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 wish I had something helpful to say.

I’m just so sorry to read this update; you are both in my thoughts and I send you all the positivity and love in the world.

Well done for being the most amazing Mother / Advocate for him, I’m in awe of you. Keep strong and keep going.

We’re all here to offer support during this. X

I’m so very sorry to read this update, OP. My brother went through a similar scenario 12 months ago. It was horrifying to witness but the NHS were wonderful, absolutely amazing.
I often marvelled at their resilience but he would simply say that what else can you do but sit next to your child’s bed and be there? They found strength in desperate times, you will too.
He would echo the sentiment about writing everything down, he would often be found reviewing, researching, questioning. I guess everyone deals with this differently but that allowed him to gain some small sense of control.
My thoughts and prayers are with you and your family. May you be blessed with faith, courage and strength in the coming days.

Take care of yourself, OP. See if you can get somewhere to stay nearby for the weekend or next week at least so you can take turns escaping to eat and sleep and just decompress away from the beeping.

I’m currently going through cancer treatment (not brain) and I cannot fault the care I’ve received from the NHS. They have been truly wonderful. Everything happened very quickly. They were really responsive to all my concerns and questions. I’ve just been so well cared for. I hope it will be the same for you and your ds.

Thinking of you and your boy and your family OP

(My child's spinal MRI looking for tumours was over an hour - so it is a long one. Are you allowed to sit with him whilst he is having it? I was allowed to sit with my daughter next to the machine to offer some comfort so perhaps see if you are able to? X

My neighbour’s boy (aged 15 or 16) had emergency op for brain tumour also. All very scary. He was utterly amazing!!!! So brave.

He’s just celebrated a year on and is healthy and recovering. It was removed. He has the all
clear. There were some things that were slow with the recovery but HE WAS OK!!

Sending love and strength. I cannot imagine how terrified you must be. There is definitely hope though. Xxx

Hi,

I am so bloody sorry you are going through this.

I am an onco mum also, if you would like to chat with someone who understands, please let me know. I am also a biochemist (Dr) and can hep with explaining stuff.

So sorry you are going through this OP. The staff who treat him will be dealing with this everyday and will be very experienced in knowing the very best treatments. In my experience, no expense is spared when it comes to kids. My friends son had his very rare brain tumour removed by a surgeon who flew in from Germany specially to do that one op.
15years down the line and he's an adult with a job and kid of his own.

One thing we did with recent medical emergency was to record the doctor’s updates using our phones - we asked and they were fine with it.

They understand that you will find it hard to take in all the information in one go. It’s especially useful for the family members who can’t be there in person for the briefings to hear the doctor’s words themselves.

Oh my love I am so sorry. What a horrific, unspeakable situation for you all. No words, but I am thinking of you all and praying for good news. A different situation, but my child has had a total of 13 brain surgeries and all I can say is, the brain is an incredible organ. Its ability to heal and recover and adapt is astounding. You will also be under the care of neurosurgeons and neurologists who are the cleverest, most amazing doctors. Cling on to that if you need to. I know what it’s like to have a long journey ahead of you, and how awful it is. You are so strong and so brave, even though you won’t feel it, and you are the best advocate for your child. I’m sending all my love and strength xxx

So, so sorry to hear your news OP. You will discover that you are stronger than you ever realised, and that you can get through this, a day at a time. I know I did. When my DC was diagnosed with something similar (but different), I spent one night crying/not sleeping – and then realised that I just had to sleep in order to be the best parent for my DC. We're 10 years on from where you are now, and it is a distant memory.

As PP have said, you'll probably spend a lot of time in hospital - especially at the beginning - so take all the chances you can just to get out and have some fresh air/a break. Do also have times when you do relatively normal things with your toddler - and maybe your DP comes and spends time in the hospital.

We were referred to the social worker in the hospital as well, and they helped us fill in the forms for disability benefits (I think it was DLA at the time, but probably has a different name now) - that will probably be the case for you too. I thought I didn't need it but it was a real financial help when couldn't work as much.

