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Original poster

Out of my mind with worry part 2

374 replies

YourRubyMaker · 07/03/2025 14:51

for anyone who was on the original thread sorry it’s been a hectic few days . Intensive care was horrific he kept trying to wake up and pull his ventilator out his bp was unreal so they kept having to sedate him ,. Managed to get back onto the ward on Tuesday, weds a blur but yesterday was really positive he got his own wheelchair and managed some light physio,. Today we’ll back to shit really we had planned to leave the ward for the first time and have dinner in the onsite canteen he’s since been sick and his heads swollen,. Waiting to see if he’s gonna get an emergency scan or not , just feel like it’s a rollercoaster and as soon as you think you’re getting somewhere you don’t . Still waiting on biopsy results which won’t be until next week , toddler is so unsettled won’t leave dh alone which is making life really hard as I can’t leave ds but need to go do washing etc , it’s a nightmare

OP posts:
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LondonMummer · 12/03/2025 10:14

I never comment on these type of threads but this is the most wonderful update. When you've stared into the void and come back from it you know that however challenging the future is you will cope. Along with everyone else I'm thrilled for you. So wonderful to be home. Hospital are not a fun place to be.

AnneShirleysNewDress · 12/03/2025 10:15

Amazing update OP. I'm so pleased you are all home and your boy is doing well.

You did so well in getting him and seen when you did. I'm genuinely so pleased for you all.

Original poster
YourRubyMaker · 12/03/2025 10:17

The discharge notes are a hard read aswell , it was at the size of a large peach !! Which in a child’s head is crazy . The consultants were amazed he didn’t have much more severe symptoms it was also caught just in the nick of time as from getting there to waiting the 3 days to surgery he really went down hill ,. It’s a miracle and honestly the bloody surgeons are hero’s , he was at Oxford John Radcliffe and he had all the 4 of the kids neuro surgeons do his op they literally cancelled every single operation for the day just to do his and said it was very complicated ,thinking about it is absolutely crazy and I can’t process it really but I’m so grateful they are amazing at that hospital and really do know what they’re doing when it comes to neuro surgery , I can’t thank them enough

OP posts:
lemondropsandchimneytops · 12/03/2025 10:18

The biopsy results are fantastic news OP! That must be such a relief although I understand this will have a lifelong impact for your boy. You fought hard for him when you didn't know what was going on, but now you do know (some of it at least) and that puts you all in a stronger position to monitor things in future. It sounds like he has a long recovery ahead of him this time and I wish him well in that. You're an amazing mother.

turkeyboots · 12/03/2025 10:18

I'm so glad you are all home.

It will take a while for you all to proccess the whole experience. So seek out any help you can get for all of you. Is there a psychology team who can work with your DS? And any help you can get to support you and your DH will help you keep going for the long haul ahead.

blackpear · 12/03/2025 10:19

Oh, OP - you're home and it's benign - that's wonderful!
It does still sound very tough, though, so do try to take care of yourself. God - you've been through it and it will take some time for you to recover as well as your lovely boy xxx

Truetoself · 12/03/2025 10:19

Amazing news. In addition to the brain cancer charities mentioned above also try social services to see what support you can get and also occupational therapy

Somuchgoo · 12/03/2025 10:20

Ok, that's AMAZING!!!

  1. Fab news on it being low grade, but you're right that it's still shit. It's a weird world of continuous watch and wait and really stressful, but still the better option. It's more life changing than life ending, which is horrible but yeah... I get you.

  2. being home so quickly is also amazing. It might not seem like it but that's meant hes had a relatively smooth recovery from surgery and hopefully things will be easier. It took us 2 months to get to where you are now with a similar tumour.

  3. the swelling sounds like a pseudomeningicle which is what my daughter had problems with (and what kept us in for weeks). Mild ones are really normal and they wouldn't let you home if it was a problem.

  4. home is SO MUCH WORK! Lots of things to sort, agencies to contact, different hospital departments. It's crazy. It will calm down eventually, take it day by day. The silver lining is that you will probably get a gold star service from professionals now. Referrals (usually) happen quicker, you're fast tracked and you're 'in the system'.

  5. Recovery will take ages. The fact that he's home so quickly means he's doing really well, but don't be surprised if recovery takes yonks. It won't be weeks, but months, possibly years. Everyone is different.

If it's a pilocytic astrocytoma there's a couple of FB groups that you may find useful if you want to talk/get support, especially with the scanziety.

