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Original poster

Called back to consultant after DS brain MRI continued

344 replies

nearlymumof5 · 30/06/2022 08:12

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

OP posts:
Freshair87 · 14/07/2023 22:23

What amazing news for your beautiful family

spiderlight · 15/07/2023 00:57

This is such a fabulous update!! So lovely to see you all and I love that he rang the bell so hard he broke it! 😆

BlackSwan · 15/07/2023 06:25

Beautiful boy! Really moving to see your picture. Wishing you all a much easier time of it from here on. x

Tonkerbea · 15/07/2023 07:25

Beautiful family, so pleased for you all. What strength you've all shown, incredible.

RethinkingLife · 15/07/2023 07:33

Many congratulations on this new. I'm so happy for you and your family.

comfortablyfrumpy · 15/07/2023 07:35

I am so, so pleased for you all. Xx

Alwaysraindropsneverrainbows · 15/07/2023 07:41

That is amazing news! I had a weird sense to make a post - so glad I did! Wonderful, wonderful news xxx

Nottogetapenny · 15/07/2023 07:43

Absolutely brilliant news. What a superstar, your family looks so lovely. Hope you all have so many happy times now!
We are always here to hear updates of how he is didn’t and all the nice things he will be able to do! 😀😘

Nottogetapenny · 15/07/2023 08:21

Doing not didn’t

CockSpadget · 15/07/2023 09:54

Aw what an amazing update! So pleased for you all. Will defo follow on Insta!

EmotionalSupportWyrm · 15/07/2023 19:29

fantastic update ❤️❤️

Perime · 16/07/2023 05:50

Wonderful update ❤️

OnTheRunWithMannyMontana · 16/07/2023 11:14

Lovely update. I'm so happy for you and your family xx

MuchuseasaChocolateTeapot · 16/07/2023 15:31

I love that he broke the bell! Obviously a superman! You and your family look so nice and happy, I’m really pleased for this update, thank you x

TheFormidableMrsC · 17/07/2023 18:53

Oh wow! I was just thinking of this thread the other day! This is lovely news! So happy for you, I know that end of treatment feeling very well. I wish you all peace and happiness going forward 💐

PS. I think I know your husband via a third party 🤣

impossible · 04/09/2023 08:32

Thank you for the update! I often think of you and wonder how things are going and am delighted to see your beautiful boy has come through his treatment.
Huge congratulations! What incredible resilience you and your family have shown.

Original poster
nearlymumof5 · 04/09/2023 11:54

Haha this is amazing 🤩@TheFormidableMrsC

OP posts:
Original poster
nearlymumof5 · 04/09/2023 11:56

Thanks so much everyone! He’s doing so well and his appetite is definitely increasing - we’re back in for an mri this afternoon and then hopefully a date for his central line to be removed - keeping everything crossed xx

OP posts:
Jabbitt · 04/09/2023 18:49

Aw fabulous news, @nearlymumof5! Hope the MRI went well this afternoon x

MuchuseasaChocolateTeapot · 04/09/2023 20:49

Fingers and toes crossed for great results from the mri. Thank you so much for the update x

Ratfinkstinkypink · 04/09/2023 20:54

I have everything so crossed for you and yours that I now resemble a pretzel!

Alwaysraindropsneverrainbows · 05/09/2023 16:16

How did you get on @nearlymumof5 - hope everything went well!

Beaboo82 · 12/09/2023 21:02

Just followed you on Insta! What a beautful family you have! Loved how he rang the bell and broke it!! 🔔

Original poster
nearlymumof5 · 13/09/2023 08:04

It’s been a week 💃 so he had his mri last Monday and there is no evidence of disease!! We had a big party for him on Sunday to celebrate his end of treatment and yesterday he had his central line out yesterday. He said on the way home from hospital he’s happier than ever 🥺 He will need MRI’s every 3 months to make sure it doesn’t come back and I think for the that’s the scariest as we’re now out of active treatment, but I’ve just got to stay positive! One of the chemos has caused high frequency hearing loss, so we will need to have regular check ups for that too, thankfully it doesn’t seem to be affecting his every day hearing. Oh and he’s managed to go back to school and is coping well, a few early pick ups and half days but he’s loving being with his friends! I managed to get some tickets on the Matilda lottery so today we’re off in to London for a special treat to watch his favourite musical. I’m so grateful for all of you for caring and being there since that day before treatment, I feel as if I have lots of strangers that are my friends, thank you xx

OP posts:
Allsizes8to14 · 13/09/2023 08:29

What an amazing update, I’ve followed your journey from the start and this is just the best news!