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

So sorry to hear this , I have been through something similar with my son and he’s is fine but it is a nightmare scenario . Look at The Brain Tumour Charity website it has lots of help ,advice and information to help guide you.

Just adding my voice to the choir of concern for you. As others have said, the JR is a beacon of excellence, and he and you will be in the best of hands.

I'm glad that a pp has said this:

You don't have to be brave, or strong

Though there are times when you will need to be brave and strong in front of your son, you are allowed to scared and vulnerable around others. Those who will insist that you are strong and positive are not always the people you need to be around.Those who will let you cry, those who will let you voice your deepest fears, are the ones you will appreciate most.

Just wanted to let you know I am thinking of you and your family OP and wishing you the very best xx

Sorry to hear this update. When it happened to us I thought my world had ended. At this stage I could only imagine the worst possible outcome. You will feel so much better when you know more and you are in the care of experts I promise. You can get through it. We got sent straight to Bristol from the scan, but I’m sure you are in equally good hands. You will be in my thoughts, sending you strength and prayers. X

Thank goodness you pushed for an MRI.
Hopefully your lovely son will now get the treatments he needs fast.
Best wishes for you as a Family, especially your son.

So sorry to read this. I have been there when my child has been unwell and I’ve not had all the answers so I can’t understand some of what you are feeling right now. I hope your follow up appointments are quick . Thinking of you 💐

So sorry it wasn't better news, well done for pushing for your son, it's been found early and hopefully treatment can start soon. Wishing you all the luck in the world OP.

I just wanted to add to all the other comments and say how very sorry I am to read that the news is not good but hope with all my heart that they can get rid of the tumour quickly and that he, your husband and you can then get on with the rest of your lives. Thank goodness you pushed to get him seen. Sending all positive thoughts and vibes to you xx

I'm so sorry
Sending you loads of love, positive thoughts and prayers

I'm sorry it wasn't better news, OP, but as others have said, he's in excellent hands and hopefully you'll have a plan for treatment very shortly and will be on the road to recovery before you know it. Wishing you and him all the very best.

Oh so sorry you are all going through this.
Try to remember that the diagnosis while devastating means you now know what you are dealing with.
You knew there was something wrong. That's why you pushed for the MRI. You've done brilliantly to advocate so well for him.

My ex partner had a pioneering treatment for a brain tumour in the early 90s when his prognosis was very poor.

He went on to lead a perfectly normal life. There is hope.

And try and take some time for you. It's okay to be numb, angry or not to feel strong. Are you entitled to any counselling through your work? You should check because while this is about your son, you can't take care of him running on empty.

Wishing you well as he goes through treatment

Today is the worst day - you will be reeling.

I have been there with my son too. It's unimaginable. 8 years have now passed for us & I am so lucky to still have such an incredible child to love.

The NHS took exceptional care of my boy and I hope you find they do the same for your son. Try to take things one day at a time.

I’m so sorry that you’ve had such tough news - wishing you all strength and that you have some very positive swift news for your child. X

I'm so sorry op. Be kind to yourselves over the next few weeks.

I'm so sorry op. Be kind to yourselves over the next few weeks.

Yet another poster with a very positive experience of the competence of the people at JR.

Seconding @juniorcakeoff and @Runforhome When you can, connect with parents in similar positions and charities/organisations that can talk you through how to prepare for the next imaging, appointments etc.

My very best wishes for you and your family at this troubling time.

Sorry it wasn't better news. Thank goodness you pushed for the MRI though - at least now you know what you're dealing with. Thinking of you all.

So sorry you got such awful news. Easier said than done at this early stage, to tell you to stay positive, but we have amazing medics and surgeons in this field, and positive outcomes are far far more common than negative ones!

Just to add, whilst I’m sure it isn’t anywhere near the top of your list as you find out what treatment he’ll be having and how you’ll cope with this, please discuss what you feel able to with his school, as they’ll be able to form something of a framework for him to assist in keeping things normal when they can be and helping to hold you up. Take care.

I’m so sorry OP! X

I’m so sorry OP! X

I'm so sorry to read your last update, the John Radcliffe is probably the best place he could be for this, so know that you are in good hands. Wishing him a quick and successful treatment and sending you as much strength as the internet can cope with.

Thinking of you OP. Stay strong.

I'm so sorry to read this news, op. I hope it's easily treatable- the JR is brilliant and they'll take great care of him.

Thinking of you all

@nearlymumof5 I am so sorry to hear this and can't imagine how numb you must all feel. Sending all my best wishes to you and yours x