If friends and family want to help, then home cooked meals that you can warm up in a ward microwave is probably the best help, along, maybe, with childcare (though my other DC was older - may be different since you have a toddler).

Thinking of you all, and sending birthday wishes to your DS for tomorrow.

If you're in RMCH in Manchester pm me and I'll make sure you get a settling in pack asap x

I've been thinking of you all day OP. A wonderful mum thrown into hell. You are there with your lovely boy every step of the way. Every wish in my heart is for you tonight xx

@YourRubyMaker - just to say how sorry I was to read your thread and to send you a huge hug.

The NHS is amazing - filled with kind and hugely skilled and dedicated people at every level. I hope you get the best care.

Although it's so hard, do find some time to care for yourself too and try to get some sleep. Wards are so difficult and noisy to sleep on, and you can only be strong and care for your son if you also find some time to care for yourself 💐

OP I just wanted to say that your family are in my thoughts. I am so sorry your son is going through this and I wish with everything that he recovers well. As a mum my heart has broken for you

It’s been a long shit day , he’s in for a 14 hour operation on Monday and they don’t know what they’ll be doing until they do it if that makes sense as it’s very large and they can’t tell if it’s on a major artery or being fed by one and its a very risky op 😢 we’ve been given a room tomorrow for his birthday but he can’t sleep in it so still on a ward and he’s really struggling with the noise as it’s baby’s and toddlers and it’s sooo loud all day and night plus people’s phones tvs etc on all night , I just want to know he’s out of it ok safe and sound then we can deal with what comes next , no plans for what comes next as they don’t know what kind of tumour it is but it’s extremely large and it could’ve been there for a long time , would like to say I only want to hear and think positive my mind cannot take anything else and thanks for the well wishes

Could someone bring you earplugs or ear defenders?

Sending you all my best, OP.

I can't even begin to imagine what your family is going through. I hope the operation is successful.

They always tell you they don't know and they are normally more pessimistic before they go in.

I will be thinking about you all tomorrow!

Sending lots of love to you all. It's so awful what you're all dealing with. Can he try some noise cancelling headphones?

Oh OP, absolutely best of luck and positive thoughts for Monday. I’m sorry he’s spending his birthday in there - they will help to make it special.

You can also ask the nurses to police the noise as he must rest before his op - it’s not a mean thing to do - it’s just turning things down a little.

Hopefully this time next week you will have positive news and a road to recovery

We’re hoping to be moved to a room with different people cos this one is unbearable, think we will both feel better with some rest 🤞🏼

Ok, on Monday it won't be nice when he's put to sleep so brace yourself and it's ok to cry. You'll be in the anaesthetic room until he's asleep. It's ok to cry on the nurse taking you back to the ward.

Try and go and do something that will distract you like take the little one to soft play or to the cinema. You might be called into the recovery room or you might see him in the hdu / itu it depends on hospital policy.

I'm a surgeon and I dont call parents until they're safely on the recovery ward.

They should shave all his hair just a little bit and it will be heavily bandaged.

If you need anything else just message me

The only shred of comfort is that at least action is underway on Monday...this is going to be the most appalling few days at the very least but every instinct you had has served you well - you knew something was wrong and you got help. Summon your strength if you can, as you have before, for your amazing son who is also in amazing surgical hands - as well as parental hands - and being young will be resilient beyond words.

Other posters have had brilliantly practical tips for you. If you can find a bottle of Night Nurse, a couple of glugs might help you nap through some of the night time noise.

Huge hand hold.

Also the ward will have ear plugs and iPads for the kids so just ask for one.

Ask if you can go into the young adults chill room as he's in that funny age where he would benefit from a bit more grown up stuff like pool or playing with jukebox etc. but also needs you around.

@YourRubyMaker
Just a practical thought – but I remember you said up thread that you don't live close and your husband is back at home with the toddler. Would it be worth booking a Premier Inn as near the hospital as you can or similar and so you'll have a base and you can at least have a few hours there sleeping while your husband is with your son? You really need to get some decent sleep to be strong and think straight for the next few days x