12 month old DS diagnosed with malignant tumour, anyone have experience of this?

[hackneyzoo]

After two months of investigation my DS has been diagnosed with either a neurofibroma (nerve sheath tumor) or an epitheloid haemangioendothelioma. They are doing a more extensive biospy next week.
After seeing the consultant as GOSH yesterday we have been told he is either looking at 12 months of thrice weekly interferon injections or a 6-9 month course of chemotherapy, both with the idea of shrinking the tumour so it can be surgically removed.
At the moment the tumor is pressing on his esophagus so he can't swallow anything other than liquid. It is also entwined in the nerves in his neck resulting in limited use of his left arm.
Both these tumors are so rare in infants its hard to find much info, even the doctors can't say much.
Can anyone tell me how young children react to interferon or chemo? Has anyone had experience of similar tumors? How do you explain what is happening to young siblings?

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Aly, thats reassuring to know. Docs and nurses keep on telling me how resiliant small children are too.

Just thought I send all my best wishes for a healthy 2010. Good luck.

Thanks youwillnotwin, that would be great. I am glad oyur friends DD is doing well now.

Bump for the late night posters.

GOSH is a wonderful hospital and very supportive, so your in good hands. I dont know wher in UK you are but i know St Albans (about 30 mins from GOSH) have a wonderful Macmillian centre where you can get access to family therpy, work with you and the other children. I know that they also have other centres around the UK, so really worth checking it out.

HTH

Thanks Lisa. We are in London, so not near St Albans, but have such admiration for Macmillan. They were amazingly supportive to my mum when she had terminal cancer and were a real comfort to my whole family. I have found thier website really informative too.

Bump for you and sending you my very best wishes and hopes that things are soon on their way back to normal x

Thanks nickschick.

Bumping for you - hope there are others with direct experience out there.

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What a worrying time. I hope you are doing OK.

I do have experience of going through surgery and chemo with a child. I'm happy to contact you if you think it would be helpful.

Hi HKZ, hope you had a good day out together at the weekend. Just popping into to add more support and bump the thread for you.

Very sorry to hear of such a difficult diagnosis. I have no experience but I did have a friend at the Marsden a few years ago and spent a lot of time there with him. I often saw little kids, shiny bald heads from chemo, piled into wheelchairs, screaming with laughter and having races up and down the corridors.

I am not being flippant about the times they are very sick, but children deal with things differently. I'm sure the support you will get at GOSH will be excellent in terms of emotional care for all of the family even if the tumor is a rare one.

I have also had great support from Macmillan for my dad.

Truly hope things go well for you and your family.

Hi Hackneyzoo - I will definately email you tomorrow as I have only just had time to log on tonight and I want to make sure I give you as much useful advice as possible.

Hope that you and your family are doing OK.

Hi again hackneyzoo, I've tried to email you but address not recognised. Where are the dots in your address?!

Ok have sent you a message