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.

Hello again everyone

A mixture of good and not so good in this update. Went for what should have been a relatively 'easy' hospital appointment last week - a kidney test and an ophthamology test. Wish the ophthamology team actually worked as oncologists, as they're the only ones who are always really caring; take the time to talk to all of us, including DS; make sure they have all the info to hand and actually do what they say they're going to in terms of follow up.

Anyway, DS has had episodes of vision loss, there is a thickening of some of the measurements in his eye and the images show a fuzziness that, altogether, suggests increased pressure on both optic nerves. The ophthamologist said she'd send the details to our consultant that day and she imagined someone would want to see us very soon. That evening I get a text from the CNS saying the consultant is aware of the increased pressure, but they're "just going to monitor"...from afar...without actually seeing DS or doing any tests or anything...So, that's incredibly worrying. What does it mean? Is the cancer spreading? Is he growing a new tumour? Will the increased pressure make him blind? Of course, no answers from the hospital.

Since I can't do anything about the above, I try to put it to the back of my mind. Onto the good things...DS got to tour the hospital lab, where they test all the blood. Two of the scientists that work there gave him (and me!) the tour and were as excited about it as we were. They showed us everything, let him send a message through the tube system that blood samples get sent in, had a blood sampling game (made of up different test tubes of coloured water) set up for him to try, gave him samples of animal blood to look at through a microscope, showed him how the 'dancing' machines separated out red blood cells from platelets and typed the blood etc and gave him his own lab coat and badge. He was so thrilled with it. Oh, and they gave him a demo of dry ice, which was just like magic to him!

This week he had both his hickman and PEG tubes removed. At long last!! And it all went well and he's recovering so fast. He was so ill for such a long time when they put them in, that I was expecting the worst having them taken out. But within 10min of waking up he was eating and chatting and wanting to play a game. The first thing he did when he work up was look under his gown to check the tubes were really gone and then he looked up with this massive, gleeful grin, punched the air with his fist and went "YES!!!!!"

How have things been for you all?

Ah the sheer joy of getting those lines out, he'll feel so much freer for it. That lab tour sounds fab, how did you get into it, my DC would love to have a look under the microscope! Our opthalmology team are less child friendly than yours but we don't have to go more than every 12 months I think. I don't understand why the oncologist isn't explaining more about the pressure, does he have a shunt in or anything? I'd be wondering should they be back on steroids? DC is doing ok here, bit sad about some of the side effects...I think even though we said the deafness etc was permanent, DC had some of that magical thinking that after a few months everything would be like it was before. We have to kind of grieve that loss again with him. I think it's harder for brain tumor patients as they see some cancer kids kids running around living normal lives with a really high chance of survival and treatment options if they relapse, whilst ours live with reduced quality of life, high chance of relapse and no more treatment options. Mine loves activities with other kids who've had cancer treatment but you can see makes a beeline for the osteosarcoma/ brain tumor kids!

So glad to hear your son got his peg and Hickman line out - what a huge milestone.

I'm sorry there is still so much uncertainty- this journey is so hard on everyone.

Glad the opthomology lab made it a fun experience for him. There are some extraordinary people you meet along the way.

@Castlereagh The CNS suggested and organised the lab tour (she's no good at what I consider the more important things, but I will grudingly give her credit for highlighting the few fun things available to kids in hospital). She also arranged for him to get his own hospital badge, with his photo and 'Dr [DS First Name]' printed on it, which he is very chuffed with.

I don't know how many kids take advantage of the lab tour, but they do seem set up for it, if you know what I mean. They had canvas bags that held a child size lab coat, a photocopied booklet of child-friendly blood related games inside (think cross word puzzles or blood typing games), colouring pens, a squeezy stress toy and a printed name badge (this one just on paper, like an office visitor's badge) with 'Scientist 'DS First Name'' on it. It was really well thought out and, like I said, i was most impressed that actual scientists gave up their time to show us around, and that they were so obviously delighted to be doing it. Neither of them once looked at the clock or looked like they were bored or wished they were doing something else. They took pleasure in explaining how every machine worked, stopped to look at everything DS wanted to and showed him how it worked and, if it was appropriate, let him try it out for himself. It's well worth asking your hospital contact if there is anything similar available.

