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

Thinking of you all OP. ❤️

They are an absolute lifeline.
We spent nearly 2 months in one.

• It meant we could swap and get some rest.
• Cook food
• shower
• Do laundry (which was every day at one stage as little one was vomitting a lot)
• our eldest could come and stay, and spend some time with her sister (visitors weren't allowed on the ward)
• they sold toiletries at very cheap prices, essential when you don't want to leave to go to a shop, but arrived in a hurry
• they help you celebrate special events - I was given a box of goodies for international women's day, they had pancake mix and toppings for pancake day, books for siblings for world book day etc
• they gave gifts to my eldest - craft things she could do when hanging around, and made a fuss over her.

-my poorly little one could (when well enough) come over in between physio, medicines etc, so we could have time together, and so she could soend some time away from the 4 walls of the hospital ward.

We didn't need to, but they'd help hold birthday celebrations for kind who were such in hospital on their birthday (small ones with family etc, obviously not huge all class parties of anything unrealistic)

They are an amazing charity, and like so many of us, I didn't realise write what they did until I needed them.

Please top up.

So good to hear from you ok.

I tend to round up, but this has made me realise how important those funds are, thank you for taking the time to update OP. Hoping you all have a restful evening and night x

Wishing you all the very best sending hugs

Have been thinking of you OP.

Anyone who uses the McDonalds app to order nowadays you can also add a donation on there. So worth it.

Thinking of you OP, glad you’re in a house and I hope your son has a good night. 😊

will deifitely round up do you just ask them when you pay

the little boxes have disappeared since covid

Just read your latest updates. I.am so pleased to hear your latest update. Your thread has brought many tears to my eyes. I will always round up at McDonald's from now on. Thinking of you & your family.

Coming out of hiding after your last message, OP (read your posts from the start).
It's really interesting to read about the Ronald McDonald's Foundation from the other side. I'm involved in cancer research and only have first hand knowledge of it through the two -80°C freezers donated to my university's hospital. With all the recent budget cuts in my third world country, we really wouldn't be able to have these freezers if they hadn't been donated.

Really hope your son continues to respond well to the treatment. I'm thrilled you're getting such fantastic care and support.

How are you @nearlymumof5? It’s absolutely exhausting having a child in hospital at the best of times, let alone when it’s all so rushed. Hope you are managing to rest too.

Thinking about you all and hoping your brave DS has a more comfortable day.
I will also round up at McDonalds and tell my kids to spread the word. Anything that helps at the most challenging of times deserves full support. 💐☕️

I’m so pleased to hear your updates and that your older dc are able to be with your younger ones, that must be a big help.
dc1 persuaded me to get a drive through McDonald’s last night so I threw my lose change in the collection thing, I hadn’t seen an option to round up but will ask next time.
friends stayed in the cardiff one a few years ago which is relatively new and said what a godsend it was so I’ve donated since then.

please only keep us updated when you feel up to it xx

Hey everyone, we had a very bad day yesterday as we were told the early findings in the tumour showed it was Medulloblastoma. They need the full results and a lumbar puncture to determine the strength and length (I think) of treatment. That will be both radio and chemo. We knew it was coming but it still hit us like a ton of bricks. On the plus side we were moved out of HDU and back to the ward, it felt like we were coming home. DS is currently sat in his bed watching his iPad and a lot more perky! He’s off intravenous painkillers and is now having paracetamol, ibuprofen and oral morphine. He’s in pain still but is doing so well. His feeding tube was removed and he’s managed a small amount of food. We also had a visit from 3 of my younger children (big sis, 2year old and 13 year old) along with my mum. It’s been a lovely day but I’m emotionally and physically wrecked. Myself and hubby did manage to eat today just a few minutes ago which is an improvement. Hubby is staying in the ward tonight and I’m going for a sleep at Ronalds. Thanks again everyone for your continued supportive and helpful messages! Xxx

Great news to be back on the ward.
Hope you manage a good sleep tonight.

There are no practical words I can add but I'm reading and thinking of you and sending strength and hugs,

No one wants to hear that news. Any words sound trite but I’m glad he’s back on the ward and feeling better. You know you’re in the best place and you sound such a brilliant family. So sorry you’re going through this. One day at a time ❤️

I'm so sorry for what you are going through I can't say anything to offer comfort however we are going to McDonalds tomorrow and will put a donation in while there thinking of your son and family

I am so sorry to hear that it is malignant. Like many on here, I will be hoping/praying for the best possible response to treatment for your DS. It is lovely to hear how well he is doing after his surgery.

I'm really sorry to hear that and hope and pray that the next set of results show that it's one with a great response rate.

Remember that they did get it all out when they operated, so hang in there.

Thinking of you all.

Thinking of you and your son. Let's hope the treatment is successful - it sounds like they are doing well so far. Thanks for the update.

Not the news you wanted to hear - glad they managed to get it all out, hopefully treatment plan will be soon and then you will know what you're dealing with x

Have been thinking of you all. Sending so much love and strength. 💙

Thank you for updating with a second thread OP - I can’t even begin to understand what you’re dealing with right now. Those results are not what anyone wants to hear about their child but he’s in the best place and will get the best care ❤️
Thank goodness for you not ignoring his symptoms and pushing for investigations! As awful as this all feels - they’ve found it, they’ve managed to remove it, they know what they’re dealing with and they can make a plan 💐

Sounds like you have a lovely family too. Lovely that your older ones have managed to step up and help out with the younger ones and let you and DH focus on your DS.

Will be thinking of you all!

Stay strong OP. We are all thinking of you and your family. X