Called back to consultant after DS brain MRI

[nearlymumof5]

hello, my DS aged 7 has been having nausea, sickness and headaches since November and through lots of pushing managed to get an MRI which was on Monday eve - we were told to expect results in 2 weeks. Today I received a phone call from the paediatric consultants secretary asking myself and hubby to go in tomorrow at noon. I’m terrified. Has anyone else got experience of this? What’s scared me most is that they have asked me to bring hubby. They have requested that we don’t bring DS. I don’t even know what I’m asking for on this thread, maybe someone that has been in a similar situation? Thanks x

Oh OP how awful. I can't imagine what you're going through. Glad to hear that things are moving quickly, well done for pushing the referral. I'll be thinking of you x

Thank goodness you pushed them, OP. Why on earth would they piss about with a child like that? I'm so glad it can be treated too. All the best to you all.

💐

Will be thinking of you, good that it’s moving quickly now, you did so well to get them to do an mri more urgently than was originally planned.

I read MN every day but rarely post, however I've been thinking about you when I read your OP.
I'm so sorry that it was bad news. How is your little one doing?
How are you and your husband holding up?

Sending best wishes to your family OP💐💐

So sorry for your bad news, I am sending lots of love and thoughts and prayers for your son and your family x

Thinking of you all and sending all the love and hugs your way 💕 xox

Just here to second that there are some amazing charities out there to help. Forgive me if I have missed a post as I’m not sure if the biopsy has taken place yet but Young Lives vs Cancer (formerly known as CLIC Sargent) are an excellent charity who will offer you unwavering support. Thinking of you all 💐

Oh no! I’m so sorry!!! You must be so totally oberwhelmed! They are likely to want to begin treatment as soon as possible. Now is the time to gather your tribe and let them know what kind of help you will need… Food, (especially coffee, chocolate and wine for you…) babysitting, shopping, laundry, etc. You are going to do better if you can focus on your baby and they will feel better by contributing .Also, look at joining a kids with cancer support group. They will be there for you and be all over what you need.

It's awful that you are forced to get the doctors to order a scan in a timely manner. A friend had to refuse to leave the hospital without a scan as she just knew that her DS was seriously ill. With reluctance the scan was done and she and DS were blue lighted to GOSH within an hour. Good for you and now you are at JR and hopefully you'll have a diagnosis of the tumour type asap.

It's awful that you are forced to get the doctors to order a scan in a timely manner. A friend had to refuse to leave the hospital without a scan as she just knew that her DS was seriously ill. With reluctance the scan was done and she and DS were blue lighted to GOSH within an hour. Good for you and now you are at JR and hopefully you'll have a diagnosis of the tumour type asap.

Im so glad you went with your gut and pushed to be seen faster..sometimes it needs to be done. Sending love and prayers to and your family..

Oh OP, as mum to a DS my heart goes out to you. I don't have any first-hand experience to share but just to echo what has been said above: don't hesitate to let family and friends help and support you. Draw on the amazing network of charities and organisations that can help, eg Young Lives vs Cancer www.younglivesvscancer.org.uk/life-with-cancer/my-child-has-cancer/

And please also look after yourself.

Your son is in good hands now thanks to you. Wishing you strength and positive vibes.

Well done for pushing for scan, good luck to your DS x

I am so glad they can operate. Not sure what you have said to your boy, but for our DC we gave the tumour a name, DC drew a funny picture of it and then we turned the picture into a paper aeroplane and chucked it. We used to think about where the lump was now e.g trapped in Newcastle under a microscope! I think it helped him.

Doctors might be able to give you an initial opinion on whether malignant or not after surgery, but be warned it might take ten days/two weeks for confirmation of exactly what type -especially if it goes to Newcastle! I did say to my DC it is 50:50 whether it is cancer or not, but if it is there will be more treatment after the surgery. I didn't want them thinking that was it and then feeling let down.
Brain tumour charity has lovely animations on all aspects of treatment, starting a little boy called Jake
Have they said exactly where in the brain the tumour is?

Well done for pushing for the scan OP. It can be hard work advocating for kids and loved ones in the NHS. You've done amazingly well and I'm glad things are moving quickly now.

Well done OP for being such a brilliant advocate for your boy. I wish him the best of luck with his treatment.

You're the sort of mum/human I aspire to be! However unlucky your DS has been with developing this tumour, he struck gold with having you as a mum. Wishing your whole family all the very best.

@SobranieCocktail very beautifully said.

Fortitude to you, hubby, and your darling child in the days ahead.

I also fully agree with what @SobranieCocktail said ❤
Well done for pushing, you are an amazing mum! All the best to you and your family.

You're the sort of mum/human I aspire to be!

None of us actually know OP. Let’s not put too much pressure on her to be a paragon, or anything else.

Online support is lovely but it can’t replace RL networks in a crisis.

My son was diagnosed with a tumour two years ago so my heart is with you - I know you must be in absolute turmoil and I wish I had the words to help you.
He was also treated on Kamrans ward at the John Radcliffe and like you, it took a fight to get him diagnosed. Things will change now - the experts will now get to work and you will fight side by side to get him well again - they are amazing - especially the nurses. That being said - you are now his greatest advocate - you know your boy better than anyone so keep trusting your gut, keep challenging them.
I remember how dark and terrifying it was waiting to find out what type of cancer it was - they kept saying - “once you get a plan it you will feel better” and it was true.
Take all the help you can get - YoungLives vs Cancer are amazing. If it helps, talk to the other families on the ward - no one else gets it quite like they do and they will be the ones you talk to in the middle of the night on the ward when you are at your most afraid. From a mum who was once in your place I am sending all of the healing love and light I can muster xxx

No advice to add but I just wanted to let you know that I'm thinking of you and your DS OP. Your mothers instinct was right and you pushed for your DS. The wheels are in motion now and I wish nothing but the best on your journey xxxx

Hi, I know how you feel, same happened to us with our Daughter, 15, we were told to bring her in, got a call to say come in now,
yes it was a brain tumour, had to wait a week to see if it was cancer, on her cerebellum, it is still being monitored today, 3 years later.
I know how you are feeling, yes record if you can, but to be honest, hospital so so good, I had direct number email and mobile to call.
Sending huge hand hold to you, please let me no how it goes, our next scan is 1 Aug xxxxx

This is exactly same as my daughter, the contrast shows it up more, hers also at the back, here if needed x