Just saw your post, my daughter Brooke was born with a very large KHE down her throat and accross her face. She had very bad platlet trapping and had to go on a ventilator for a while due to the KHE restricting her breathing. We started steriod treatment at 2 days old and when her KHE continuted to grow rapidly we moved onto to Vincristince treatment with steriod.
We were very lucky Brooke managed to deal with the treatments very well. She received weekly vincristince treatments for over 9 months and she is 2 now we are still on 3 daily doses of steriod. It took well over 12months for us to get her growth under control.
Please let me know if you would like to chat I can send you some pictures if it helps. Happy to give you my email address and we can talk some more.
Hope your daughters treatment is going well
Cheryl & Brooke