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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.

And thanks Donkeys. You're right of course!

Trazzletoes Fri 01-Feb-13 22:16:03


I'm not in the least bit medically trained, and J doesn't have high blood pressure but if it helps at all, he is on supplements for potassium and magnesium. The Doctors have said chemo usually depletes at least one of the salts so most people will be on a supplement for something.

I hope her kidneys are doing just fine. Sorry about the extra stress of appointments. Sometimes I think the professionals see this as their day job and forget that every little nuance is agonising for us and that this means everything to us.

domesticslattern Fri 01-Feb-13 22:28:01

<joins in with the others hand holding and salmon platter passing>
Poor you. A useless computer generated message with no human apparently willing to take responsibility must be distressing, I can only imagine. I do hope it gets sorted soon so that you are able to plan.
Last week it struck me as quite apt that the pub opposite GOSH is called The Perseverance. It's what's needed in great quantities for so many of the patients and their families.
Sending unmumsnetty hugs in your general direction.

domesticslattern Fri 01-Feb-13 22:29:07

ps Beazy is a very very cute name.

StoicButStressed Sat 02-Feb-13 14:59:08

Dearest Praying - you know from prev posts that I am thinking of beautiful Beatrice and all of you, and that has never stopped. I was overjoyed to see the post about how well she is, and how that helps you be back in the 'now' rather than lost in the horror that is cancer. I am praying her kidney results come back OK and share frustration re bloody computer generated letter re op - both per se AND in how brings YOU back down to that broader place than the 'now'. PLEASE do your best to remind yourself that 'now' is ALL that matters to BB (Beautiful Beatricesmile ). Am also so touched in the humanity that have seen in response, and that I am also getting on an emergency thread/post I had to start yesterday when suddenly told DS's nanny, my lovely Mamma, is about to pass - the kindness of strangers is just staggering, and so very very beautiful in the bleak canvas we have at this endsad.

Cried when saw what your other DD had said, not as it's a certainty about BB's life as a grown woman (which she WILL be if your amazing and just shining with love parenting and all the love & prayers you are getting, as well as the medical stuff, count towards that); but just as it was so unbelievably insightful and caringsmile of DD (sh*t, am crying again now).

Have done a lot of crying over past 48hrs as my Mamma, who has terminal cancer but we honestly thought she had at least a few weeks or couple of months left, has now - very very suddenly (only found out yesterday morning) - reached the end. Will you forgive me if I ask if there is ANYTHING you know, or have realised, or just literally ANYTHING that will help me help my DS's (& me too I guess, though they have been my primary focus, them and just my Ma) in this very sudden and truly agonising time that might help? Hate asking but am just lost and desperate, and any help/advice/guidance/knowledge just needed desperately. Please forgive me for asking but am so lost and in shock and SO worried re DS's that even whilst feel horrific for asking when you are dealing with what all you are, I know my boys and I need every piece of advice or experience we can get. Link is below if you or anyone else can think of ANYTHING that may help. Again, my thoughts are with all of you and BB and I know you probably won't be able to answer, but putting link here just in case. With all my love, hugs and prayers still - xxxxthanks

DonkeysDontRideBicycles Wed 06-Feb-13 08:04:11

Hello Praying
Have seen your thoughtful posts on other threads this week, just wanted to say hi to you and ask how Beatrice and her siblings are getting along?

Hi donkeys. How kind you are! B has had a good week, thanks. Pretty cheerful most of the time. She managed to climb on the open dishwasher today and use it as her dance floor!

Big ones are fine too -- when they're not fighting like ferrets in a bag that is ...!

Results of kidney test tomorrow, plus 4th round of chemo. Can't believe how quickly it's going.

DonkeysDontRideBicycles Wed 06-Feb-13 21:46:08

ferrets in a bag you have a lovely turn of phrase!

Shall be thinking lots of positive thoughts tomorrow regarding kidney test results. And of course, good luck with the chemo.

Suggested Beatrice as a name on a Baby Names thread recently, hope you don't mind sharing wink.

StoicButStressed Thu 07-Feb-13 01:22:49

Hi Praying. Just checking in to say hi, see how lovely BB is doing (and the rest of you toosmile). Great that results are in tomm (technically today actually as soooo late up), and agree - even from outside it's incredible that 4th round of chemo is here. Hope all goes well tomm & will be thinking of you all.

Will post in mine tomm but just haven't been able to as day so very very very awfulsad. Instead have just immersed myself on random threads here instead - dumbly including the smacking one <risky strategy I now realise given views soooooo entrenched!>

Hugs & thoughts for tomm x

Great news. Kidney function test was normal. The tumour is noticeably smaller. So so happy about both things!

