Firstly, I just want to say thank you so much to all of you for your messages and emails and for keeping us and the situation here in Wellington in your thoughts and prayers. It really means a lot to us to know that we have your support. Thank you very much.
Bianca wasn't really in the mood to play today and instead asked to watch videos. Kate, the play specialist has a great collection of some really good kiddies videos so it is always fun to go "shopping" for videos from her collection. Bianca didn't have an appetite and I found myself reminding her to eat again and again and again and finally gave up and offered breakfast cereal instead which she mostly ate. Within a week or so she lost approximately 1 kg and is sitting at 18.65kg. I just hope she does not lose any more weight because I really really don't want her to get her nose tube back again.
Yesterday was Day 50 of the standard interim maintenance phase that we were on and the last day of chemo for this phase. This phase is 56 days long, so if all goes well and Bianca's counts are not too low, then she is due to start chemo again next week as part of the Delayed Intensification phase.
Today they also did another blood test to check her levels, whether she needed a transfusion and also to check the CRP level (which I understand is an indicator of whether there is an infection or not). Yesterday it showed up quite high, so it does look like she has some kind of infection somewhere, but not sure what as yet. Today's test would have showed whether the antibiotics she is on is working, whether the levels are going up or coming down and so on. We will be in hospital until at least Friday because of the course of antibiotics. Hopefully Bianca will be able to come home this weekend. Today Bianca asked if Caitlyn was crying and I said that I am sure she is not crying unless if she is hungry or tired (Caitlyn was with Sanna at home) and then Bianca wanted to know if Caitlyn was missing Bianca. Sanna has a community education course on Wednesday evenings so met Terence at his work and then Terence and Caitlyn came through to the hospital. Caitlyn was so excited to see Bianca and Bianca kept asking to hug and kiss Caitlyn.
Bianca was absolutely thrilled to receive a beautiful quilt from a lady who makes these and donates to some of the Child Cancer Foundation kids here in Wellington. Liam's one had racing cars and Elijah wanted drums on his (if I am not mistaken). They asked Bianca what she wanted on hers and she asked for "cats, flowers, pink, yellow" and this lady managed to incorporate it all. This was really special and once I have her name, will update it here. So a big big thank you!!!
Bianca wasn't really in the mood to play today and instead asked to watch videos. Kate, the play specialist has a great collection of some really good kiddies videos so it is always fun to go "shopping" for videos from her collection. Bianca didn't have an appetite and I found myself reminding her to eat again and again and again and finally gave up and offered breakfast cereal instead which she mostly ate. Within a week or so she lost approximately 1 kg and is sitting at 18.65kg. I just hope she does not lose any more weight because I really really don't want her to get her nose tube back again.
Yesterday was Day 50 of the standard interim maintenance phase that we were on and the last day of chemo for this phase. This phase is 56 days long, so if all goes well and Bianca's counts are not too low, then she is due to start chemo again next week as part of the Delayed Intensification phase.
Today they also did another blood test to check her levels, whether she needed a transfusion and also to check the CRP level (which I understand is an indicator of whether there is an infection or not). Yesterday it showed up quite high, so it does look like she has some kind of infection somewhere, but not sure what as yet. Today's test would have showed whether the antibiotics she is on is working, whether the levels are going up or coming down and so on. We will be in hospital until at least Friday because of the course of antibiotics. Hopefully Bianca will be able to come home this weekend. Today Bianca asked if Caitlyn was crying and I said that I am sure she is not crying unless if she is hungry or tired (Caitlyn was with Sanna at home) and then Bianca wanted to know if Caitlyn was missing Bianca. Sanna has a community education course on Wednesday evenings so met Terence at his work and then Terence and Caitlyn came through to the hospital. Caitlyn was so excited to see Bianca and Bianca kept asking to hug and kiss Caitlyn.
Bianca was absolutely thrilled to receive a beautiful quilt from a lady who makes these and donates to some of the Child Cancer Foundation kids here in Wellington. Liam's one had racing cars and Elijah wanted drums on his (if I am not mistaken). They asked Bianca what she wanted on hers and she asked for "cats, flowers, pink, yellow" and this lady managed to incorporate it all. This was really special and once I have her name, will update it here. So a big big thank you!!!
Yesterday while we waited in the Treatment room before we were admitted, Bianca gave her baby a "check up".
Here is where they put the line in Bianca's port-a-cath, she never likes it. It is not sore because the skin is numb (we use Emla cream).
2 Minutes later and Bianca is fine again. This now allows them to draw blood, administer IV fluids / medicines, do transfusions and so on. It usually stays on for the duration of her admission.
Bianca also needed an X-ray (as the previous infection was a chest infection). Bianca knows to stand still when it happens (and to be honest after 11 X-rays to date, she is pretty used to it by now).
They also did a side one. Daddy helped her to stand just right.
Today Bianca didn't want to do anything and chose to watch videos. Here is Bianca and Baby.
Of course Kate, the play specialist has this magic touch and always gets the kids to smile.
Bianca likes helping and here Nurse Sue asked Bianca to help "clean" the line so that they could administer antibiotics. Of course just before she administers it, she cleans it herself.
Bianca has another two types of antibiotics that she has to take orally. One is every night and the other is twice a day, three times a week. Bianca is really good at taking these herself.
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