Monday began with an extremely busy day at work, a quality auditor looking over my shoulder most of the day and  a broken aeroplane that needed to go by that afternoon. That all worked out well, I arrived home to hear that Charlotte had swallowed a marble like stone only moments ago. We were immediately concerned this would jeopardise the long awaited op the next day. After consulting with the emergency telephone service our minds were put to rest somewhat.


The surgery day was the usual long wait with Charlotte not happy about not being fed. All went as well as could be expected. We arrived on the ward around 630pm Charlotte scoffed down copious amounts of food. That night was torturous with 2 infants in the same room sharing screaming duties, around 3am the room next door went crazy with ICU doctors and nurses running around frantically. I knew who was in the room and had feared the worst. The following morning my fears were confirmed when i learn t our dear friend Ruby would not make it through this day. We have become quite close to Ruby(12yrs) and her family as they also spend a lot of time in hospital, her and Charlotte had become great play buddies. The look on her fathers face will never leave us, Beck and I have been deeply upset. It was only a week ago Charlotte and Ruby were enjoying each others company and all seemed well.


I went to work on the Wednesday and Thursday nights leaving Beck to fend for herself in Hospital and Madeleine with the Grandparents who she has been spending a lot of time with lately.


After finishing work Friday morning I managed 3hrs sleep before Beck called to say that Charlotte had been discharged, yeah. Then after 3hrs of driving around, picking Beck up from hospital, Madeleine up from Nanny's and home I was exhausted to say the least. I then had to try and sort out our main fridge that had also decided to pack it in, my new I4 phone that had been broken since I received it the week before. After falling asleep on the couch at 7pm I finally made it to bed were i felt like i was in a semi conscious hallucinate state, it was awesome.


Then I was awoken by Beck about the CSF leak, you know the rest. Charlotte is very well, too much so for us, the little bugger woke at 3am this morning ready to play and didn't go to seep again until her lunch time sleep, If she wasn't so cute I think I could have strangled her:) We have to try to keep her head at a certain level so as not too much fluid drains or not enough drains. She seems a lot more exuberant, probably due to the relieved pressure and no chemo for 3 weeks. 250mls of fluid had drained in 24hrs, they expect that to subside now. A bit of trivia, the normal person produces around 500ml of CSF each day that is reabsorbed back into the body.


Hopefully Charlotte can ward off any infections, which will allow the surgeons to carryout the full VP shunt op sometime this week, maybe. There are still a lot of variables, we will know more tomorrow.


We have spent 5 days at home the last month, that coupled with work and life's ongoing commitments, Beck and I are really struggling, but once we get through this we will only have Chemo to worry about and that is nearing an end, YES.