Here is the low down of what has happened since we came to Kings on Thursday evening. Vega started on first line antibiotics and was given paracetamol for the fever. She hasn’t had a fever since. As a matter of fact she is very well. She didn’t present with any clinical symptoms, no coughs, cold, vomiting… Just fever. So febrile neutropenia. The antibiotics are being continued even though the fever is gone.
We were supposed to have a lumbar puncture and intrathecal chemotherapy but that was cancelled. They spent all morning here at Kings discussing wether or not to give Vega her last dose of cytarabine and in the end they did.
She is still continuing her mercaptopurine too. Chemo is only ever really cancelled if the children are very poorly, so beside the lumbar puncture we are still on track with this part of the block.
Today was circus day. Vega (and the rest of the family) was invited to a special VIP performance at Zippos Circus, organised by a charity called Children with Cancer. There were pre show drinks and after show lunch, goody bags and meeting all the performers and even trying some of the acts yourself. The day was to serve as an opportunity to meet lots of other families in similar situations and to give the kids a really good time. Vega was gutted to be in hospital, but seeing she was so well we were granted special leave today so we escaped a few hours and went to the circus!
It was great and Vega, Lyra and Alys enjoyed their very first time in the Big Top. It was hot though and I was slightly paranoid, touching Vega’s sweaty brow from time to time thinking surely she was running a temperature! But we made it back to Kings and still no fever. Yippee.
So if we can go to the circus and have been fever free for 48 hours then why are we still here?
We came back to Kings and they told us that Vega’s admission poo sample came back positive for C diff! Again! Now, this time there was no dubious poo catching involved- heck I wouldn’t do that again! But Vega is showing no signs that she actually has C diff, which usually causes nasty diarrhoea. So now before commencing with new antibiotics for the C diff they will recheck her poo. My fingers, toes, arms, legs… Everything I can cross is crossed hoping she does not have C diff. Otherwise that would prolong our incarceration by many many days.
I have a headache now, Vega luckily seems quite oblivious to what is troubling me. I am tired from having to be so available for role play. I think I said before that I can only pretend to be the prince for so long…
Here she is doctoring some dollies