Out of my mind with worry part 2

[YourRubyMaker]

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

So hoping it’s good news today. Thinking of you and your family x

Thinking of you all today.

Been thinking of you today ❤️

With regards to your hols, when Jack was diagnosed in the June, DH and I had a holiday booked for the August. Hospital gave us a letter for our insurers to say that Jack was too poorly to be left alone, plus he had to go for radiotherapy every day. Apart from £140 excess we got all of our money back. Just keep pushing and don’t take no for an answer x

Thinking of you OP xx

@YourRubyMaker in really hoping for some positive news for your son today and that his swelling is starting to reduce the poor pet xx

Thinking of you both, OP xx

Hope you’re doing as well as you can be x

I still am hoping for positive news for you x

Thinking of you and your family and keeping everything crossed for some better news. Big hugs x

You’ve been such a brilliant advocate for your child, well done you for pushing for a quicker scan.
I’m so sorry that it was bad news for the diagnosis but it sounds like your son is a warrior coming out of such a huge surgery.
I have everything crossed for positive news and keeping you in my thoughts x

fingers crossed he’s improving again today x

Thinking of you and your son. I really things are improving today x

Just another stranger who's thinking about you all and hoping and wondering and hoping. Always on my mind. Sending love

Silent reader but I have been stalking this thread for updates. Thinking of you all, you have been in my prayers every night. I hope your wonderful son is improving and I’m wishing you all the strength possible x

Woke and thought of you this morning, as I’m sure so many of us are ❤️

I am another who hasn't commented but has been here the whole time wishing and hoping for the best. Thinking of you and hoping everything is going as well as it can be x

Just checking in to give your hand a squeeze. I hope the swelling is settling now.

We’re home to recover ! Thank god , swelling fluctuates massively throughout the day but they’ve said it’s basically brain fluid but as long as it’s soft that’s ok and should sort itself out in a month , we’ve got lots of physio to do ourselves at home as he basically needs to learn to walk again, it’s extremely hard at home because the toddler is being an absolute nightmare and me and dh are still in a state of shock tbh but think we will just need to adjust to this being the new normal , biopsy is partially back and shows it’s benign which if course is amazing but it also means it will grow again and come back so this is going to be a forever struggle 😞 the team are hopeful he won’t need treatment or another op for at least a couple of years , it’s amazing cos this is what we prayed for but it’s also extremely difficult as it’s not like it’s just done now it will never ever end , he’s got lots of follow up appointments as we think it has affected certain things and will need mri every 3 months forever

Was not expecting to be home so that in itself was a shock to the system , he’s been absolutely amazing and is definitely the strongest of us all , really not sure how dh is going to cope with work next week and I don’t know how il cope with him not being here but I suppose this is the new normal and we will need to adjust , we both could probably do with some kind of counselling or therapy tbh as it’s all happens in less than 2 weeks and it honestly is unimaginable, I want to thank all of you so much , if there’s anyone out there that’s been through similar I would love to speak to you and know how this journey will go

You’ve just made my day OP.

Brain tumour support and the brain tumour charity, they can offer support and help.

So glad he is doing well, can't imagine what you are going through

Oh my gosh OP. Benign!! I almost want to cry with relief for you despite not knowing you and not even having posted on this thread before.

However I understand you have a lot of challenges to face both now and in the future and wish you tons of strength with that.

Oh my gosh! Thank goodness he is doing well. Take each step one at a time and sending you lots of hugs

Oh OP, that is amazing news. How brilliant to be home again as a family. You must have some counselling, this has been such a shock and your nerves must be on edge. You have had so much anxiety, that will be difficult to just let go. Take care and wishing your son all the very best for the future with his recovery and on-going treatments. I’m sure those in themselves will be tough and an on-going struggle - but you sound like a wonderful family

Amazing news OP - I’m so happy for you that you’re home and it’s mostly “good” news.

You’ve been through hell with no idea what was going on so yes counselling or some therapy may be a good idea.

You’ve done brilliantly - enjoy being back at home and adjusting to life again.