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]

I am so sorry you are going through this.
Here’s some tips:
You’ll probably be able to sleep next to him so make sure you have lots of long dresses or joggers sets. A pair of plastic sliders or crocs for you is good for the shower if you stay. A long charging lead for your phone is handy and some headphones. Make sure you take notes of everyone’s name and what’s being done when because you may refer back to them. There’s usually free wifi but you may want to download a new favourites movies onto an iPad at home in case the streaming rate is bad. In the big hospitals there’s often a hotel where the whole family can stay free like the Ronald McDonald houses.
Wishing you all the luck xx

Oh OP. What a massive shock. You have been a very strong advocate for your child - thank goodness he has you. Try and get some rest for now as I expect things will be a bit of a roller coaster. Take care of yourself and your boy - thinking of you.

What a terrible shock for you. I really hope the treatment goes very well.

Would this charity be a suitable source of support for you, OP?

https://www.oscarspbtc.org/contact/

Oh OP, I’m so sorry, I don’t know where you are geographically or where they’re referring you to, however Birmingham Childrens has a brilliant neuro-oncology unit that a friend of mines child was treated at, the staff there were fantastic and supportive, will say a prayer for your family tonight

I'm so sorry. What an absolutely horrendous shock, I can't begin to imagine your worry right now. I do hope and pray that the medical team can do the absolute best to get him on the road to recovery so he can live a long and healthy life, like so many of the other posters have mentioned about their loved ones who have gone through similar...
Sending love and prayers 🙏🏻💕

I'm sorry you've had such a shock.

If I can give you one piece of advice, it's don't google. It won't help and you have no idea what you're dealing with yet. When you do know exactly what you're dealing with, then do your research.

I'm so so sorry. My ex-husbands 7yo daughter was diagnosed with a brain tumour end of 2023 out of the blue following waking up one day with numbness down one side and then subsequently diagnosed with something else so our extended family has quite a lot of experience (under Manchester RI) - if you want to contact me I can tell you about it in more detail if that would help?

I've just read all your posts OP. I'm so sorry it wasn't better news. Sending a handhold to you all.

Just know that you did the right thing in pushing to have him seen. He has a great advocate in you.

I just wanted to send you a big hug, I really hope your son gets the treatment he needs and that you got the support you need too.

I hate that I'm writing this but could you go private?

I am so sorry. I was really hoping this wouldn't be the result. Thinking of you.

i used to work in one of the specialist hospitals in this area and if I can help in any way or answer any questions I’m happy to do so, either here on via PM. Just wanted to put that out there for you. How is your son?

I am so so sorry.

Of course none of us on here can predict outcomes, but there ARE positive stories - many of them.

No matter what, you are in for a long journey, and whilst it must all feel surreal as well as utterly horrifying, try to take some comfort in the fact that that the worst bit has happened - and from here on in, it's about treatment and looking forward.

Sending love

Is it with or without contrast? They really need to tell you because with contrast means they need to inject the dye halfway through and some children simply won't stay perfectly in position while they do it

For what?
OPs son has had his MRI and has a tentative diagnosis. Treatment will be the same now whether nhs or private (and I’d wager the nhs consultants are more expert in this area)

@Pelot - you didn't even have to read the whole thread. Just the title as amended by MNHQ! and then follow the simple instructions

MRI done
OP has a diagnoses and is now dealing with that.

I'm sorry Op, I didn't RTFT before I responded. I'm so sorry that was the result you got. Sending up prayers for you and your son.

Oh @YourRubyMaker 💔
I'm so sorry that he has had the results back and they aren't good.
If he is like his Mum he's a fighter - you fought hard for him to be seen so hopefully he will get through this.
Wishing and praying for the very best for him.

@YourRubyMaker I just want to send you, your son and your whole family so much love and strength. You are all in my prayers xx

I'm so sorry @YourRubyMaker

It doesn't always end with a catastrophic outcome. My friend's baby was diagnosed with a brain tumour at 10 months old, it was also huge. That little girl is now a bouncy 11 year old. She does have some life long limitations as a result of the the tumour and treatments but she has an amazing life.

Here's hoping that you get some news soon x🌻

Thinking of you, your darling son and your whole family. Praying for the very best outcome for him 🙏🏻

I'm so very sorry. Sending strength and hope for the best possible outcome for your son.

What an awful shock for you. I will pray hard for your dear son. All that wasted time, this bloody NHS needs tearing down now.

I’m so sorry this is happening. This is such a tough time for you and your family. I’m also so sorry about all the faff just to get to this point.

I know it’s hard to be strong in front of your son, so maybe take a break whilst he’s sleeping and get some of your emotions out, they are real feelings and holding those in are going to make being strong for your son really difficult.

Ask the nurses if they have a counsellor, support service or call Samaritans to help exhaust some of these pent up feelings, because your son needs you at your best right now and that means you need to look after yourself to be able to do that.

They should have a play team or specialist counsellor who can help break the news to your son.

you are going to be in my thoughts and I hope that there are good treatment options for your son and hope of a positive outcome ahead.

take each minute at a time for now, try focusing on your breathing, use grounding methods (think of 5 things you can hear, feel, see) to help reduce your stress levels…I know these seem like little pointless things in this volcano of pain you are in right now, but they might just get you through each moment.

sending so much love and healing, so many people here will be thinking of you all