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

[holdthewine]

Thinking of you littlefiendsusan hoping you’re all coping. My DC used to work at George’s and the Marsden in Sutton and you’re in good hands. DC has nothing but respect for how you parents cope.

[Littlefiendsusan]

This has appeared in my listings for some reason, so I thought I'd give an update.

DD had a diagnosis of a rare type of sarcoma that doesn't respond to traditional chemotherapy.
We were kept waiting for actual diagnosis for quite a while but that meant when we did get it, it was 'the one' and no more guess work.
She has been taking targeted therapy over the last 2 years, not 100% sure it's been shrinking things, even her oncologist doesn't know how effective it is, but side effects are minimal so we're sticking with it rather than nothing.

She's undergone Proton Therapy, 4 ops, 2 to remove the primary tumour and 2, the most recent was in June, to remove metastasis from the lungs where all but 1 tricky-to-reach met were removed. That will be dealt with later on, possibility with ablation.

And she is amazing. Really truly amazing. To look at her you would never guess she's battling cancer, she looks so well. She missed about 50 % of reception but made up for it in Yr1 when she only missed school because of appointments or operations.

We've been on 2 holidays this summer and some days I even forget what's happened to our family. The repercussions with the older DC's may well rear their head as teenage-dom progresses but right now, life is ok

[BlackSwan]

Thanks for your update - what a tough time you have had. Wonderful to hear she is doing well in spite of all of this & that you're getting in some ordinary family holidays.
Where did you go for proton? My son went to Jacksonville. He's 5 years out from treatment now, and doing great. Touch wood, fingers crossed...