We had an extremely long day today. The first day of our school holidays was marked by a hospital visit. It was a theatre day and so we had to wake Bianca earlier than usual to have breakfast and so Bianca stopped eating and drinking at 6am. We arrived at the hospital at 9am and did our blood test (finger prick) and as usual Bianca did great. While we waited for our clinic appointment we discovered the Ronald McDonald rooms. It is a great setup and it has a number of comfortable seats, a great kitchen area and they even have things like bread, coffee, tea, breakfast cereals and so on. They also have a number of rooms for families whose kids are in ICU. So a great setup.
As usual our clinic appointment was pretty much on time and today we saw one of the other doctors. Bianca decided that she would use the spray instead of the Emla Cream. Basically both numb the skin so that it doesn't hurt when they access her port. The spray is just instant and with the Emla we have to wait an hour for it to work. I was not 100% sure how comfortable Bianca really would be with the spray, but since she chose, we went with it and boy did it work great! Apart from being "freezing cold" as Bianca describes it, it was less effort than the Emla cream. Once accessed, Bianca got her Vincristine pushed into her port and then the IVIG transfusion (which took around 2.5 hours or so to run through). And then we waited, and waited, and waited.
Bianca was on the afternoon theatre list which usually starts at 1:30pm and then actual time of going to theatre depends on age and since Bianca is not the youngest anymore, we ended up being 5th on the list. But today seemed to be particularly slow and I understand they had a couple of Bone Marrow Aspirates in the morning which take longer than the usual Lumber Puncture. Eventually at 16:40 it was finally time for Bianca to go and by that time she was more than ready and she enthusiastically jumped up when we were called. By that time she's been complaining for several hours that she was hungry, that her tummy was sore, wanting to know when it would be her turn. After recovery (from getting her Lumbar Puncture and chemo injected into her spine) we had to wait a further hour before we were finally able to leave hospital at 18:30. It was one very very long day!
Bianca's counts are looking great and so (as per protocol of our clinical trial) they increased her weekly Methotrexate and in addition to this they have also increased Bianca's steroids (as she is a bit heavier than last month), so when we start tomorrow morning with steroids, it will be interesting to see the effects this time round. At the very least I am expecting Bianca to get hungrier than usual and not sleep as well as she should.
As usual our clinic appointment was pretty much on time and today we saw one of the other doctors. Bianca decided that she would use the spray instead of the Emla Cream. Basically both numb the skin so that it doesn't hurt when they access her port. The spray is just instant and with the Emla we have to wait an hour for it to work. I was not 100% sure how comfortable Bianca really would be with the spray, but since she chose, we went with it and boy did it work great! Apart from being "freezing cold" as Bianca describes it, it was less effort than the Emla cream. Once accessed, Bianca got her Vincristine pushed into her port and then the IVIG transfusion (which took around 2.5 hours or so to run through). And then we waited, and waited, and waited.
Bianca was on the afternoon theatre list which usually starts at 1:30pm and then actual time of going to theatre depends on age and since Bianca is not the youngest anymore, we ended up being 5th on the list. But today seemed to be particularly slow and I understand they had a couple of Bone Marrow Aspirates in the morning which take longer than the usual Lumber Puncture. Eventually at 16:40 it was finally time for Bianca to go and by that time she was more than ready and she enthusiastically jumped up when we were called. By that time she's been complaining for several hours that she was hungry, that her tummy was sore, wanting to know when it would be her turn. After recovery (from getting her Lumbar Puncture and chemo injected into her spine) we had to wait a further hour before we were finally able to leave hospital at 18:30. It was one very very long day!
Bianca's counts are looking great and so (as per protocol of our clinical trial) they increased her weekly Methotrexate and in addition to this they have also increased Bianca's steroids (as she is a bit heavier than last month), so when we start tomorrow morning with steroids, it will be interesting to see the effects this time round. At the very least I am expecting Bianca to get hungrier than usual and not sleep as well as she should.
Posts
3 comments:
Happy holidays. I hope round 4 flies by smoothly and you can all continue your normal.
Hi Lea,
I hope that this round of steroids goes well. Pete had an increase too, but we didn't notice that he was any worse than his usual hideous steroid self. I'm glad that you are over the long day one. I hate theatre days and it is such a blessed relief when they are all over.
Take care,
Bridget and Pete
http://www.caringbridge.org/visit/peterpirie
Hoping this steroid week will be an easy one for all of you.
Thinking of all of you.
Rosemary NY USA
Post a Comment