Yes, DS does have a shunt in, but no one checks it, except for immediately after an MRI, to make sure the setting hasn't been changed by the MRI machine. I have been wondering if I should say i would like a second opinion on prognosis, as I really want answers in terms of how long DS is likely to be reasonably well. I don't know whether anyone else will be keen to give me that information if they haven't treated him, or how it will go down with his existing consultant. (I know the relationship doesn't seem like it can actually get any worse, but there's a little 'what if' voice cautioning me in the back of my head.)

I'm so sorry your DC is struggling with the side effects. It really is awful, isn't it? I think you're right about it being harder for brain tumour patients. And none of the medical professionals we've seen actually acknowledge that. How are you all coping with DC's hearing loss? Can they hear anything at all?

It would be nice if there were a 'how to' guide on all the crap you've got to navigate during and after treatment. Perhaps we should start some lists on Mumsnet?!

Thanks @minmooch . It is such a relief that both lines have come out. It does feel like a line has now been drawn. (Also, I can't believe how easy getting DS dressed and undressed is now - no worry about catching his lines on anything! And even he said last night he slept so much better because he could never sleep comfortably with the lines. He'd always roll on them or they'd catch on something and hurt him. And the hickman was on his preferred sleeping side, so he always had to sleep on the 'wrong' side and is very happy now that he can sleep whichever way he wants to!)

I'm hoping it's OK for me to comment, I don't have any experience with what you're all going through.

It's so very shocking how the consultants are treating you op. You deserve all the detailed explanations there are to be had, and acknowledgment that what you're going through as families is unbearably difficult and unjust.

I wish you every strength to keep going, and your darling children every happiness possible. I'm so sorry, and I'm sorry if my post sounds pathetic in comparison to what you're facing. Words are nowhere near enough.

@Vintagecreamandcottagepie Thank you for your good wishes; it's absolutely fine to comment on this thread, regardless of your personal experience. I actually wish more people would read it - maybe then they'd find it more difficult to 'clap for the NHS' or continue to defend it.

I’m so sorry to hear about your very difficult experiences. I work in healthcare and am aware that some colleagues can be very arrogant and self-important. We’re all busy but some are more “busy” than others. I doubt it’s personal, just lack of time and probably a mediocre emotional EQ. Even if you’re a “difficult” parent, it’s very understandable and they should know how to deal with it.
Ideally in these very busy and emotional scenarios there would be a specialist nurse liaison assigned to each seriously ill child whose job it would be sit with families after a consultation and go through everything in detail, and be available to take phone calls with worries or queries that they can follow up on the child’s behalf and get back to you. No funding for this I suppose. It’s a heartbreaking thing to have to go through and I’m very sorry it’s happening to you.

Thank you @Coughingdodger

Morning all,
@C152 Am still amazed at how crap your consultant is. I would email a list of questions, including about the eye pressure to consultant and copy the CNS in and say that you would like a video conference in the next week during school hours to discuss. I recently called the palliative team when I was getting no reply from CNS - they could not help but spoke directly to CNS who did then contact me. You could try the same?
Am glad the CNS is good for fun stuff at least. I thought of you last week as we went on the hospital trip to Disney. I am a cynic but have to say the trip was amazing and we got a lot from it. Would def recommend - not sure who decides who goes. We went with RMH but Kings and GOSH were there too.
@Castlereagh does your child have hearing aids? Mine has ‘moderate’ hearing loss and was recommended to have hearing aids but refuses. I don’t have the heart to force it given her prognosis but would be interested to know how others find them.
We have been waiting on test results on a biopsy. 3-4 weeks has turned into 9 weeks, with multiple appointments in that time, the anxious wait and stressing about what will be said at the appointment, only to log on and be told the results are not available! After 4 of those I asked for no more appointments to be made until
the results were available as the build up and then collapse after the ‘no news’ appointments was too much. So the appointment is next week, by video. That will be to determine what if anything is to be done. I am expecting some more scans, including brain, and then possibly immunotherapy. But will keep an open mind.
Stay strong everyone, and keep
in touch. @C152 😜

@C152 and others, please keep posting here, if it helps, I expect there are many of us who are rooting for you, and wishing the best for you all.

