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

Oh op! I’m so sorry to read this! We are all here for you! I’m so sorry you’re all going through this. I hope the treatment is successful for your ds.

Oh gosh I saw that BGT episode with Ravi, it was amazing and so motivating for my DC who also has medulloblastoma. I posted on your thread right when your boy had his first MRI, my child was on chemo at that time. I am so sorry he has relapsed despite treatment, it seems so unfair and so unpredictable, it feels like you didn't get much time off treatment to then be beginning again. Is he tolerating the chemo this time, Ive heard they try different drugs that are less bad sickness. I only know this from parents then, docs are really unwilling to give any idea what the protocol would be. I understand that spinal relapse is also better than brain relapse so I hope the chemo gets working and shrinks or stabilises.

Really sorry to read this @nearlymumof5 It's really not fair

Sending love and very best wishes to you all for as pain free treatment as it can be and as worry free for you as it can be. Speedy recovery to your little trooper ♥️

Thank you, and thank you for commenting all that time ago. I’m so sorry to hear your son also has Medulloblastoma. Yes it was only 8 months. His relapse is very rare as normally relapse is on the outside of the spinal cord whereas Kaidens is growing inside the cord if that makes sense? I’m hoping as it’s so rare and no research done it will give us better odds. Surgery risks paralysis from chin down, including the need for a ventilator, so it’s just not an option, radiation has the same risk now too. The good news is that he doesn’t have leptomeningeal spread so this buys us time. His protocol is currently oral temozolomide and IV irretecan. His cycles are 3 week blocks (wk1 chemo Mon - Fri, wk2 + wk3 recovery) and repeated. He’s coping so well with it and a lot less harsh than the previous protocol. His sickness is barely noticeable (although still on meds for this) the only real difference is his hair falling out. As always, we’re praying for a miracle x I hope you and your boy are ok xx

His protocol is called Temiri x

@nearlymumof5 so glad to hear there's no sickness, my DC is currently saying there's no chance he'd do any chemo again if he relapsed, due to the side effects before. Constant nausea means no quality of life and the quality is really important isn't it when quantity is not so certain. I think my friends child with ewings had temizolomide but could be wrong. Inside the spinal cord does sound unusual, I'm assuming they just saw it on the 3 month scan so caught nice and early. The idea of leptomeningeal spread just fills me with fear. You must be so worried all the time, and I guess the worry never really went away like it hasn't for us. I will be praying he is not worried and that you can feel after knowing he is having some happy times amongst it all xx

Thinking of you all op x

Sending you all my best.

I am sorry about the relapse. It is so cruel.
I hope the chemo does its stuff. Thinking of you all xx

I'm sorry. Thinking of you all and hoping chemo does it stuff.

So sorry to hear this. Sending love and prayers that the treatment works xx

I saw your little chap on BGT, what an absolute star he is!

sending love and willing that the treatment can give you lots more quality time together xxx

So sorry he's poorly again. Thinking of you all.

Ah Kaiden, you've got this!

So sorry to hear he's relapsed @nearlymumof5 , cancer really bloody sucks

I'm so sorry to hear your update.

I seen you on BGT, absolutely beautiful family.

I'm so sorry for your update. Sending lots of strength to you all.

I saw the BGT. It was amazing. X

So sorry you are having to go through this. Cancer is bloody brutal!
Your outlook is amazing and your love shines through.
Sending you and your family so much love and strength ❤️

Followed your updates since the beginning and saw your beautiful boy on the stand up to cancer film. Think of you all often and will continue to do so. Sending all the strength and love xx

Sending love OP to you, Kaiden and your beautiful family X