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?

Riven, we found a lump under my DD's armpit. She was absolutely fine other than that. With hindsight, she also had nightsweats (dismissed as: room too hot, duvet too thick, and taking after her dad!) and she was a total spit up monster as a baby (dismissed that as reflux, I now realise it was probably the primary tumour pressing on her stomach). Before all her imaging scans, none of the doctors that examined her could feel anything unusual in her abdomen or hear anything in her chest.

Hi Riven, we noticed DS was not using his left arm, and htoguht he might have erb's palsy, after lots of tests they coouldn't find any nerve damage, then he started choking on solids at about 7 months, so they did an MRI and found a tumour.

Fighting Dwarf thanks for posting. Your DD has been through a lot. I'm glad she's giggling next to you. It's really reassuring to hear how well children seem to cope with chemo and all this intrusion. We have met quite a few other parents at Great Oromond Street, and there is a lot of support there, but as DS is still 'under investigation' the support is kind of in the background at the moment. I guess they come into the picture more when treatment starts. Good advice about the hospitals, we are lucky in that our local hospital is about a five min walk away and we are a 30 min bus ride from Great Ormond street...but its costing a fortune in taxis when DS has been in for various biioipsies and GAs etc. DS sounds similar to your DD, we put down all the things that turned out to be symptomatic of cancer down to developmental things. I thought he just didn't like solids and that it wasn't that unusual for a baby to use one arm more than the other, it was my MIL who really pushed us to be insistent with the GP to gert a referral as our GP had said this was all nothing to worry about! I find it quite daunting that he is still on good form, but when he starts treatment its going to knock him for six. But if it makes him better then it has to be positive.
I am definitely starting to acfcept help when it is offered as it is hard juggling work, DD , DS and a million hospital appointments/tests/ biopsies. Luckily family and friends and work have been great, not to mention lots of lovely people on MN.
The hospital have given us a date for his third biopsy a week tuesday, so thats another week of waiting, then another week waiting for results...but we're getting there.
I really hope your DD's treatment goes well and send lots of love out to her. It's funny to think I was terrified at the thought of him having a GA for a scan about six months ago and now he has more GAs than I can remember!

The treatment won't neccessarily knock him for six. DD has been well for probably 90% of the the last 9 months. The doctors got on top of the anti sickness meds by the second round of chemo (she didn't have any sickness with the first dose). She's been in hospital with febrile neutropenia maybe 5 times (not counting the high dose, she's been spiking since yesterday evening), and she took a while to recover from her second op. Other than those times, she's been just like any other 4 year old.

I know what you mean about the GAs! This time last year we were agonizing over whether to put her though a minor operation to correct a squint (unrelated). Now she has a huge scar across her stomach, a scar under her arm with a rib missing, a gastrostomy and a hickman line!

The waiting is definatley the worst part when you're anxious to get on and start fighting this horrible illness, and to know what you're really dealing with. That's the point when your imagination can go wild. Once you start treatment, I found that you only look from one block of chemo to the next and from one scan to the next. And that's how I managed to miss the application deadline for DD's primary school place by 3 months...!

If you haven't already, get a diary that is just for your DS's treatment. We write down exactly what meds she has and the time, blood counts, transfusions, etc; any symptoms (being sick, rashes) as well as appointments, and questions we want to ask, phone numbers etc. We also use different coloured ink for when she's at home and when she's in hospital (makes it easier to see at a glance when we were last in).

FightingDwarf, thanks so much for posting about your daughters reaction to the chemo, its great that she has been so well and thats she's just like any other 4 year old most of the time. I hope she's feeling this evening.

Someone on this thread gave me really good advice; to take each day as it comes. It has really helped, I spent a good month doing far too internet research and getting way ahead of myself. The start of treatment , for me, I think symbolises the start to getting better. But have got used to the waiting because there is no other choice and I have to function as a normal human being on so many levels that being calm and rational kind of overtakes as a naturel disposition (with a good many weepy anxious moments in between).

Thanks for the diary idea too. I was carrying round hundreds of bits of paper and appointment letters and have now managed to put them into a file, but a diary is a really good idea to keep track. All the hospital stays seem to merge into one.

How does your DD cope with the hickman line? Is it easy to keep clean? Does she get irritated by it. DS is only 13 months and manages to pull out every canuala, so I don't know how I am going to keep his toddler fingers from his line.

How do you manage with socialising? Have you just made sure friends/nursery etc are aware of DD's situation so people who are ill keep away? My DD is nearly 3 and seems to have a cold or bug at least once a month.

Hope DD got her primary school place...that sounds like the sort of thing I'd do anyway! Am having to make an effort to be super organised!

One day at a time is excellent advice. Knowledge is power, as they say, so in a way, by spending this time to find out exacly what you are dealing with, you are already beginning the fight to make him well again.

