Run for Joni

A team of mums and dads from Joni-Mai's school have signed up for the Brentwood half marathon on Sunday 25th March. We have decided that we would like the team to run and raise funds for CLIC Sargent because without their help through this, we'd probably be in a terrible, terrible place. Through CLIC Sargent, we have a social worker who comes to see us through our week while we're in hospital but is always available for a chat on the phone. They are an awesome charity and provide things for families that go above and beyond the call of duty.

I'd love if you'd go along and have a look at the team's Just Giving page. Every penny goes to CLIC Sargent, they are an awesome charity and deserve every penny.

MARATHON TEAM'S JUST GIVING PAGE!

And we'd like to say a HUGE thank you to each and every runner on the team, we're so very grateful to you all!!

Katy's Skydive

We are very fortunate to have an awesome friend who has known Joni-Mai from the day she was born, who we love as much as she loves Joni-Mai, that is going to throw herself out of a plane for our Joni-Mai!

Please, go along to her website and have a look, sadly we will be unable to be there on the day as it's Daisy's 2nd birthday and too soon after Joni-Mai's surgery but we wish her every little bit of luck and say a HUGE!!!!!

THANK YOU!!!

Katy's Skydive

Post surgery chemotherapy

This is probably a good opportunity to explain a little about the post surgery chemotherapy.

After the surgery, Joni-Mai will still continue on a 3 weekly chemotherapy regime. Where before, she was having the combination VIDE (Vincristine, Ifosfamide, Doxorubicin & Etoposide) after she will have a new combination - VAI (Vincristine, Actinomycin & Ifosfamide). This will mean a shorter stay in hospital each time we are there. The side effects will also be slightly different but we will deal with these when we get there!

The first chemotherapy week after surgery is scheduled for the 5th March and then will be every 3 weeks from here!

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!!)