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

hear! I should of checked again and not too quick to post 🤪

Hey,he's not coping better.just differently.plus your carryingvyour own and his emotions inside of you!

Glad to hear your son is doing okay. Well done for winning the race 🥳!!. Sending you all lots of love and prayers ❤

rmhc.org.uk/donate/

I always donate in McDonalds but if you don't go there is a link here - they are an amazing charity x

Thinking of you and your family and hope everything is going as well as it can and that you get some good news soon.

Hello everyone! A good news update!! His Hickman line fitting went well on Tuesday and he has coped really well with it all. The hospital gave him special little cotton bags to pop the lines in to and he got to choose some pretty cool ones! I’m assuming these bags come from volunteers who make them for the hospital and I’m so grateful! We have had news that there are no cells in his spine 💃💃💃 so we are over the moon AND he’s been accepted for proton beam therapy in London starting mid august - I’m still exhausted but today I’m a happy exhausted! Currently trying to blitz the house and get rid of clutter to make things easier for when we’re busy with treatment - thank you again for all your ongoing support on here 💕 I will try to post updates as and when xx

Glad to hear that news nearly.

It definitely makes it easier when you know exactly what you are dealing with and you have a plan. You sound like the most amazing mum, sending love to you all xxx

Fantastic to hear he has been accepted for proton!! Amazing that he's able to have it locally also. My son had 30 rounds of proton for a brain tumour 8 years ago in the US. There's a FB page called "Proton therapy support group for all proton families" which is a useful network. And please feel free to PM me if you have any questions at any point.

Great to hear he has been accepted onto proton. Sending you all lots of support. Your boy sounds so brave (as are you!) xx

Really good news, I’m so pleased for you and your son. Thank you for your updates, we all want the very best for your son and will be waiting to read further updates of your good news 🙏🤞🌺

Good to hear you're going to be getting the treatment you hoped for. How lovely of the school to include your DC in such a thoughtful way on sports day.

I am delighted to hear this thinking of you all 💗

Oh, that's great to hear! Hope you can take bit of time to rest and look after yourself, too.

Pleased to see your positive update. I hope you get to enjoy some relaxing time together before the proton therapy starts xx

Well done, Nearly Jr. You're a little champion.

What great news and such a relief. I hope you carry on getting these good wins

Your ds sounds like a real trooper! I am so pleased things are going the way you hoped and a, wishing you all the very best. Please do try to find a little ‘ me’ time and I hope you have some fun times with your ds to get you all through this. X

I am so pleased to read your update. I cannot begin to imagine what it’s been like for you all and have found your posts very emotional. Wishing you all the very best outcomes.

So pleased you have some good news. Sending you all lots of hugs and strength for your journey. Your son sounds like he is doing amazing and coping very well.

💕💕💕💕

So glad you've had such better news! My friend makes those little bags for our local hospitals, they really do cheer the kids up getting to pick ones in their fave superhero material etc.
All the best the positive news continues!

Brilliant news so happy for you all, you must be bursting with pride for your little man x

Positive news op! I’m just so glad that things are moving quickly and hope that reassures you given your previous experience trying to get him seen!

If you go to wigglyt.org.uk he can have a free custom made t-shirt which allows easy access to his Hickman line. He will also be able to get a custom painted pair of converse designed exactly to his likes/wishes from a place called Supershoes. Little things in the grand scheme of everything but things which are often a wee reason to smile amidst everything else!

What a lovely positive update. Your lad is a star.

Oh your update brought happy tears to my eyes. What positive news. Thank you so much for sharing these updates. Sending love to you all and tell your son that he has an army of admirers out on the t'internet thingy who think he's a superhero!

That is good news, @nearlymumof5 ! Thank you for the update. Tears in my eyes too. Your lad really is a star, as are you.