Called back to consultant after DS brain MRI continued

[nearlymumof5]

Hello everyone, I’ve started another thread which continues on from this one

www.mumsnet.com/talk/childrens_health/4574553-called-back-to-consultant-after-ds-brain-mri?page=1

im blown away by you all, with your support and encouragement. Your messages really have been comforting and a distraction, I’m so grateful.

family background - I don’t have 6 children to run around with at home 🤣 I have three adult children with 2 at uni, and one a mummy herself. My youngest three are 13, 7 and 2. My 20 year old daughter who’s back from uni is staying with my parents and looking after her little brothers while we are here. Once things have settled with DS with pain we will bring them over and they can stay in Ronald McDonald with us.

Also please please, if you’re in McDonalds, please round up. This helps pay towards the amazing house we get to stay in which has been a god send. I can’t wait to start fundraising for these amazing people when this is all over xx

I'm sorry to hear you've had a set back, but glad that the hospital was on the ball. Hope the shunt alleviates his symptoms. Fingers crossed the proton therapy doesn't have to be pushed back far.

So sorry to hear that DS has had a set back, thinking of you, and your family x

I am so sorry to read your ds has had a setback. I hope he will soon be well enough to start the treatment and that he recovers quickly from this second op. X

Just read your update. Wishing you all the best. xxx

Bloody hell it's a real rollercoaster isn't it. Hope the op goes smoothly and he's back home soon. Hope you've got plenty of support in real life too, you can end up getting really run down so make sure people are looking after you as well.

Oh what a shame that he's had to go back in but hopefully the shunt will do its job until he's fit enough to get the proton beam treatment. You're all still on my mind daily. Big shout out to the NHS who get the big things right. Thanks again for taking the time to update us.

I've only just seen your thread but blimey, what a time you're having! I really hope your brave DS feels better soon

Thank you everyone! He needed another surgery yesterday to remove his Hickman line as it had become infected, they’ve removed it and put a picc line in which will see him through the anaesthetic needed for proton, and then when he has his 6 weeks break before chemo they will put another Hickman line in. Yesterdays little op was his shortest and he recovered really quickly from the anaesthetic which makes me hopeful for nice quick recoveries when he’s having it daily during proton. I think we’ll be in hospital for a little while as they need to make sure his head is draining properly. DH is self employed so is up and down to the hospital in the evenings, and is staying some nights so that I can go to Ronald McDonald for a bath and a good nights sleep. My parents are visiting today with our 2 year old and 20 year old so I’m really looking forward to seeing them and giving them a big squeeze xxx

Glad you are getting some sleep some nights! The little ones I saw getting GA for proton came round really quickly, as they only needed to be down for an hour max. They had lovely play therapists and paeds anaesthetists to help them through it, I'm sure it will be the same for you guys.

So it was the infection that made him feel poorly rather than the tumour? If so, that's got to be a bit of a relief, I'd think. It's all relative, I know.

But Nearly Jnr seems a tough cookie and a bit of a bloody star, if you'll excuse my language. Onward and upward to the proton therapy and thereafter him getting on to living a fantastic life. We need more people with his character.

Best wishes to him and all your family.

Recovery isn't linear op. It will throw curveball after curveball that you could never see coming or plan.and it will frustrate the he'll out of you at times!because we just need to know what coming right. To predict.plan.fix.
But your on your way.and you can do this.you have faced so much already.
Take it a step and day at a time.your all doing so well.

So glad he came out of the anaesthetic so well and I hope you all really enjoyed the family visit 🥰

I’m so pleased your ds recovered quickly. Hopefully today will be a good day as you’ll get to see your other dcs. You must also be missing them loads.

sounds like a rollercoaster op but you seem to be coping brilliantly as does your DP. Sounds like a lifesaver having parents that can help with childcare that must be invaluable.

A friend's daughter had proton beam therapy last year. They found all that relatively straightforward and stress free after a bit of a rollercoaster (like you) getting to that point. The daughter has been in remission and doing great for over a year now, whole family is just getting on with life. Crossing fingers that that's you in a few months time. I know this country is generally going to pot but in terms of looking after children with these kinds of health issues, I don't think you could be in a better place.

sorry I meant DS above. Hopefully your DP too though.

I hear that hickman lines are a little more prone to infection than portacaths, which is what my DS had - nothing is perfect though.

Recovery from the GAs can be different from one day to the next - but even on the days when my DS woke up teary and irritable, it soon passed. We were on the list early in the morning and the whole thing ran like clockwork - within an hour of treatment, we would have left the proton facility. Some days he did have a headache (paracetamol helped), but for the most part we were able to do activities (go to the park/zoo/beach...) in the afternoon for distraction.

❤

Sending love OP 💕 XXX

Another sending love - and best wishes for the proton treatment. Xx

Hello Op, just dropped in to see if there was any news. I really hope your DS is doing ok. Sending love x

Another sending love and hugs and hoping for a update on how proton therapy has gone xx

How are you doing OP? I often think of you and your dear DS. I'm hoping things are improving with him and that you are all doing well x

Hi everyone, I’m so sorry it’s taken so so long to update! It’s been a rollercoaster that we’re still riding! DS managed his 6 weeks of proton really well, the team at UCLH were incredible and I’m so grateful. We stayed in Camden during the treatment which has handy but we were also able to go home at weekends so had the best of both worlds. It’s week 4 post proton and he is really struggling this week with exhaustion. He’s always now very down and cries a lot, but also has lots of moments of happiness too. He’s not able to walk far or safely so we have a wheelchair for him now. He has his testicle preservation op booked in for Monday and then chemo will start at the beginning of dec. he did have a week of holding chemo before proton due to the delay but this next lot of chemo I’m dreading . He’ll have it for a minimum of 36 weeks. My mental health is very up and down, I feel like life has completely changed, and I’m now a carer rather than a working mum, which is hard, but on the other hand I’m grateful that I get to spend every minute with my darling boy. He had a wig delivered yesterday and it’s incredible so that made his and my day! I can’t believe all those months ago I posted and you’re still here thinking of us - we’re very lucky so thank you xxx

It’s so lovely of you to update us all! Very very best wishes for the coming months.

it seems my grammar has a lot to be desired tonight :-/ my brain isn’t very functional anymore! Thank you @AgathaMystery