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Likely Cancer diagnosis for my 4yr old DD, advice please for talking to older siblings

178 replies

Littlefiendsusan · 11/08/2017 20:00

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

OP posts:
Littlefiendsusan · 23/08/2017 23:34

Thanks shugfish that's reassuring.

OP posts:
Littlefiendsusan · 23/08/2017 23:39

Orlanda is there a children with cancer thread still? I did look but couldn't find anything recent.

OP posts:
Jemimapuddleduk · 24/08/2017 10:08

There was a children with cancer thread that I posted on when ds got diagnosed but it didn't get much traffic.

OrlandaFuriosa · 24/08/2017 12:31

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

Pming you.

TantieTowie · 24/08/2017 23:15

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

Littlefiendsusan · 25/08/2017 00:48

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.

OP posts:
TractorTedTed · 25/08/2017 00:58

Oh bless you. Flowers

Hope you manage to get some sleep.

2017SoFarSoGood · 25/08/2017 01:14

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.

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

Out2pasture · 25/08/2017 01:47
Flowers Strength and sleep in equal measures coming your way
flapjackfairy · 25/08/2017 06:27

Hope you got some rest. Sending lots of love xxx

Afreshstartplease · 25/08/2017 06:52

Thinking of you and your lovely dd op Flowers

MrsMozart · 25/08/2017 07:44

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

BertrandRussell · 25/08/2017 11:36

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.

llhj · 25/08/2017 17:12

Thinking of you.

MadisonAvenue · 25/08/2017 17:19

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

burntoutmum · 26/08/2017 09:57

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

Janome · 26/08/2017 20:46

Thoughts are with all of your family Flowers

SeveredPixieBits · 26/08/2017 21:24

Thinking of you and your lovely little daughter.

notWORKzilla · 31/08/2017 18:40

Thinking of you LittleFiendSusan x

SugarMiceInTheRain · 31/08/2017 18:49

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

lampert · 05/09/2017 19:05

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

AmyGardner · 06/09/2017 12:33

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. Flowers

mumof06darlings · 14/09/2017 21:26

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

Wishiwasonholiday1 · 16/09/2017 23:19

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

GreyCloudsToday · 09/10/2017 10:35

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