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

[marieburd]

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.

Marieburd,

Been thinking about you and your DS all day. I know you're petrified and fear for the future and how the chemo will be tolerated, but you can and will get through this.

H

Yes, hope everything goes as well as absolutely possible for you and your little ds. thinking of you xx

I don't have experience of chemo in a young baby but my dd had chemo aged 2 and I can echo what has been said about how well children seem to cope with it. My dd was sick with each treatment and her tastebuds definately changed too but the sickness didn't last too long.

I really hope everything went well today.

I am so sorry you are going through this. However there does seem to be a good chance LO will do well so try and stay positive, you will find lots of support on MN

My Sis is a chemo nurse so I will ask her for some advice for you and come back tomorrow sometime.

marieburd, have been thinking of you ever since I read your thread and hope that your lo and you are ok.

Hiya marieburd

I'm new to online forums so hope I don't get too much wrong in this post.

Thought I should say Hi as my DD was diagnosed with Retinoblastoma at 12 weeks old. She is now nearly 9 months old and has just finished 6 cycles of chemo. She has just had her first EUA since the chemo finished.

Our babies were a similar age at the time of diagnosis and they are probably having similar if not the same chemo drugs so there may well be some similarities in how they cope. I have to say I think we are very lucky (ha!) at the age they are - my DD has taken it all in her stride. She is still the happiest smiling giggly sweet thing that she was before all this happened. Her development has been completely normal and she has adapted so well to the limited vision that she has in one eye that you wouldn't know anything was wrong - she still finds and picks at the smallest bits of fluff on the carpet and passed all the HV sight checks - which was slightly worrying for her!

I'd be really happy to answer any specific questions about what has happened during her treatment so get back to me if you have any Qs.

Big Love and stay strong when you can but don't try to be a hero - accept help and a few tears along the way is normal!

Animalis x

hiya all
would like to say thank you for all your messages and your support . my ds has had his second session of chemo and can honestly say he has been fine no sickness , he is a little off his food for a few days after but soons gains his appitite back. they do give anti sickness drugs which are working .

animalis which hospital do you go to ? we go to birmingham.

Hi. My daughter was diognosed with RB at almost five months old. She had lots of chemo as well as other treatments. None of them phased her at all however and she never lost all of her hair. She was sick a little and went off her food for a few days after each course but that was pretty much it. She needed no blood transfusions of any kind or any other transfusions such as platelits. My daughter will be two in december and is totally normal developmentally. In fact, she scored at three years and above for speech and language and comprehention. Sometimes I feel I have the right to brag about it because of all she's been through. lol If you have any questions about anything just ask.
Takecare, stay strong, and know the treatment will be over soon.

Bump. Just looking for an update on this thread. My MN friend has just started taking her 8mo DD to chemo and is looking for other MNers who have been through the same thing, or are going through it now and can give a bit of RL perspective on what happens and how babies react.