We are awaiting news re surgery date from the other hospital - apparently the surgeon is away when surgery is due. We're really keen to get on and get the wretched thing out (and make the necessary childcare arrangements for our big ones). But I'm sure it'll all work out.

Stoic still offering a hand to hold. Sorry that things are so very hard. Thinking of you and your dear mum.

Donkeys happy to share the joy of Beatrice!

DonkeysDontRideBicycles Fri 08-Feb-13 00:38:28

Oh that's wonderful news and thanks for taking trouble to post so late, you must be wiped out. I was just checking this before bedtime. You must be so pleased. Very uplifting!

DonkeysDontRideBicycles Fri 08-Feb-13 00:40:12

Well it's such a great name and your LO always sounds so sparky and bright smile.

Trazzletoes Fri 08-Feb-13 07:04:56

Fab news!

minmooch Fri 08-Feb-13 07:35:16

P4B that is indeed fantastic news - both the kidney test results and tumour shrinkage! These bits of good news keep you all going.

I hope you get the date sorted for her op as soon as possible. The waiting is just tiring too as you can't just forget about it. I was not born with patience but in the last 15 months I have had to acquire it from somewhere!

Much love and thoughts coming your way xxx

StoicButStressed Fri 08-Feb-13 12:37:06

Oh Praying - what FANTASTIC news. Am just so happy for you, every step in the right direction both amazing to hear, and is also a step nearer the end of this for BB and all of you. Thank you so much for posting. And please give BB a salmon wrapped olive from mesmile. So pleased for you xxx

domesticslattern Fri 08-Feb-13 22:54:02

That's great news indeed! So very pleased. Onwards and upwards.

aftermay Fri 08-Feb-13 23:04:25

That's good news. Really pleased for you. You all deserve and need some breathing space. I hope you'll have more such good need to come.

Thanks, all.

Appointment tomorrow at the hospital where they'll be doing the surgery. DH has a pal in the field who says that the surgeon who is doing it is the top expert in Europe. It's an understatement to say that that's good to hear. We need it, as apparently the latest MRI shows that it will be a complex operation because there are lots of blood vessels tangled round the tumour. (I'm sure they didn't say tangled, but that was the gist.) We're just praying that they will be able to get the whole wretched tumour out safely.

Meanwhile darling Beazy is fairly perky. She can now open the kitchen drawers so she's highly delighted with throwing the contents over her shoulder...! But her appetite hasn't picked up since the last two rounds of chemo, she's very wakeful at night, and she's stumbling a bit when she walks, or even sometimes choosing to crawl, which could indicate some nerve damage (hopefully temporary, but still worrying).

I'm not sure if anyone's still reading this, but just in case... We're back from the hospital. Apparently it will be a difficult operation. The surgeon will have to remove two of the three hepatic veins in order to get to the tumour. He will do an extended hepatectomy ie remove half the liver, and the gall bladder. He will also remove the tumour which is growing along the track of the biopsy line. If it turns out that he can't resect it safely, she will need a liver transplant.

I was not expecting this. Feeling extremely wobbly.

Charleymouse Thu 14-Feb-13 16:51:33

I know two people who have had successful liver transplants and have done fine. Keep positive, this is a maybe not a certainty. I sometimes feel they give you so much information and all you want to hear is "we will do this this and this and it will all be okay." When they tell you something unexpected all you can focus on is that and the negative aspects associated with it. They may just be coveering their backs, hopeully it will resect and wont be necessary but no-one can predict the future. Keep strong people are praying for you all.

Trazzletoes Thu 14-Feb-13 17:15:17

Of course we are still here <holds hands>

It must have been very scary for you to hear that news today. My understanding is that half a liver very quickly restores itself to a whole liver again.

There is a boy on Joe's ward who has had a liver transplant due to a liver condition. He is doing very well. I can't imagine how frightening this must seem right now <hug>.

It sounds like everything is just all coming together wrong at the moment. Just sending big hugs.

minmooch Thu 14-Feb-13 18:55:35

I'm still here too P4B keeping you and Beatrice very close in my thoughts.

It's all so bloody frightening - they give you lots of information and it's scary, they give you a little information and you worry about what they are not telling you.

Have they said when the op will be?

Sending you much love and strength. xxxx

Thanks all. Sorry about implied whinge, just didn't want to be Cancer Bore!

Op is 1st March.

Skyebluesapphire Thu 14-Feb-13 20:12:12

Still here, haven't posted for a while. Still very much here for you. I'm sorry that the news was so scary. But focus on the fact that she has the top surgeon xx

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