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

The JR is the a fantastic hospital. You will be greatly looked after x

I thought I’d pop a quick update - scan today shows the slightly bigger than golf ball sized tumour is in his cerebellum and he also has a blockage (not a mass) in his spine. Op taking place on Monday which will be at 9 and for the majority of the day. I’m feeling weirdly ok, DS is chatting up all the nurses and although anxious is exploring our new environment. Staff couldn’t be more helpful and attentive. Have met with so many people including the surgeon/s. A biopsy will be done which will take 7-10 days to come back, I’m expecting cancer but we shall see xx

That is so quick. I hope the operation is a complete success. Your ds sounds like an absolute sweetie. Big hugs.

Glad the ball is rolling and that you are feeling okay 💕. Will be thinking of your DS Monday, hoping everything goes smoothly. X

Thinking of your family and your boy 💐

Thinking of your family and your boy 💐

Wishing you strength for Monday and the coming weeks after and hoping for good news.

Wishing you all the absolute best outcome possible

Sending you all strength for getting through Monday initially and then for navigating the road ahead. Xx

I hope you can feel the love coming your way for you and your DS from everyone on this site because it's there in ocean tanker loads. Thank you so much for coming here to update us all when you have so much going on. Will keep watching and waiting and hoping and praying for you all.

@nearlymumof5

Just want to say I'm still thinking of you and your boy. Also with regards to your last message - a lot of oncologist's refer to all brain tumours as cancer whether they are malignant or not, we were advised it's so that they aren't played down because a "benign" tumour in the brain is different to one in another area of the body. So be prepared to ask questions if they use the Cancer word, what does it mean etc xx

@nearlymumof5

Just want to say I'm still thinking of you and your boy. Also with regards to your last message - a lot of oncologist's refer to all brain tumours as cancer whether they are malignant or not, we were advised it's so that they aren't played down because a "benign" tumour in the brain is different to one in another area of the body. So be prepared to ask questions if they use the Cancer word, what does it mean etc xx

I'm so sorry. Thinking of you all and hope the op on Monday goes well.

I'm so sorry. Thinking of you all and hope the op on Monday goes well.

I'm glad they are operating on Monday, you will all feel so relieved once it's out. How is your boy finding the cannulas / medication etc ? Hope they have had the play specialists in to see him.

We had similar surgery length and cerebellar tumour.

Children's recovery after brain tumour ops can be really weird (in a good way). They will have told you some depressing stuff about posterior fossa surgery. But ours could barely stand on day 2 and then the next day they were walking with one of us holding hands. Went from Ng feeding to eating crisps in 24 hours. We met loads of children with similar rapid improvement.

Hope you have a peaceful day today.

Oops one more tip-whatever type of tumour it is, lots of stories online have very sad outcomes. The reason for this is that parents often need local media or social media help to raise funds or raise awareness. So for example you are more likely to see information about a child who has relapsed or had profound disabilities, because parents are raising funds to go abroad for a new type of treatment or for equipment. There are many positive personal stories out there, but they are understandably less widely reported.

Ask the people treating your son for their stories, whilst you won't get names it was great to hear about children going to college or even having children who survived this.

Thinking of you and hope Monday goes well. 💐💐💐💐

I’m glad there is a plan in place and you are all in the best hands. Your DS sounds fabulous! We’re all rooting for you all ❤️💐

Thinking of you and your boy. It sounds like you are in the very best place and I’m so pleased everything is now happening quickly.

I think many of us who’ve had “that call” can identify with you feeling ok right now.
is it like there’s always a job to do, even if that job is just to stay out of the room whilst something medical happens? And you can feel when a hospital team is functioning well. And other people aren’t in denial any more so you are not as lonely?

@nearlymumof5

Prayers and a handhold coming from the US for you, your DS, DH, and your entire family.
Also for the doctors performing the surgery on Monday.
And prayers that you have a peace about the outcome. Things are going to be OK, OP.and a big

Thinking of you and your sweet boy OP. ❤️

Another one adding love and support to you and your family. Your boy sounds a total sweetheart, and you sound very strong. Look after yourself as best you can.

Thinking of you all and sending big hugs xx

Thinking of you all.
I hope the op goes well on Monday x