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

[JustDontGetItAtAll]

Thinking of & hurting for you x Wishing you all the luck in the world xxx - Bun is for your DD x

[MrsMozart]

Just seen this. No wise or useful words but sending hugs and hand hold.

[Littlefiendsusan]

She was due to start school in Sept and her little black school shoes are sitting in the hall. We only bought them a couple of weeks ago.
Her uniform is all labelled and in my wardrobe.
I can't bear the fact that she probably won't wear them.

[YellowLawn]

oh man.
poor you poor dd.
wishing you all the best for the difficult times ahead.

[GavelRavel]

I have a friend that works at the Marsden and by all accounts they're lovely with children, please don't worry about that. it's the top specialist hospital for cancer research and id move heaven and earth to get there if I or any of my loved ones had a cancer diagnoses, she really will be in the best hands x

[lampert]

I'm so sorry to read this thread OP. Nothing I could say to help, other than wishing you and your family all the strength in the world. Stay strong for her - she needs her parents to fight with her

[Underthemoonlight]

I'm so sorry to hear of your update op. Having a 4year old myself I can't imagine what your going through. My DS DF had osteosarcoma when he was in his teens, my advice is surround yourself with family and look into as much support as what's available to you all.

[summertimesalsa]

I'm so sorry. I've had cancer and I promise, this period is awful. The waiting, the wondering, the dark thoughts when you are alone or waking in the night, the panic and lack of control. It's all down to the unknown. Embrace it and understand it's part of the process.

I promise that when you are armed with all the facts and the plan ahead you will be
more in control again and the panic will dampen a little.

The marsden is amazing and you'll all be in the best place. Surround yourself with people who can help, offer handholds and tissues. My CNS was the most amazing person to have around and knew exactly what to say to help.

[Jemimapuddleduk]

Thinking of you op. My ds was diagnosed with AML at 16 months last January. We told our dd (she was only 2 yr 10 months at diagnosis) what was going on in very simplistic terms. I think the stage you are in now is the worst. Once we had the proper diagnosis and were admitted onto the oncology ward we got into a routine and it became easier. You will be allocated a Macmillan nurse (they are fab but we're totally over stretched at our hospital) and a clic Sargent social worker. There may be a Ronald ma Donald house you can stay in free of charge. In a way we found it easier having a very little child on the ward as they really benefitted from the play specialists and toys available. MY heart went out to the teenagers.
The days and nights are so long, tough and monotonous. We were lucky that we had family or friends visiting several times s werk, that helped massively. We also formed some good links with other families on the ward who were a massive support system. My husband and I did alernate days and nights. We had 4 x month long blocks in hospital with a week gap in between each stay. I think back now and wonder how we got through it but we did and ds is thriving and continues in remission.
As someone else said just take each hour (or sometimes ten minutes) at a time.
Please feel free to ask me any more questions. Happy to help.

[Jemimapuddleduk]

Apologies for all the spelling mistakes. Rushing!

[flapjackfairy]

In my experience all childrens hospitals are excellent so dont worry on that score.
So v sorry to hear what you are going and sending love , hugs and prayers to you all xxx

[lynmilne65]

Am so so sorry xxx

[MadisonAvenue]

Oh no, it's such horrible news and I'm so sorry that you're all going through this. I'm sending lots of love and strength

[Nifflerbowtruckle]

My husband is currently in remission from testicular cancer. We are hospital at the minute waiting for an appointment actually. I can't offer any advice regarding the hospital but I do have some practical advice.

This will be the last thing on your mind at the minute but once you get a treatment plan look at what benefits you can get (PIP, DLA, carers) the last thing you want whilst caring for your daughter is worrying how bills will be paid.
Look for a charity for children with seriously ill siblings for your older daughters to get a support network for them and I'd inform their schools when they go back.
If you have to pay for tv in hospital, don't it will cost a fortune, get a portable DVD player and a load of DVDs.
Also get her a lot of comfortable clothes with elastic waistbands (leggings, joggers) and cotton short sleeved t shirts.

[Stinkyfeet]

I can tell you from personal experience that the staff in the Oak Centre (for children) at the Marsden are fantastic. They are incredibly kind and patient. You will have access to a support worker from Clic Sargent who will be able to give advice about many things, including talking to your older children. There are good parent facilities for inpatient stays.

There will be a lot to take in over the coming days/weeks - I found our allocated specialist nurse was really helpful for explaining everything.

Best of luck x

[UsedToBeAPaxmanFan]

I am so very sorty. No advice but thinking of you

[UsedToBeAPaxmanFan]

Sorry, not sorry, obviously.

[UsedToBeAPaxmanFan]

Ok, that time autocorrect worked

OP, I am very sorry

[Oogle]

Op I am so sorry. Sending lots of love to you and your family xx

[minmooch]

I'm so sorry. I remember the probable diagnosis and the time for definite diagnosis as horrendous. At least when treatment starts you feel something is being done - although that is bittersweet.

I wish your DD smooth treatment and lots of love and strength to you all xxxx

[Lavri]

Wishing you strength and lots of support. My DS was diagnosed with cancer at 11 months and is now two years out of treatment. I agree with PP that this is the toughest time-the uncertainty is so hard and your mind goes to very dark places. It was amazing how quickly hospital appointments and treatment became normal. Take care of yourself and surround yourself with people who can support you in the way you need, x

[Linzilou1985]

I'm so sorry that you and your lovely family are going through this. Sending hugs xxx

[viques]

So sorry to read your update. Love and more love to you and your family.
V xx

[Happymarmiteday]

I'm so sorry lovely. My little boy was diagnosed with stage 4 cancer a few months before he was due to start school. I remember the early days vividly and wouldn't wish it on my worst enermy. Believe it or not things do get slightly easier when treatment starts.

My son was treated twice at the marsden in Sutton. It's a truly wonderful hospital. I can't speak highly enough of them.

He still has a long way to go but we're 2 years from the end of relapse treatment and to look at him you wouldn't have a clue what he's been through. He doesn't remember much about it all and is just a regular lazy, cheeky gorgeous 8 year old boy

Please feel free to PM if you want to chat x

[abigailgabble]

I can't even imagine what you are going through but am wishing you and your family all the best