{ DAY 679 } ...❤

Today I had my 18th MRI and CT Venogram in just less than 2 years... The noisy hum of the machine always lulls me off to sleep and I Iose time for a few hours ...💤💤💤 Im sure all that radiation is gonna catch up with me one day down the track... But until then - im just so very thankful for the imaging... Thankful for everything really...x This round of imaging will reveal if the chemotherapy drug #Sirolimus has worked? If the 3 months of use has shrunk the persistant #VenousMalformations in my left neck, skull base, cervical spine... These are the deeply embedded vascular lesions that my surgeon is unable to get to with Bleomycin Sclerotherapy ... He has had four goes at it already, with little result...(turns out they are bloody stubborn😂) Hence the enforcement of PlanB =Sirolimus ❤ So after today's imaging... We will wait for the results.... With 2 years of surgery, travel and treatment there tends to always be alot of waiting... Alot of patience, acceptance and ... Alot of - 'What will be will be' ... We have become 'pros' at the waiting and laughing through it all with a smile x ❤ So we follow up today's epic imaging-athon with my Surgeon and Oncologist on Wednesday... Im so looking forward to discussing the results with them and working out the best treatment plan forward x ❤❤ This treatment, despite its complexity and length...is working...slowly...x And as long as its working just a little bit, Im so very happy ...🥰🥰 I look back on the last 2 years and think WOW.. Im not sure where I would be without this amazing team in Sydney...x ❤ Slowly but surely they are erasing these growths from my body x And I truly think this is a miracle ❤❤🤞🙏🏽 As always... Thank you to my hilarious and loving sidekick Shell Bell who helps me to laugh through it all x Laughter truly is everything when time stops and you feel like you are neither here nor there x ❤❤❤🙏🏽 #VM #VenousMalformation #PIK3CA #Gene #InterventionalRadiology #Sclerotherapy #Bleomycin #Sirolimus #Rapamune #Rapamycin #Oncology #Immunosuppressant #Aneurysm #AneurysmRepair #Sydney #Immunotherapy #EndovascularCoiling #VascularAnomalies #VascularBirthmark #Rare #RareCondition #AneurysmCoiling