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[banabak]

Starting this thread in case anyone wants to chat. It's a few years down the road since my child's diagnosis, but I remember the first 6 months as if they were yesterday. It's the long haul for my child with a brain tumour that will go through periods of growth/progression

Thanks for this :-)

I actually suggested creating a board for kids with serious illnesses etc a few months after diagnosis, for the same reason, but it didn't get enough support.

I'm not even sure this board is technically for
me or not, so apologies if I'm not.

My 3yo was diagnosed just over a year ago with a brain tumour. Its a grade 1, so low grade, officially 'non cancerous' which obviously means we've been very lucky, and the long term outlook is v good.

Its basically Schroeder's cancer, because we are simultaneously (by some dr's) that is not cancer, others that it is, we are under oncology care, are kept a very close eye on, and the treatments are the same as for a higher grade. She's a year out of neurosurgery for a partial (90%) recission, things are tough in some ways, but I'm under no illusions that things could be a lot worse.

We are definitely in this for the long haul, and that's so difficult. It feels like every gain towards normality is tinged with the worry that the next scan will propel us back to the start (or worse).

Thanks for setting this up.
How's your little one now?

Thanks for suggesting the topic, it's very much needed. I used to look sometimes on the children's health topic and wondered about posting, but it didn't seem to fit with the worries about tonsillitis etc (no judgement, just walking a very different health pass for my dc). Similar situation for my dc as yours, the tumour is a grade 1 pilocytic astrocytoma but it hasn't behaved like a grade 1 unfortunately. After several very very tough years, my dc is doing well.

Great to see you posting, and glad your child is doing well @banabak. My child has a grade 4 brain tumour. We've met a few children with grade 1 and 2 tumours which whilst less immediately life threatening have just as devastating side effects and sometimes need the same treatment. Is there a point at which you guys can be confident it won't grow back? E.g. once the child is an adult? Sorry to be so blunt but I've got used to saying really terrible things straight out 😭

I completely get the bluntness, and same with me. I feel similarly now in medical appointments, I would prefer being told straight rather than vague assurances not based on fact. So sorry you're in this same (but different) boat. There are a few factors in the mutations driving the tumour which means we'll be very lucky to get to adulthood. But, you never know, and today my dc is well. The inhibitors that have been developed including the current Day101 trials aren't available for my dc. I'm following the adult oncology developments carefully as this is where the research and fingers crossed, future clinical trials could be helpful. Has your dc finished treatment? Did they have both radiotherapy and chemotherapy?

Oh no I'm sorry to hear that. There's so much around the biomarkers that they're still finding out isn't there. I think that's why the cure rate is lagging behind other cancers, two tumours of the same general type seem to behave completely differently. With my DC's tumour they've done surgery radiotherapy and chemotherapy, thrown everything at it and in some kids that works, some it doesn't and they don't really know why 🙄. So it's a waiting game, lots come back in the first 2 years, some in the first 5 years, and a rare few after 5 years. It's bloody annoying how few options there are. I hope something comes up in the adult oncology for your DC. Are they managing school and hobbies etc.?

I wrote a long reply at the time, then lost it and forgot to come back!

My daughter's is a pilocytic astrocytoma too, I guess we'll see in time how it behaves. Her first post operative scan was stable, so it would be nice to have some peace for a while, but I dare not hope . I know too many kids with the same tumour (including yours) where it hasn't been as non aggressive as it's claimed.

My daughter's original diagnosis and recovery left us a bit shellshocked tbh. It was enough of a risk that she had her craniotomy within 18 hours of diagnosis, after being blue lighted to a more major hospital. Then she had complication after complication, approx 15 csf leaks, several burst pseduomeningicle's, further surgeries to try to stop the leaking, and finally surgery for a shunt which was literally aborted mid surgery because of meningitis. She spent nearly 2 months in hospital. Then 3 lots of c diff, 7 months with an NG tube etc. She had to learn to walk again, and is going to have some mobility issues for life, fatigue, issues with weight gain, emotional regulation etc.

