Out of my mind with worry [Please read the OP's updates before responding - Title edited by MNHQ]

[YourRubyMaker]

Someone please just give me some hope I’m so stressed I can’t function , my 10 year old since sept has had a limp in one leg then it became a weekness in his arm and hand on the same side , doctor was useless and made me do it as two separate issues and make another appointment!!! Didn’t take me seriously and Had X-ray on hips all fine (obviously 🙄 ) I went to see another doctor who said im referring it for urgent peadeatric appointment (great so helpful ) and he wanted to refer for mri but couldn’t , appointment comes thro and it’s in fucking June !!!! And that’s a urgent referral , in the mean time it’s got worse and now he can’t run and often stumbles and falls doesn’t use the arm hardly at all , have taken him back and they’ve now booked a mri brain scan for next weekend , which happens to be on his birthday of all days 😭 he’s mental health is shit as is mine and he’s obviously worried , how long does a brain mri scan take please ? And has anyone ever experienced issues like this and it not be something life threatening, I also have a toddler so am still having to be normal and do normal stuff where as I just want to lay in bed and cry

• [Message from MNHQ - please see OP's updates before responding]

Yes it his birthday tomorrow , so I haven’t slept all night as the ward we are on is all shared and was soooo loud all night with kids crying machines going off etc , luckily he’s managed a couple of hours as tests didn’t finish until 3am . Big doctors coming this morning but looks like spine mri then go from there , really praying for good news from this mri , hopefully my partner will be able to come for a couple of hours support later today but the hospital is far from where we live ,. Got sat in a room last night for some serious conversations with a doctor which was scary . Sounds ridiculous but trying to think of it much and that way I can cope

Trying to not think of it I ment

Just wanted to say that you are in my thoughts and what an amazing mum you are. Your son is in the best place now thanks to your perseverance and will get whatever treatment he needs. Really hoping it’s benign but even if it’s not there is lots they can do. Sending big hugs.

Hope you both managed to get some sleep last night and that you get some more answers, etc about treatment today. Thinking of you.

So sorry for your news. It must be awful but I'm glad they're really on it now.

OP, another here thinking positive thoughts for your son.
I hope you get some answers today.
As others have said, you are an amazing Mum. Thank goodness you stuck to your guns.

Sorry, just seen that you didn't sleep. Can you get today things like ear plugs, eye mask, etc.....just to help with future nights?

One good tip when you have meetings with doctors is to take a notebook and pen and make some notes. If you think of questions between meetings write them down for the next one. You often come away from these sort of things thinking "what did they say about xyz". It all gets blurry.

If they think he's going to be in a while ask about a single room with a pull out bed/mattress so you can both get more sleep? Though maybe he'd be less bored on a ward??? Single rooms can be a bit isolating.

This is the stuff the NHS does well - he will have the best of care.
I think from memory, my nephew had drugs to shrink the tumour then they operated the next day, but a long time ago so things will have moved on.
You just concentrate on your lovely boy and let the medics do their thing. You’ve done a great job so far!

OH OP, I started reading your thread yesterday morning and I have now only just caught up with the fact your son had his scan yesterday and what the results are. I am so, so sorry. It’s cruel and so unfair.

I used to a paediatric nurse and spent some time working in MRI departments when children were admitted for scans under general anaesthetic due to various symptoms they were having. My heart used to break when I saw the images on the screen, and know it was something serious whilst the parents were still sat on the ward waiting for the child to be returned to them. It used to make me feel sick and heartbroken for them. I sadly have been in many situations where I’ve had to sit in a room with a parent and the doctor and tell the parents their child has got a tumour of some kind. They came to the hospital with their child expecting a routine scan to then being told a few hours later that their child is seriously ill and needed be transferred to another hospital that day.

It was one of the hardest parts of nursing I ever experienced and I am so sorry you’ve had to be on the receiving end of it.

Life can be so, so cruel.

Nobody deserves serious illness but for a child to have to suffer from this and the family be put through so much heartbreak is so incredibly unfair. I just have no words.

I will be thinking of you and your son today and somehow you will find a way to make it through the next 24 hours, and then the 24 hours after that too. And his poor father must be distraught at not having been able to be with yesterday…..the whole situation is just awful in so many ways.

Anyway, I’m rambling. I just wanted to say I am so, so sorry about your son and I hope that after more tests they can give you a better picture of what lies ahead and you can start to take it day by day.

Sending lots of (un-mumsnetty) love to you and your family x

So sorry OP. Sending strength to you all.

Sending you and your family strength and love. Hang in there lovely.

I find for me.in times of crisis finding all the practical things I can do helps.

So keep track of Dr's names, key points of conversations, any questions that arise from your talks or things you think of afterwards.

How you can focus your son so he isn't worried, so if he is up to it. What computer games he can do. Colouring. Books you can read together. Might help both of you x

But my heart goes out to you @YourRubyMaker . We are all here to support where we can

I'm so sorry, YourRubyMaker. Such an awful lot of stress for all of you... thinking of your DS especially and wishing him a very Happy Birthday - may it bring the gift of hope and good health.❤️

Oh lovey - what shocking news - this stranger is sending you support and courage

I just want to say I am so sorry this has happened to you and your child. But he is so lucky to have you in his corner and advocating for him. ❤️

So sorry for diagnosis, but you have one now and by the sounds of it they have jumped straight on it, sending love

Oh op I’m so sorry, I’d been thinking of you. The first dr you saw needs taking to the cleaners over not pushing an mri the second he saw you and leaving it. You are in the right place now and I’m sure the teams will do their best for your son. Sending you so much love

💐

We are all praying that the prognosis is positive. Like others I know 3 people who’ve had brain tumors with positive outcomes, one as a child and 2 as adults. But that probably doesn’t help you right now.

I can’t even imagine what you are going through as a parent. Lots of love ❤️

God bless you all 🪻

Sending you a huge hug. How frightening for you all.

As previous posters have said, get a notebook to write down anything the doctors say and any questions you think of. And please don't Google anything. It will not help.

I've just seen this and want to offer you massive hugs.

I've been there and it just doesn't feel real, it's a true outer body experience. It happens to other families, not yours.

I know that right now you are doubting yourself. Could I have pushed harder? Why didn't I make them listen earlier? How am I going to do this? Why did this have to be my child? What am I going to tell him? All of these thoughts and feelings are so incredibly normal and I'm telling you right now, you can do this. You are stronger than you know and so is your DS.

My son was 8 when he was diagnosed with blood cancer in March 2024, he's now been in remission for 5 months.

Hoping for the best possible outcome for you, including that it is benign. Fingers crossed.

As others have said, this is where the NHS really excel. Every single person on his team will have your son at the forefront of their minds. It can feel chaotic for you though, as it will move quickly, so please take notes and ask questions. The Brain Tumour charity are fantastic and will hold your hand through this. If you feel able, give them a call.

Practical steps today - try and eat something and rest when you can. You need to look after yourself to be able to look after your son.

Just hold on tight a little while longer until you know what you’re dealing with. The majority of tumours are benign and I am praying this is the case with your son. You have a whole army of us behind you, mums and non-mums who are you carrying you and your boy in our thoughts. We will be here whenever you need us x

OP, there will probably be Macmillan nurses within the hospital. They are so so supportive and can signpost for lots of extra support too.

Jesus OP I am so sorry to read this update. BLOODY WELL DONE for pushing and pursuing, you did an amazing job. I'm wishing you all the strength I have so you can continue to remain so strong.