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

[Mooey89]

So sorry OP, stay strong.

[Littlefiendsusan]

Sorry, I've been staying away playing stupid games with myself pretending this isn't happening.

Our appt at the Marsden was cancelled on Friday. They told us we would be welcome to go and meet them, but as all the test results weren't in, there wasn't much point,so we go on Tuesday now. Sort of relieving as no news is good news...

But something weird has replaced this sick feeling of horror, it's like it never happened and it's all a bad dream. I'm not crying all the time, I get irritated with everyone leaving stuff around etc etc just like normal me before this.

Some serious head-fuckery going on.

[OrlandaFuriosa]

Whatever happens, DH and you are going to get very very tired. Being on call, travel, emotional roller coaster, etc. Please get whatever help you are entitled to, carer's allowance, extra cleaning etc.

And please please be as open, in an age appropriate way, with your older two. If they know that they know all there us to know, they'll feel much more secure. And because it wasn't so long since they were little, they'll be able to make sensible sugestions.

I'm sure others have said this, but do keep their schools in touch, behaviour may well go wayward everywhere.

If you've got some family counselling that will also help.


Thinking of you.

[CurlJunkie]

@Littlefiendsusan this exactly what is referred to as 'the new normal'. You have got back to some kind of normality which you absolutely must, but at the same time you have this awful nightmare situation going on. You probably keep asking yourself 'should I be acting this way?'. I think that when you've seen people in the news and in magazines going through horrible life changing situations, you wonder how on earth they cope & you imagine that life as you know it would be over. However when you are actually in that situation yourself, reality is very different, life must go on.

Sending positive vibes your way xxx

[Vonklump]

Best wishes

[BellMcEnd]

Wishing you all the very best. My friend's son was treated at the Marsden in Sutton - they were fantastic. My Dad also had treatment there and they honestly couldn't have been kinder. It really is a brilliant, and specialist, hospital

Take all offers of help: people will want to support you. Thinking of you.

[notWORKzilla]

Good luck at the Marsden today LittleFiendSusan

[TractorTedTed]

Thinking of you today

[LillyLollyLandy]

Thinking of you and your DD OP

[ItsLikeRainOnYourWeddingDay]

[BeauMirchoff]

@Littlefiendsusan I'm so so sorry that your family is going through this. Your poor little DD!!! I'm sending you all the love in the world and will be thinking of you we're all here for you xxxxxxxxxx

[minmooch]

Been thinking of you xx

[UsedToBeAPaxmanFan]

Hello OP.
I was thinking of you and your dd today. I hope you got better news than you were expecting, but we are all here for you whatever the results were.

[2017SoFarSoGood]

Thinking of you and DD, LittleFriendSusan

[MadameJosephine]

Thinking of you and your DD and wishing you all the strength and love you need to get through the tough times ahead . I have a DD the same age, I can't begin to imagine how you must feel

[Littlefiendsusan]

Thank you for your kind words.
We saw the Dr. but they are no closer to to finding out which cancer type it is. Rhabdo has been ruled out.

They want to move treatment along quickly as the tumour is in her airway and can potentially block it if it continues to grow.
Today we're going to St George's in Tooting to have a central line fitted and to start the first course of chemo. They'll tweak the meds along the way when they know more about what it is.

I'm not keen on this travelling to different sites for treatment. The Dr assured me that commmunications etc are good but I can see potential for things being missed.
I wish we were at GOS where everything is under 1 roof.
Is it true that GOS only treat north of the river, I'm worried we're being fobbed off as DD is a difficult case?

[notWORKzilla]

As far as I know, not true that GOS only treat north of the river.
Evelina is the "south of the river GOS" It's linked to Guy's & St Thomas' hospital
Evelina

But we recently had some neurology issues with my DS and the GP explained to me that the NHS has restructered in SW london and certain hositals have key skills/ centres now rather then the previous set up of more hospitals having a broader range of skills but only up to a certain level of expertise.

In my experience St Georges is amazing, and def the place you want to be based if you need emergency surgery.

Do you have far to travel to St Georges?

[OrlandaFuriosa]

Not true re GOSH. Don't know about cancer but we, sarf London, were there ( immunology).

under one roof is good but you will have to keep all the records and remain on top of it anyway. If there's somewhere convenient that you trust to do the boring bits, like change fixtures, that can be useful, rather than having to go trailing up there.

I'd ask in a separate thread where's best for children's cancer: people will have views.

Lighting candies in my mind for you.

[OrlandaFuriosa]

If you want to PM me, do.

[notWORKzilla]

Sorry. I shoul dalso add that I'm not sure if Evelina take care of paediatric cancer patients.

I'm so sorry that you're going through this. I'm sure it must be very disconcerting to be moving form hospital to hospital but St George's is a great hospital and I'm sure they'll take very good care of you

[GavelRavel]

we're south of south London and went to GOSH for paediactric rheumatology.

Couldn't they do the line at Sutton? Is St George's closer for you to travel to?

Hope you get some answers soon x

[Amaried]

Please don't worry that you are being fobbed off as being a difficult hospital. In my experience doctors and hospitals fight over challenging and unusual cases..
Thinking of ye all, I have a little boy the same age and I look at him and think of ye.

[doowapwap]

OP my son was admitted into St. George's and we spent a while there. It was nice, bit old in places but the nurses and staff were lovely on the whole. Any questions on the hospital or area then please just ask.

It must be frustrating having to move around a lot and not having answers

[shugfish]

Traditionallly within Paediatric Oncology GOSH covers north of the river and the Marsden covers south of the river. There are some exceptions such as all under 1yrs are treated at GOSH. The Evelina does not have a Paediatric oncology department.

The same Paediatric Oncology Consultants cover both St Georges and the Marsden and the junior doctors have close contact with at least daily telephone conversations.

As the tumour is near the airway the best place for line insertion and initial treatment is St Georges as they have excellent Paediatric anaesthetics and intensive care.

Use to work in both trusts in his field and it's standard practice for patients to be treated at St George's especially at the beguinning of treatment. You are definitely not being fobbed off.

Hope all goes as well as it can over the next few days/weeks. Will be thinking of you.