When the consultant said that she we could go home for the long weekend I couldn't believe my ears, I later asked the lead nurse and she said that we could only go home if she was happy that I had been adequately trained on how to take care of her and her central line etc, and that I could administer her drugs. Of course I am a quick study so that I nailed that pretty quickly. I was so excited to go home that I couldn't sleep and was out of bed by 5.45am, of course Paige had a lie in till 7.45am!
Anyway we didn't leave the hospital till 7.00pm on Thursday and of course the nerves set in just as they do when you're taking a new baby home for the first time. Essentially I need to be the nurses/doctors eyes and ears, so I have to monitor Paige, taking her temperature regularly and of course administering her drugs as per the Induction chart that Russell posted earlier. Giving her steroids, anti fungal meds daily and anti sickness as needed and anti biotics on weekends only. (for those that know me well, yes we have an excel spreadsheet)
We still need to be in the hospital on Monday (blood tests) , Tuesday (limbar puncture and bone marrow), Wednesday (Big Chemo) and Friday (more Chemo), but at least we're at home and she is so much happier :-).
The results of her initial lumbar puncture showed evidence of the disease in her central nervous system, which was not good news, so she will need chemo via a lumbar puncture on a weekly basis.
Her prognosis has not yet been shared with us, so fingers crossed that it will be good when all the factors are considered.
Mummy arrives on Friday to stay with us so that will certainly ease the burden not to mention nice home cooked meals.