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]

Sending all the love.

Get as much information and support from
the hospital, gp and family and friends learn on everyone.

take a note pad and write things down youll struggle to remember all sorts.

Im not going to say think positive when it must feel overwhelming but please remember there is hope and lots of really positive examples xxx

I’ve no experience or advice to offer but wanted to say how brilliant you are getting the scan brought forward, the results bring these months sooner at least means less time worrying prior to scan and less time time for tumour to grow. I hope the tumour is benign and your ds gets speedy treatment.

Well done for pushing for the scan and getting through it. Sorry it's worrying news, but at least you know and i hope for the best outcome.

I had one a few years ago and it lasted at most fifteen minutes love so take care and try not to worry xx easier said than done but if there is a problem all will move more quickly than June

I'm so sorry - when you said they unexpectedly decided to do a dye contrast I was worried for you. I hope you are all OK. Please stay strong - you never know and kids heal so quickly.

OP has updated.

I'm so sorry OP. You must be in absolute shock. I hope you have family or friends around you tonight, wishing your boy the absolute best treatment and recovery ❤️

We’ve been admitted to the local hospital awaiting a transfer for specialist hospital once a bed is available , it is large and very serious , I don’t ever want to be looked at the way the doctor looked at me again it was with sorrow and pity and I can’t get it out of my mind , I just want to be getting testing and treatment done not waiting but understand I can’t do anything

Trying not to break down in front of my son is so hard too , my partners at home with the toddler in bits

I am so so sorry this has happened to you.

My brain mri took about 30-40 minutes. June is not an urgent referral, I had an urgent referral and was scanned after about 10 days.. his symptoms seem worrying to be waiting until June for a scan

I am not one for anecdotal stories ordinarily. I work in a school and we have a student who had a diagnosed brain tumour in year 7. Very similar symptoms to what you’ve described. But she’s remarkable and is in school in year 10 doing her GCSE’s. It’s been a long road but she’s doing amazingly and is an absolutely brilliant human. She has so much ahead of her despite what she has been through, it has not limited who she is.

I'm so so sorry to hear this update. I was worrying that it could be this and upset that no one took things more seriously. Hopefully you will get the best team and they will keep you all updated. Does your Son know? I hope you have someone who can babysit your toddler so your DP can come to you both x

I've just seen you got the mri moved! I'm so glad you did, I'm so sorry for your news 😢

I’ve just seen all of your posts and I am so sorry for your recent update. You’re doing incredibly well holding it all together. Hope they have a bed available soon and you can start getting on with the tests!

It sounds like now they are at least taking it seriously and making sure he has good care so he’s got that and a mum who doesn’t stop advocating for him on his side.

I'm so sorry. What an absolute shock you must all be reeling from this news.
It's so unfair especially when a child is involved. Go and break down in the toilet then wash your face and back to your boy. It will help you cope tonight if you let some tears go x

I'm so sorry it's so scary to have a child seriously ill I've been there hope they can start treating him asapxxx

I am so sorry. My son was diagnosed with a brain tumour when he was 3. It is nothing short of terrifying. That's 12 years ago for us now and he is doing really well. Please try to take one day at a time. You got him diagnosed, thank goodness you know now.

I've retyped this about 6 times, and I'm not sure about now, but can I please gently ask for people to be more cautious when going 'oh it may be benign'. A low grade (which is what they have renamed benigns, as they aren't harmless) is (usually) much better, but there is still going to be a long road and the OP is still going to need considerable support and love for a long time.

'Benign' can often come with lifelong consequences and/or prolonged treatment. High grades can often be curable and many have an excellent prognosis, though inevitably need more aggressive treatment.

OP, there's a children's cancer board on here. I know that word makes you want to vomit right now, and it's not necessarily for now, but for the future if and when you want to seek it out.

A large proportion of the people have kids with brain tumours (low and high grade - not just for high grades). Lots of us have been through this and can support you through and provide a ear to listen.

All the best

You say it's large. My brother had one when he was 11. It was the size of an orange! He turned 50 last year. Sending you love and strength xx

Oh my, your poor family. I’m so sorry, what an awful few hours you must have had, just mind-blowing.

Know you are absolutely in the best place possible; there is nothing more you can do for now so if you can, take some comfort in that.

I can’t imagine how you must be feeling. We are all with you in our thoughts and sending you strength.

Hoping that they find that bed soon, and diagnosis and treatment will come swiftly. Courage.

Sending positivity and light xx

I’m so sorry to read this update. I hope you have some answers and treatment options soon. Thinking of your son, you and your whole family. You will get through this because you have to, just be kind to yourself and please look after yourself. 💐