Not sure how to feel

Hello KJ74 

I'm so pleased for you that your daughter's arm is now cancer free.

I don't have any experience to share but I just wanted to reach out to you.

There are some amazing people on this forum who will be able to reassure you and offer their support. Just be patient x

Big hugs to you both.

Xxx

Hi kj74 

Mu 8 year old son has just been diagnosed with ewings sarcoma in his right humorous. I'm lost and terrified and wonder if you could fill me in on all the treatment your daughter received and how is she now? 

Im so sorry to hear about your son. I hope you have got some support at home. Mia had 14 rounds of vdc/ie and 6 weeks of radiotherapy. It took about a year all in all after some infections etc. She had her surgery at round 9 amd then had the rest of the chemo once she had the op to take out the tumour. Luckily we had 99% clear margins and the tumour hadnt spread so its looking as good as it can. They took out her whole humerus but the original plan was just to take a section out so be prepared for things to change from the plan. In reality we lived from week to week and it waa more about keeping her healthy enohgh to do the chemo for the next round. We spent a lot of time in isolation so having a switch or ipad is a must. Time goes differently in hospital for kids! And most of all you will need to look after yourself. Im a single parent so if you have a partner try and take it in turns so you can get some rest. And when emotional support is offered take it! Try and get some help with dla forms and ask for a blue badge . I didnt realise we would need a wheelchair so much at the start and we have only kust stopped using it. X

I’m sorry to hear about your daughter. I hope she’s doing well. Did she have any joints replaced with her humerus?

Hi Lee

Thanks for your message. She had a full humerus replacement initially but the implant failed and after several revision surgeries, she opted for amputation.

It was areally big decision and was nothing that the surgeons did wrong. Unfortunately the implant just didnt take and disclocated out of her shoulder. 

I will say that we wouldnt have done anything differently , it was just really bad luck the implant did not fit her very well and popped out. 

She is now living pain free and has a 'fake arm' for when she feels like being fancy!