ds (2) has a rare cancer. top tips from those in the know please

[mmmmsleep]

so ds aged 2 has just been diagnosed with cancer. I know there's a thread for those with children with cancer but I'm not ready for it yet. There seem to be many on there who are much further down this path and I'm not ready to read the stories yet. so my question is any tips for helping your 2.5 year old child understand cancer, chemo and it's side effects? how did you prevent your child becoming a social recluse? obviously there will be times we can't mix with others but I'd be keen to know how others managed it.

thanks in advance

Sorry to hear your news - you must be in a dreadful state of shock. I have posted on the children with cancer thread asking someone to come over here and join you on this thread. Hope that's ok.

Wishing you and your ds all the very best over the coming weeks and months.

Hi (and thanks justmuddling) I'm from "that" thread. You are welcome at any time, and if it's never the right time, of course that's fine too!

DS was just 3 when he was diagnosed. His treatment is very full-on so it's been hard to keep up with his friends. I can't pretend he has but we see them whenever he's feeling well enough and they're not sick. Some treatments are longer but less intense and children are better able to go to school/ nursery between times and see their friends.

We haven't gone in to too much detail re: side effects. I am anxious that he doesn't associate "medicine" with feeling unwell, but that's our choice as a family. There's no right or wrong way. I've found he doesn't really question things and tends to accept that his hair fell out, that he's nauseous etc without much question. When he does ask, I answer honestly though he has no understanding of the possibility of what could happen.

The news is such a shock. I hope you're taking time to look after yourself, eat and drink too. Sending you a big hug.

My son was just 4 when diagnosed with ALL (Leukaemia) and we're only 3 months down the line (feels like yesterday he was diagnosed).

He feels like he does that day. So some days he has lots of energy and wants to play with other children, some days he feels less well and just wants to stay with me. It's almost the "good" thing about them being so young - there's not that build up of knowing they're missing out on "normal life".

I just avoid people who are actually unwell and observe sensible hygiene issues.

I'm so sorry you are going through this but please do join us when you are ready to do so. I wish you much strength for the next few days and weeks. xxx

Oh and I just explain things in a natural way. Alex is a wee bit older but he really does take it all in his stride - seriously your DS will amaze you! It took Alex a couple of weeks but now he just copes with it all much better than me

thanks for replies so far. it is helping x

Just wanted to add, although I have no constructive advice, I'm sure he'd get through anything when his family are all there, supporting him. I'm so sorry to hear your news. I can't begin to imagine how this is affecting you and your family.

I'm so sorry to hear of your DS diagnosis. We are 2 years down the line if aggressive brain tumour but my DS was 16 when diagnosed so we have been able to talk about side effects.

At 2.5 it is probably very hard to help your DS understand but listen to the Drs and nurses at hospital as they have every day experience of helping youngsters understand what's going on.

Hope you are ok - cancer diagnosis is just utterly terrifying. Take care of yourself.

Oh my lovely. I'm so sorry that you are going through this. I completely understand not being ready to post on the other thread, I felt the same for a while.

My 4 year old DS was diagnosed nearly 5 months ago, and it has surprised me how accepting he is of it all. We have purposely not overloaded him with information but have tried to answer honestly when he asks questions. But it's rare that he does - he just seems to take it in his stride. Neither he or any of his little friends even queried his hair loss.

We are at the Marsden in Sutton and they have the CLIC Sargant onsite who have lots of booklets etc to help explain things. The play specialises are useful in making the children comfortable with procedures too.

With regard to socialising, my first instinct was that he was never leaving the house, but even after a month or so of this he seemed to become a bit introverted so i had to rethink it, particularly as he was supposed to be starting school in a few weeks, so i made a conscious effort to meet up with friends, obviously I made sure they were all fit and healthy before hand and avoided doing too much if his weekly bloods were too low. He know goes to school every day if he doesn't have appointments. It isn't easy I have to admit, especially when they had an outbreak of CP in the first week, but like all things it is a balance and it has done him the world of good to have some normality. It helps that it is a small (infant) school and they are very supportive and made sure all the other parents are aware of his situation.

Sorry I've rambled on a bit there. I remember this stage vividly and wish desperately that I could make it easier for you, but just know that we are all here if/when you need us xx

So sorry you're going through this mmmmsleep. We all remember the early days of diagnosis and how unreal everything seems. Take one day at a time and accept help and support whenever you can. Clic Sargent can be a great help - emotionally, practically and financially.

You'll be welcome on the Children with Cancer thread when you're ready. I was on the original thread and it still took me a couple of months to go back when ds1 relapsed.

Stay strong - you can do this.

Oh and to addres your actual questions - ds1 was 8.5 when first diagnosed, but was back at school, part time at first, about 2 months after diagnosis. Throughout his 10 months of chemo, he was at school full time. So depending on his treatment, your son may not need to be as isolated as you think.

Oh mmmmsleep I really feel for u.. My son was diagnosed with a rare type of brain tumour when he was just 2.3... The way we dealt with it was to try and turn everything into a positive (it's very hard to do). We always encouraged him to play with others as much as we could, sometimes he would and sometimes he wouldn't. He's 8.7 and still remembers some of the things we did back then days out and whatnot.. Good luck

just trying to figure out what childcare we need for dd 8m while I'm with ds at hospital. considering live in nanny but space /finances will be tricky but doable at a push. no relatives nearby and lots of friends have offered to have her in emergency but just feel we need more stability for her. we did have live out nanny share but I've given notice for that arrangement now as other toddlers here all week will be infection risk. gutted because ds loves playing with them but just can't see it working. this is all rather rubbish on lots of levels isn't it. thanks for those who have posted. sorry you're going through this too. I know we'll get through it and sadly this isn't a new experience for me as lots of cancer in family when growing up but even worse when it's your baby :-( I know how my parents felt now.

