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.

So sorry to hear this difficult situation. Commenting to try and bump the thread.

Hi, another bump for this thread.
Hopefully the night crew might spot this and help out.

Gosh @C152 I’m so very sorry. Do you have a nurse specialist you could speak to? If not can you contact your local children’s hospice - they are truly amazing places and should be able to offer you support and advice.

Thanks for the bumps @CuteCillian and @SingingSands

Thanks for your reply @KnitMePurlMe . No, I have not found nurse specialists helpful for anything at all. I'm also not sure what value a hospice would be, given the one we are connected to simply says they work with healthcare professionals at GOSH etc., and GOSH are the ones incapable of communicating effectively. Don't mean to be dismissive of your suggestions though, and I do appreciate your reply.

Not a medullablastoma but another type of solid cancer. DD had 4 x chemo then surgery and relapse, so a different type of chemo was utilised. Is there a protocol? I have found that the CCLG protocol has been followed very closely, and have found copies online. Have you asked in YLvC or MyKidHasCancer on FB? Have you been told it is terminal? (It sounds as if you think it is?). Awful to be left hanging, I have felt a bit abandoned at times by hospital but nothing compared to what you have experienced.

@C152 I'm so sorry to hear this. Hope some medulloblastoma parents see this thread. Are you on any Medulloblastoma FB groups? I've learned so much from the FB groups for my dc's type of brain tumour (more than I have at any appointment!) Was the aim of treatment shrinkage or stability? Different kind of brain tumour for my child, but stability following chemo is seen as a 'win'.

I'd find it unbelievable that you weren't able to speak with your child's oncologist/get good info from the specialist nurses if I wasn't in the same world, but I completely get it. It really is bad right now. It sounds like you need an appointment to discuss next steps and strategy and can't wait for a few months for an appointment to ask these questions. Could you contact the consultant's secretary, cc the nurse specialist and ask for a telephone/in person appointment before the next round of chemo as you're wondering what they see the benefit of further chemo is v side effects when there hasn't been any shrinkage. Can they fit you in to the next clinic?

Could you ask other parents of children having treatment at GOSH how they've arranged appointments in similar situations. I've managed to get telephone numbers/e mail addresses from other parents at King's which helped when I felt like I've been hitting my head against a brick wall.

Hi C152 your hospital experience sounds absolutely shit. My DC has the same tumour but the tumour did so far stay away after surgery/ treatment. Was your DC's tumour ever gone / nearly gone? Do you know if it was MYC / MYCN amplified? My understanding from other parents is that there is no standard care for relapsed/refractory medulloblastoma, and people seem to go for a few different lower dose chemo options to buy time for as long as possible. At one point they were using metronomic chemotherapy, not sure if under a trial or not.

Not sure how old your DC is or what they would want. I guess for us we would want to know whether in that time DC would be well enough to enjoy stuff or not. My DC hated chemo so potentially not. Without chemo, disease progression is very fast particularly in group 3. Even with chemo sometimes. All this is just from other parents and convos with our nurses. Have a look at Follow the Child book if you can. I'm so so sorry.

@ScaredOncologyMum I don't really no how to answer whether there is a protocol or not. They have procedures they follow when we're in hospital, but as DS is not on a trial and is receiving "standard" treatment, there has never been a plan for how to treat him. (Which is of course totally opposite to what we were first told when we were trying to decide whether standard or trial treatment would be best for him.) I know that seems difficult to believe but, despite my begging, his consultant said to my face, quite shamelessly, "there is no plan."

On the one hand, not being tied to a trial is good, because it means treatment can change / be adapted for the child, but all clinicians continued refusal to engage in any effective communication whatsoever has been unbearable. I've told them repeatedly that I understand nothing is set in stone and if there are multiple choices, I just want to understand what might be coming up e.g. if (x) happens, then we will do (y) or (z), but if (a) happens, then we'll do (b) or (c); or even just, 'we're not sure what's best right now, but we've referred it to the wider group and expect an answer in x weeks.' They've never provided anything even remotely like that. (Communication has been beyond crap e.g. we happened to bump into the consultant in a corridor when we were at the hospital for an early MRI and she said casually as she walked past, 'hello, are you all set for Wednesday?' (i.e. three days away) I have no idea what she is talking about and ask what is happening on Wednesday. 'DS is starting radiotherapy then. Hasn't anyone told you?' was her response. No, no one had mentioned a thing.

