Hallo everyone, with lack of sleep and stress its getting tricky to keep track of who has been uodated and with what, so here is a quick recap of the eventful previous 24 hours (apologies of its repetition for you)…
During Ada’s surgery yesterday one of the veins leading to the heart was punctured (a rare but known complication). The surgical team tried a few interventions but ultimately had to open up her chest to repair the vein and clean up the bleeding.

She was ok through the night, most of her drains have come out, she is no longer in induced sleep but just on pain management, and we had a cuddle with her a wee while ago and she is sleeping peacefully by herself❤ All positives to hold onto🌄

This boss battle has created a few additional challenges for her: her IV port hasnt been put in (she will need another surgery later), and we wont be able to keep an ovary on ice for her which takes away a few choices and options she would have had around a more natural puberty induction and fertility. The big challenge is the sternotomy wound – usually a much longer healing time of a few weeks is needed before starting chemo, but in Ada’s rare case she can only really wait a few days, so chemo is set for Tuesday start. Theres a much bigger risk of infection and healing being compromised.

But this girl is a fighter – she kept fighting strong sedation and has amazed all her ICU staff with her fiestiness🐯

She has a big scar and is starting her massive battle all over again woth a bit of a battered body, but lets all hold on to the positives, keep sending your good thoughts, love and energy to keep her fighting spirit strong❤💚💜