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

[wuglet]

Hi
Sorry you and DD are having to go through this.
No experience to offer but happy to lend some support.

[MamaG]

Sorry to hear youa re going through this x

[noddyholder]

No experience here either but thinking of you.Why is calpol a no no?

[treedelivery]

No use nor ornament here but am very sorry you are living this and happy to be a pair of ears.

[titferbrains]

thanks all, good to have support. She can't have calpol as it can mask symptoms of infection to which she is very sensitive - chemo kills off cells which fight infection.

Tough going as a lot of advice talks about how children rather than babies respond. I haven't seen any charities/organisations that are for babies with cancer but haven't looked very thoroughly.

Don't want to rummage on internet for forums in case of turning up depressing horror stories.

Trying to keep positive but also allow myself to deal with this emotionally.

[littlerach]

My step children's cousin has this.
They have been told it has very good success rates.
I believ that this wbsite had helpful info on it.
Best wishes ot you and your dd.

[treedelivery]

Macmillan lists the suport and charity groups. I'll look through them if you are frightened/don't want to - for info on babies I mean

here

[totalconfusion]

One of my closest friend's dd had Wilm's tumour on her kidney. She is French and her DD was 2 I think when diagnosed. She had several rounds of chemo and it was quite a rocky road. However, she has fully recovered and is back at school. She was 7 this year! I did google it on the internet and to be honest, I read quite positive things about it. So sorry that you going through this and I do hope that you too have a positive outcome.

[FrazzledFairyFay]

No experience here either, but a few more positive vibes

[titferbrains]

loving the name moodlum.

tree is that you ? had a look at macmillan list at hosp but couldn't find anything relevant. didn't look properly tho.

thanks everyone. pretending I have a regular baby now and going to google something cheery I think.

[treedelivery]

I am tree. Who are you??

[titferbrains]

little rach thanks I'd seen that link, lots of good clear info there. again am a bit scared to follow links. All the docs have said to steer clear of the net...

[moodlumthehoodlum]

I'm sorry and I can't really help other than to virtually reassure, and keep fingers crossed for a good outcome. These little babies are always stronger than they seem...

[treedelivery]

If we know each other do feel free to cat me.

Will look about for friendly sites for you.

[treehugga]

Shurely shome mistake. Tis tree here. xx Titferbrains. Treedelivery must be my alterego.

Off-thread story time. Treehugga was my nickname on Guardian Soulmates when I was internet dating 3 Novembers ago. "Treehugga: Seeks tree. Not just for Christmas". This was possibly the wittiest moment I have had online. And it worked! Reader, I married him. Well, without the marrying part. Yet.

Anyway titferbrains, How's The Noise this morning? Or The Teeth?

Hope someone turns up here who knows a bit about LO's likely response to the chemo. xx

[CMOTdibbler]

How old is DD Titfer ? I work in oncology (but don't do chemo), and have a friend whose lo had chemo for rhabdo aged 12 months, and another whose lo had neuroblastoma at 18m - both long term survivors.

How has she been after other GAs (I assume MRI was under GA) ? That can make them irritable, but if dribbly, quite likely teeth

[treedelivery]

[moodlumthehoodlum]

Treehugger that's hilariously funny. Who wouldn't go out with you based on that humour?

Titfer - hows things today?

[titferbrains]

Am thoroughly enjoying tree related chat and witticisms. I remember I used to be funny once.

[lisad123]

I guess each case is different for each child, so just rememeber that you know her best, and any concerns send her straight back. Is this her first round of chemo? I'd guess they are worrying about neutropinic (sp?) stage, which she really need to be in hospital for. Keep a close eye on temp and how she is in herself.

Also Macmillian have wonderful support and they is a chat forum but also boards aimed at the types of cancer www.whatnow.org.uk

Do you have a macmillian nurse yet? If so do use them, they are fab

Hope chemo works quickly and your dd is better very soon. Thoughts and prayers

PS: I also find writing a blog helps you sort though everything and saves you repeating same info to family and friend when you want normal some days x

[titferbrains]

Things going well today. Met community nurse who is lovely, very down to earth, chatty, positive, easy to talk to. Incredibly reassuring to know she's at the end of a phone.

Getting nervy about tmw, wondering if DD will get upset when she sees uniforms, hospital environment etc.

CMot, she has been ok after GAs, a bit cranky in retrospect, but not too bad. Night waking all over the place tho, and she's very whingy when she does wake up which didn't used to be the case...

She is 8mo. and a delicious cutie.

[titferbrains]

am not really ready to get into macmillan yet. perhaps am struggling to admit that this is happening but really don't want to hear anything bad because DD is doing well. I cannot carry anymore stress than I absolutely have to, iykwim.

[lisad123]

macmillian took me a while too, but handy knwing its there if you need them. I refuse to read any neg stories, just the positive ones, so know what you mean.
I did a quick search and all stories are positive and it seems to be good sucess yet in cures.
Do you have much family support?

[treehugga]

Hi titfer. How was today? Hope all OK. Bet LO charmed them all again. xxx

[titferbrains]

hey hugga

had a good day, tho ended with yet more banana and I cut her hair in a fit of "let's get this over with". Have just put it in the envelope in her baby book and having a moment wondering whether to write about her getting sick so she understands what happened when she's older.

they put her on high energy milk, hope it helps. chemo all went fine, nurses all very sweet and kind and they made a big fuss of me and her, it's a small thing but it makes you feel good to have gotten thru another session.

off to watch tv and eat supper and generally mong out. oh the joy.