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

Just remember when your in the thick fug of it how many triumphs and markets you've now passed.when at the beginning of this you didn't no how to get passed that first call back!
Look at what you've all battled through ok.amazing.
We are of course all still here.if you can fight like you are from home. we can certainly fight from here😚
Keep going.keeo finding those moments of joy.

Thank you for updating OP. I've been checking back to see if there is news. I think of you and your son often.

Thanks for the update. Well done on completing the Proton Beam Therapy. I hope that your DS feels less tired soon. Everything crossed that chemo isn't too hard on him.

Thank you for keeping us updated. I was actually thinking of you and your son the other day so was nice to see an update. Sending lots of support and love to you all. You do have such a brave incredible boy. X

Thank you for the update, like so many I too think of you and your son often. Sending love and strength to you all x

Thank you for finding time to update us OP. Sending my very best wishes. We are all here for you.

I hope you managed to have a nice Christmas as a family OP and I hope his treatment is going well x

How are things @nearlymumof5

Hi everyone, again, so sorry for the lack of updates! It’s been so busy with treatment and life in general and I’ve struggled to keep up! I thought of you all this morning as today is a year since I wrote that post in here. It’s a funny feeling thinking back to this time last year and the terror I felt. And it goes goes how that even faced with something awful, there is light at the end of the tunnel. DS is now 8 and we’re currently in hospital having his 7th chemo cycle. In three weeks time he will have his 8th cycle which is his final one. THe scans are still showing as stable, he’s still very happy and enjoys coming in to hospital. I think he’s getting a bit sick of my face 🤣 as we’ve now spent every moment together for the last year! I’m still so grateful to all of you for what you did for me that day and what you continued to do when I was so desperate 💕

I have often wondered how your dear son is getting on, and the time goes quickly. It’s good to here he is stable and hopefully after all his chemo, he will be in remission for the rest of his life!
As you say the light at the end of the tunnel is getting nearer! What a little hero you have, still being happy after all he has gone through!
You are amazing to, so take care of yourself and people really do care. 😘🌸

Lovely to read your update! Hope it all continues to progress well x

So pleased to see your update scans are showing as stable. He such a brave boy, hopefully after last cycle you'll all be able to have a relaxing time.

Beautiful update @nearlymumof5! I think about you often and was wondering how you were getting on. Sending you and your beautiful boy lots of love xx

Really good to hear that he's stable and close to the end of his chemo.

So glad things are going well OP.

Thank you for updating us.

I am so pleased the treatment is going so well. Sending best wishes to you and your wonderful son xx

What a brilliant update! It’s a testament to you all that your DS is so upbeat and resilient. I hope this will soon be one of those memories that you look back on with disbelief. Wishing you much easier and happier times!

Im glad things have went well. Wishing your
family all the best.

Your DS sounds like a legend, in fact you seem like such a lovely family. I hope your son continues to do really well x

Hi @nearlymumof5 how are you doing? I've been thinking of you and your beautiful boy. I hope the treatment is going well and he is getting better day by day x

Guys he rang the milestone bell this morning 🥺 still a couple of bits to do in the coming weeks but his big chemo has finished! He is an absolute superstar! I am so grateful to everyone for all your kind words, thoughts, prayers and love over the last 13 months. What started as a small post when I was freaking out ended up being a great source of comfort. I would often re read all your messages in the months throughout his treatment xx
I don’t know if this is allowed, but here’s a pic of us this morning 💕

also - he broke the bell he rang it so hard 😂🫶💕

What a joyful update !
All the best for you and your family and your brave lovely boy

Thank you for your comment! Perfectly timed 💕💕

That's so lovely. 😊

Brilliant update, well done to a very brave boy😃