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Children's health

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Original poster

waiting to find out if 3yo has cancer

72 replies

Divster · 16/11/2010 19:55

My 3 year old daughter has just had a huge operation to remove a urachal cyst last Wednesday. It was to size of a melon,and had adhered to her bladder and front wall. She is still in hospital till at least Saturday. Bladder had to be cut and they had to leave 20% of the cyst in.she is being so brave.

Anyone offer any advice on how to cope? They said at first it would be a few days till we find out,but mow they are saying Friday. This is worrying me even more as it'd taking longer

OP posts:

BaroqueAroundTheClock · 20/11/2010 18:51

Enjoy the wine - you deserve it after the last couple of weeks.

Aww bless her having lost 5lbs - she's a diddy little thing anyhow (or was last time I saw her in RL)

MmeLindt · 20/11/2010 19:18

Glad to hear that she is doing better.

The doc used to joke that he only had to mention the word catheter for DD to wee all over him.

She has a scar on her belly button but it is slowly fading.

Original poster

Divster · 02/12/2010 13:04

How can I stop looking at her, and wondering if its growing back

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cherrybea · 02/12/2010 13:25

Although my experience is different I feel like I know where your coming from.

DD2 was born with congenital defects of her bowel which required two surgeries in her first week of life. Since then (she's now 6 months) I've been paranoid and worry constantly. It was much worse in the first few months following the surgeries and flares up if she gets sick or when we started weaning or transferred from bf to ff.

All I can say to you is that it gets easier and I took a lot of reassurance from her outpatient appointments with her consultant. As the days turned into months it now feels like a distant memory and the only reminder in the scar on her belly.

I'm so glad your dd's results came back clear. I was told at one of my counselling sessions that when I started to panic or stress over her health to go through the story in my mind until it reached the positive outcome of her being given the all clear to go home. Plus lots of talking to dh, not to bottle any of these feelings up as it builds up and starts to seem worse than it is.

Original poster

Divster · 02/12/2010 15:27

Thank you for posting that Glad your little one has recovered well

I think I am going through an understandable process.

I have just this second put a video of her up on facebook of her dancing. Thinking she is coping with it all alot better than I am! I am shocked at how quickly she is near enough back to normal, thinking just 3 weeks ago....

She does talk alot about it all, she recalls most of it and seems to have it sorted in her little head.

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cherrybea · 02/12/2010 18:41

Bless her, it's amazing how quickly they accept and move on from trauma, luckily my dd is too young to remember her ordeal, but we as parents have to live with it.

I always find the what ifs hardest to deal with :(

Original poster

Divster · 02/12/2010 20:03

So true, maybe thats why children are more carefree, as they dont think about the what ifs xx

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Original poster

Divster · 11/04/2011 15:45

UPDATE

She went for her ultrasound scan today

This was her first scan after the operation, (apart from a very quick one after the catheter was taken out and she couldn't wee) It took 25 minutes (she was a star!) and if it was in her belly it was scanned and measured! Was told no fluid build up found and everything was ok. Then he was taking a long look at her bowels, (I had said she has pain before and during bowel movements) So I had to ask if everything was ok, as you do! He then showed me some areas he was concerned about, that had areas of thickening, but he wasnt sure if it was normal as he didnt normally scan the bowels and would need to take advice, and refer back to her surgeon/consultant. He said he didnt want to say anything as didnt want to worry me over nothing.

So is it nothing, or is something wrong with her bowels? It sure dont sound normal to me

I feel emotionally drained, and wish I could feel happy that there has been no re-growth, but then there could be next time.

What could be wrong with her bowels. Her bowels werent even involved with the tumour

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pinkytheshrinky · 11/04/2011 15:50

I have no advice whatsoever just my best wishes to you all x

saysithowitis · 11/04/2011 16:08

How terrible for you, You needed good news today not more unanswered questions. How long will you have to wait to see consultant? Try not to worry, difficult i know. Perhaps her bowels might have reacted to some of the medication she's been on? Hoping you get some answers soon and your DD feels better.
Very good news that the initial problem seems to have been treated.