The current treatment of 4 cycles of chemo is following the St Judes trial, which has found that although more rounds of chemo causes greater damage caused by toxicity, outcomes aren't improved by giving more than 4. The info available online about the trial doesn't say what happens if no improvement is shown after 4 cycles.

We haven't been told it's terminal by the consultant in charge, but I have always felt it would be, based on what I have read. In our very first meeting, a different neuro oncologist (they share care with other hospitals) said, "it's fair to say we don't cure the majority of these types of cancers..." but she was cut off by my consultant, who said she'd read a paper recently that said the chances were more like 50/50. Despite my requests, no one has provided me with any evidence of where these stats are published. She has consistently insisted their approach is to "cure" DS's cancer, not just try to shrink it or keep it in check. Clearly she's not going to cure it with 1 more round of chemo, if 5 rounds and 6 weeks of radiotherapy have done nothing.

@banabak No, I'm not on Facebook, so I haven't seen any of these groups, but I may take a look, thank you.

DS's consultant continually insists the aim of treatment is "cure". If she'd been realistic with us from the start, I may feel better about seeing no further spread as a 'win', but right now it feels like 9 months of torture for no gain and a considerable amount of painful, debilitating, permanent side effects. Which is exactly the worry I raised at the very beginning - what's the likely outcome, so we can weigh it against the damage caused by treatment. I was never given an answer; just bullied into moving forward with their treatment.

Yes, you're right, I do need to speak to the consultant now; and I could email her secretary, but my fear is she will just come back with the response she told me last month, when I asked if she would review the drugs/level of drugs being used as the 3rd round caused him to lose his hearing; and she just said, something along the lines of, the damage wasn't bad enough to stop/reduce chemo drugs. (Hearing loss isn't the only damage - every single intervention has resulted in new permanent damage which makes life worse.)

Yes, I have learnt a lot of helpful information from other parents, but they all complain about the total lack of communication and often really shitty treatment of children by some staff.

Hi there, have just read the thread and feel for you so much. I’m not in your position but jump in because I have worked in the NHS and you are able to make a complaint about the communication around your child’s care.

The complaint does have to be investigated and learnings/recommendations for improvements if the complaint is a reasonable one.

It might mean that someone (clinical or not) takes a bit more care in communicating with you about what might happen next.

Hi @Castlereagh Thanks for your reply. I'm really pleased your child's tumour has stayed away after treatment.

My DS's tumor was completely removed with surgery, but the cancer had spread through his brain ('lesions' is what the Drs referred to the spread as) and his spinal fluid. This spread was there upon diagnosis and it's this that hasn't changed.

There is no MYC/MYCN amplification. I don't know whether this is a good thing or not, as it's never been explained by his consultant. Some things I've read seem to suggest it's a good thing, but others suggest MYCN amplification may allow drugs to pass the blood brain barrier, so who knows?

My DC was 6 when diagnosed but has since turned 7. Initially, when he was very first diagnosed, he wanted treatment, but none of us had any idea at all what that actually meant. Now, I really don't know what he would want, and I don't want to bring it up without any helpful indications from his consultant about likely outcomes. He has hated every second of treatment and has been traumatised beyond belief, so it won't surprise me if he doesn't want to continue. Like you say, he has to be well enough to enjoy whatever time he has left, and that's no possible having chemo.

I actually bought the book Follow The Child a few weeks ago, as I'd heard it was very good. I must admit, I couldn't get through much, as it made me cry too much. I will go back to it though.

