While we waited to be discharged Bianca and I made a ghost puppet. She even helped with the sewing a bit.
And then Bianca played with a fairy book where you stick fairy stickers onto a background and you can sort of make a story out of it. She really liked it and we imagined what it would be like to ride on a snail or fly a dragonfly or have a unicorn (like some of the stickers).
Of course as for the rest of the day, well the only word that comes to mind is "FRUSTRATING". So suddenly we were informed that we will now be seen on a Monday and that we are now effectively a Monday chemo (apart from the daily chemo). Okay, that's fine. And so by the way, the oncologists in Christchurch don't feel that they should be seeing kids on maintenance so much anymore and that it will be perfectly fine for us to be seen by the one paediatrician whom they have now pretty much put in charge of oncology kids. So now the oncologists will come through every so often and they will only see the kids they feel should be seen by them and probably no more than 6 at a time. Oh goodie! So even though Bianca has had an unknown viral infection, several tummy bugs, kidney stones, a bronchospasm that required immediate assistance, a severe reaction to her chemo, pneumonia, several neutropenic days, developed shingles, had low immunoglobulin levels, spent more than 100 days as an inpatient in hospital and recently (on maintenance) became neutropenic; they don't believe that we are important enough to be seen by an oncologist. And it's not like we only have a few months left on treatment, we have another 16 months at least left before we will reach the final date of treatment. So for the next 6 months until we get our own oncologists, this is the care my child will be receiving.
Then to top it all off when I asked for Bianca's chemo script (she is starting again on oral chemo from tonight), our nurses told us that it was now decided that all chemo scripts will be done in Christchurch and faxed through to Wellington, then this will be given to the patient or faxed to our pharmacy whereafter we will be able to collect it. Okay, I understand why they are doing it. But now they are saying they only do scripts between 1pm and 2pm. So there goes my plan to collect the medicines before discharge. So when 2pm came along, no script. Not even after 4 messages were left for Christchurch to get an update on when the script will come through. When somebody says that something will be done between 1pm and 2pm then you sort of expect that by 2pm latest that thing will be done. Not Christchurch, they eventually faxed the script by 4pm and as a result the pharmacy was not able to fill our whole prescription and this will now mean a second trip all the way to the city to get the rest of our script.
And all I can say is thank you so much Marg (who went way beyond the call of duty), Jo, Chris and all the others for being there for us, trying to help us sort it out, listening to our frustrations. You are all fantastic!
But at least we are home. I hope this will last for a little while at least.
This weekend we will very much have mixed emotions. Extremely sad to say goodbye to Sanna. She is on her way back to Sweden. But at the same time we are quite excited to meet Sandrea who is from Malaysia and who will help us out for the next month looking after Bianca and Caitlyn. We will introduce her once she has arrived!