web analytics

Limbo…

I haven’t written for a while, nothing much has happened to be honest. Eleanor has started school now and has settled really well making some lovely friends, the school is great and her teaching assistants are incredible. She is excited to go in every day and skips out smiling every day. It is such a relief and I have even braved my first children’s birthday party! Go me!

We are now ten months in and this is probably the calmest and most uneventful period so far since her diagnosis. Strangely it’s quite unsettling, I almost feel like I am waiting for something to happen. When you have had ten months of ups and downs you can’t help but feel anxious during a time of calm,

At the end of September, Eleanor had her first dose of Cisplatin which included a three night stay in hospital. Cisplatin was one of the drugs Tim was given back in 2004 and we had a long period of anxiety on the run up to the treatment date due to the  very unsettled night Eleanor had when she was given the Cyclophosphamide treatment back in August. The Cisplatin treatment was given over two days, 3 hours on the Friday and 3 hours on the Saturday with constant fluids from 3pm on the Friday until 9pm on the Sunday.  She was also given anti sickness medication every 4 hours to try and reduce the horrid sickness associated with Chemotherapy.

IMG_8093

The weekend went smoothly, Eleanor went off her food on Saturday and said she felt nauseous when her dinner was put in front of her but despite everything we were expecting, and had been told, she wasn’t sick once and she slept through the night all three nights. I had a couple of wet beds to deal with due to the constant fluids but I’d take a wet bed every hour rather than Eleanor upchucking her stomach contents!

A smooth weekend by all accounts – much smoother than the weekend went for the England Rugby team I am sure! We even had a magical delivery of a talking interactive unicorn and a pair of stunning shoes from Meg and Jean, the founders of Believe in Magic direct to Eleanors hospital bed! Thank you ladies, you really know how to make children feel special!

IMG_8120

 

The results from the last MRI show that Eleanor’s tumour has remained stable and unchanged. When we were told the news I didn’t get upset this time, I must have been expecting it. I am thankful there is no growth, but deep down I want some magic to happen and at the next MRI scan I will be praying for some change, even if it is just a tiny bit smaller, just something, something to show that the chemotherapy is doing more to her body other than making her immune system non-existent and her hair fall out!

On her current protocol she has 8 months of chemotherapy left, after that we are told they just scan every three to four months to monitor the tumour – we watch… and wait. I’m so unbelievably nervous about this time and my emotions are totally conflicting. The thought of her not being on chemo anymore seems like a dream, it takes over your life completely and there is a worry that surrounds us every time she gets a slight temperature, but at the same time the anxiety levels are going to be sky high while we ‘wait’ for each scan and ‘wait’ to see if the tumour starts to grow again… and if it does, it’s probably straight back on the chemo to stop it.  I have so many questions for her oncologist next time I see him, I hope he is prepared!

The next MRI is on the 30th November, please keep your fingers and toes crossed for us. We could really do with some positive news!

x

Think like a proton