This week is feeling pretty confusing. With all the holiday days it doesn't really feel like a Wednesday today and I have to keep reminding myself that tomorrow is Thursday and we will have to go to the hospital for a blood test and possibly a transfusion or two. And I guess it felt a bit funny in a way, in one way everything slows down and becomes more relaxed because it is holiday, but in another life carries on as usual with us, you can't take a break from the medicines every day, you can't really take a break from being observant to see if there are any worrying signs, and of course having a baby means rountine has to carry on as usual - babies don't really like taking holidays either :-) so in one way your body wants to take a break, but in another your mind keeps pushing on ahead. It did feel good to have Terence home for a few days. He is due back at work again tomorrow morning.
Today was another nothing day. The morning was pretty quiet. And then this afternoon we went to visit our good friends Carl and Lisa and their two beautiful daughters. We met them at Bianca's daycare centre at one of their social evenings. Of course I find it quite funny how close our names are "Lea" and "Lisa", "Bianca" and "Brianna" and "Caitlyn" and "Caitlin" (our Caitlyn is 10 months old and their Caitlin is 14 months old). So it was good to see them and we had a BBQ and the kids had lots of fun playing. Of course the two babies didn't really know much about sharing and they kept trying to drink from the other one's cup. Same type of cup, but Caitlin's one is yellow and Caitlyn's one is blue. I mean really can't they just get their colours right? :-) :-). So a couple of times Caitlyn would grab the yellow cup and start drinking and then would get most upset when I take it away and offer the blue one.
Then there was one funny moment which probably would have made a nice moment for America's Funniest Home Videos. Lisa put up a little wooden gate (one of those baby gates) to prevent the babies going through the door. The cat came in and was on the other side of the gate. Caitlyn was sitting on our side of the gate. Bianca was on the cat's side. Bianca is a bit scared of cats and so she freaked out and screamed really loud which then made the cat jump and run (the nearest exit being towards us and away from Bianca), so the cat ran through the gaps in the gate, the gate came loose and was still around the cat's body and it jumped over Caitlyn and of course she screamed because who wouldn't if you suddenly saw a black streak jumping towards you with a big square wooden contraption around it. The cat then managed to free itself from the gate. So there we were with a screaming baby, a bewildered Bianca and the cat hiding behind the TV. Quite traumatic for the kids and the cat, but actually quite funny.
So now tomorrow it is back to work for Terence and Sanna and Bianca and I will set off to hospital early in the morning for a finger prick. I will probably put some Emla cream on her port just in case and then they will probably make us wait for the results. There is a chance that she will possibly need at least a Platelet transfusion, so I'm expecting it to be (but hoping not) a long day for us. And then on Friday we will be back at the hospital to meet the Oncologist who is in Wellington from Christchurch (we don't currently have any Oncologists permanently based in Wellington - a bit of a scary thought in the event of an unplanned visit to hospital). Not too sure at which point we will start maintenance, but I guess it will all depend on counts and stuff. In the meantime it felt good not to have to give the oral chemo at the moment. Usually with the oral chemo we have to wait 2 hours after supper and that does make it hard to plan meals and stuff like that and then for Bianca to go to bed at a reasonable time.
At some point in time Terence and I will be sitting down and discussing the road forward. There is so much uncertainty for us around the whole Wellington situation. At least for me at the moment. This year when Bianca turns 5 in June she is supposed to start school. School will be one of the few things in her life (at least until the end of treatment) that will be stability and I guess in some respects security and comfort. Two years is a very very long time and right now I'm afraid that everything won't work out fine at the Wellington Paediatric Oncology unit. Of course I'm desperately hoping and praying that they will prove me wrong. And they are saying that they are working on it, but it just doesn't always feel as if we are included in the whole picture. Perhaps with everything that has happened I do have a bit of a trust issue and perhaps I'm just at the stage of treatment where I won't just accept what they tell us, I find I am questioning more. So I really do hope they prove me wrong. My worry is that we just start school, Bianca gets used to it and then things don't work out or she misses too much school because they end up expecting us to travel to Christchurch for whatever reason. Right now I really need to decide what would be best for Bianca - emotionally and regarding her healthcare. Of course with the deal between Christchurch and Wellington now agreed, it is expected there will be teething problems, but it is my child's health and emotional well-being that is involved and I find myself fiercely protecting, almost like a tiger "fighting" for her cubs.
