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chemotherapthy in babies , dont know what to expect, please help.

34 replies

marieburd · 24/09/2008 19:27

hiya my ds is 19 weeks old and has retinoblastoma (eye cancer)starting chemo 29th sept , can someone please tell me what to expect , and anyside effects . i know what the doctors say but it would be nice to here it first hand.

OP posts:
GordonTheGopher · 24/09/2008 19:28

Sorry I don't know anything about it but just wanted to wish your son the very best.

LilRedWG · 24/09/2008 19:28

No experience or advice, but plenty of sympathy. Please use MN as a support when you need to talk.

jimjamshaslefttheyurt · 24/09/2008 19:34

Gosh I'm sorry. Glad the chemo is starting quickly so you're not hanging around. There are some people on here with some experience so I'll bump this back up for you.

Cocolepew · 24/09/2008 19:39

Bump

I just want to wish your DS all the very best.

CurrantBM · 24/09/2008 19:43

Bump.

No advice, just sending you and DS good wishes.

Nemoandthefishes · 24/09/2008 19:43

sorry to hear this, lots of sympathy and support here
bumping for anyone who might have experienced

Cocolepew · 24/09/2008 19:44

.

georgimama · 24/09/2008 19:45

So sorry to hear this.

I don't know anything about the condition, but have just googled and found this link which seems fairly factual and research based. From what this site says at least, the prognosis sounds pretty good. Good luck, will be thinking of your little one on the 29th.

Cocolepew · 24/09/2008 19:51

.

Cocolepew · 24/09/2008 20:29

bump

Ronaldinhio · 24/09/2008 20:35

bump i hope everything goes well

SheikYerbouti · 24/09/2008 20:38

Yes, best wishes from me too. I hope everything goes well, and also that someone with experience of it comes along soon.

Sycamoretree · 24/09/2008 20:45

I don't know either - I have a friend who's DS 8 months is awaiting news on how they will treat her son's tumour on his spine. At the moment, we are all clueless and so I'll be watching this thread for any bits of wisdom.

All I can say from experience with my father having chemo is that you can expect an effect on appetite and energy levels. How this translates to a baby I've no idea, but presume you will also need to be extra vigilent about sterilizing etc.

My heart goes out to you, but you know he'll be ok, don't you? They are amazing at treating kids with cancer - the success rate is really phenomenal compared to the rest of the population. Stay strong - he'll be resilient - they really are at that age. It's much harder on the parents.

soph28 · 24/09/2008 20:46

bumping for you too. Hope everything goes very well. It must be a difficult time for you. All the best for your lo.

Danae · 24/09/2008 21:21

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Danae · 24/09/2008 21:26

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Danae · 24/09/2008 21:29

Message withdrawn

uptomyeyes · 24/09/2008 21:33

I'm sorry I have no direct experience of either retinoblastoma or chemotherapy in babies - I just wanted to send my thoughs and wish you and your lovely baby the very best of luck for his treatment.

megcleary · 24/09/2008 21:48

bumping for ya & hope it all goes well i imagine where the chemo is given has a specialist nurse maybe write a list of questions for them

CurrantBM · 25/09/2008 17:31

Bump

Majeika · 25/09/2008 17:33

hope it all goes well

and there is me going about ds and his tonsils!

orangina · 25/09/2008 17:38

Bumping for you and I hope everything goes well...

hsanders · 26/09/2008 00:21

Hi Marieburd,

Sorry to hear about your ds diagnosis but please let me reassure you that children really are resilient - I know this because my 3 year old DS has a cancer which only has 50% chance of survival / cure (whatever you want to call it).

When he has his chemo, he's in hospital for about 48 hours and is usually his normal self, just hooked up to his machines adminstering the chemo drugs and then fluids to keep his system from becoming damaged by the chemotherapy - now there are over 300 drugs which are called 'chemotherapy' so it simply depends on what drugs they are and how the body can be affected.

Our DS plays, sleeps, watches DVDs and is sick with his chemo, but as soon as we have him home again, he's pretty good. His appetite has gone off as his taste buds have completely changed, but he drinks lots of milk which is good.

Children tend to play alot anyway and this does not really change too much when having chemo. I know your DS is 19 weeks old and so you'll probably still see the same developmental things happening. In fact, the nurses and doctors always encourage us to do normal things. If it was me with our DS's cancer, or you, we'd probably want to lie in bed in a darkened room.

I can categorically say we're amazed by our DS's outlook - of course, he and your DS won't use their energy worrying about we worry about, so they get through things alot better than we parents.

Not sure I am allowed to post my address for the blog I have been writing since our DS's diagnosis back in May, so do feel free to email me and I will send it to you - and anyone else who may have had their life changed and turned upside down by children's cancer.

Good luck Marieburd and feel free to message me. Hope your DS's chemo goes okay.

kee27 · 26/09/2008 13:17

all the best hun x

PollyLogos · 26/09/2008 17:45

Hope everything goes well for your son. I will be thinking about you next week.