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

to you and your family, OP. I'm amazed at how well you are advocating for and fighting for your son. He's so lucky to have you.

I hope your ds has a good night tonight and continues to get stronger. Sending strength to you all for the time ahead.

Keep going op.there will be an end to this.xx

Sending love and strength to you

Just read your updates. I’m so sorry it’s bad news. With you as a parent your DS is lucky have have someone who is in his corner and not taking no as an answer. Sending you lots of support and love. You are all very brave xx

Thank you for taking the time to come and keep us all updated on your precious boys progress. Thinking of you all.

Hope he gets a treatment plan put together soon so you can start moving forward. The Jake animations on brain tumour charity website are really good for explaining the different types of treatment to children.
For yourself, you can find the NHS criteria/protocol for funding proton therapy online, the paperwork they use to make their decisions. If he meets the funding criteria, it would likely be whether Manchester can fit him in. UCLH are not yet taking the more complex cases yet as they only started earlier this year. If for whatever reason he doesn't get proton, don't be too downhearted. For medulloblastoma, they have to do the whole brain and spine anyway so the difference in late effects is less than with other brain tumours where they only treat the tumour area. There is also no difference in cure rate between proton and photon. As you know, the key thing is getting it started within 40 days, as that makes a real difference for medulloblastoma.
Keep rolling with the punches and don't put too much pressure on yourself.

Thinking of you all xx

A colleague of mines toddler went to Germany for proton be treatment and it all went really well
This was a few years back and her little girls is doing really well keeping everything crossed for you all x

So sorry to hear this news OP. I hope you can get your sons treatment started as soon as possible.
Sending you, your son and all your family lots of strength and support 🌺

Wow op must be so much to take in sending strength and healing for you all

Sending you lots of love and strength..

Still thinking about you all, hope your ds is continuing to recover from the operation and sending you strength to deal with the next step

Sending love to you and your little boy.

Sending love to you and your family.

I am sorry about the diagnosis and hope you get your DS's treatment plan v soon x

Still watching this thread and hoping for the best possible outcome for your son, I have to say what an amazing mum you are for advocating. I know how hard it is to push (especially when they push back) but it sounds like you've saved your boys life!

Hi everyone, we came home yesterday and DS was so happy, hospital really did get him down towards the end of our stay. We will be back next week for his lumbar puncture and Hickman line. We told him yesterday that he will need to have more medicine to stop more lumps growing, and had to talk to him about loosing his hair (his hair is his pride and joy, long and curly and just gorgeous), we also had to talk about having more stays in hospital. Approaching it gently with him. I cried this morning as I drove my 2 year old to the childminders as I had to drive past his school as all of the kids were going in. He should be there enjoying his last couple of weeks of school but instead he’s facing a battle that’s inconceivable, thanks all for being here, it does really help me xx

my sons friends made him videos,etc. Can teacher do something nice?

This is so hard. You will have points where you just break down without warning. I remember feeling the huge injustice of it when I took my son to the playground the same day as being discharged from hospital: there are the sick children facing the assault of treatment, and the thankfully healthy kids swinging and sliding down the slides.

At 7 he will be quite aware of what's going on and the effects of treatment - it's perhaps easier when they're a bit younger. But it's good that he is 7 frankly, if he needs radiotherapy for instance it's better than having the treatment on a much younger brain (under 4 is worst from memory).

Take care of yourself.

So much for you all to take in and to face. Have a darn good cry if you need to.

I don’t have any experience of what you’re going through, the closest I came was having premature twins and my husband and I decided to just focus on them and forget everything else. Tough times make you re-evaluate everything. If you can no longer have a summer holiday this year plan something cool for Christmas or spend the money on revamping the garden with toys or a pool for the children and lovely furniture for you or a tv and games console for DS, anything to make this time more bearable.

thank you so much for your update, I think about you and your family every day and pray that your son responds brilliantly to treatment and this will be nothing but a horrible memory this time next year x

Glad you’ve managed to get home.

My son is also a cancer patient, although blood cancer not brain cancer. He is a little younger but we’ve found the play specialists at the hospital are very good for advice/help explaining procedures and treatment to children. It might be worth asking them for advice if you think you need it.

Good luck next week. The Hickman line really makes a difference, so much easier for taking bloods and giving chemo!

You will ALL have moments where you feel and might go nuts.your bodies,minds are processing every dam emotion possible.and your son isn't event chemicly,bodily made yet to cognitively deal with this crap so expect lots of all over the place from him.
Maybe teach him about the fight flight response.because I think that,which brings fear, dread,doom and the inability to think clear might be scary for someone so young who hasn't been taught this important bodily function.im sure yoyr having it too.hes been through a huge risk so the body will keep trying to fight or flight.which shut other things down and heightens others.it make you jittery,angry,needing to escape,belly aches,nausea fear.anf it's all the bodies current way of protecting itself about the potential tiger it's expecting after tiger threat number one (cancer) it's trying to help him get prepared to use only the resources in him to run away or fight to freedom.
So some good breathing techniques might help.and some guided videos out there for calming down can be fab.
Also the need to keep sharing.the more he runs from his emotions the bigger they will become.
And for you lot too.keep sharing everything.right down to the absolute irrational gobble Dee gook.

So pleased he’s home. That will work done magic on all of your mental states. Good luck with all the next steps and keep breathing your way through each one. He’s in great hands. At home and in hospital xx

Thank you so much for the update. So pleased that he's back home. There's nothing like your own bed whether you're 7 or 70! I guess this is one day at a time stuff. My thoughts are with you all and I hope that the forthcoming treatment isn't too tough for him. His hair sounds amazing. It will be amazing again.

Hi OP, sorry to hear your news. Just a thought, if he's up to it, can your dc's teacher arrange some sort of video call for him? Maybe during morning redistration or story time, they could have him 'attend' assemblies or sports day or something, might help him to feel less isolated from his friends? I know during lockdown kids got used to some crazy things, this could be a great way to put those tech policies into good practice. Perhaps some of his friends will be feeling a bit strange about the situation and could use some reassurance, and no doubt your ds could use the familiarity. Done properly and thoughtfully, and at your and ds's pace, this could be incredibly comforting to him (as long as he is able).

Please do lean on school, they could be a good source of support to you all.

Good luck xx