Original poster

Divster · 11/04/2011 16:35

Thanks both of you :)

She hasnt been on any meds, only normal childrens painkillers when needed. Not seeing consultant till July. The way its all going to work is we have a scan, then 3 months later see consultant, then 3 months later have scan.....for the next 3 years....

I would think if he needs to take advise on this and then contact the consultant, maybe we would be called back sooner?

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Original poster

Divster · 27/05/2011 14:07

Its never going to end is it? This is how life is going to be now. I cant make it better either, just have to ride it out. Why did no one say? They fixed my child, but didnt give me any warning life was going to be like this. They down played how ill she was, and how major her operation was. So it really did come as a shock to be told she is still in the early recovery period 6 months on!

She was 3 when she had a laparotomy, 3 weeks later she was dancing and running around. Why now only be told its still healing inside?

She was taken in hospital on Monday, with partial bowel obstruction, which is quite common after a laparotomy, why did no one tell me this? She now has adhesions, I have no idea how bad these are going to get.

She is now fine and running about again, fit and well, but is still gripped with pain every now and then.

My child appears fit and well, but really she is not. Every major pain episode, she has to go to hospital and have an xray at the very least. Here was me thinking that feeling her tummy every day and not feeling any lumps would be enough.

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MightyAphrodite · 27/05/2011 14:28

I wish I could say (or do) more than just hope everything turns out OK for you. I've had health scares with DD2 and it seems unfair that little ones should have to go through so much, and be so courageous. Your DD sounds like a fighter though.

Original poster

Divster · 27/05/2011 14:36

Thank you, she is a real fighter, very strong willed!

Sorry I dont post here much, but I lurk, I just need to write about this else my head my explode....

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curly10 · 27/05/2011 18:06

I don't know if this is any help, but my DS had a bowel op just after birth and like you I thought he was then OK. At 16 months he also developed partial bowel obstruction and had to have a further op to divide the adhesions.

He is 11 next week and has never had any problems since!

Original poster

Divster · 28/05/2011 14:49

Thank you, very glad he is ok now :) What were his symptoms like at 16 months old?

Been out shopping today, and she is still not right, very up and down which I guess is the pain. I am thinking of going gp next week and discussing getting referred back to the consultant earlier maybe. Due to see him again July, would he want to see her earlier if she was having problems?

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curly10 · 29/05/2011 12:15

We had a couple of weeks of him being not quite right and very grisly- probably due to pain. He also wasn't eating very much and being sick occasionally, his tummy also got distended.At this point he was going in and out of obstruction;when he properly went into obstruction he was violently sick and in a lot of pain but thankfully was operated on very quickly. Obviously I didn't realise what was going on, I thought he had a mild tummy bug or virus.
.

I would definitely ask to see your consultant sooner than July, they might be able to do something routinely rather than waiting for it to become an emergency and its not right that you're DD is in pain.

Hope your GP is helpful and you're DD is better soon.

saggarmakersbottomknocker · 29/05/2011 15:38

Divster - I had extensive bowel surgery as a baby and was hospitalised a few times as a child with bowel obstruction due to adhesions. Generally my partial obstructions settle after a couple of days nil by mouth in hospital. I did have a full obstruction in my twenties and had surgery for that. Since then I've had 3 children and no further issues. I'm 47.

It will settle down - honestly - she's not long post such major surgery and you're right outwardly all is healed but inside takes much longer. Take heart - I know it's a worry but it will improve.

Original poster

Divster · 01/06/2011 13:28

Thank you :)

She is back to see consultant next tuesday, and gp is testing her for coeliac disease to rule that out.

So glad I took her to the gp yesterday as hospital notes say she has partial bowel obstruction, and her bloods were not ok!

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Original poster

Divster · 07/06/2011 08:39

Off to Leicester Royal today, her bloods came back as a bit anaemic, but theya re not sure of the cause, as the other test for coelica hasnt come back yet. Hope we have her on the road to being sorted today

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thumbwitch · 07/06/2011 09:21

hope it's all ok and there's nothing too serious going on. :)

slinkyboo · 07/06/2011 19:10

My thoughts are with you...what a horrible, worrying time. Hospital sounds thorough and hugely expert, though, so you are in very good hands...

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