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?

Thought I would keep updating this thread in case anyone is searching for info in the future and to let everyone know how DS is doing.

DS is going into GOSH tomorrow for a further biopsy, this time they are going to make an incision and take a large sample.
We spoke to the consultant oncologist at GOSH this week and they are now saying, after conferring, that they are pretty shore it is a nerve sheath tumour and are hoping the biopsy will confirm this.
The biopsy is tomorrow. DH is going to stay with him in the hospital, its always been me who has done this in the past, so I thought we should swap and take it turns...but not sure if I can...have only spent one night apart from him since he was born ...and that was our wedding night!
On tuesday he should be allowed home, he has a SALT consultation at GOSH in the morning where they are going to xray his swallowing and see what is going on. The tumour has really distorted his esophagus so he on a strictly liquid diet, which is hard all round as he gets so excited when he sees food and he can't have it...but am doing my best with the liquidiser.
We have also been provisionally booked in next friday for DS to have a hickman line inserted, so I guess things are starting to happen pretty quickly now.
It still feels very unreal, my DS seems so healthy and full of life and I guess this treatment is going to change that for the time being. However, I have heard so many reassuring stories from other parents who have been through similar situations, and people sharing thier experiences on this thread, so I am staying positive. I think you can't be anything but positive in a situation like this otherwise you wouldn't find the strength to cope. Someone on this thread earlier said 'take each day as it comes' and its true, we're taking it day by day and it really helps to think of things that way.
Thanks for all the replies and good wishes, they are very much appreciated.

Laughterlines, got the replies to you rpost deleted as they had my email address, but just wanted to say thank for your email, it was very helpful.

I'm glad I could be of some help and please do email me if you need to ask anything else.

I wanted to say that I hope tomorrow goes well.

Well the biopsy went well and DS recovered very quickly from the GA, even managed to persuade the Dr to discharge us in the evening so we didn't have to stay.
The biopsy results are due tomorrow, but the Dr is assuming its the malignant nerve Sheath Tumour, so unless we hear otherwise we are going into GOSH tomorrow night, then on friday morning DS will have his Hickman Line inserted under GA.
I have about a million questions to ask the consultant so am hoping she will see us when we are admitted tomorrow or phone in the afternoon. Now that all this is actually happening it seems quite surreal, but I just keep on saying to myself, 'the sooner we start the treatment and get things moving the sooner DS will be better.' He appears so well and healthy though and I know the chemo will knock him for six to some extent. So am utterly terrified but also strangly relieved that things are getting started after the longest diagnosis in the world.

Much love to you all, thinking of you and hope Friday goes well.

Oh I am so sorry to hear this...I don't know much about it but I hope that this is one of the more treatable and curable forms of cancer, so that your little one can be well again very soon.

You are right, the sooner it is started the sooner it will be done with and you can look forward to being back to normal...

interferon can be tough from what I have heard, but they can help with many of the side effects, and some people don't find it bothers them anyway...I hope he takes it really well, if that is what he ends up having.

Please take care of yourselves, all of you...we are all thinking of you xx

Hope it all goes well tomorrow hkz, thinking of you and your family x x x

Good luck today, thinking of you! xx

bookmarking

Hope it went ok today.
Best wishes.

Thanks for all the good wishes. We went in on Thursday and saw the consultant as soon as we got there, who told us that the surgeon missed the tumour on Monday and took a biopsy of healthy cells instead, but they had only just found this out. (Am a bit as to why they didn't ring us earlier in the day to tell us rather than letting us trek all to the hosp with a load of bags) She said that her team were divided about his treatment as the biopsy had not confirmed the type of tumour and the two other ocnsultants think she should wait before starting chemo just in case her diagnosis is wrong (I agree!). Rather than take another sample (as it is in such an awkward place) he is going to have an MRI to map the growth since his last mri, ne type of tumur grows faster than the other). So the hickman line has been put on the back burner until the scan. There is a massive waiting list for the mri, so we are hoping for a last minute cancellation and he is down as urgent.
So back to waiting again. DH and I are so knackered and run down, that we are trying to put this to the back of our minds and have a normal weekend...not very successful so far as people keep ringing to see how he is!
Roll on the MRI.

I'm not relly very knowledgable byt my friends' DS had a tmour on his liver identified at 6 months. He was brilliant with the treatment - had chemo - very rarely moaned.

It was quite hard on the siblings if I recall.

Friend said Clic Seargent were very helpful. www.clicsargent.org.uk/Home She got a care grant (about £200 I think which helped with train fares to GOSH) and also lots of advice.

sorry about spelling

Oh how awful for you HKZ but at least they are doing a scan and not another biopsy. Fingers crossed you get a date soon.
Tell the importnat people and then switch off the phon. Or set up a phone tree where you ring one person and they ring another and so on. They used to have this for ski trips when I was at school and would mean you only have to tell the story once...

HKZ - Any news on the MRI?

(And keeping this bumped for you)

Thanks for the link EVye, tis very useful.

Good idea with th ephone tree gumps, I might do somethng like that or just send a mass email every now and then.

lenni, just got an Mri appointment through today for...tomorrow, so back to GOSH tomorrow morning...am sooooo hoping for a definite diagnosis now, before I go mad! The waitong is driving DH and me insane, we try to keep it at the back of our minds as there is so little we can do, but I think we are both knackered from keeping it together. DS is absolutely fine and full of beans though!

Thinking of you this morning. Hope you get some answers.

Good luck today. Hope it all goes well. Have been thinking about you all day, but haven't had chance to get online.

Thanks for the good vibes guys, it went fine and was pretty uneventful Met some other parents on the ward who were all very friendly and full of lots of reassuring experiences. So back to waiting on results again.

Glad it went well HKZ - when are you expecting results? Will there need to be another biopsy?

hopefully sometime in the next 4 days, don't think they will do another biopsy if they can diagnose from the scan by looking at growth rate of tumour...but am not entirely sure.

Good news for a change Jude's scan results came back and his tumour hasn't grown, which suggests it is less aggressive than they thought. So rather than launch into chemotherapy they will do one more needle biopsy, as the lack of growth is suggestive of the tumour that doesn't necessarily need intensive chemo. So although we are still waiting for a firm diagnosis I am happy for them to do further investigation if it will avoid unecessary treatment.
So for once we might have a slightly relaxing weekend.

yay! Enjoy your weekend x

Hi Hackneyzoo, I'm new to Mumsnet, this is my first post

My DD was diagnosed with stage 4 neuroblastoma in May last year. She had tumours in her abdomen and in her chest with hotspots in her skull, pelvis and legs. Nine months on and she has gone through 10 weeks of intensive chemo, 2 operations (not including biopsies, hickman line insertion and reinsertion after the first one got a hole in it) and of course more scans than i can count. She's now recovering from high dose chemo with stem cell rescue - I'm sitting next to her bed in hospital right now while she is giggling away to Gigglebiz!

All the way through her treatment she has bounced back from everything that we've thrown at her. The chemo didn't make her too sick (except the high dose at the moment). She still loves to run around with her little sister, and she's always busy doing things even when she's stuck in bed in isolation.

I second the poster that mentioned CLIC Sargent - they have been fantastic. In fact everyone who's been involved in her care is amazing.

The best bits of advice I can think of are to keep finding the funny side wherever you can. Accept help from anyone that offers. And try to move closer to the hospital! That last one is probaly not that helpful actually, but we were living an hour away with care split between 2 hospitals (which was never going to work!) so we put the house on the market and rented somewhere a couple of streets away. Made life a million times easier, especially with all the snow!

Feel free to ask me anything, I'll help if I can.