Yesterday was Day 29 on the Delayed Intensification for us and it was a long and exhausting day. This morning we had to get up really early as Bianca needed to be at the ward by 8:15 for her Cytarabine and then we went back to the Ronald McDonald House to get the room ready for checkout. At that stage we were still waiting for flights to be confirmed but was told yesterday that it would be somewhere between 11:00 and 12:00. So when 11:15 came I rang the ward and asked what was happening. Eventually got an answer that we would be collected by 12:25 and our flight would be at 13:30. So we pretty much spent the morning waiting for a telephone call and a fax. The traffic was a bit bad on the way to the airport and I was worried we may run late (but then I didn't really know distance to the airport) so we made it in time. And then as luck would have it, our flight was delayed and we eventually left at approximately 14:30.
It was in the news today that Wellington and Christchurch reached an agreement with regards to the care of cancer patients. You can read the article here. I'm pleased they finally made a decision and reached an agreement. The part that I am not too happy about is the whole travel thing which will continue. "Canterbury's chief medical officer, Nigel Millar, said children would still need to travel to Christchurch or Auckland till two paediatric oncologists were appointed to Capital and Coast, but it was then hoped that children would be cared for in the centre closest to their homes."
I guess my understanding was that with the agreement, we would have one of the other oncologists coming to Wellington when necessary to work with the locum and so minimise the travel for families who would normally be treated in Wellington.
I found the whole travel experience really tough even though it was just for approximately 3 days and it was really exhausting. Everything felt last minute. I also found that with the extra patients that all came in for their theatre day yesterday, that day ward was so extremely busy and noisy and we basically had to sit there the whole day from 8am to 5:30pm and it wasn't as if Bianca was able to just "escape" to get a bit of peace and quiet. She was very good though and didn't once complain.
This was the day ward. Bianca was on the bed in the top right corner. There was another bed next to Bianca and another little girl sat on this bed. Now imagine this room with 2 / 3 kids playing by the playstation (next to the Christmas tree), and adults sitting on all the seats (6 or 7) talking and one or two other little kids playing around. The room was pretty busy the whole day with people coming and going.
Fair enough the travel will hopefully not be forever. I think they estimate it to take more or less 6 months. But then on the 5th of December it was exactly 6 months for us since Bianca was first diagnosed and I can honestly say that it's been the longest 6 months for us. It felt like forever. Specifically for A.L.L. there are weekly treatments during the intensive treatment and some of these include theatre days (sometimes once a week for a couple of weeks in a row) and for other patients it means admission into hospital for a week or so per specific treatment.
During the past 6 months Bianca probably spent in the region of 80 days in hospital with various infections. Sometimes she was able to continue with her chemo, even though she was still in hospital and I honestly don't know how well I would have coped if I was stuck somewhere else far from home with no support whatsoever. There were times where Bianca was able to go home for visits in between antibiotics and she was able to see both Terence and myself as well as her baby sister as often as possible, but if she was far away from home, then that would not be possible. Now with this trip, it took a day and a half for her to start asking when she would be seeing Caitlyn again.
Don't get me wrong, I know very well that the agreement is really necessary and that Wellington can really benefit from the extra support.
What makes me cross is that it should not have come to this point. We should have had a locum in place before Doctor Anne resigned, they should have had a contingency plan in place when Doctor Liz (the other oncologist) first resigned. They knew it was going to take 6 months to recruit new oncologists and it would take 3 months for their review and to me it felt as if they all just sat there waiting, doing nothing until now when it became a crisis.
So yes, unfortunately we are now at the point where families have no choice but to travel (families that would not normally have to travel) and yes, it will take time to get the whole agreement in place. I am just unhappy that it got to this point.
I am glad we are going into Maintenance soon and hopefully any future travel for treatment will be minimal for us, but I am not certain to what extent we will end up being affected.
So I guess I will celebrate the decision when it is all in place and families won't be put in this position anymore, but until then will remain sceptical.
- Omeprazole - 1 capsule a day
- Fluconozole - 10 ml at night
- Co-trimoxazole - 6.25ml twice a day
- Thioguanine - 1 tablet at night [chemo]
- Cytarabine (through port) [chemo]