, and basic adjustments to make schooling easier (like providing a print out of whatever is written on the board, letting him sit at the front of the class etc). Has anyone else faced similar, and what did you do in the end?

Hello- I typed a big message out yesterday only to realise wasn’t logged in. Guess it is Childhood Cancer Awareness Month giving us a nudge. I am struggling this week with all the back to school stuff. First time in a long time I haven’t been buying uniform and bags. Had not anticipated how hard it would
hit. Plus my ‘middle’ (now youngest?) is going away to uni so will be very lonely.

sorry i cannot help much with school stuff. Assume you are catchment for H? Have you looked at FH? And K has no catchment. I know SEN children at K and their parents are happy. I know T isn’t SEN but they do seem ok to cater to differing needs wheras H don’t. Happy to ask around for any other options.

look forward to hearing from others in this weird CCAM.

@C152my dc started year 7 this week. The process of looking round lots of schools was v helpful as it was clear which schools could accommodate and which clearly couldn’t - none of that was apparent from the website/information. So far so good, and there’s no way I would have said my dc would have managed this time last year. We’re lucky to live in a city with lots of good secondary schools some of which have excellent SEN provision. The worry about bullying is real, my dc was bullied in year 6. After everything they’ve been through, and how utterly devastating brain tumours are physically, emotionally, cognitively - I felt the rage. Thankfully school dealt with it promptly, but I’m conscious that my dc is private and I only found out accidentally.

Scan coming up next month……

@ScaredOncologyMumI’m having to take some deep breaths through September, the awareness posts bring back memories of PICU, pre-diagnosis worries and the trauma. I can only imagine how upsetting they must be for you combined with the double whammy that is the back to school posts. Do you have people around you that get it? I’ve found oncology mums the only ones who can understand. Fantastic news about your dc heading off to uni, as hard as that will be for you, I’m amazed at how siblings manage to navigate life like this.

@ScaredOncologyMum Big handhold and virtual hug. Seeing back to school stuff everywhere, on top of CCAM and your middle DC heading off to Uni must be unimaginably awful and hard. If you would like to go for a walk one day, just shout.

Re schools, I'd already discounted H, as I don't like the approach of that type of school. It was the C school near the 'new' medical centre that is the one that has the big bullying problem and lack of SEN support. I've looked online at FH, but we're out of area, so don't hold out much hope we would get that one. (In an ideal world, I'd also prefer a co-ed school.) Think i will book a tour anyway and ask how often they are oversubscribed. K is a possibility, although their admissions prcedure is a lottery. I did just read this morning that if your child has an EHCP, you can nominate a preferred school, so that might make things a bit easier.

@banabak congrats to your DC starting year 7. I hope it goes well for them.

@C152 it sounds like a tough decision. I have an oncology mum friend with a child in y5 and we can't find anything quite right locally. Schools with sen units are aimed at autism/ADHD here, and his learning difficulties aren't quite enough to warrant specialist. As you say EHCP helps. My DC doesn't have one but currently at the other end of high school.

@banabak We've also had some kids making shit comments re appearance changes and disabilities, and one 'you're going to die soon why do you care'. Luckily all times really nice kids stepped in and stood up for DC. There is definitely a place for pre high school conversation practicing what to do if some bellend says something stupid.

@ScaredOncologyMum the back to school stuff is awful. I struggle with the events even with my DC still with me..things he's never going to do or should have got the chance to do. He has lost a sport which was a huge part of his life and I cannot bear to see the other team members or their families. I'm so sorry that you are going through all that but a million times worse.

Hello all

None the wiser on the 'non specific' thing that showed up in the scan before last. Consultant said that not all radiographers write down everything they see, only what might be considered a problem or a significant change, so it could be that the 'thing' was there previously and wasn't considered noteworthy, or it could be new but isn't causing a problem yet. Have had another scan since, which shows no change, so, touch wood, all is calm on that front.

The bullying issue continues. After 3 kids ganged up on DS in the playground recently, I asked the school for a written safety plan outlining how they plan to keep him safe and what the escalation process would be when incidents like this happen. All very polite - I ran the email through AI to make sure it wasn't "too emotional" (heaven forbid). The principal's response was to ring me up and literally scream at me, telling me she was refusing to put anything in writing because I was a liar! Denied any of the incidents I reported had ever happened, despite some of the worst ones happening in front of staff and other pupils. The level of unprofessionalism was off the charts. Even reading it back, it sounds unbelievable.

I feel like I am on another planet.