Likely Cancer diagnosis for my 4yr old DD, advice please for talking to older siblings

[Littlefiendsusan]

After repeat returns to the GP and practice nurse about my DD's nosebleeds and snoring, and after repeat reassurance we are now facing a sinister outcome.

We weren't prepared to wait the 18 weeks referral given by GP to an ENT consultant so we went private.
The private Dr took one look in DD's mouth and said lymphoma.

The day after we were called to attend GOS that afternoon (yesterday) for consultation with Paed ENT consultant. Bloods and chest X-ray followed.

Last night we were called to come in for an MRI under GA which happened today and to be told she's having a biopsy on Monday.

So, an awful lot in a short amount of time and I'm terrified.
But...how do we involve other DD's 13 & 11?
Do we take them on this journey, giving them facts and information (selected obvs)

We're thinking of getting a hotel near the hospital for the nights (2) we'll be away for the biopsy.

Would this be too intense, upsetting or would them staying at home be worse?

Tia x

[3littlebadgers]

Oh goodness I am so sorry your family are going through this. I think the best option, as frightening as it may seem, is to be honest as gently as you can with them, and take them with you. When we lost dd2 the advice we were given from cbuk was to be open as children take in more that we give them credit for, and often the blanks they fill in for themselves can be more frightening for them. If you are open and honest, no matter the subject, they themselves feel more protected as they know there is nothing hidden to fear, and they know you are there for them.

I wish you the very best of luck

[ems137]

I'm so so sorry x

Yes, I second the advice to be open and honest but factual with your other children. It will be very scary for them too but at least if they feel supported and not blocked out they won't feel alone.

Good luck x

[teaandakitkat]

For now I think you would say that dd needs some tests to see what's wrong. The tests will take a few days so you might stay in a hotel to make it a bit easier.

I'm not clear if you're planning to all go to the hotel, or leave the older kids at home? I'm just thinking that you might want a bit of space for yourself if it's getting a bit overwhelming and that might be easier to find if you can shut your bedroom door at home for a few minutes instead of all being in a hotel room and having to put on a jolly face for meals out all the time?

Sorry you're having to deal with this, I hope the results turn out to be the least bad they can be

[Crumbs1]

GOS have parent accommodation so you might not need a hotel room. There would be little for her siblings to do and they might be frightened by your raw emotions. I'd agree stay factual about more tests and a possibility of a serious outcome that will mean hospital visits and treatment. I'd also be explaining the cure rate for Burkett's lymphoma is over 90% so although the treatment isn't pleasant and takes a while you were pretty sure she'd be cured in the slightly longer term.
Horrible to go through for all of you and it is all very sudden.

[cherrypiemay16]

Such a difficult time for you all. In my experience (through my job) I would definitely say to involve them, especially at their ages but is there another family member that can go with you? You will probably want some time to talk to doctors/take in information without being worried about supporting the other children too. You know your family best. Good luck xx

[Littlefiendsusan]

3littlebadgers Thats so unspeakably sad, how old was your DD? I'm sorry you and your family went through that.

DH & I will be staying at the parents hotel, and my thinking was to have my DM and DD's in a nearby hotel.

I'm torn between keeping this weekend a bit golden because I see it as the last one before a tough ride, and giving the DD's a lowdown, which will break that spell.

God Crumbs1 bloody hope it is as Burkett's if that's the success rate. It all feels so bleak right now.

Thanks for all your posts and good wishes.

[CurlJunkie]

@Littlefiendsusan so so sorry to hear what you are going through.

Tell them everything, they will handle it better than you imagine. We told our three young dc everything when I had my three cancer diagnosis. It has made them wise and caring beyond their years.

Good luck xxx

[Millie2013]

I'm so sorry you are all going through this, OP

Macmillan have some literature on talking to children about cancer, if that helps at all

[Blogwoman]

So sorry OP . I have some experience through work and agree with others here about involving your older DC and keeping them informed - unvoiced fears may well be worse than tackling the reality. There are sources of support, and advice, from charities such as Macmillan and Cancer Research UK and in the first instance you may find it helpful to look at their online advice about talking with children about cancer, such as this www.macmillan.org.uk/information-and-support/coping/talking-about-cancer/talking-to-children Involving your DC doesn't mean you need to have them with you for everything, though, and I think Teaandakitkat has a point about the forthcoming tests - might be easier all round for you to have that time away without the DC. Have you got good support from family/friends and someone who could stay with them or have them to stay while you're away for a couple of nights?

[minmooch]

I'm so sorry. My youngest was 13 when his older brother (then 15) was diagnosed with a brain tumour. It was exceptionally frightening for everyone. We tried to be as honest and open as we could for youngest DS.

Unfortunately my boy was at home one day and in hospital the next where he stayed for 6 months and I lived there with him. School age children were mostly not allowed on the ward as a preventative to norovirus. We kept in touch by FaceTime. I went home one night a week if I could.

We tried to keep things as normal as possible for my youngest as that was what he wanted. He wanted to keep going to school, see his friends etc.

Yours are old enough to understand that your DD will need your attention right now.

At first I found it very hard to talk to my youngest without being upset because they are very frightened too. If your other children are close to other family members ask for all the help you can get from them.

Wishing you much strength and love as you navigate your family through this xxxx

[Littlefiendsusan]

My heart is breaking and I can't bear it.
She looks so unwell but is trying to do all her normal 4 year old things.

