VIDE 6

VIDE 6 is the last round in her current course of chemo and it all went to plan!

We started the week with an ECHO and an appointment with a cardiologist at Great Ormond Street hospital. The ECHO technician took all the relevant measurements and the cardiologist confirmed that Joni-Mai's fractional shortening measurement had improved. The measurement had increased from 31% to 33% and they were happy to go ahead with the Doxorubicin in the last treatment (Doxorubicin is the chemotherapy drug that caused the heart function to drop). Joni-Mai tolerated her medicine REALLY well this time, she had no sickness and although getting fed up and being tired, it was an almost bump free week. We also had a meeting with the specialist sarcoma nurse who delivered the news that Joni-Mai would be able to have a non-invasive grower fitted in her hip replacement - this means to lengthen it as she grows, it is a simple procedure carried out under an electromagnetic field instead of a mini operation. To say we were pleased was an understatement! We were also given some prints of imaging scans that she's had. I will post pictures of these later.

So, with this course of VIDE over, we now have to look forward to the end of the month, the date of Joni-Mai's surgery has changed from the 20th February to the 22nd of February. This will be the peak of the huge mountain we have to climb and as we near it, nerves are fraught and stress levels are heightened but it is vital for her. It wasn;t until yesterday that I realised that this was, in fact, a life saving operation. The magnitude of this problem has also hit me full force and coming to terms with it all over again - though this time completely aware of the problem and not feeling like I'm in a bubble.

Joni-Mai will spend 2 weeks in the RNOH in Stanmore. She will celebrate her baby sister's 2nd birthday in hospital encased in plaster but with a shiny new metal bone - which she is thrilled about! We will have lots of time and space for visitors, so if anyone that knows her, would like to come and visit - you're more than welcome! (Just give us the heads up!!)