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

Thanks for the update OP. I don't have anything useful to add, but I'm so glad for you that he's home, and can very much empathise with the joy of being able to sleep in your own bed again. I hope next week's procedures go well.

So pleased that he is home. I really feel for you. It's awful for you all. I like the idea of maybe a TEAMS video call from his class that would be lovely. I'm sure his class mates miss him greatly too

Enjoy being home, OP. Rest up, take care. x

Great to hear he is home for now. So shocking for all of you but it sounds like he has a fabulous family around him and great medical care. When my DS was very little we had extended hospital stays including PICU. Another mum recommended I book into a spa once we were through the worst. I never actually did, but the thought of it kept me going! Wishing you all the best.

I've been thinking about you and your little boy sending love and hugs you've both got this ❤__

So sorry to read your update. My heart goes out to you all.

I’m sure school can include ds virtually in a lot of school life.
my dd was 9 when she couldn’t attend school due to being poorly, instead school would FaceTime her for class, and they’d even put their iPad on her desk so she felt completely involved. There was a big joke some days where the teacher would ask as to why she didn’t have her uniform on etc. She was able to answer questions and get involved. It really did get her through a dark patch.

sending lots of love and strength to you all. Will keep everything crossed for you for your next journey ❤️

I’m so pleased that your son is home. What a brave boy, and so lucky to have a mum like you. I thought of you when McDonald’s asked me if I wanted to round up the other day 😊.
Take care of yourself as well- we are all thinking of you x

Still thinking of you.

I have no advice, no words, and definitely can't even begin to imagine how you are all feeling, but just wanted to send you all a hug xxx

Sorry there's more treatment to come, but I'm glad he's home. I lost this new thread but I've been thinking of you all. Hopefully a little bit of normality at home will do you good. I bet his hair grows back thicker and curlier than ever after his treatment - one of the mums at our school had poker-straight hair before her treatment and now has a mass of spiral curls!

He’s doing so well to be home already, hopefully all being under one roof will do you the world of good.
Sending more love xx

Hey all, thanks all again for your lovely messages 💕 we’ve been home a week and have had lots of quiet time with friends and family. Sadly we lost my father in law to Covid last Sunday so it’s been very emotional to say the least. We managed to go and watch school sports day for half an hour where DS was able to start the races down the microphone, the children were all chanting his name and it made his day, I did well not to cry (I also won the mums race 😂)! He had a CT scan today which was fine and all good for his lumbar puncture and Hickman line fitting tomorrow. We’ve been told he’s a good candidate for proton beam therapy so praying we’re accepted pending results. He amazes me every day and I’m so so proud of him! He’s coping a lot better than I am! But on the whole we’re all ok ☺️

I am so sorry about your FIL.

What a lovely Sports Day that must have been (and congrats on the Mums' Race!).

Fingers crossed for treatment news soon . Your son is doing amazingly xx

Sports day sounds fabulous. Sorry to hear about your FIL. Sending love ❤

Condolences on the death of your FiL: I'm sorry for the added sadness it's bringing into your lives at this time.

Well done to DS for managing to participate in Sports Day and everything else!

Fingers and toes superstitiously crossed that you hear proton beam therapy is suitable for him.

So sorry to hear about your FiL - never a good time but this is especially rubbish timing. I don't even know your son but I'm really proud of him too! Thank you so much for the updates. I know we're all so pleased to hear any news and I continue to hold you all in my thoughts daily.

So sorry about your FIL but it's good to hear your update and especially that your ds is being so amazing, as are you by the sound of it. Lots of us are keeping you in our thoughts.

Thank you for the update. I'm sorry to hear about your father-in-law. You are going through such a lot at the moment.
You sound amazing, you are doing so well. Keeping you in my thoughts. ♥️

Just the thought of some kiddies chanting the name of your lad brings a tear to my eyes!! I can't imagine how emotional that must have been for you. Sorry to hear the bad news has continued for your family, it's the last thing you need and your husband must be distraught. It's hard work putting on a brave face so try and look after yourself as much as you can. Children are so resilient aren't they, your son especially so! Well done him ☺️

What an amazing lad, to have made it to watch sports day. The other kids chanting his name is an amazing image. Hope the LP and line fitting go smoothly.

I’m so sorry about your FIL. Talk about it never rains but it pours!
The sports day sounds brilliant and well done on winning the mothers’s race. Your boy sounds amazing and very well supported. You must be shattered.
We’re all thinking of you all and hoping this week goes well ❤️

Fingers crossed that the Hickman line is now fitted and that you get the proton beam therapy for him. I’m so sorry that more sadness from your FIL’s death has been visited on you all. Sending strength to you and the rest of your family xx

So sorry to her the passing of your FIL. It’s an awful time, whenever it happen, let alone when you are going through what you are with your dear son!
im so pleased your son made sports day at school and it’s lovely the children chanting his name. He and you must be so proud to start races and hear that, is shows how much he is liked and what a lovely boy he must be! Well done for winning the mums race.
🙏🤞He gets the proton treatment, and everything goes well. 🌺😘

here not her (sorry, flipping predicted text)