Today I'm trying to intensely drink every detail of our family life right now, to savour for the rest of my life.

My thoughts are so dark. I'm thinking about music for her funeral and never doing a primary school run again, WTF is that about. It's like I've written her off already and we haven't even had a diagnosis.

Is this normal?? Am I losing it right when I should be at my strongest?

Is there a community on MN for sick kids?

[QOD]

💐
How worrying,no advice or knowledge but thinking of you all

[catkind]

So sorry to read about your scary situation. I would ask your DM to look after the older kids at home I think, they're not going to be in the mood to enjoy London so I'd keep things as normal as possible. There's no wrong answers though, if you think it would help them to be closer that's fine too.

Wishing you and your little one every strength. She's in the best possible hands. Completely understandable that your mind is going over worst possible outcomes. Of course you're not writing her off. If you've tried out ideas in the privacy of your head, it will help you stay strong for your DD and your older children if it should be bad news. Whether it's good news or bad or more likely a long road of treatment and hope and worry, savouring every minute with your lovely DD isn't going to hurt anyone.

[CurlJunkie]

What your subconscious is doing is completely normal under these circumstances so please do not torture yourself. I was doing the same for myself with my latest cancer diagnosis. Thinking of funeral music (I still do), imagining writing letters for my dc to open when they are 18 etc etc. My cancer isn't terminal so I have no need to think like that but I think it's an automatic subconscious reaction to an awful situation. It's like your brain is going to a place you really don't want it to go, just to test the water so to speak.

I know what you mean about drinking in the normality of every day life. We really do not appreciate the mundaneness of each day until something terrible happens and then we long for those days of boredom, squabbles at the breakfast table, yelling to find missing shoes, protests about what you've cooked for dinner. Only then do we realise how lucky we had been to not have had the torment of tests/diagnosis/treatment/prognosis going round and round in our heads, keeping us from sleep and making us feel demented with agonising worry.

Thinking about you lots & sending you masses of positivity.

[Sunshinesaz86]

So sorry to hear about your daughter OP. My son was diagnosed with luekemia 10 months ago so I understand what a daunting/scary time your going through. All sorts of thoughts will be running through your mind and it's all completely normal.

We don't have any other children but we do see many families regularly at his specialist treatment centre. Mostly the siblings have taken it very well. And I do know there are Facebook groups for particular diagnoses for children and even some for sibling support. Plus many of the charities are able to help also.
You'll find that this week you'll get more answers and even though it's going to be a whirlwind for you, all things like treatment plans, length of treatment etc will start to become a little clearer.

Good luck to you and your family. Wishing your daughter huge strength. You will all get through this x x

[minmooch]

Dark thoughts are completely normal in this totally unnormal situation. I think it's our mind's way of assimilating all the information we are given.

My top tip would be to write everything down. Your thoughts, fears, hopes. Your questions for the consultants. Write down every piece of information you are given from the professionals.

In the early days your mind has so much to process you simply can't remember everything or indeed concentrate on what people are saying. By writing it all down you then do not have to worry about remembering/forgetting information.

I kept a diary which was kept by my sons bedside so if I wasn't there my mum or his dad could write any information down as well. It meant we had a complete log of everything - down to each dose of medicine given, every morsel of food he ate, every bit of liquid give, any time he was sick etc. We knew when medicine was due etc and how each time he reacted.

It helped us feel as if we had some control but was invaluable to his Drs as we as his parents knew him best and each treatment affects each person differently.

Xxx

[BlackSwan]

This is very tough. It's a good thing you didn't wait for the NHS referral. Our son is cared for by GOS and was diagnosed with a brain tumour when he was 3. It was a very dark time for us, a surreal living hell. You are going to be on a rollercoaster for a while. Our son is an only child, so we didn't have any explaining to do. You will all be ok. If you're worried about how you are handling this, don't be shy about speaking with your GP - antidepressants/anti anxiety meds were a godsend for me. The GP offered counselling, but frankly I didn't have time or the inclination. Try taking it one day at a time - it is the most dull advice, but it's true. If you're on Facebook, check if there's a paediatric lymphoma page - you will find communities even spanning the world, they can help with information and support. x

[Littlefiendsusan]

Thank you all, it's very comforting to hear your experiences.

minmooch have packed a note book, great idea.

I've been lying awake for ages in the parent hotel, counting down till the alarm goes off. Today is biopsy day.

[Rainbowqueeen]

Good luck Susan, sending you strength and wishing you and all your family well

[Cheeseychipsngravy]

Good luck today. My children's dad had cancer, when he was first diagnosed they were too young to understand, but as soon as they were able to, I started being as honest as possible. All the advice I ever had said to be as honest as possible in an age appropriate way. My eldest has since said to me how much she appreciated that she could ask me anything and always get an honest answer, even if she didn't like it.

Will be thinking of you today

[Andcake]

No experience or advice to give but wanted to wish you well today.

[SwearySwearyQuiteContrary]

Thinking of you all.

[teaandakitkat]

Hope all goes smoothly today

[Couldiseriouslybepregnant]

Good luck today for your little girl and family. There's always someone on mumsnet to talk to, no matter what time

[theothersideoftheworld]

I wish you all the luck and love in the world today and will be thinking of you and your family x