To those of you not familiar with the situation at Wellington Hospital, please feel free to refer to the link on the right hand side titled "in the news". If you click on the link it will take you to relevant news articles.
Medicines today:
Today was another nothing day. The morning was pretty quiet. And then this afternoon we went to visit our good friends Carl and Lisa and their two beautiful daughters. We met them at Bianca's daycare centre at one of their social evenings. Of course I find it quite funny how close our names are "Lea" and "Lisa", "Bianca" and "Brianna" and "Caitlyn" and "Caitlin" (our Caitlyn is 10 months old and their Caitlin is 14 months old). So it was good to see them and we had a BBQ and the kids had lots of fun playing. Of course the two babies didn't really know much about sharing and they kept trying to drink from the other one's cup. Same type of cup, but Caitlin's one is yellow and Caitlyn's one is blue. I mean really can't they just get their colours right? :-) :-). So a couple of times Caitlyn would grab the yellow cup and start drinking and then would get most upset when I take it away and offer the blue one.
Then there was one funny moment which probably would have made a nice moment for America's Funniest Home Videos. Lisa put up a little wooden gate (one of those baby gates) to prevent the babies going through the door. The cat came in and was on the other side of the gate. Caitlyn was sitting on our side of the gate. Bianca was on the cat's side. Bianca is a bit scared of cats and so she freaked out and screamed really loud which then made the cat jump and run (the nearest exit being towards us and away from Bianca), so the cat ran through the gaps in the gate, the gate came loose and was still around the cat's body and it jumped over Caitlyn and of course she screamed because who wouldn't if you suddenly saw a black streak jumping towards you with a big square wooden contraption around it. The cat then managed to free itself from the gate. So there we were with a screaming baby, a bewildered Bianca and the cat hiding behind the TV. Quite traumatic for the kids and the cat, but actually quite funny.
So now tomorrow it is back to work for Terence and Sanna and Bianca and I will set off to hospital early in the morning for a finger prick. I will probably put some Emla cream on her port just in case and then they will probably make us wait for the results. There is a chance that she will possibly need at least a Platelet transfusion, so I'm expecting it to be (but hoping not) a long day for us. And then on Friday we will be back at the hospital to meet the Oncologist who is in Wellington from Christchurch (we don't currently have any Oncologists permanently based in Wellington - a bit of a scary thought in the event of an unplanned visit to hospital). Not too sure at which point we will start maintenance, but I guess it will all depend on counts and stuff. In the meantime it felt good not to have to give the oral chemo at the moment. Usually with the oral chemo we have to wait 2 hours after supper and that does make it hard to plan meals and stuff like that and then for Bianca to go to bed at a reasonable time.
At some point in time Terence and I will be sitting down and discussing the road forward. There is so much uncertainty for us around the whole Wellington situation. At least for me at the moment. This year when Bianca turns 5 in June she is supposed to start school. School will be one of the few things in her life (at least until the end of treatment) that will be stability and I guess in some respects security and comfort. Two years is a very very long time and right now I'm afraid that everything won't work out fine at the Wellington Paediatric Oncology unit. Of course I'm desperately hoping and praying that they will prove me wrong. And they are saying that they are working on it, but it just doesn't always feel as if we are included in the whole picture. Perhaps with everything that has happened I do have a bit of a trust issue and perhaps I'm just at the stage of treatment where I won't just accept what they tell us, I find I am questioning more. So I really do hope they prove me wrong. My worry is that we just start school, Bianca gets used to it and then things don't work out or she misses too much school because they end up expecting us to travel to Christchurch for whatever reason. Right now I really need to decide what would be best for Bianca - emotionally and regarding her healthcare. Of course with the deal between Christchurch and Wellington now agreed, it is expected there will be teething problems, but it is my child's health and emotional well-being that is involved and I find myself fiercely protecting, almost like a tiger "fighting" for her cubs.
To those of you not familiar with the situation at Wellington Hospital, please feel free to refer to the link on the right hand side titled "in the news". If you click on the link it will take you to relevant news articles.
Medicines today:
- Fluconozole - 10 ml at night
- Co-trimoxazole - 6.25 ml twice a day
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