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.

I stumbled on this thread in active and just wanted to say that I am so, so sorry, sad and shocked by what you and your lovely ds are having to deal with.

We have experienced incompetence, arrogance, downright not caring and hopeless communication that has made the difficult experience of a child’s illness so much worse, and the frustration and anxiety of chasing for answers and nothing happening as it should, and nobody telling us anything. I just naively assumed that paediatric cancer services would be different, that you’d receive good care and consideration… I’m so sorry that’s not the case, and it’s absolutely not ok. The health service is in a shocking state.

So many good wishes to you and ds, and I hope he’s home soon where he feels safe and comfortable.

Thank you @WaitingForMojo . I'm sorry to hear you've also had awful issues with the healthcare service.

This Sunday will make it 3 weeks DS has been back in hospital. Results of the lumbar puncture finally came back and suggest that he has viral encephalitis - so the chicken pox has spread throughout the liquid surrounding his brain and spine. That's why he was having tumour symptoms - the brain didn't like being disturbed by the virus, as one Dr described it.

The IV antiviral medication has to be given for three weeks, meaning another week in this tiny box room, which poor DS is never allowed to leave. He wasn't even allowed to go in the coridoor today, so the physio could assess his walking. I am so pissed off they didn't test for chicken pox earlier, when I first said I thought he had it. Had they treated him earlier, I don't think he would have been as ill and we'd nearly be at the end of treatment.

Just wanted to update that DS is now home. Had slightly more than the 21 days of antivirals and had to go back for blood tests, as there was concern over his kidney function, but is home now.

So glad to hear it @C152 hope things can return to a bit of normality

So pleased for you both that's he's home ❤️x

So...recovery from the month in hospital has been very hard. Things are getting better now, but we were all in total shock that something not cancer-related could put DS right back to square one. He was the same as he was after finishing all the radiation and chemo. His hearing is now noticeably worse (from the mutliple antibiotics) and his balance was very bad but is improving.

He also has an MRI coming up, which is always worrying. I don't know why I do it to myself, but in the lead up I always go over the (few) consultant letters and previous MRI results and pick up things that I missed the first time around. Then I worry about what they mean and end up reading medical papers all night every night until he finally has the scan.

Sorry to hear it was such a slog in hospital; glad things are getting better. Pre scan is always a nightmare.
I read the medical papers too. But then the CNS tells me much more ‘positive’ things. The rollercoaster analogy is irritating but true.
Will he be able to go to school
for the end of term fun stuff at all?

PS the [local council] hearing support guy is very friendly and approachable. He works with all the schools.

Thanks @ScaredOncologyMum How are things going in your neck of the woods?

DS should be able to go to any end of year things, subject to the chickenpox outbreak that's been circulating throughout all the classes for weeks abating. (Despite knowning that the encephalitis that caused him to be hospitalised for a month was caused by chicken pox -which he caught at school - the school and the moronic CNS think that's no reason for him not to attend! I want to beat all their heads together in frustration. As well as those who insist it's not possible to get chicken pox more than once or if you do, it's less severe each time you get it.)

Good to hear the local hearing person is approachable. We were referred about a year ago, but haven't made it to the top of the list yet.

The hearing guy phoned me soon after the referral to introduce himself and check if we needed anything. He wanted to
meet H in school which I declined but he spoke to school and a subtle table/desk rearrangement took place so she always sits at front. I have stopped the hearing tests now, but the St Thomas’s team did the referral for us. Definitely worth following up- can DM his number to you.

Scan in 2 weeks or so. Tumour markers down which is great but still nervous re scan. And oncologist dropped bombshell that she is leaving. Had a very emotional and complicated
response to this news!

C152 I hope your son is continuing to improve, no, oh I hope he is massively improving and I hope people tasked with providing you care are doing so. I am just a stranger on the internet but I am wishing you strength and love to keep getting through all of this.

@C152 hard relate to the reading medical papers in the run up to the scan and beyond. I find it impossible to sleep and spend the nights searching for any new developments. My dc had an encephalopathy syndrome because of a reaction to chemo which I know is different to encephalitis because of chicken pox but may be similar in terms of recovery? It's hard to unpick what's to do with what complication, but it took a long time for the brain to settle (unscientific words but I hope you know what I mean). The weird thing about it was how hands off the medics were after my dc left PICU and HDU. We could have done with some support or follow up because of the agitation etc but it was back to business with more chemo. I completely get the reluctance to send your dc back to school when there's chicken pox about. It seems crazy to me that when a child has had such a life threatening reaction to chicken pox that there isn't more of an individual risk assessment.

@ScaredOncologyMum Pleased to hear the tumour markers are down. I hope the scan goes ok and you get positive results soon after. How are feeling about the oncologist leaving? Have you met their replacement?

@banabak Thank you for telling me a bit about your DCs encephalopathy. Yes, that is it exactly - the brain is agitated and seems to take its own sweet time settling down again.

DS had his scan this week. The practicalities of having the scan went ok, although we were told it would take 45min and it was just over an hour and a half, which is the longest it has taken since his tumour was first diagnosed...now comes the waiting for the results.

So, an update to say there isn't really an update at the moment.

DS's last scan results were stable, which was good. However, he was due another scan a couple of weeks ago - we had to be up at 5:30am and left home at 6:20am to get to the hospital for 7:30am, where we sat (on a hard examining table - no beds or slightly comfy chairs available) until 12:40pm...when the nurse came in and said sorry, DS can't have his scan today because the oncology team didn't complete the required paperwork on time. 'WTAF?!' doesn't even begin to cover it.