Lives are turned completely upside down by all this. I'm so sorry it's a familiar situation for you.

I guess a live-in position has the flexibility and consistency you're after. My DS1 goes to school and DH works locally so we cope with play dates after school or DH works at home. It's not ideal that I just disappear but there's no choice really! We're in another country to my relatives but my parents do come regularly.

So much to think about. Big hugs to you xxx

It is immensely hard. DD was 9 months when DS was diagnosed. We have no relatives nearby but have been extremely lucky that DM has moved 200 miles and moved in with us for the duration. I would say live-in nanny sounds great.

thanks. I think live in nanny will be only option. my mum died of cancer aged 47 a few years ago so that's not an option for us and mil is not an option for other reasons ;-). my mum would have been amazing I know with all of this and I'm missing her lots at the moment :-(

Not sure how much information you have about the type of cancer and treatment. You might find it is largely outpatient treatment. I have lots of children but have been working 80% since my son's diagnosis, my husband has been signed off sick and has been looking after the children. Not that you would necessarily want to do that, but you might find you don't need two people at home. We don't. Also you may find that you can have your child at hospital - my son with cancer is a twin and when he was first an inpatient we had both babies in hospital. Or there's the ronald mcdonald house.

Unless you positively want a nanny, i wouldn't jump into hiring someone unless you are definitely facing long term in patient treatment, you're a lone parent and there is no provision at the hospital to stay.

My niece has a very rare cancer. She's just coming to the end of her planned treatment. Her parents took it bit by bit, telling her what she needed to know, not more.

You should have play specialists who help you. For instance, DN had a teddy with 'wigglies' inserted (the tube going into the tummy) ands together they fed the teddy glittery water to represent the medicine.

Hello, I don't have any personal experience but just wanted to send you a big e-hug. My cousin is a play therapist and works in a hospital, so I can ask her for some advice if you'd like...? That said, I'm sure you'll be able to access that sort of help anyway.

Have you thought about a mother's help? The cost is much lower. I did this for a family with a child with a chronic health condition that required frequent hosp visits, so for certain days and times, the mum knew that she didn't have to worry about the other children because I was there. I've done it for other families too and while it wasn't the same as nanny, I know it brought the cost down a lot.

for you.

thanks I'll look into mother's help. I'll hold off employing anyone until we see what we need

My dd was 4 when she was first diagnosed with leukaemia. As others have said, it is tough as I am sure you know from your experience with your mum, am so sorry you have to go through this again with your ds. I was working full-time when dd had to go through 2 years of chemotherapy. We had no help in the beginning, we thought we could cope. my lovely bosses agreed to let me work from home (and hospital which was most of the time). i don't know how i did it. all the other mothers just stopped working. after a while dh decided that we needed a live-in nanny so he hired one after i struggled for a couple of months taking dd to chemo almost every day, she also needed to be warded on many occasions, both for overnight chemo and also when she came down with fevers and infections for weeks at a time, I also had to clean vac and mop the house everyday whilst working (since their immunity is compromised by the chemo, the house needs to be really clean and free from dust and mould). We also needed a nanny for the times when I had to go out and could not bring dd, as she could not go to public places or even school for most of the two years. and i didn't even have another baby at the time to juggle with!

as for the social aspect, i feel that it is very important for them to play with kids their age to keep their spirits up, but you need to ask the doctors if they allow your ds to do so. i took calculated risks the first time dd had leukaemia (she has had it twice now), and let her play with her cousins and friends whom she was very close to, and only when her counts were good and they were in the pink of health. no coughs or colds or fevers or diarrhea or suspicious rashes. i took her into her old kindy once or twice cos she missed her teachers. her teacher even had a birthday party in class for her once. i just made sure they knew she couldn't be around sick kids. her doctors now are very strict this time though (we are at a different hospital as we are in a different country now) and she has just had a transplant so they have completely banned her from seeing any kids under 12 until after she passes Day +100. So somehow I have to try my best to keep her happy and entertained!! I was worried she would get clinically depressed in the beginning but she seems fine now. she kept crying in the beginning. I keep things positive, and we talk about how she will play with her cousins and friends once she is all better, and how we will go to Legoland, on holidays, that kind of thing!

When I first posted on mumsnet about dd's leukaemia in 2009, somebody recommended this book for dd. do have a look, i thought it was pretty good and simple. www.chemo-to-the-rescue.com/images/newbook/cover.html

The hospital that we are in now (National University Hospital in Singapore) has amazing play therapists and social workers, they have lots and lots of books and leaflets for kids, explaining all about cancer and chemo, and they have dolls with hickman lines attached, so that kids can play with the dolls and understand what a hickman line is.

Sorry this is really long! But pls do come over to the Cancer Kids thread whenever you need to... for you.

thanks so much for replying hazlinh. I'm so sorry to hear your dd has leukaemia. I hope this course of treatment stops it in its tracks. thank you for the book recommendation. I think we will need a live in nanny. my work have been very supportive and let me off for a year on full pay and this last couple of weeks dealing with ds who is feeling increasingly poorly and trying to give attention to baby dd has me feeling guilty and exhausted. as this is going to be a marathon not a sprint I'm going to get help as I think it will help us all cope.

mmm That's positive news about work giving you a year off on full pay. I know it doesn't make the whole situation better but at least it's one less weight off your mind, so you can focus on your DC.

If you need any help with nanny advice, I'm more than happy to help.

Your work have been fab mmmmsleep.

Good luck with finding a nanny.

As we say in the Netherlands "sterkte" (means "strength").