Oh god it's so awful you haven't got a treatment team you trust. I think people imagine that in our situation you would have people you can ask stuff, but we have also really struggled. I do wonder if you have any energy left to make a bit of noise about the appointment with the consultant being cancelled and moved. It worked for us once although they disliked me even more since 😭.
I did meet someone whose son was feeling ok on whatever chemo they try (something and etoposide?) He was on a new chemo regime to try and keep him stable. Much lower doses of stuff than in the first phase. Didn't make him sick or anything. However I m pretty sure my DC would say no anyway. And they've already agreed they wouldn't make him, imho there's no point as they can't say it's in his best interests if he can't be cured/guaranteed a reasonable length of time being well.

Hi @C152

My son had a medullablastoma. He was just before his 16th birthday when he was diagnosed.

He had emergency surgery but they were not able to remove all of his tumour. He and I spent 6 months in hospital whilst he recovered from the op and the effects of chemo and radiotherapy.

This was 10 years ago so I can't remember how many rounds of chemo he went through. But he was on the Milan treatment which I know has since been stopped as it was too hard for children to go through.

His tumour never completely went away. The chemo and radiotherapy kept it at bay for only a certain time. After the heavy rounds of chemo and gruelling radio after 6 months we managed to get him home.

My son had had to learn to sit up, walk, talk etc but he did eventually get back to school, 6th form for a little while. He went in for an hour here or there, or a morning if he could. Sometimes I took him in so he could have a coffee with his mates.

The maintenance chemo could not stop the tumour from growing and my son died aged 18. 2 and a half years after diagnosis.

I never wanted false hope from his consultants, I needed to hear facts as that's what I could cope with. But it was difficult for his consultant to say what his chances were. I think I always knew it was a battle that my son was never going to win. My son was incredibly intelligent and knew what was going on. He chose to fight it, chose to believe he was going to beat it so we were led by him in how we approached things.

He was a difficult age for accessing help outside of hospital - too old for paediatric services, too young for adult services. He had access to a children's hospice. He never went there to stay but they had a hydrotherapy pool that he could use with his wheelchair and help from me. He also had one of their volunteers who would visit him at home. He loved her and could probably talk to her about things he couldn't with me. I think what I'm saying is a children or adult hospice for that matter can offer services or access to things you might not know of and could help.

The problem with cancers, brain cancer in particular is that each child responds differently. There's no clear cut of ok we will try xyz as we know abc will happen and we can go from there.

It was, back then anyway, here's a list of awful options, pick one and. we will see what happens and then work through all the other options.

We weee led by him in how he tried to live. He just wanted to be normal so we tried to facilitate those things. He didn't want big gestures because he had cancer, he just wanted to go to school and be with his mates.

I seem to be rambling now and I'm nervous of posting as my son lost his life,

I wish you all love and strength in this fight. Follow your sons lead but listen to your gut instinct too.

Xxx

@Castlereagh I did in the end ask if the consultant would call me and was told "a request has been made". (I'm already a person they hate, as I constantly ask for the medical evidence that supports thair decisions and complain about the mistakes they make i.e. incorrect medication, double dosing etc). I didn't hear anything futher for over a week until we were in hospital for tests and the consultant came by briefly (for about 5mins). She didn't really answer my core questions, but at least did say that there would be no further chemo after the next round (which is both a relief, and not, if you see what I mean) and that metronomic chemo would not be suitable for him...but then she went on to say that low dose chemo is used to buy time, so I'm none the wiser as to future options. For now it seems like at least he will be left in relative peace, for a while, to heal as best he can.

Also just found out he didn't get a place at the rehab facility I was hoping he would get into. It's really gutting.

Hi @minmooch Thank you so much for your post. It must have been so hard to write.

I am so sorry. That you and your son had such a hard journey, and that he didn't get the long, happy life I am sure he deserved.

Your experience of 6 months in hospital, and such hard treatment, sounds horrendous. It is not quite so bad now, but the lack of options remains. It is still nothing but bad choices; well, in our case, only one bad 'choice'.

