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

[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...

[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

[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.

[GreyCloudsToday]

I think of you and your DD often, and hope your DD is journeying back to health. All best wishes for your whole family

[Wishiwasonholiday1]

I hope your DD is doing well and that you're all ok

[mumof06darlings]

Hi I have been thinking of ye and just wanted to say I hope all is going ok for ye

[AmyGardner]

Hi Little I've been keeping an eye on your thread. You don't have to keep us up to date. I just wanted to let you know some of us are thinking of you, that's all.

[lampert]

How are you doing OP? How is your DD? xx

[SugarMiceInTheRain]

Thinking of you all and hoping you can all get some rest

[notWORKzilla]

Thinking of you LittleFiendSusan x

[SeveredPixieBits]

Thinking of you and your lovely little daughter.

[Janome]

Thoughts are with all of your family

[burntoutmum]

Littlefriend, I hope the start of chemo went as ok as possible. I'm an ex chemo mum ( DS recently finished) so feel free to bend my ear for any help x

[MadisonAvenue]

Thoughts are with you, I hope you managed to get a restful night.

[llhj]

Thinking of you.

[BertrandRussell]

Try to look after yourself. Lots of hand cream and lipsalve. I know that sounds trivial, but hopsital air and antibacterial stuff is incredibly drying. It's an easy way maybe to make yourself feel a tiny bit better. And your dd will like to share a little scenty cream too.

[MrsMozart]

Hope you slept and that today goes as well as possible. Hugs to you all.

[Afreshstartplease]

Thinking of you and your lovely dd op

[flapjackfairy]

Hope you got some rest. Sending lots of love xxx

[Out2pasture]

Strength and sleep in equal measures coming your way

[2017SoFarSoGood]

oh Littlefriend that sounds like a horrid, horrid day. You poor thing. I'm so sorry you are going through this. Your poor DD. You just need to hug her in, I know. She is in the second best hands though, if that helps.

and a wish for some good, sound, mind numbing sleep for you.

[TractorTedTed]

Oh bless you.

Hope you manage to get some sleep.

[Littlefiendsusan]

Long long day. Poor DD was kept nil by mouth until 2:40pm this afternoon, when she was taken down for line insertion and a bone marrow and bone collection.
She's in PICU overnight which is great that she's getting the one to one care but also means I can't sleep next to her.

The plan is to start chemo tomorrow.

I like a drip feed approach to gaining info, too much knowledge makes me go squiffy, whereas DH is the polar opposite. He's asking all the questions about infertility and possible future learning problems associated with having chemo,
I'm rambling now, putting off sleep as long as possible so it comes quickly when I try.

[TantieTowie]

Agree with previous posters, this phase when it's all new is the worst but it will soon be routine and a new normal. My dd was diagnosed with leukaemia (ALL) in July 2015 at the age of 4, and is now a month from end of treatment. Her brother was 8 at the time. It was important to make special time for him as well, even if that time isn't long. I'd suggest being honest with siblings, explaining what's going on and why. It's something they'll need to understand rather than fear. There was a great book, Joe has leukaemia, that they both wanted read a lot at the beginning, really helped them understand what was going on. There might be a similar book for this cancer. It was from this site: www.cclg.org.uk

[OrlandaFuriosa]

I'd probably ask under both general health and chat, just because you'll get more traffic.

Pming you.