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

Sending lots of love. You've had a tough week but good to hear your boy is doing well and has seen his siblings and your mum. Try and get some sleep tonight.

Sending you and your family love and hugs OP❤️❤️

Thinking of you all 💕

I send all my wishes for a peaceful night for all of you.
I used to do card making classes for Stampin up till it got too pyramid scheme, but they have a long term relationship supporting Ronald Macdonald houses and I am minded to revive my occasional charity classes having read your update tonight.

I can't imagine the pain of everything that you all must be going through, but I hope that knowing there is (almost) always a kind stranger to remotely handhold here is some support.

It's amazing to witness the speed of events once the MRI and everything else happened.

My thoughts are with you all and it's good to see that the RMD house is working so well for you.

Sorry about those results.
Look at it stull though as you being one amazing mother that your even this far.how much pushing it took.what would have happened if u hadn't.
The emotions are going to come in eaves.literally hit you with every single emotion.and irrational thoughts and ruminations try REALLY hard not to thought spiral.focus right on the end of your nose,just there,this moment by moment going forward.
D's will I'm sure have lots of ups and downs too.
Your family found like you are a real team.an armada sailing in to win thus fight.
Lean on who you can.dont ever feel a bother.takr advantage of every one lol!
I did everything for my friend.and family when going through shit with their child.
its a given that love is the biggest strength we have .I truly believe it melt pain and helps heal where nothing else can.so you got this op.
We are here too.
May I suggest a little notebook for you and your d's.even the others too.
It's so easy to lose questions when they are swimming round in your head.or get overwhelmed when.there.is.just.so.much.
And it really helped.first half of pad was for questions,a lifesaver in consult too.and the back was a thought dump,diary,fuck it page,scribbles.

Absolutely not the news you wanted but he's over the first hurdle and with the love and support from the rest of his family (you all sound amazing!) he will take the next ones as they come. Such good advice above and I wish I could add to it. All I would say about asking for support is that people actually WANT to help, cook food, school runs, clean your bathroom and kitchen. I know that when I have been able to do this for friends who have been through similar, it's made me feel less impotent. You'll be doing them a favour! Thanks again for the update. Sending love positive vibes and prayers. I'm chucking everything good I have in my heart towards your son.

Sending much love and hopeful thoughts. Your DS is surrounded by so much love xx

I'm sorry to hear about your son's diagnosis. If they are suggesting radiotherapy ask about proton beam therapy. It's offered for certain tumour types.
Proton My son had proton in the US (was sent there by the NHS) some years ago but now we have proton centres in the UK.

Sending you strength OP

It sounds like you are in the right place to excellent treatment and care. Like everyone one else you are in my thoughts and I'm wishing you all the best.

@BlackSwan yes thank you! My months of researching is paying off as that’s the first thing I mentioned to the oncologist. She said depending on the results they would be looking at proton beam therapy and they now have centres in London and Manchester. I think she said a panel will decide if and where he goes for that. I’m hoping we won’t need to got on Germany or the US, but we will do whatever it takes to get him better xx

Sorry to hear your news. I second pushing for proton therapy- I have a degree in radiotherapy and oncology and did my dissertation on proton therapy for medulloblastoma. Wishing you and your son all the best x

@nearlymumof5 I am on the team who allocate proton treatments for children in the north west. If you come to Manchester, you'll be provided with an apartment in Manchester by Piccadilly, have an allowance for food and taxis to the Christie. You'll need to go to the ward in the children's hospital if he needs chemo whilst having proton, and if he spikes a temp for antibiotics but other than that you can have proton without needing to go to the ward.

The cancer ward in Manchester is absolutely brilliant, the staff are just excellent. Lots of special provisions like a takeaway for families and children on a Friday, a special menu to order from when they're feeling rubbish and very late too.

Pm me if you want any more information.

I mean if/ when a dr signs off on proton I organise it for Manchester. Not that I can help you get it,
Sorry if that wasn't clear

I know a child who was treated with proton beam therapy at Manchester a year or so ago. Parent has nothing but praise for the staff there but it was practically not that difficult for them as only 12 or so miles away. Child has been in remission for some time now.

All that stuff we do whilst not being taken seriously.....

“My months of researching is paying off as that’s the first thing I mentioned to the oncologist”

well done OP

Sorry to hear your latest news, but keeping my fingers crossed that his lumbar puncture and other things will come back clear and they have caught it before it has chance to spread. Which again is credit to you, you really are amazing! Their delays by weeks or months could of made all the difference.
Wishing your boy a full recovery, you sound like a lovely family. 💙😘

nearlymumof5 fingers crossed for proton - it shrank my son's tumour (different kind) and he's doing really well, fingers crossed. One step at a time - any questions please ask or PM. xx

Thank you @cricketwidoww totally understand and really useful info xx

@Nottogetapenny thank you, the surgeon told us today that just a month later of being left untreated he would have suffered a stroke or worse, I’m so glad I didn’t take the 6-8 week wait time for an mri and insisted on one sooner (got it 6 days later) or I dread to think what the outcome would have been

@BlackSwan thank you xx

Sending love to you and your family op

Sorry to hear that it’s cancer. Even though I know you said you expected it, it won’t have made hearing that your worst fears were right any easier. Thank goodness you didn’t wait any longer.

Glad you and your husband are able to get sleep at Ronald McDonald, it’s so important that you try to take care of yourselves as best as you can. Echo what a PP said, people will want to help and if you are able to give them a practical task it can take a bit of pressure from you, such as cooking/shopping/cleaning /changing beds etc.

Once they do the pathology etc they will have a better idea of treatment times as they can be different as can the medication. it’s very positive they managed to remove all the tumour. There are proton beam centres in Manchester, London and Essen in Germany and where you are allocated can be dependant on a few things (urgency of treatment, type of treatment and whether your DS will need to have a general anaesthetic or not). Where ever you need to go you will get accommodation.

If you want to read things online then the CCLG (childrens cancer and leukaemia group) site, Young Lives vs Cancer or MacMillan are helpful places to go. CCLG in particular has some good resources/books/videos for your other children too.

Sending lots of love to you all xx

I'm thinking of you and wishing your little darling boy a good recovery, you have a great family unit ❤

Thinking of you all OP and sending you all the strength in the world xx