Flabuary · 12/03/2025 10:20

well, here I am crying for a stranger on the internet.
I’ve been following your journey from the start, and have thought of you often.
your latest update is wonderful. So happy you’re all home. Just goes to show, that mums know best. Lots of love OP xx

MuchuseasaChocolateTeapot · 12/03/2025 10:21

I’m so pleased for your amazing news. Please get some help, brain charities and any counselling offered, I think you should all be monitored for PTSD symptoms after the last couple of weeks. Also ask for any physio available for your poor boy. God bless x

Esperanza25 · 12/03/2025 10:23

Oh OP, I'm so pleased for you all, I know it's not the end of the journey at all, but it's such good news that all the signs are that it's benign and just wonderful that you're home. Your son has done fantastically well. Your toddler will settle as well, especially now you are home.
I'd look at counselling too after what you've been through. You should feel very proud of yourself, you've been amazing.

Mrsuniquename · 12/03/2025 10:23

Thank goodness it's benign and lovely that you are home. With advancements in technology I would hope that it won't be a forever struggle. I am sure a treatment will come along that will mean they can zap it for good one day. Sending you lots of love. You are a strong, amazing lady, don't forget that!

lukelovesu · 12/03/2025 10:23

Absolutely amazing to hear it is benign and that he is home now. That is wonderful news. The recovery and adjusting take time, but you sound like a strong family. I hope you will have lots of support from friends, family and schools too. Wishing you all the very best xxx

rainbowstardrops · 12/03/2025 10:24

Fantastic news! I'm so glad you've had positive news and you're all home now. Maybe DH should contact his GP about getting signed off for a bit, just to give you all time to process it together?

Commonsense22 · 12/03/2025 10:26

Great news OP - a long road ahead but this is a lovely update.

Original poster
YourRubyMaker · 12/03/2025 10:27

Somuchgoo · 12/03/2025 10:20

Ok, that's AMAZING!!!

  1. Fab news on it being low grade, but you're right that it's still shit. It's a weird world of continuous watch and wait and really stressful, but still the better option. It's more life changing than life ending, which is horrible but yeah... I get you.

  2. being home so quickly is also amazing. It might not seem like it but that's meant hes had a relatively smooth recovery from surgery and hopefully things will be easier. It took us 2 months to get to where you are now with a similar tumour.

  3. the swelling sounds like a pseudomeningicle which is what my daughter had problems with (and what kept us in for weeks). Mild ones are really normal and they wouldn't let you home if it was a problem.

  4. home is SO MUCH WORK! Lots of things to sort, agencies to contact, different hospital departments. It's crazy. It will calm down eventually, take it day by day. The silver lining is that you will probably get a gold star service from professionals now. Referrals (usually) happen quicker, you're fast tracked and you're 'in the system'.

  5. Recovery will take ages. The fact that he's home so quickly means he's doing really well, but don't be surprised if recovery takes yonks. It won't be weeks, but months, possibly years. Everyone is different.

If it's a pilocytic astrocytoma there's a couple of FB groups that you may find useful if you want to talk/get support, especially with the scanziety.

Thank you for this . Yes they all were really surprised at how well his recovery has been minus the swelling which yes is that what you’ve said I just need to keep monitoring in but there hopeful it will resolve itself , it’s hard to just focus on the now sometimes isn’t it I’ve got so many questions even just silly things like will he still be able to go to theme parks , go swimming days out etc and it know it’s all trivial but it’s just so unknown atm my head is all over the place , I actually still don’t know the technical term of what kind of tumour it is , im seeing the consultant in 6 weeks so I’m going to write down lots of questions to ask then , I also have no idea how they will decide to treat it when the fucker starts growing again but I think that’s what there gonna be testing the biopsy now for and hopefully in a few years medicine will have improved more ,

OP posts:
Original poster
YourRubyMaker · 12/03/2025 10:29

Somuchgoo · 12/03/2025 10:20

Ok, that's AMAZING!!!

  1. Fab news on it being low grade, but you're right that it's still shit. It's a weird world of continuous watch and wait and really stressful, but still the better option. It's more life changing than life ending, which is horrible but yeah... I get you.

  2. being home so quickly is also amazing. It might not seem like it but that's meant hes had a relatively smooth recovery from surgery and hopefully things will be easier. It took us 2 months to get to where you are now with a similar tumour.

