Hepatoblastoma/liver transplant

[LimeGiraffe]

Are there any other mummies who have been through either of these???

[strawbs]

My DD has a liver disease and will need a transplant, when she needs one though we are not sure. She's four years old now and we have been on a crazy rollercoaster since she was three days old - the hospital is our second home.

I'm here if you want to talk. All the very best!

[LimeGiraffe]

My DS was diagnosed with liver cancer at 15mths and had a transplant at 19mths. Hospital (Brisbane RCH) was our second home for a year too. The transplant/surgical team is amazing up there.
4 years is a very long time to be in and out so often! I have so much respect for you. Being Super Mum can be so difficult at times!
How do you go about your daughter with school/preschool/daycare as she's so ill? One of my big struggles now is that he gets sick so often with little viruses etc, and it stops him seeing other kids his age. :( but his speech delay is much better now with some help. He gets to daycare as often as his health will let him but it's such a stress to leave him with others knowing how precious his life is! (I'm sure you would know the feeling!)
Hope you have a wonderful day xx

[strawbs]

Wow - sounds like you have been on a pretty incredible journey so far. How is your DS going now?

We weren't sure when to start our DD in preschool - worrying about all the viruses she would be picking up. As I'm sure it's the same with your DS, as soon as she has a temp of 37.5 or above we have to take her in to emergency and she's admitted for a minimum of three days. Huge impact on her and family life. But, we figures we couldn't keep her out of preschool for ever - she's going to have to go to big school soon enough and all the same viruses would be there waiting for her. It's a pain when we visit with friends and one of their kids is sick and before you know it, a day or two later DD is sick and we're in hospital. I'm sure some poeple think we are a bit too protective, but it's not them that have to cart their child off to hospital at all hours.

We decided to have her start preschool at 3 years of age, which meant I couldn't return to fulltime work after having her, I eventually had to give up part time work two years ago as she was having too many admissions (every 6 weeks at that stage). She's struggled alot mainly with internal bleeding and incredible itching, but she's on three meds per day, which isn't too bad. We go to the Childrens Hospital at Westmead and we love our team there.

Great to meet someone who knows what it's like! x

[LimeGiraffe]

Ohhh that sounds so similar to what we went through with DS's chemotherapy. It's not as bad now that he's getting an immunity to some bugs but he still seems to pick up every gastro strain under the sun which is a nuisance because they're just so contagious :(
It's funny how we can say "Oh they're only on three meds a day which is pretty good" and then you look at other families and none of their kids are on any!!!
I love my DS to bits, but sometimes I can't help but feel a little jealous of the families with a less complicated lifestyles. But what we go through is nothing for our little ones well-being. There is nothing more rewarding!
It IS wonderful to meet someone who knows what it's like! I hope you're having a good week!! xx :hugs:

[strawbs]

I know what you mean about feeling jealous sometimes, I feel bad that my DD has to go through so much. The other week she asked me when she would be able to stop taking medicines and I didn't have thd heart to say never, so I just said 'I don't know' and she said 'maybe for my birthday? It could be my present.' I felt so, so sad.

She's tough, but she shouldn't have had to go through so much in her (almost) four years of being here.

I feel for you and your son - I hope it's a smooth road ahead for you!

[LimeGiraffe]

Hey Strawbs!

Just a note to say HI!! :wave:

And that I hope you and your family are doing well :)

[strawbs]

Hi there! :wave:

How's things with you and your DS? We're having a few issues at the moment. My DD is suffering terrible stomach pains which seem to be liver related, but bloods and ultrasound aren't giving any clues as to what's wrong. She sometimes is doubled over in pain, but they don't know what's going on. :confused:

I feel pretty helpless, I just wish I could be the one going through all of this, not my 4yo daughter.

And the ENT wants to take her tonsils and adenoids out which is great, but she's worried that she may have some permanent hearing loss due to a particular antibiotic that she has every time she's in hospital. Nice. Seems the good news just keeps coming. Also, due to her high risk of bleeding, the ENT is not sure they'll be able to do the op. I really hope they can. She's had tonsillitis about 9 times year.

What tough kids we have, right? My DD is stronger than alot of adults I know!:D

[LimeGiraffe]

Ohhhhh, that's terrible :( I'm sorry to hear that! I hope they find out what's going on asap.

What do your gastro team say about the tonsil op? I hope they can take them out for her without much hassle! Tonsilitis is horrible, I've had it a couple of times and it was NOT pleasent! Poor little girl! She sounds like a very tough one though :)

My DS is doing pretty well despite the winter bugs he keeps catching, and throwing dirt in his eye at the park on the weekend - yay conjunctivitis!! Moooore antibiotics.
He has a habbit of vomiting for 4 or so hours at a time every couple of weeks, no temp or anything, so they're thinking it might be a 'mechanical' thing - more tests soon I suppose.

SUCH tough kids! Definately stronger than any of the people I hang out with (I'm 22, so most of my friends haven't really matured yet, except for other mummies :goodvibes:)

Hope things improve for you soon! I'll be thinking of you :yes:

[LimeGiraffe]

Hows it going Strawbs? Any answers?
Thinking of you guys xx

Sent from my Android using Bubhub

[strawbs]

Hi!

Thanks for checking in on us. We've had some good news (finally!) in that her hearing loss isn't permanent and grommets should help. She's just constantly sick due to her tonsils now, with terrible sleep apnea and she wakes up each morning with dried blood all in her mouth from het gums drying out from sleeping with her mouth open constantly. Anyway, looks like she may be able to have her tonsils and adenoids out and grommets put in, in about a month.

Liver-wise, they are keeping a close eye on her as she's lost 2kg. This can easily be attributed to her tonsils, but with other things that are going on, they're concerned. The stomach pains continue, but they won't really know if her weight loss is a sign of her worsening liver disease until about one month post op, after recovery. Then if there are still concerns, they'll probably look at listing her for trabsplant. Gulp.

Due to her upcoming op, she has to have a scheduled endoscopy cancelled, so that's a worry, but it has to be done. Just hope she doesn't have a bleed. Thinking positively, she'll be fine!


On a good note, she got a new pair of glasses yesterday and she loves them! Very sophisticated for a 4yo!

How's your DS going? I hope all is good!