Obviously I'd much rather it was a G1 than a G4, but it's still, crikey its a lot to deal with. I'm as worried about future treatment as the tumour. She's so fragile (has been hospitalised by colds, the flu, norovirus etc) that I don't think she'd cope that well with chemo and surgery kept repeatedly nearly killing her 🫤

@banabak I'm sorry to hear what a hard situation you guys are in. So much for this tumour being 'benign' eh 😢

Sorry to be so blunt but I've got used to saying really terrible things straight out 😭

I know what you mean. I think you start to become blunted to it all.

I think some people find my bluntness when discussing my own daughter's tumour quite disconcerting, but its our every day reality so we are used to it I think.

@Somuchtogo that's very similar to my child's experience too. The first six months following diagnosis were catastrophic, we were completely institutionalised by the end of it. Any other visitors to Lion Ward here?

@castlereagh my dc's oncologist saying that they don't understand yet why some children have regrowth and others don't. My dc's tumour is supposed to be slow growing but they had rapid regrowth following surgery.

I really struggled following diagnosis because of all the complications and emergencies that followed. I got to a stage where I found any contact with the doctors terrifying as I couldn't bear more and more bad news.

Different wars, but totally institutionalised.

I finally left the hospital to pop to the supermarket, after 3w - and was called back to her beside because she was being taken back into surgery, within an hour. I didn't leave again for another month.

Leaving hospital was terrifying because of the level of nursing care she'd been having for so long.

Even now I feel guilty as I feel I broke my child. She went in with low level (but gaining pace) symptoms, and left barely able to walk. I know it was essential, and the Dr told me straight that it was operate or die, and the fact that pre surgery, hospital transfer was blue lighted, shows me how immediately life threatening it was. But I still feel like I broke her.

Ward, not wars, though seems appropriate still.

@banabak I feel the same about any of DCs medical appointments to be honest, I hate even the minor ones like endicrinology, like I'm bracing myself every time we go.
@Somuchgoo that sounds horrendous, that's one of the worst post op experiences I've heard, poor little thing. I expect your DC has had enough of hospitals too. Chemo was an absolute nightmare, it was all so old fashioned with in patient stays, massive delays, no visitors, very little interaction or play. A real contrast to the neuro ward and to relatives with adult chemo who go in as day patients. It all needs to change but I've no energy to campaign...I really admire the mum's who start doing marathons etc.!

So glad you all posted to chat; but I am so sorry you're all going through this as well. :-(

My DS was diagnosed with a medulloblastoma last Oct. It's been an absolutely shitshow since then. @Castlereagh I too, have to brace myself before each appointment, because I know, without a doubt, they'll find a way to fuck up the most straight forward thing and then be surprised I am angry about it. I feel I am the only advocate for my child and it is lonely and exhausting.

Hi @C152 I'm sorry to hear you've had a bad time with the appointments too, are you still in the middle of chemo? I do think it was more difficult to find the support from other parents at chemo because different people were there each time, it wasn't till near the end that I found some familiar faces. How is your DC doing now?

@somuchtogo how are you all doing now? That sounds horrendous and terrifying that you'd nipped out for less than an hour. I don't know where the hospital bag is atm, which just shows me how much our lives have changed for the better over the last year since end of chemo. I look back now jn shock at how much my dc endured. I just wish so much that it could be a bad period in the past that we could get over rather than the worry that we don't even know what bad days truly look like, and the true bad days could be waiting to emerge at any time.

@C152 it's a real shock how absolutely on it you have to be during treatment. We didn't know any other parents or kids during treatment and it felt very isolating. It was during the pandemic and the treatment rooms were empty and when my dc was in hospital, we weren't even allowed in the communal kitchen. Sorry you've had so many f ups. Even my dc has learned to ask nurses/doctors to wash their hands when accessing her port if they touched something non-sterile! Managing relationships with medics isn't something I imagined being a thing.