I think you are right, that we have to be lead by our children. My DS too just wants things to be back to normal. To go to school, to be able to run again and properly participate in sports day, to go swimming, to go on holiday. I keep a list in my head of all the things he says he wants to do and places he wants to go, so I can try to make it happen.

X

@c152 I've been wondering how you are and whether you got any answers or support from the hospital. I hope he has been able to do more rehab and been able to go back to school and see friends.

Hi @Castlereagh Thanks for checking in. I check these boards every so often to see if anyone else has posted on their own situation, but it's rare...I haven't updated, as I'm aware that all I do is complain about how bad things are...

No, I never did get any answers from the consultant or support from the hospital. We were at GOSH on Monday for a kidney test and were supposed to have a consultant meeting as well, but that was cancelled, as the consultant said she didn't have anything to say to us. Where does one start with that?! She did say we could still meet her if we wanted to, but I didn't see the point. I did want to ask questions (which I had told her in advance by email) but, as my son would have been in the meeting with us, I didn't feel it was appropriate. I wanted to ask how long he is likely to last before symptoms start getting worse, how long he'll have once they do start getting worse and what end of life pain relief would be provided. I can't ask any of that in front of him. I am at a loss as to what to do for the best. I don't want us to, yet again, be making life and death decisions 60 seconds before they start a procedure because they've failed to give us any information beforehand...but that's been their approach for nearly a year, so I can't see that changing, no matter how much I beg.

I want to ask my son what he would want to do if things get worse, but I can't ask him without having information to answer his likely questions, like what will second phase chemo be/how sick will it make him/will he have to have it in hospital etc. I also don't want to ruin any relief he may feel at chemo being over by suggesting he will get sick again. So right now, I just stay silent and hope that he doesn't relapse before our next consultant meeting at the end of the year.

In addition to the above, it has been a bad month. Since radiation, DS got a severe infection after every single round of chemo. I was really hoping he would make it through this last round without one, but he barely made it a week at home before being admitted to our local hospital with an infection. It's the same one he had last month (and I suspect every month since January) - a staph infection in his hickman line. The soonest GOSH can remove the line is October. The local hospital are reluctant to remove the line because they say it's the best way of treating him with antibiotics if he gets sick again...but if it's the line that keeps giving him the infection, surely that's just a self defeating approach? I've suggested that, to no avail. So he had a week in hospital, came home for two days before being readmitted with the same infection. After a week they discharged him again, with antibiotics to take at home which, so far, have kept things at bay. In between, he's obviously had to go back for the usual blood and platelet transfusions.

On the plus side, at least they agreed to stop giving him the G-CSF, as it was clear that any potential positive was being massively outweighed by the growing negatives. After a week of no G-CSF, his back pain has gone, but the bone pain in his legs (which he's had since last year) remains.

A big win was that he was able to go to school for the first day of Year 3 this week. He only stayed for the first two hours, and was completely exhausted by the end of that, but both he and I were really happy he went. I'm upset on his behalf that the school's approach to some things is having a negative impact on him, but I think they will improve with time.

It was sad for me to have to sit in a meeting with the school while they went through the risk assessment. They assumed that the issues I highlighted last year (balance, vision problems, memory and word finding issues etc) were "fixed" and DS was back to normal. It was very hard to say that no, those issues haven't gone away and that, for those who remember him before he got ill, he is not the same child, and they need to think of him as someone new they need to get to know. One benefit of the meeting was that I can see they are trying their best to help.

I find it astonishing how clueless schools are in terms of practical arrangements. I guess children having serious illnesses is still quite rare, so they're not trained in how to best help the child learn while they're too sick to attend and how to reintegrate them once they get a bit better. Just simple things like a safe place for me to put DS's wheelchair send them into a panic. When I asked the TA where I could leave DS's wheelchair while he was in class (which is now upstairs), she looked at it dubiously and said she didn't think she'd be able to carry something that heavy up and down the stairs every time he needed to go from the classroom to the lunch room/playground etc. I think she'd been told that she would have to do that, which I certainly would not expect or want her or any other teacher to do. It IS far to heavy to regularly be carrying up and down several flights of stairs. Surely that's just common sense? But I'm rambling now...as I said, I think they mean well, they just have no idea how to go about anything.