K's hickman line (sorry, I can't keep up the whole DD/DS thing!) has never really bothered her. She was a little stiff and reluctant to move her neck for a few days after it first went in, and again when it was replaced last month, but she got over that very quickly. She's not too fond of having the dressing changed (usually it's once a week, but it's everyday during high dose). And we had to swap from giving her baths to giving her a stand up wash in a washing up bowl for a few months until we were confident that she wouldn't splash it and get it wet. At first she wore a little tubey vest thing (sorry, I've no idea what it's called!), it's like a tubular bandage that you cut to length and when you open it out it looks like a net orange bag! We used that to keep them flat against her tummy. she didn't like the feel of them moving when she wore the bag, but now she also has the gastrostomy there just isn't enough space for all the pipework going on under her tshirt, so we've swapped to the bag and she's fine with it now.

The social side has been a bit hit and miss tbh. Oops, I've just realised how late the time is - I need to get going and get back to the hospital, but I'll be back online later...

just noticed this thread and wanted to send best wisheds to hackney and fightingdwarf.

I have been on once weekly interferon injections- though not the same kind I imagine as mine are for MS but must be linked surely?

They make you feel flu ey and chilly but the more you take the fewer the symptoms.

Hope your children have a happy healthy end to 2010

Fighting Dwarf, hope your DD is doing well this week. Thanks you for sharing your experience about the hickman too. She really does sound like she is taking things in her stride.

Thank you also Girlsyearapart. I believe it is the same drug, interferon a? Thats good news that the symptoms lessen too. Happy health to you aswell.

Hi Hackney, sorry, I never did get round to answering your q about the social side .

K is doing great since Friday. Her white count and neutrophils have recovered, mucousitis cleared up and she's very nearly back to her normal self. Just have to get her eating a bit again, and then we can maybe start to think about going home.

Getting back to the scoialising. K is 4 so not at school yet. She was due to start nursery last September but we moved after her diagnosis and so lost the place. DD2 is 2 so she's only just getting to the age where we're thinking about her going to nursery. I would expect your DD's nursery to let you know when they have any bugs going round (especially chicken pox or stomach bugs), so that you can decide whether to keep her away or not. With friends, we've tended to avoid seeing other people as much as possible at the times when she is neutrepenic. At other times, people have all been really good about staying away when have colds etc. That said, you can only do as much as is practical - DH still has to take the train to work every day surrounded by people coughing and sneezing . TBH most of the infections your DS will get will be caused by bugs already inside him, and there's not much you can do to prevent those.

Have you got any more news yet after all your DS' tests? Or are you still waiting?

Fightingdwarf, am glad K is doing better. Hope you manage to get home soon. Thanks for answering my query about the socialising side of things.
DD goes to quite a small nursery, so was hoping, if we go down the chemo route, that they would let the parents know/ or us know what is going on in terms of kids coming in with bugs etc. I often pick DD up and there are kids there who really shouldn't be, and have temperatures/bugs etc. last year a friend of mine was out and about with her DD even though she knew she had chicken pox. These scenarios really freak me out. I work in a school too so come into quite a lot of contact with colds etc. I guess I will just err on the side of caution and am sure friends and families will be responsible.

We have a dog, am wandering if he would carry infection too?

Jude goes in for another biopsy on Tuesday. They want him to go in tomorrow night, but am hoping to persuade them we can just get there early on Tuesday. Its a needle biopsy under GA so should be pretty straight forward. Am pretty certain they will diagnose off the back of this one and decide on treatment. Think we probably won't get results until some time the following week though.

Is it hard juggling both children, hospital and your DH's work? My DH looks after the child care and I work full time, but find it impossible to leave J in hospital, so always end being the one with him. Am realising we are going to have to start taking this in turns. We don't have family near by who can help out so one of us has to stay with J and one with DD. Does your DH miss a lot of work? My school are very understanding and supportive, but obviously the children I teach need consistency, so am wandering what the longer term implications of working might be.

Right, must get off MN and try interacting with my children!

Hope your DD is doing well fighting dwarf.

Not much to update really. DS had his third biopsy, all went well and we were home by 2p.m. We get the results on Thursday, so am hoping the consultants will have made a diagnosis and decided on course of treatment... if not I think we might all go mad if we have to do another set of tests and waiting!

Thought I would update with really good news. We got the results fromt he latest biopsy and they came back negative for the markers for being malignant. Three different pathologist looked at the biopsy sample...no one is any nearer to diagnosing so they are sending off to other people. In th emean time, as DS is healthy (part from the tumour causing weakness in his arm and stopping him from swallowing solids) they have decided to monitor him, do another MRI in 12 weeks and take it from there. If the tumour hasn't grown they will ocnsider the interferon.
The Consultant also said that sometimes between 18-24 months young children can actually sort of out grow these kind of lumps. She had concluded that he must of been born with it and he seems to be finding ways of working round it.
So we are extremely relieved that for now they are happy to hold off treatment. We weren't expecting such good news at all so although we are still in a position of waiting and seeing it means that life can start to go a bit more as normal.
Thanks to all the lovely mumsnetters who have offered thier support, shared thier own stories and helped me get through the last few awful months.

What a huge relief for you. I have been watching this thread to see how you have been getting on. I remember when I was told my dd's brain tumour wasn't malignant, the relief was palpable