@C152 how to navigate the crap guide! I fear it would have to be multiple volumes. But writing it would certainly be cathartic.

Morning all

A great milestone last night - DS's first proper bath in a YEAR!!!! An enormously deep bubble bath full of bath toys and glow sticks. I just cannot describe how over the moon he was with it. As corny as it sounds, sometimes small things make such a huge difference.

@ScaredOncologyMum Oh no, I'm sorry you've had to wait so long for biopsy results. Why do they bother making appointments if they don't have the results yet?! To discuss the weather??? I hope you get results soon.

I'm glad the trip to Disney was good. Was it a Make A Wish trip? My DS wished for a trip to Lapland, so he could meet Santa, drive a snow mobile and play in real snow. It's booked in for early December. We can't wait!!

Hi @C152 no it was the taxi driver trip, children from GOSH, Kings, RMH, Royal London, Chase Farm and Birmingham. Amazing. Am about to have a ‘discussion’ with the GP about a prescription……. Will report back. Now have results and another appointment with the consultant to find out next steps.
Bathtime sounds brilliant, so glad he enjoyed it.

Back from the GP. They only received the letter about the prescription today. But I noticed an appointment in the GP app for 30 October. No text or call, just in app. Turns out that appointment is re a hospital letter from end of September to discuss referring her to community nurses to get a blood test in order to get the prescription we were discussing today. I have arranged the blood tests directly with the community team, they are done and reviewed by consultant. GP is just so slow. I ended up
in tears; miraculously the 30 October appointment has been switched to tomorrow. It is so exhausting dealing with all this. You just cannnot expect anything to be done quickly or correctly. And receptionist said no notification of the appointment in the app would have been given. So I need to add mind reader to my skill set. Rant over.

@ScaredOncologyMum it's things like that that make me cry too. We're so busy holding the big stuff that it's unbelievable that the small stuff should take so so much energy. We're waiting for scan results. If you know, you know.

@banabak i know only too well. I send all best wishes.
The receptionist said ‘oh now you are going to cry, I am trying to help you’ in quite a snarky way. I wanted to lay down and just weep in there. Came home and had a proper cry. They called with a cancellation just now. GP (a locum) was pleasant. I said I don’t have the energy to have to chase every single thing. I asked how I can make things better, he said to put my requests in writing. I would like it to not take a month to act on a hospital letter. I would like some sort of note on her file to make sure things are expedited. I would like them to give a sh*t.
Got a big appointment tomorrow, struggling today.

@ScaredOncologyMum That sort of rubbish would make me cry too. And don't get me started on pathetically inadequate human beings like that receptionist. I am so sorry it's all so fucking unnecessarily hard.

It's the unnecessary part of all this shit I find most annoying. How hard is it for all consultants and GPs to join the modern world and converse via email? Why on earth are they STILL sending IMPORTANT, TIME CRITICAL information via post, which has always been notoriously unreliable and is now beyond a joke? When/if they finally get the letter, why is it not brought to the GPs attention immediately? Why do they take so long to act on it? Why, as you say, do they expect us to be mind readers re appointments (GOSH, I'm looking at you). Why does the GP not know, by this point, that we (in our area, anyway) always arrange blood tests directly with the community nurse? Now I'm ranting on behalf of all of us. I am furious on behalf of all of us.

@banabak I hope you get the scan results soon. Sending you and @ScaredOncologyMum strength. X

Evening all. A mixed bag of news at the moment. Some is shockingly good and some is just...sad.