The rehab side of things is a bit of a bust. DS didn't get a place at the residential rehab centre he was referred to. We do have access to community physiotherapists, but one hour a week doesn't have the same impact that a 4 week period of intense rehab would have. So far he's been too ill to see the community physios, but hopefully he'll be stable enough to see them again soon.

How have things been with you and your family?

Oh god a lot of what you say really resonates. We also had trouble with school understanding the realities...they got obsessed with little things like getting changed for PE but made no adaptations when trying to teach a brain damaged newly deaf child a new foreign language...it's bloody good your son went in though, being with other small children is so important. Have they had the medical needs adviser in from the council?
I hope the line is out soon. He needs a rest from infection for his body to try and keep cancer in check. I find hospitals so rigid-this is just how it's done here and no thought for the individual child.

We did manage to get intensive outpatient rehab after CBIT got involved, but it's taken months fig muscle strength and appetite to return.
I can't even begin to address how badly your consultant is letting you down. They sound arrogant and they've forgotten they're dealing with human beings. I wish you could could change hospitals.

I'm finding news stories about crap/dangerous medics really triggering at the moment..the child who died at kings whose parents are campaigning for the right to a second opinion.
I wanted to recommend Rainbow Trust to you too, their support workers have been amazing for one of our new friends whose child's tumour is back. You can self refer too
Do keep complaining here, normal people want to think children with cancer are really well looked after so they don't want to hear it.

Sounds poor from GOSH. Can you email the questions and request a video call, so you can talk child free? That is what we do. You can’t wait til end of the year to ask those questions. I find that even when I email
questions the consultant prefers to answer by ohone/video and not in writing. Is good school are trying to help even if a bit clueless. Have you provided them the CCLG booklet for schools? Our school seemed to really like having something to read and try to explain rather than just listen to me. I was all
set to transfer to GOSH last year; am realising the grass is not always greener. Please keep
updating - I know I will be happy to listen to any venting or ramblings. https://www.cclg.org.uk/write/MediaUploads/Publications/PDFs/supporting-a-pupil-with-cancer-may-2023-web.pdf

Hi @Castlereagh and @ScaredOncologyMum

Yes, to the school being obessessed about little, frankly, inconsequential things when compared to the big stuff! I completely understand what you mean!

What is a medical needs advisor? I googled the term and our area, but nothing comes up.

DS did 2 x 2hr days of school last week, plus an afternoon play date. Really tired him out, but well worth if in terms of keeping his spirits up. He was going to go to school for a third day but, of course, he needed a platelet transfusion, which scuppered that plan.

I am on constant tenterhooks in case his infection comes roaring back before they finally take the bloody lines out.

Yes, I've found all 3 hospitals (Kings College Hosp, UCLH and GOSH) all do things differently from one another and all insist on their own ways because 'that's just how we do it here' rather than looking at what is best for the individual patient. On top of that is the long NHS waiting lists. That's why DS can't get his line out sooner than Oct, unless it becomes life threatening. He's had tooth pain for nearly a year, but the GOSH dentist is always "too booked up" to see him, yet they told me not to let our usual dentist do anything.

How many months would you say it took your child's appetite to come back? I think our main issue (other than just not in the mood to eat/stomach has shrunk/internal organs have all been damaged by radiation etc) is that although DS will say he is hungry, he doesn't know what he wants to eat. It's driving me mad!

I keep mentioning strength building to the physios, but they all say he is actually remarkably strong, given what he's been through. Perhaps I am phrasing it incorrectly? What's the right way to say it? Should I be saying I want him to build muscle mass? We've got a meeting with a different physio team next week.

