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anyones kids undergoing or has undergone chemo? Rss

just thought a little support thread might be handy! My almost 3 year old was diagnosed 31st Jan with retinoblastoma. cancer of the retina. in turn she has lost her right eye, and is about to hve her fifth of six rounds of chemo this monday and tuesday. so not long for us to go! just thought would be quite nice to hear some peoples stories, good or bad, and what you found helpful, just anything really. Mckenzies cancer can be hereditary. so at diagnosis, hubby myself and Kenzie had blood taken. In april this year we got the news that yes indeed Kenzie has the herediatary type. HOWEVER hubby and myself are not carriers. she has anew mutation which means the hereditary part starts from her. Our new baby who is 7 weeks old, had an increased risk of developing the gene as well. However her risk was only 2% and she has come back clear as a carrier, so that is good news. At the moment, Kenzie has only lost one eye, and there is no sign of it in the other, but with the hereditary type, she is at increased risk of this happening. and normally at diagnosis, with hereditary, it presents in both eyes. they are hoping she is going to be one of 10-15% with hereditary retinoblastoma that present in one eye. she is doing splendidly well and coping with everything with such gusto, she has done us proud, and in fact has kept us all going! kids are amazing, we have learnt to never underestimate them at all. so anyones stories please tell if ya ilke. would love to hear! if ya want to talk at all msn me on k_lovegrove@hotmail.com or email us at kelly_neil@xtra.co.nz Cheers Love kel xxoxo

Mckenzie Cate 28/7/04 & Lexi Breanne 10/5/07

hi, i have no experience with this and hopefuly never will but i want to give you and your family big hugs, what a wonderful little girl you have and i hope the outcome of this is the best it can be. is this the thing where you take a photo and they have a white spot in the eye? i ask because i remember a thread on this a little while ago, im not sure if it was you that started it though.
I'm not in your situation but I just wanted to wish you the best of luck with everything!

Your little one sounds like a real fighter!

Wishing you all health and happiness,

Ana & Nina
x
Hi kakkles,
I'm sad to hear about your daughter having to go through something so yukky, at such a young age. My heart goes out to you and your family!!
My 18month old son needs to have chemo, i was wandering if you could tell me anything about it please?
wishing you all the best
kristy x

mummy with DD 7; DD 4; DS 24 months

Hey Kristy I am online now on msn if you wish to add me if ya have msn? I tihnk it depends on the 'cancer' as to how the treatment is given. Kenzie has 2 days every 28 days. day one is 2 1/2 hours and day two is 1 hour. if she was six months older would have been 5 hours day one and 2 hours day two. she is given three drugs. Vincristine, carboplatin and etoposide. we got told she would loose all her hair. she is currently about to on monday start 5th of sixth cycle, and has majorly thinned but not lost it completely. She has dealt with it a whole heap easier. She has two anti nausea drugs, one is a patch and the other is a wafer we dissolve in drink called ondansetron. the first two rounds were hard. but then we got told we should be putting her patch on day before first chemo. and since weve done that shes gone from vomitting at 15 minute intervals for over 12 hours to maybe one or two vomits max. BRILLIANT! so much easier for her. and she actually loves going away! we stay at ronald Mcdonald house or 'donalds' as she calls it. she has never moaned, or complained, and to be honest i tihnk the young age, where they have naivety has helped a whole heap. they can't fully comprehend just how bad it could be. I wont lie, the first visit is always the hardest, i must've balled the entire time sitting there watching her hooked up knowing she was having poison pumped thru her little body. She has had big issues with constipation which the drugs can do. and that has been our biggest issue. so she is always on meds to help her go well not really meds, but rather lactulose. but its now quite nice going down, as u get to meet so many other parents going thru treatment with their kids, and our monthly trips have become more like a 'catch up' with the wondeful people we have met. we sit around chat drink coffee and play with the kids. Kenz has her chemo thru a porta cath. how is your boy going to recieve his? i am more then happy to talk/email to you anytime aye. so any questions you have please dont hesitiate to ask and i can tell you our experience. lots of love and best wishes, Kel xoox

Mckenzie Cate 28/7/04 & Lexi Breanne 10/5/07

and yes Kenzies cancer is one that can be detected via photos. if we had known or heard about this, it mightve been more noticable to us last september, if we knew what we were looking at. it relaly does look just like a flash bouncing off her eye. but typical digital camera users, you take a pic, and forget about it, only looking at it months later.

Mckenzie Cate 28/7/04 & Lexi Breanne 10/5/07

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