Lower limb venous malformations

Hi, my daughter has 2 venous malformations. One in each arm. One is huge and has caused advanced carpal tunnel syndrome in just four years. She has lost the use of that hand already. The other is much smaller, but has grown a lot in a short amount of time. She has had 9 cycles of sclerotherapy with bleomycin. It hasn’t worked. We are now waiting on a very slow referral to great ormond street hospital. Does anyone have any stories to share of similar treatment and what happened in the end? My daughter is just 12 years old