I'm getting generally more positive at the moment, though we've got a scan in 3ish weeks, so the anxiety over that is starting to build. I must be feeling more chilled though as I ate my frozen 'for hospital' lasagne last week and haven't made another yet 😂

She's generally doing pretty well, but had huge fluctuations in fatigue. Some days she's pretty great, but others less so - she ran around the garden a LOT yesterday, but was carried round the garden in a sling at Easter because she didn't have the energy for the egg hunt. They are all small things in the grand scheme of things. We've delayed her starting school for a year so she hopefully gets the stamina to manage a full day and physically manage the 10m walk etc.

Looking back, I don't know how we got through - I'm sure it's the same for all of us, you just do what needs to be done, and only later you look back and go 'wtf'.

I know what you mean about having to be really on it. You know you have to have a continuing relationship with these professionals and actually like them, but yes I'm still going to point out that you've forgotten x or left y valve open/shut etc (we had 3 weeks on lumbar drains and had a lot of this), because my daughter's life is more important than you liking me...

If it was a horrible accident, and once they are healed, they could get on with their lives, that's manageable, but it's the fear of it all starting back up again I guess. It's when people say 'she's doing really well isn't she' and you respond 'yes' but all you see is how much she's got to lose again when it all kicks off again. I think because hospital was so horrendous, and she's had so many (non brain) complications since being home, it's hard to truly get hope that things are better, and will be better, rather than bracing for the next thing. And that's with a tumor that 'should' be easy to control.

It's a lonely world. It's nice chatting to other mums, like here, whose children have gone through similar, but every kid's tumour seems so individual. It's like the rule books for parenting (as much as they exist) have been ripped up, and we are all just muddling through this, how we deal with their emotions, siblings etc. Should I be firm on x behaviour because it's 3yo behaviour, or not because it's brain etc. Urgh.

@Somuchgoo, it's been over 3 years since the first surgery and my dc is still gaining strength, stamina and energy. I think c-diff and septic shock took a long time to get over in themselves, as well as the culmination of other neurosurgery complications, shunt, shunt blockages etc at the same time. Does your child have PFS to deal with too? The emotional (due)regulation, learning to walk etc sound very similar to my dc. I know exactly what you mean about how difficult it is to parent. It's not a normal experience, and I parent completely differently to pre-diagnosis. It's not through choice, the trauma, the fear, the complications mean that my dc needs an extremely gentle parenting style now. My dc said to me this evening that we're very relaxed parents and wondered if this was because of having a brain tumour and being through really hard times compared to friends.
Fingers crossed for your dd's next scan results.

I'm not sure about PFS. She certainly didn't have a full blown version, but I wonder if it's possible to have it mildly. I don't know.

Her meltdowns aren't as bad as they once were, but some of that is probably that we are better at managing her activity levels to manage fatigue. She ended up being checked out by the hospital for one as she'd screamed for 4 hours, whilst holding her head and shouting that it was too loud.

She thankfully doesn't have a shunt, so we don't have that to contend with. Though they did start to put one in, because they had to stop due to meningitis, the surgery never completed. Seemingly the meningitis made everything 'sticky' inside, which solved the leakage issues and it was no longer needed. I'll take it as a rare silver lining.

Gentle parenting due to the trauma is I think where we are headed too.

Maybe the c diff has more of an effect on energy than is realised. I'd assumed it was all brain, so that's really interesting (though sad) that you've found similar.

Thanks for the crossed fingers. When is your DC's next scan due?

Hi @Castlereagh

Yes, we're still in the middle of chemo. I look back at the diagnosis point and remember thinking that the biggest thing I would ever worry about was whether my DS would live through the brain surgery to remove his tumour. [Insert grim laughter here.] But every day seems more traumatic than the last. He survived the surgery, but within 12 hours had lost his fine motor skills, so couldn't feed himself or point to things etc. (He was 6 at this point.)

When I pointed this out to the surgeon (who said he was recovering well!) she said, "well at least he can still talk" and then left the room without any sort of guidance on whether he could/would relearn these skills, what the time frame would be etc. That's the sort of attitude that really annoys the shit out of me. Yes, there's always someone worse off, but don't use that as an excuse to dismiss my concerns and questions about my own DS. It was absolutely heart breaking to watch him try and after a while, just give up. He took a long time to recover from that first surgery and the trauma of the hideous care at Kings. (No pain relief after brain surgery! He was screaming and rocking in pack!) He spent two weeks in hospital, had to learn to walk again (which I taught him - fuck all input from the physios); re-learn what he could of basic fine motor skills; was so depressed etc. There are no words to describe how awful it was.