DS had his latest scan at the end of last month. As I hadn't been able to get hold of my mum on the phone for an unusual amount of time, DS's dad agreed to look after him after his scan, so I could go to my mum's house. Found her dead at home. (Natural, not a violent death, but still very difficult to see.) Called 999...and had to wait on hold before getting through to someone! If it weren't so bloody awful if would be comical. Do people in general know the shocking state this country is in? (What if I was calling because I was in the middle of being attacked? It's not like I can hold for the next operator while avoiding being stabbed to death, is it?!)

A paramedic actually came really quickly, but we then had to wait 5hrs for the first lot of police to come, then wait for a second pair to arrive, then wait for the seargent to arrive, then eventually for the coroner's body collection service to arrive. It was a long night. Must give credit to the paramedic and police who were all enormously kind and respectful.

On the good news front, DS's scan miraculously showed improvement. I don't understand how the scans can go from being literally 'no change' (or worse) to suddenly showing very few lesions. I was very tempted to ask if the consultant was looking at the right child's images, particularly as she wasn't prepared and took ages to actually bring the scan results up on screen. But I didn't ask, as I didn't want to tempt fate (I know that sounds crazy). The scan does still show a large mass at the site of his original tumour, and the consultant said it is impossible to say what it is without surgery, which they wouldn't do unless absolutely necessary. So, it could be his original tumour (I don't think it is this, as I believe the original surgeon who said she removed it all), it could be a new tumour or it could be scar tissue.

I asked about the swelling on his optic nerves...which she completely forgot about, so hasn't even thought about for the last 3 months, which is the main thing DS's dad and I have been worrying about. Luckily we have another opthamology appointment in January, so hopefully they can tell us something.

Something that has really upset both DS and me is that the radiation has already destroyed his thyroid. From what the consultant said, she was totally expecting this to happen (failed to mention this at the time), "but not this soon." So they want DS to take daily medication for this for the rest of his life. The side effects are long and pretty fucking appalling for anyone, let alone a child (e.g. debilitating, severe headaches; nausea; growth failure and hair loss in children). Does anyone have any experience with this? Did your child have side effects? What did they eat for breakfast every day? (Apparently you're supposed to take the medication on an empty stomach, not eat for 60min after taking it, and not eat dairy, fibre or anything containing vitamin D or A for 3-4hours after taking it...it seems to me that pretty much rules out all food groups which, again, isn't great for anyone, let alone a child.)

They also want him to take growth hormones, which I'm very against because they cause cancer cells to grow quicker. Why would I force him to have daily, deeply painful injections when he still has lesions and an unidentified growth in his brain?! Is it just me that thinks this is absolutely crazy?

So sorry to hear your sad news @C152 .Being on hold to 999 is a new low I haven’t heard of before. Were you able to go on your MAW trip?

I don’t have any info on thyroid drugs but do have an ex colleague who has thyroid issues so could ask? Or is there a nutritionist/ dietician at GOSH? Or the symptom support team?

i was about to post to say to everyone on this board well done you got through the year, no one knows how hard this is except us and we all deserve a massive hug x

Got my own story to tell but will get on my own thread for that.

Again, sorry to hear about your Mum x

Can you find a private oncologist online and get a second opinion? There are quite a few online and a friends husband is a great consultant in another area and does private consultancies as an aside from his main nhs activities. So there are good ones out there. I think it’s around £2-300 for an initial consultantion.

Also can you ask the school to have a dedicated key person nominated to deal with any issues like wheelchair. As that could take some of the managing off of you and if one teacher had a query they could liaise with the school key worker.

Oh my just read your latest. That is traumatic and so sad. Hugs for you! Don’t know what else to offer but take care of yourself.

@ScaredOncologyMum Thank you. Yes, please, I would be really grateful if you could ask your ex colleague about their experience. No, GOSH are useless. Consultant told me to google the answers myself. (Which I have been doing, but like I said, there are simply so many potential side effects, I want to know what people experience most often so we can be prepared.)

What is the drug called please? And have you been referred to endocrinology- I think they do thyroids? Ours is good she does by phone so not an extra trip.