  3. the swelling sounds like a pseudomeningicle which is what my daughter had problems with (and what kept us in for weeks). Mild ones are really normal and they wouldn't let you home if it was a problem.

  4. home is SO MUCH WORK! Lots of things to sort, agencies to contact, different hospital departments. It's crazy. It will calm down eventually, take it day by day. The silver lining is that you will probably get a gold star service from professionals now. Referrals (usually) happen quicker, you're fast tracked and you're 'in the system'.

  5. Recovery will take ages. The fact that he's home so quickly means he's doing really well, but don't be surprised if recovery takes yonks. It won't be weeks, but months, possibly years. Everyone is different.

If it's a pilocytic astrocytoma there's a couple of FB groups that you may find useful if you want to talk/get support, especially with the scanziety.

Also how long was your child off of school for ? If you don’t mind me asking , I know it’s a how long is a peace of string question as it all depends just wondering

OP posts:
crumblingschools · 12/03/2025 10:30

So glad you are home. Take all offers of help so you can concentrate on your family and your own well-being.

spiderlight · 12/03/2025 10:35

So glad he's home, and that it was benign. It must be a hell of a lot to process, though. Your head will be spinning for a long time. I hope you have good people around to support you all.

Nottogetapenny · 12/03/2025 10:43

Thank you for your up date. Really good news, that you are home and the tumour was benign. Wishing you best wishes and strength that your son will just get better and better. 🌈🌺X

Somuchgoo · 12/03/2025 10:44

YourRubyMaker · 12/03/2025 10:29

Also how long was your child off of school for ? If you don’t mind me asking , I know it’s a how long is a peace of string question as it all depends just wondering

Show quote history

She was 2.5 so a bit different (large egg size - just HOW?) She went back v part time to a childminder after 4-5 months, but she still had a feeding tube in so things were a bit complicated. Then childcare eventually fell through (unrelated) and we had a few months without. She still has fatigue issues though and 3 years on is in school 5 days a week, but doing half days. But some kids are back full time after a couple of months. Brains are really weird!

She goes to theme parks, gentle rides at first (but she was a toddler), but does roller coasters etc now. We've been told no rugby or martial arts.

It's really hard to get your head round things. I am SO paranoid about her health and it feels like living from scan to scan. Hers was stable and we'd gone to a yearly scan. We went abroad, it was awesome. Now it's grown again, back to 6 monthly and deliberately not making plans we can't cancel for the future.

The brain tumour charity does 'little brainy boxes' for kids that have a few treats in them and have loads of info for you. They are totally free and you order it via their website.

OlderGlaswegianLivingInDevon · 12/03/2025 10:51

You and your son are home - that is fantastic !
there is nothing like sleeping in your own beds !!!

Original poster
YourRubyMaker · 12/03/2025 10:53

Somuchgoo · 12/03/2025 10:44

She was 2.5 so a bit different (large egg size - just HOW?) She went back v part time to a childminder after 4-5 months, but she still had a feeding tube in so things were a bit complicated. Then childcare eventually fell through (unrelated) and we had a few months without. She still has fatigue issues though and 3 years on is in school 5 days a week, but doing half days. But some kids are back full time after a couple of months. Brains are really weird!

She goes to theme parks, gentle rides at first (but she was a toddler), but does roller coasters etc now. We've been told no rugby or martial arts.

It's really hard to get your head round things. I am SO paranoid about her health and it feels like living from scan to scan. Hers was stable and we'd gone to a yearly scan. We went abroad, it was awesome. Now it's grown again, back to 6 monthly and deliberately not making plans we can't cancel for the future.

The brain tumour charity does 'little brainy boxes' for kids that have a few treats in them and have loads of info for you. They are totally free and you order it via their website.

Show quote history

Thank you so much for this information and I really wish you and your family all the best in this crazy new normal we now live in

OP posts:
PeppyPanda · 12/03/2025 10:57

I am in awe of your strength OP - have been thinking of you. Will be a new normal to get used to but so glad you’re home. Find all the support that is out there and lean in as much as you can xx

OlderGlaswegianLivingInDevon · 12/03/2025 10:57

One day when you have time, I would write to the original Doctor and inform him / her of the outcome.
'doctor was useless and made me do it as two separate issues and make another appointment!!! ' - taken from your original post on your first thread.

i would also write similar to whoever is in charge of the practice you use and that Doctor works in / for.