DD, 8mo, has wilms tumour on kidney, started chemo last week, reassure me pls!

[titferbrains]

Any encouraging stories or advice? I'm finding it a bit tough to strike a balance between being vigilant about infection/cleanliness and never leaving the bloody house.... DD refused boob all night last night after MRI scan yesterday morning. She is dribbling like mad so impossible to know if she is off food due to meds or teething or combo of both. And of course cannot give all -calming calpol anymore, SOB.

Anyway, she has 3 more chemo treatments then surgery to remove. Praying like mad that it will be stage 1 only but may be stage 2 - there's a possible thrombus (clot) in a nearby vein.

Great to hear from anyone who can offer experience and support to get me thru this!!

Thanks x

Hope everything still going OK.

Not trying to piss all over you but might want to rethink your last sentence.

Does she have much hair? My DD was pretty much bald until she was 18 months.

Glad the chemo seems to be going well (or as well as it could)

Bumpity-bump

Hey titfer, how's it going? Back in town now so will be in touch. Hope the little one is doing okay and that you are looking after yourself lots too.

[Waves to treehugga and goes a bit gooey at her Love Story]

wuglet massive whoops there, wasn't thinking.

she has a fair bit of hair or at least was born wiht loads which was falling out and b
eing replaced by some lovely new stuff. Doc said hers will fall out in next few weeks. It's dark and she's pale so will be noticeable.

Hubby has been a star, washing up, made brekkie, took DD from 630 this am, let me lie in. Gold star.

Glad you had a nice lie in today

Hope everything well with you

I know a little girl (my God-daughter) who was diagnosed a Wilms tumour on her kidney. She was 8 months too. She went through an op to remove tumour and kidney and then a very loooooong session of chemo.

It was grinding and hellish for the parents and I have no way of softening that blow.

They did, however, meet and get to know some fantastic families going through cancer with children and the support both outside the mdical profession and within was, quite frankly, phenominal.

Lizzie is 4 now and she starts school this September. If you met her, you would never know that this little girl had been through all of this.

We were told that childhood cancer is a whole different kettle of fish to adult cancer and is, very often, easier to treat. Wilms tumours especially, are treatable and success percentages are excellent.

The link below is to Lizzie's most recent fundraising page. I'm not asking you to donate (her mum and dad don't know I Mumsnet and I'd like to keep it that way) but it shows you how well she's doing!

here

Gosh doodle thanks so much for your post. Scary to hear about the long journey post-op particularly as I'm finding things tough right now, but I'm delighted that Lizzie is doing so well.

Would it be awkward for me send them a message? I really would like to speak to other parents of babies (NOT children) who've been thru this, I've found motherhood incredibly tough so far and cannot believe the job just got so much harder. Just would be good to hear from someone who understands the awfulness of poor sleeping and poor eating when there is nothing you can do to improve these things except grit your (already worn down) teeth and wait for time to pass. We've just spent an hour feeding my DD and I calculated she consumed a princely 47 calories, if that.

Sorry, I'm not miserable, just incredibly daunted by all I have ahead of me.

I think they would be glad to speak to you. It would give them a chance to help someone along the process and give something back, IYSWIM?

If you email me on [email protected], we can have an email chat about it. Dunno what story we're gonna come up with for how you and I know each other mind!

titferbrains sorry no help at all but want to say I am thinking of you and your DD. I hope she is ok and looking at the link sent by doodle there is so much hope. What a cute little girl on the link. Could you just email through that link to her parents so that doodle is out the equation? Just explain your circumstances? Otherwise you could just say that doodle responded to you on a web page when you asked for info.

I also would not blame you for being miserable, it is tough seeingy our child poorly at any time so you have a difficult time but know there is light at the end of the tunnel. [big hugs]

Just checking in to ask how you and DD are doing?
Hope everything going as well as it can be...

Thinking of you

Hi all,

DD not gaining weight so we're looking at new strategies. Off to hosp again tmw so will report back after that.

Really hope that removing tumour will sort out these problems, her appetite seems so tiny and the irony is I'm a complete foodie so it's pretty upsetting.

Wish I could seduce her into eating with a warm brownie or a homemade cake or some of my minestrone or... BEst just focus on milk I think.

Hello titfer - hope the appointment goes well today.

I'll have missed you I expect but am wondering, as feeding is so long winded and for so little result whether it may be worth asking about overnight pump-feeding? It can take the pressure off getting calories into them during the day although conversely it can make them less keen to eat in the day too. Difficult.

WE have been at hosp doing pump feeds and they've worked a treat! Yay!

Glad to hear it

Oh good news titfer.

I fed the bed fairly often with dd - nice and messy. Hope she starts to gain weight now (or sustain at least).

thinking of u, keep checking. how you doing today?

thanks, DD is doing ok tho has developed a cough from tube, brings up phlegm occasionally, which isn't pleasant. But mostly holding down all the ng feeds - what a relief.

Has now got a 3rd tooth which is scaring the crap out of me as I think she's going to take off my nipples every time we feed.

She still won't take a bottle and I keep forgetting to work on using doidy cup. So much to remember to do right now, it's knackering actually. Trying not to beat self up when I forget.

We are hoping she maintain weight now until op. THat is best case while she's on chemo.

Scared about the op. Letting myself be scared and talk about it to DH which helps a lot. Think we're both crapping ourselves.

Still can't believe this is happening to us.

Chemo is horrible stuff and really takes it out of people, especially if having to battle other things like coughs and colds ect. Please dont put too much on yourselve and do as little as possible in the house and please sleep and eat well (I know easier said than done)
hope the next few days brings some nice days for you

My friends dd had wilm tumour she was diagnosed at 3 and is now a healthy happy 7 year old. It wsent easy but they got there in the end. She had her kidney removed and then endless sessions of chemo x Keep hopeful, sneding kisses to you and your family x

Just checking in - hope everything Ok.
When is the surgery due?

Hope everything's OK with you all titferbrains. Just to say, I used do research on Wilms' Tumour, and as everyone has said, it is really very treatable and usually has a very good prognosis.

Hey everyone, thanks for keeping up with my thread.

We are back at GOS on Monday at sparrow's fart 0730 and her op will be some time that morning I think. Had a nice day with family and friends so not feeling too anxious. Distraction is key.

DD on great form post transfusion on Fri. It was a long dull day of waiting which ended with her vomiting up her ng tube whilst pooing - Nice! - but nurses were fab and sorted her out quickly.

Am giving her lots of cuddles and being very silly and loud most of the time to stop myself from being sad about op. She currently thinks the sun shines out of mummy's bum so it must be working.

Feeding still slow and painful but community nurse very supportive of me and my concerns about this. BFing getting more uncomfortable as she's sucking quite hard and it makes the new (3rd) tooth scratch nipple, not nice. No blood yet... but I'm truly scared. Will be trying her on the bottle again, and again, and again...

Won't be posting much after tmw as will be at hosp. Hope all well with all yr DCs.

Good luck for Monday. Will be thinking of you, hope it all goes well.

Good luck for tomorrow hope everything goes well.
re the BF - the teeth do become less sharp as they come through (probably doesn't help to know that when you feel the little vampire at it though!)

Hope everything went well today.
Thinking of you and your DD

Dear tfb. Hope all went well. You sound so amazingly positive and sensible-what a lovely mummy your little one has. Would love to hear any more news when you are able to post. I have worked at GOS and my cousins little boy had major chest surgery there when a few months old-they were wonderful.