He never recovered from the trauma then inflicted at UCLH and the stress caused the pressure in his brain to rise, requiring more surgery at King and programmable shunt was put in. The surgeon was practically busting with pride when she told us it was the newest one that locked in place, so the setting wouldn't change accidentally, it was fully compatible with MRI machines, blah blah blah. Well what a crock that was. Yeah, it's not ripped out of his skull during an MRI, but it does change the setting, which is hideously painful. (I now insist it's done under a GA.)

So, then he had 2 rounds of chemo at GOSH (was able to do the second lot as an day patient, so we coud go home every night, which was best); 6 weeks radiotherapy at UCLH and now we're back to chemo at GOSH.

I've realised that's a very long rant in answer to your straight forward question. There's just no one else to tell this stuff to. Unless you've had this sort of thing happen, you've simply no idea how bad hospitals and options are.

@banabak Yes, we've been on Lion and Elephant wards.

We've waiting 6 weeks on tenterhooks for the post radiotherapy MRI, to see what impact it's had. DS is so traumatised that any visit to hospital (even a day visit) ramps up physical and mental symptoms.

He had his MRI, but (1) they failed to call neuro to check/adjust his shunt while he was still under, even though I reminded the anaesthatist, the ward sister reminded him and she wrote it in block capitals on the consent form, which he read out to me just before they put DS under; and (2) they took different sized images which are impossible to compare to the last lot, so the whole thing was a total waste of time which traumatised all of us for no reason.

And no one EVER apologises for these constant fuck ups!

I asked his consultant why they didn't take scans that were comparable to last time, as surely that's the whole point. She said she didn't know. I asked could she write an instruction to the MRI team (since she's the one who books the MRIs) about what size slices to take for images in the future and she said she can try, but there's no guarantee they'll follow her instructions, that they do things their own way!

Oh my gosh @c152 your boy has really been through it. I was also horrified at the lack of pain relief- he was in agony with his neck and staff were so dismissive, saying it's normal cos his head feels heavy. I much later found out he had the top part of his spine removed (quote: sometimes they put it back, sometimes they don't ) and that's why it would have been so painful.

MRI staff are very very variable aren't they- I've never heard of them taking the wrong size bloody pictures though. Why worries me is that these are supposed to be our flagship hospitals and children's cancer should be the best service you can get. Not sure if I'm paranoid but I really feel like children's brain tumour patients are not a priority for anyone.

My DC also hates hospitals and used to dread going in, making themselves feel more sick..so it was not helpful turning up for chemo then being told there's no bed come back tomorrow. DC is now more able to cope I think because chemo is ended. If DC relapses there is no way they will accept more chemo so this is our only shot anyway! Hope your MRI shows stable or NED or whatever they use to mean no growth or regrowth where you are.

Thanks for replying @Castlereagh I can't believe they didn't tell you straight away they removed part of your child's spine! That's horrific! And they didn't give them any pain relief! Children's cancer care is nothing short of barbaric. I'm so sorry you all went through that.

Yes, it is very disturbing that this is the care you get at a flagship hospital...how bad is it elsewhere if this is the best they can muster up?!

Me. Spent a long time on Lion at KCH…

Sorry to hear that @ScaredOncologyMum. Are things more stable now? I wish it were a past event we could talk about rather than a dark cloud that comes with us.

Thanks- I just started the terminal
support group thread so things not good for us. A few kind hearted people have posted but I want to try and get a community together like in the adult pages of support from people who understand this nightmare. Spent 6 weeks in Lion in lockdown. Had a panic attack a year later when went back there for a night. Been to Rays and T&G and weeks on end at RMH. Happy to assist newbies here too, been doing this 2.5 years. Chemo, surgery, RT. I feel
like I am in a bubble and this isn’t really my life. I was so happy to see your thread as had given up on MN for this aspect of my life. Thanks