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Please hold my hand. Baby has cancer

(395 Posts)

Thread title says it all.

One week ago I mentioned to dh (a doc) that dd 14 months had a tight tummy. He examined her, felt a lump. We went in to a & e, had a scan, they saw lump 13.5 cm across.

We've been referred to GOSH and they are amazing. Poor baby has had to endure scans, GAs, tests galore.

Latest is that it's either hepatoblastoma or germ cell tumour. CT scan on Monday to see if it's spread to the lungs. She has a central line in now so will start chemo within a week or so.

We have absolutely amazing friends and the support of our faith (we are Catholic) but it's like a completely weird dream. Our world has come crashing down.

We have four older children too (12, 10, 8 and 4).

Btw I'm a long term MNer but have name changed because I've got a one track mind now.

Thanks all.

That's really kind therug.

Big four came visiting today -- wonderful to see them and cuddle them and my 10 yr old ds had a great cuddle with Beazy.

But the poor darling was much more subdued. Sick twice after I had to force feed her with medicine. And the hospital's stupid policy may mean that her Hickman line (through which she gets chemo and gives blood for the numerous tests) has been blocked. It's been working beautifully up till now, but here they don't lock the line with heparin after it's accessed. We asked them about it but they said it wasn't necessary -- and sure enough, now one side won't bleed back. Am in horror at the idea of Beazy either having to have it replaced under GA or having to be stuck for bloods each time.

And now there is a poor wee scrap next to us who is screaming a lot, and when he's not his parents are chatting, and the other family is watching telly!!!

Sorry for the whinge. I know I've got a lot to be thankful for really!

INeverSaidThat Tue 05-Mar-13 00:32:05

Hi, just wanted to send my thoughts and best wishes.

Hope Beatrice feels a million times better soon.

twojumpingbeans Tue 05-Mar-13 07:44:03

Am delurking - just wanted to say thinking of you, my youngest DD has Cystic Fibrosis and has to have IV antibiotics in hospital from time to time - she is around the same age as Beatrice. I just can't understand why they don't use heparin after every infusion, I'm not an expert or a medic but think that's why her line never failed last time..? I have been trained to give the IVs at home (scary, fortunately not had to do it yet) and have to use the heparin there too, although of course, they don't have the same condition so maybe that's the reason?

Anyway, completely understand how the telly, talking and general claustrophobia of hospital life can get you down, it does me, then I feel guilty for getting peeved and subsequently, feel worse! I just wanted to let you know I am thinking of you often and hoping that your lovely girl is back home and well very soon...

I have only just found this thread, I hope Beatrice continues to improve. I will keep you all in my prayers. My job in church is to keep the candle tray topped up so i will light a candle for Beatrice next time i go.

Can they use urokinese to unblock the line? I know we can do that with a permanent dialysis line but not sure about a Hickman. If they have to do that don't worry, it seems to work very well. You could then try to insist that they follow the other protocol as the line has blocked once and that should be an indicator for doing something differently.

Trazzletoes Tue 05-Mar-13 08:43:01

Oh no! JUST what you don't need!

Why the heck don't they use heparin?! I hope they manage to sort it quickly and without having to refit her line.

I so hope the family in the next bed quieten down, though I found that other people are definitely one of the hardest things about being in hospital! (I'm not terribly patient or charitable though! grin )

Hope Beazy is feeling better soon.

And thanks for the prayers and donations - they are greatly appreciated. (Hugs)

crashdoll Tue 05-Mar-13 09:30:58

You do not have to apologise for whinging, you are more than entitled. It's not easy what you're going through.

Love to you all, especially your precious little B x

crashdoll Tue 05-Mar-13 09:32:20

P.S. is your profile photo a recent one of Beatrice? She's a doll, so cute!

minmooch Wed 06-Mar-13 20:44:24

How is Beazy P4B? Hope you are all ok xx

Hi all. Happy here. Beazy's doing really well. Abdo drain is now out, dressing off and the wound, though massive, looks good.

Can't tell whether the Hickman line is buggered or not but she doesn't appear to have an infection (though they didn't send Friday's blood sample to be cultured until Monday, so who knows)... Anyway, minor gripes compared to all the good news. Consultant said she was doing 'amazingly well'.

Hoping to be home by the end of the week, then next chemo on Thurs/Fri.

crashdoll,thank you -- yes, that's a recent pic of my little darling... I can't seem to work out uploading pics -- it seems to delete the old ones if I post a new one hence the duplication, but will try to remedy when I get home.

twojumping -- agreed re heparin. And the guilt re annoyance -- double whammy!

Northern - good info, thanks. Hoping it won't be blocked. They are hep locking now but only after the nurse left the lines full of blood day before yesterday after forgetting something -- making it so likely to clot... But that's without the amazing clot busting power of prayer...!

And thanks for all the messages of support and prayers. Just lovely.

I lit a candle for Beatrice yesterday when i went to do the candle tray in church. Sending prayers and hugs xxxxxxx

Thx Lottie, really sweet of you.

And... We're home! Everything seemed to come together and we were discharged. What bliss. So wonderful to see my big four and be all together at home.

Am so amazed that we were only in for seven days -- so proud of my tough little fighter -- and thankful that all went so well.

Chemo again next Thurs/Fri!

So happyyou are home!!! smile

Trazzletoes Thu 07-Mar-13 22:03:41

Yay! That's such wonderful news!

dothraki Thu 07-Mar-13 22:20:12

Praying - thats great newssmile

IwishIwasmoreorganised Thu 07-Mar-13 22:29:38

What a great update.

Bea sounds so strong. Hope you're all snuggled up together.

Xxx

minmooch Thu 07-Mar-13 22:55:30

Wonderful, wonderful news! Enjoy having your family all under the same roof. Xxxx

Januarymadness Thu 07-Mar-13 23:16:40

glad to see you are all home. Long may she continue doing "amazingly well" smile

Fantastic news smile

domesticslattern Fri 08-Mar-13 14:03:36

So pleased to hear Beazy is back home. Such lovely news. Hope you have a good weekend all together again.

Hawkmoon269 Sun 17-Mar-13 16:12:22

How're you all doing? Hope Beazy is bright and happy x

Chemo went ok but poor Beazy took a massive turn for the worse when we got home. Lots of crying, and a low level fever which today (yesterday) got to the point where it needed to be checked out. So here we are in our local hospital and my poor sweetheart is burning up and very unhappy. IV antibiotics for a couple of days and please God that'll sort things out.

Gut-wrenchingly worrying (I'm probably overreacting). Exhausted.

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