Thanks Cheryl and Dormer family for replying to my post. I was thinking "gee no one has replied yet" after I posted it up while ago and I realise that it is pretty rare case. Thank you for your input on how your children have progressed.
Zali's KHE on her arm has not grown or shrunk yet and her platelets level is stable so the tumour is sitting quietly for the moment. She is now 7 weeks old and I dont see her in pain yet as the doctors says there are reports that it can be painful. Its hard to tell bec Zali is only little!!
Tomorrow she will begin her chemotherapy treatment, Vincristine although needs surgery for central line. So its all new to me about the treatment and i wonder what are the side effects for your child? Dr told me its pretty safe chemo and minor side effects like hair loss, constipation, nerve effects to the eye, voice box and throat (cough spasms when drinking). Dr didnt say anything about steriods.
She will be taking it 20ml a week for 12 weeks then afterwards fortnightly till tumour goes away. So we hope that it will be sucessful and for me to hope for your child as well. Zali's doctor was pretty positive about it and says can be treated. The information on the internet can be so scary to read negative sides about KHE. Also her Dr says there are only 10 cases in Australia!
Thank you for getting in touch and here is my email address firstname.lastname@example.org
...... anytime contact me and it will be great to get feedback on our kids progress.
I would like to attach photo of Zali and her arm but I dont know how to do it on this post????
TC and all the best
Gemma and Zali