@Castlereagh I know what you mean about the sudden flurry of news articles. Although I find them unbearable, I can't stop myself from reading each of the pieces about Martha's rule. Kings is our local hospital, and the parent's tale is horrendously familiar.

Thank you for recommending the Rainbow Trust. They got in contact 6 months after we were referred to them. What sort of support does your friend find helpful through them? Unfortuantely, I just didn't click with the Rainbow Trust support worker they sent out and she said she's only available 1-2 hours a month. I'm aware I sound really ungrateful, but what good is that to me? It's not even long enough for me to get the supermarket and back. And she herself said she's not fit enough to take DS to the park on her own, so I really can't see what value she would add.

Demelza have provided 6 x 1hr sessions with an art therapist, which I thought would benefit DS, because he really enjoys arty things. Unfortuantely, starting during treatment wasn't a good idea, as we haven't been able to see her regularly enough for them to develop any sort of rapport and again, he refuses to be left alone with her, so I can't even clean the kitchen when she's here; I have to sit in the same room.

I think I just have to wait until there's some sort of semi-routine with school.

@ScaredOncologyMum Thank you for the PDF. I gave the school something similar. It looks slightly different, but has the same content.

No, the grass certainly isn't greener. I used to wonder which of the 3 hospitals we get shunted between was worst and I never could come up with an answer. They all fail in their own unique ways.

Thank you both for listening. X

just to add, if you do get a routine going at school I would be very happy to meet up
face to face. King’s is our local too; appreciate it covers a wide area but who knows we might be properly local to each other. Have been on Rays ward at King’s and shudder at what the Mills family faced. Agree with @Castlereagh that noone outside this world would understand the state of it all.
re food it wasn’t a big issue here, salty food was favourite during treatment but appetite picked up once out of hospital. Also did a lot of walking - to the corner shop, to the pub (for a soft drink), to the park to gradually rebuild stamina. In a way that she didn’t necessarily realise that was what we were doing.

Medical needsthis is it, it's not just NI they should have a similar service in all local authorities SEND service. They came in and spoke to my child, observed in classroom and break then sent advice to SENCo about what they need to do. Have you tried CBIT for school stuff as well as physio? our worker was great but it might depend what area you live in.
I can't believe your rainbow trust worker won't take him to the park, my friend has someone playing with the siblings and takes one to football! She has loads of kids so thata what she felt was most helpful.
I really feel like you're being let down across the board which is horrendous given life has given you such a bad hand of cards at the moment.
Appetite has taken months and months to come back and even then tastes have changed, eating is very slow. I would say things improve after NG tube comes out, and then we had a bit of a plateau in weight gain, only recently (6 months in) are we seeing a child who doesn't look noticeably emaciated, just on the skinny side. We carried on not making them sit at the table for a good 5 months, and having distractions (TV etc) and basically eating whatever the hell you want!
As @ScaredOncologyMum said, keep posting it's good to share experiences even if they are shite.

My sons school was amazing. We went in before he returned to school to do a walk around. It was very apparent that a 500 year old school was not set up for a disabled student. The route from classes to the 6th form was not possible. The school put in a wheelchair friendly path to the 6th form and moved all his classes to downstairs rooms where possible. He was allowed to come and go as he felt able. I stayed on the school grounds when he was in because at 6 ft I was the only person I trusted helping him move from class to class. He often needed to leave a class before it ended. The school nurse became my best friend and she was always in hand if we needed.

His school could not have done more to help him try and be there as much as possible. They understood his need to be a normal student as possible for as long as possible.

It was incredibly hard but worth it for him. Some days we just went in so he could have a coffee at lunch/break with his friends.

I hope your son's school help him and you.

Min, so nice to hear your voice!
I just came on to say the same thing, that when our s hook has dc in a wheelchair and the classroom is upstairs, we switch classes. It’s the least we could do.

Hi @minmooch - glad to hear your son's school was so helpful! My son's school aren't so good on the disability side of things, but are being very flexible in terms of letting him come in on the days he feels up to it and taking everything on a day by day basis.