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

[minmooch]

I have been thinking of you and your family xxx

[NoMoreDecorating]

Just come across your thread, I really hope that everything is ok and today went well. Thoughts are with you and your DD

[Littlefiendsusan]

Just came on to have a pre bedtime mooch and feel so bolstered by all your supportive words.
I always think of myself as a bit of a lone wolf, but people- strangers- rallying around is just lovely.

Today was fine, CT scan and biopsy done. Results will come over the next few days. The teams will meet on Thursday to start to formulate a plan with the results that are through.

We are to meet the oncology team tomorrow... our surgeon laid the groundwork in his carefully chosen words for this eventuality.

It's weird that now that's it's been almost confirmed, a sense of calm has come over me, or a new state of numbness, I'm not sure. I do feel stronger and so much less bleaker now though.

[Blogwoman]

Came back to see how things went for you today day OP & very glad you are feeling stronger. Such a roller-coaster... We're all rooting for you and your family here 💐

[CurlJunkie]

@Littlefiendsusan I'm sure your oncologist and the rest of the team will do an amazing job of reassuring you. Oncologists seem to have a special knack of setting your mind at ease and being very proactive with their plan of action. They are used to dealing with families who have been felled by a devastating cancer diagnosis. They know that this is a truly traumatic time for you and will be doing everything within their power to reassure you that they know what they are doing. Cancer is such a treatable disease in lots and lots of cases now. It's such a frightening word as we've all been brought up believing that cancer means only one outcome. That truly isn't the case. I've had cancer three times and I'm currently at the tail end of my latest diagnosis. I know many people who have conquered cancer.

As somebody said on your thread, join a Facebook support group. There are many out there. It helps speaking to people who are going through and have been through the same thing as you.

Keeping finger and toes tightly crossed xxx

[summertimeandtheweatherisfine]

Just wanted to say thinking of you all. I am confident you are being looked after well at GOS, behind the hospital there is Coram Fields as a great play area, tutti's on the same street as the hospital & is great coffee/breakfast & lunch place & there is a great Italian (near Rymans) that does good take away and quick eat in food.
The GOSH playworkers are amazing & very good at engaging siblings.

[Littlefiendsusan]

Spoke with the oncologist today. Bad news.
It's looking like it's a Rhabdomyocarcoma. 60 kids get them a year, more boys than girls, so she is one unlucky little girl.

Did a MN search on it but there's only 1 page with not much info.

My only hope is that as we are still awaiting biopsy results it might not be so.
The oncologist had no offering of reassurance. I could see he was struggling to be less grim.

It looks as though she may have mets on her lungs.

Aggressive treatment awaits. We've been transferred to the Marsden as we're in Kent.

Any experiences of the Marsden anyone? Is it lovely and child friendly like GOS?

[CoCoCoconut]

littlefiend I'm so sorry to read your update. I can only imagine how you must be feeling. I am sending every thought and prayer for a better-than-expected official diagnosis.

There will be a plan, and there will be people who know what they're doing, working hard to cure her.

[Trumpton]

I am sorry that you don't have better news about your little girl.
Sending you a quiet hand hold in the middle of the night and hoping and praying for you all.

[GwenStaceyRocks]

littlefiend I'm so sorry to read your news. Sending you all lots of love and strength.
When we had cancer in our family, I found the local Maggie's Centre was a great place for support and information. If there isn't one near you, they have an online centre too. It's so tempting to batten down the hatches but there is great value in reaching out for support.

[2017SoFarSoGood]

Little friend so sad to hear the news. You must be so very frightened.

Sounds like this little girl has an army at work for her already. Let them do their with. You have to try to eat and rest so that you can cope. Sending lots of strength and 💐

[burntoutmum]

So sorry to hear this littlefriend

I have no idea about Marsden, my youngest - 8- has recently finished chemotherapy for a brain tumour. He was diagnosed at 5. Scary times. PM me if you'd like a chat xx

With regard to your older children. Be as honest as possible with them. They'll know what's going on and will appreciate you keeping them involved. We hid everything from the boys when DS was diagnosed but his big brother - then 11- understood more than we thought he did, but we didn't talk to him about it so he dwelled on it. We're now a lot more open with him.

There is lots of support out there, for the whole family. Clic Sargent are brilliant at helping sort out accommodation, finances, support.

Sending you much love and a hand hold x

[twoseven]

Sending you hugs.

[Out2pasture]

positive thoughts coming your way from overseas.

[iwishiwasrichandthin]

Little I so very sorry to read your update.

I have nothing to offer except an un mn hug and

[eviethehamster]

I'm sorry OP.
My friends son was diagnosed with leukemia at age 2 and had treatment at the Marsden. She didn't have a single negative thing to say about it.

[QOD]

💐
I don't have first hand knowledge of the Marsden but it is THE cancer hospital for England. Perhaps they're sending her there rather than GOSH as they've treated it more?
Just so sorry

[Mountainviewloo]

so sorry op.

I don't have any experience but here for a handhold.

[tickyandtackyandjackythebacky]

Truly sorry to read your update op. Wishing you every bit of strength and luck in the world for you, your lovely dd and your family

[Orangebird69]

Not a child, but my uncle was at the Marsden for his brain tumour. Your dd is in the best hands there

[Orangebird69]

Also OP, get in touch with MacMillan if you or your family need extra support. They really are fantastic. The support my family received from them when my uncle was diagnosed, and all through his treatments, was invaluable.

[BlackSwan]

I'm sorry you've received this awful news. If radiation is recommended - I think paediatric rhabdomyosarcoma is on the list for NHS funding for proton: [https://www.engage.england.nhs.uk/consultation/specialised-services-consultation/user_uploads/pbt-paediatric-policy.pdf]
Our son had NHS funded proton for his brain tumour in the US. Feel free to PM me.
Stay strong. xx

[sandgrown]

So sorry to hear this but I am sure your daughter is being sent to the best place for specialist treatment .

[Afreshstartplease]

Oh op what terrible news. I am sure as others have said your dd is in the best possible hands. I have a four year old dd myself and cannot even imagine what your family is going through

[verystressedmum]

So so sorry about your dd
This is a scary time for you all, my dd had Hodgkin's lymphoma.
Be honest with your other children as at their ages you won't be able to hide it from them.
You will get through this. Lots love to you all x