It's not just the little things, like the annoyance factor of ruining the first day of half term for no reason, or the fact DS hasn't eaten or drunk anything for over 17hrs by the time they get their act together enough to say they can't do his (scheduled months in advance) scan that day, it's the traumatic build up to it. DS didn't mention being upset or worried about it, but had slept in my bed every night for the week leading up to it. It's also pushed the worry forward. Although re-reading my earlier posts about his lack of balance has made me feel slightly better...maybe his ongoing balance issues are still fall-out from encephalitis.

School has become another challenge although, much to my surprise, it's the local authority who've been supportive about putting a plan in place to help ensure his additional needs are met.

@C152 thats awful about the scan. It’s not just the scan it’s everything that goes with it. It affects everyone’s wellbeing, as like it or not , on this crap journey life is punctuated by scans and results. Have you got a new appointment scheduled? I hope there was some acknowledgement of the impact an error like this has on everyone. Hope DS and you are ok.

Glad LA are being useful. Have school pull their socks up.

Hi,
I don’t know if anyone is still checking this thread. I hope all is well with everyone. Xx
My ds is currently going through treatment for relapsed medullablastoma.

Hi I'm really sorry to hear that @confused9 . What protocol have they got him on? Is he managing to have some good times in amongst it all? My DC also had medulloblastoma and is stable currently. We know another child who relapsed who is on oral chemotherapy alternating with another one or two, seems to be quite well at the minute.

He is on a metronomic regime and is managing the side effects pretty well. It’s really hard to get information on or access to anything other than the most standard of treatments here though. I’m glad your dc is stable :)

Hello, glad minimal side effects.@C152 has that scan be rescheduled and are the LA still helping?

Hello @ScaredOncologyMum

Yes, that scan I mentioned was re-arranged eventually, and all was stable. The next scan is this month.

Yesterday was a really shitty day. Ophthalmology appointment, which we were expecting would just be the standard, all good, see you next time. But it turns out that DS has developed cataracts in both eyes and will need surgery. I asked about the timeline for this and the Dr gave a kind of half laugh and said, 'well, I'll see you in 3 months'. So, it's clearly not urgent, urgent, but I expect something will need to happen relatively soon. So he's gone from a kid who had better than 20:20 vision, to a 9 year old with cataracts in both eyes who, providing the operation is successful, will then need to wear glasses because the surgery will ruin his close up vision (according to the Dr). I know this seems like a relatively small thing, all things considered...but it's one thing after another and all these little things add up.

This is such a shitty fucking disease. Actually, it's not the disease (although that is shitty on its own), it's the treatment. None of the issues we are facing are caused by the disease; they are all side effects of treatment. And I wish our worse than useless oncologist would actually answer some questions and be honest for once in her life. The ophthalmologist is direct, but has such a pleasant personality and funny, sarcastic sense of humour, that he's just much easier to deal with. He said the cataracts were inevitable, given the treatment DS had. He is also the only one who offers to explain directly to DS what is happening.

I just wish the consultant would say things like that. Not some wishy washy, well this "might" happen, using tone of voice to imply that would be rare. I'd much rather have someone say, 'look, 70% of patients exposed to this type of chemo will suffer hearing loss', or 'he will develop cataracts within 24 months of the end of treatment'.

In terms of the Local Authority, I haven't had the energy to make a complaint to them. But the school is deliberately obstructive. They won't follow the EHCP, there's another kid in the school physically bullying DS, regularly hitting him in the face, holding him on the ground and throwing things at him while DS tries to protect his head. I am at my fucking wits end with it all.

@confused9 I am sorry your DS has suffered a relapse. May I ask, how long were they stable before the relapse? And what have the side effects of current treatment been like for them?

@confused9 it's hard to know what the treatment plan is for relapse here, our consultant is really vague when we ask (I like to have a plan) although the CNS did talk about MEMMAT which I think is a metronomic one that's had some results? Where are you based?
@C152 you have really articulated some of my feelings about the treatment, it's like you can never relax, not just about relapse but the inevitable side effects of treatment. I just hate thinking what will it be this time? Cateracts, growth hormone deficiency, or cavernoma? My DC has the hearing loss already, a little girl we know has GH deficiency, a boy we know of had cateracts quite quicky. I swear cataracts weren't mentioned to us but growth hormone was practically guaranteed.

I am so glad you said that, @Castlereagh (about never being able to relax). I feel like I am the only one who is always on edge, just waiting for the next traumatic event.

First it was hearing loss, then is was his thyroid, then it was suspected growth hormone deficiency, now it's cataracts. There's no good time, if you know what I mean. I mean, yes, we have been on a few holidays, which have been a godsend, but it's not like you have a sustained period where you can breathe out and go, 'now everything will be ok. This was a shitty hand, but we can move on from here' because you know it's only ever going to get worse.

Apologies for the depressing thoughts today. I am just very sad at all DS has to put up with...and for what end?

Hi,
sorry I am a bit rubbish about trying to work out who I am directing replies to but I will try to respond as best I can. My Dc has had about every side effect in the book I think! Bilateral hearing loss (doesn’t like to wear the hearing aids), cataracts ( now surgically successfully treated), growth hormone deficiency (can’t be treated while in relapse, so frustrated kid who is not growing like their peers), thyroid disorder(treated with thyroxine), cognitive difficulties which have a day to day huge impact. The school has been ok but not perfect. Previous school tried to just exclude from some activities rather than make adjustments. Some adjustments were removed without our knowledge as they assumed dc would have ´grown out of it’!! It was also hard for us to get through to them that this was not equivalent to autism, which is how they kept approaching it. I ended up doing all of my dc’s teaching for the guts of 2 years, including teaching to read. We got about 5 years out from end of tx before relapse.