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?

Oh crikey . I don't have any experience, but just wanted to wish you (and of course your DS!) all the best. Must be utterly terrifying for you.

No experience - bumping for you and wishing all the best for a positive outcome.

Sorry I have no experience of this but just wanted to say how sorry I am to hear this and wish you and your family all the best.

No experience, sorry,, but just wanted to wish you all the best x

I hope someone will be along soon who has had experience of this and can help you.

I just wanted to wish you all the best for what must be an awfully worrying time

Take care xx

I would hope that GOSH would have not only a parent support, but sibling one too.
I've not had any experience of this, but truly want to wish you a positive outcome.

With very small children and chemo, the main thing to remember is that they go up and down very quickly - so they may be much weller than you would think a lot of the time.

The side effects really depend on the drugs and doses used, so it's hard to say what might happen. I work in oncology, and have had two friends whose very small children have had cancers (and are both long term survivors), and their journeys were quite different.

In terms of explaining to siblings, the approach of 'DS has a poorly bit in his neck, and the doctors need to give him some very special medicine to try and make it better. It's going to take a long time to make it going away, and will take lots of visits to hospital' seems to be a good tack.

There are some virtual support groups for rare tumours on the web - I know one of my friends has found it to be great both during treatment and then afterwards.

Good luck

Goodness, no advice, but what a difficult time for you. I really hope that DS will be ok.

Good luck, and big unmumsnetty

Hi HKZ

Just coming to say hello from the postnatal thread and keep you well bumped!

I bet there will belots of support group type things at GOSH. when you are fit and able to face sorting it all. For now lay low and see how next week goes. Do you know when it is?

I', so sorry he can't eat, that must be very very hard for you. x

Glad to hear the diagnosis is progressing towards treatment, sorry that the treatment sounds so scary.

Hi HKZ

Just popping in to add my support. Am here for you either on this thread or the postnatal one. x

Thanks for all the good wishes.

Riven and Kreecher, GOSH does have lots of support and we have a sort of liason nurse person who we are meeting with next week, I just wanted to find out a bit more before we go in again.

Thanks CMOT, thats good to know about your friends and good advice ofr telling a toddler what is going on, will try that apporoach.
Everyone we have seen at GOSH has been very positive and supportive...I just really want to know more, but I guess its just a question of waiting and seeing what the results of the next biopsy are etc.

Hi HKZ- just popping on to add my support. Hope you can talk to some people who ahve been through it, there must be so many unknowns for you. Hope J has had a good day today and you have been ok xx

No experience just wanted to bump this and send you my best wishes.

Sending you best wishes. Does your Ds have NF? It causes neurofibromas, my DH and DD have NF1.

I'm here too. No help but a big shoulder for you to lean on.

Coco, he doesn't have NF, or at least has none of the other symptoms for it apart from the possible neurofibroma and it doesn't run in either of our families. Hope your DD and DH are well.

Thanks Books, I think they will tell us a lot more in terms of support when we go in again next week or the week after, but thank you. Hope your friend's DS is ok.

Adding more best wishes.

I don't have any experience of infants and interferon, but I had 12 months of 3x weekly injections and am happy to tell you my own experience if that helps. It was very do-able, overall.

The other sorts of chemo I know nothing about, but am sure others will.

Big hugs, and I think if anyone can find the best way of dealing with it, GOSH can. xxx

Re NF: dh's brother had one of the NFs (not sure which) and it doesn't run in their family. It was a spontaneous genetic mutation. That alone isn't necessarily that important, but the lack of other symptoms probably is.

Just adding my support hkz and keeping this bumped for you. Thinking of you, J and the rest of the family. Much love x

I am so very sorry you and your family are having to deal with this. My DD2 had a brain tumour which was so rare the surgeon said he had never seen that type of tumour in a child before - not that it makes any difference when dealing with it but I suppose it is the lack of info which is hard.

I have had many visits to GOSH and they have been very helpful and supportive and are probably one of the best places to be when dealing with serious illness. When my dd was first diagnosed one of the nurses said to take one day at a time which did help with dealing with the shock etc. Try and make use of any support offered

DD1 who was 7 at the time found itvery difficult dealing with me and her sister being in hospital and I used to try and spend time with her on her own. The hospital allowed her to stay over at times and make a fuss of her which was also helpful.

Thanks Eli. It's good to hear the interferon is do-able. How did it make you feel? I know it will probably be different in a baby, but am interested to know if you don't mind talking about it.

I am sorry you have been through a similar experience Harlot. The lack of info is frustrating because my natural instinct is to find out as much info as possible about everything and there just isn't much.
GOSH is one of the most positive places I have been, the nurse, doctors and other parents we have encountered have all been very supportive, calm and informative. I am really trying to do one day at a time, but keep on racing ahead with all the what ifs.
DD is nearly 3, so am hoping she will just take thisin her stride, but think we are going to have tomake sure she gets some 1:1 time where the focus is just on her.
I hope your DD is ok now.

myfirends 2 year old son was diagnosed with cancer of the testicles. He underwent so much chemo and treatment. He was in hospital more than he was home. He was so resiliant and put up with so much intervention. They are tougher than you think. I hope the treatment works well and quickly for you DS x