We breathed a big sigh of relief on Tuesday as Celia's blood results were good enough to proceed with the lumbar puncture and chemo on Wednesday which marked the start of the maintenance phase.
We had the usual problems coming round from the general anaesthetic so they are going to try a different drug next time as something is clearly not agreeing with Celia. She was is bad form for the rest of the day as she was so exhausted after the anaesthetic tantrum plus her neutrophils were quite low so they delayed the start of the oral chemo.
I didn't actually realise how many new drugs she was going to be taking in this phase - I was just focusing on the fact that we only need to go to Monash once a month for intravenous chemo. In addition to her mouthwashes and antibiotics, she has to take steroids for 5 days every month and two forms of oral chemo, one daily and one weekly (if her neutrophils are high enough for her to withstand this so she still needs to have regular blood tests at the local hospital).
Within 24 hours of taking the first steroid dose Celia was a lethargic, teary mess so now the reality of maintenance is sinking in and I'm thinking that sigh of relief was perhaps a bit premature as we have 2 more years of this.
She was in particularly bad form on Friday and refused to go to kinder yet again. This has been going on for a over a week so I knew it wasn't just the steroids or low neutrophils. After a lot of coaxing she eventually opened up and admitted it was because she's scared of one of the other girls at kinder who has been teasing her about her hair. I feel a bit torn as it would be easy to say 'there are only 3 weeks left so you don't need to go back' but that is not really dealing with the issue and what if someone at school teases her next term, she can't just choose not to go to school so I will try and take her again next week but I imagine there will be lots tears.
Despite all the moodiness we have been getting into the Christmas spirit and to celebrate Celia starting maintenance we put the tree up and made some decorations. We also attended the Challenge Christmas party yesterday which was a fantastic funfair at Sanddown Race Course. Amy's son Dominic was there but he was Celia's only 'cancer pal' as Charlie and Seth were admitted to hospital last week which serves as another reminder that we are nowhere near home and dry as they have both been in maintenance for months.
We had the usual problems coming round from the general anaesthetic so they are going to try a different drug next time as something is clearly not agreeing with Celia. She was is bad form for the rest of the day as she was so exhausted after the anaesthetic tantrum plus her neutrophils were quite low so they delayed the start of the oral chemo.
I didn't actually realise how many new drugs she was going to be taking in this phase - I was just focusing on the fact that we only need to go to Monash once a month for intravenous chemo. In addition to her mouthwashes and antibiotics, she has to take steroids for 5 days every month and two forms of oral chemo, one daily and one weekly (if her neutrophils are high enough for her to withstand this so she still needs to have regular blood tests at the local hospital). Within 24 hours of taking the first steroid dose Celia was a lethargic, teary mess so now the reality of maintenance is sinking in and I'm thinking that sigh of relief was perhaps a bit premature as we have 2 more years of this.
She was in particularly bad form on Friday and refused to go to kinder yet again. This has been going on for a over a week so I knew it wasn't just the steroids or low neutrophils. After a lot of coaxing she eventually opened up and admitted it was because she's scared of one of the other girls at kinder who has been teasing her about her hair. I feel a bit torn as it would be easy to say 'there are only 3 weeks left so you don't need to go back' but that is not really dealing with the issue and what if someone at school teases her next term, she can't just choose not to go to school so I will try and take her again next week but I imagine there will be lots tears.Despite all the moodiness we have been getting into the Christmas spirit and to celebrate Celia starting maintenance we put the tree up and made some decorations. We also attended the Challenge Christmas party yesterday which was a fantastic funfair at Sanddown Race Course. Amy's son Dominic was there but he was Celia's only 'cancer pal' as Charlie and Seth were admitted to hospital last week which serves as another reminder that we are nowhere near home and dry as they have both been in maintenance for months.
So pleased to hear maintenance has started although still sounds challenging. Kids can be so cruel can't they? Have you spoken to the kinder teachers about that little girl. She needs to be told. Hope you're having a great week x
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