Thank you to Bridgit Pirie for sharing a website with us. www.startafanclub.co.nz - it is a great site where you can say thank you to blood donors. You can read her brave little boy Peter's story by clicking on the the link on the right towards the bottom.
Had a blood test this afternoon and we did not need any transfusions although Bianca's counts are still low. So we are still just waiting for counts to come up so we can start maintenance. Need to be back on Monday morning to check counts and then possibly transfusion if the counts are still going down.
Had a meeting with Doctor Sullivan and I arrived armed with a list of questions. I was happy to hear that all Bianca's treatment (all of it can be done as outpatient) will be done in Wellington. Thank goodness. Was not in the mood to travel again. For normal admissions such as infections, she will be admitted at Wellington as far as I understand. I do feel more positive after the meeting.
Once on maintenance, all Bianca's home medicines (apart from the co-trimoxazole and fluconozole) will be given in pill form. It sounds as if initially we will go in once a fortnight. We will all have to go for the flu vaccine to prevent us all getting flu. I'm not looking forward to this as I have a bit of a fear of needles (fancy that huh!), wonder if I can claim a bravery bead... :-). But it will be for the best, it is best to try and avoid as many illnesses as possible.
We also discussed school. It is hard getting our head around it now, but once Bianca has been on maintenance for a few months we will know how she tolerates it all, if her neutrophils will stay level and so on. They will adjust her chemo dosages as needed to try and keep them sitting at 1.5. So if all goes well she will start school in June when she turns 5 otherwise we will wait until next year. Bianca is so ready, but I just don't want her to take off too much time from school because I won't want Bianca to miss out on making friends.
Just heard the nicest quote on a movie that I am watching: "why do you try so hard to fit in when you were born to stand out?"
Medicines today:
Had a blood test this afternoon and we did not need any transfusions although Bianca's counts are still low. So we are still just waiting for counts to come up so we can start maintenance. Need to be back on Monday morning to check counts and then possibly transfusion if the counts are still going down.
Had a meeting with Doctor Sullivan and I arrived armed with a list of questions. I was happy to hear that all Bianca's treatment (all of it can be done as outpatient) will be done in Wellington. Thank goodness. Was not in the mood to travel again. For normal admissions such as infections, she will be admitted at Wellington as far as I understand. I do feel more positive after the meeting.
Once on maintenance, all Bianca's home medicines (apart from the co-trimoxazole and fluconozole) will be given in pill form. It sounds as if initially we will go in once a fortnight. We will all have to go for the flu vaccine to prevent us all getting flu. I'm not looking forward to this as I have a bit of a fear of needles (fancy that huh!), wonder if I can claim a bravery bead... :-). But it will be for the best, it is best to try and avoid as many illnesses as possible.
We also discussed school. It is hard getting our head around it now, but once Bianca has been on maintenance for a few months we will know how she tolerates it all, if her neutrophils will stay level and so on. They will adjust her chemo dosages as needed to try and keep them sitting at 1.5. So if all goes well she will start school in June when she turns 5 otherwise we will wait until next year. Bianca is so ready, but I just don't want her to take off too much time from school because I won't want Bianca to miss out on making friends.
Just heard the nicest quote on a movie that I am watching: "why do you try so hard to fit in when you were born to stand out?"
Medicines today:
- Fluconozole - 10 ml at night
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