Catherine had a huge panic today when it was time for her to have her bloods taken. It is unpleasant to see her so upset. Her favourite nurse was still on holiday and she now worries if anyone else other than her favourite nurse takes her bloods. She worried Mark today when she asked him to put in her 'wiggly' line instead. He managed to convince her that the nurse was much better at using the portacath than he was.
Otherwise she has had a good day and has been having fun making pictures by glueing and sticking different shapes onto paper. At the moment she is walking round the living room in her pyjamas dusting! What a marvellous helper!!!
We are going to the hospital on Thursday this week where we will meet with the consultant to discuss the next part of Catherine's treatment. She has now completed the induction and consolidation phases, and if her blood counts are ok, she will progress onto the next stage. She will also receive more chemotherapy through her line this Thursday and unfortunately will need to take the steroids again for a week. It is a shame as they are now just about out of her system, but we need to start them again. Thankfully it is only for a week this time so hopefully the mood swings and appetite wont be too excessive, and we wont be cooking all night?
Sometimes at the moment, Catherine either comes and has a cuddle in bed with me at night or wakes me up in the night to go and tuck her in! The problem is that Catherine gets very hot in bed and throws all her blankets off, only to get really chilly again. I also think she feels comforted when I go and tuck her in as she looks so happy when she feels 'all snuggly' again.
On Friday we have an appointment with our specialist nurse who is coming to see us and discuss future protocols for Catherine's treatment.
Please pray that the side effects of the steroids and chemotherapy will be minimal and that she will remain infection free. Please also continue to pray that the chemotherapy will be effective.
Tuesday, 21 October 2008
Sunday, 19 October 2008
The Madagascan periwinkle plant
Catherine is starting to show signs of becoming a bit anaemic again - she is getting tired and having the odd headache. Her blood count isn't low enough for a transfusion yet but I think she is starting to feel the effects of having less haemoglobin in her blood. This is all part of the treatment as the chemotherapy kills the good AND bad blood cells (but the good blood cells bounce back soon enough!). However, I think she will be having naps at nursery until she feels better or has another transfusion.
Despite this, Catherine has had a reasonably good day today and has been really talkative. We went to a different corps (church) today and then went for lunch afterwards. She tidied up the mugs from the living room and was very helpful but then had to go and lie down on the sofa for a while. She has also been singing today and allowed me to record some of her songs on video. One of them is really funny as she forgets the words half way through and then makes up the rest of the words. We were also talking about who looks after us. Catherine said that 'Jesus looks after mummy'. I asked Catherine where he was and she pointed into the sky and said 'Jesus is up there'. I then asked her if she prays to Jesus and she told me that she prays to him in the mornings when she wakes up. When I asked Catherine if he says anything to her she said 'he tells me to go and eat my breakfast'....
I also found out some fascinating facts this weekend. An article in a magazine called Journey by Leukaemia Care speaks about the development of leukaemia treatment over the years. It was really amazing to read that one of the chemotherapy drugs - vincristine - comes from the Madagascan periwinkle plant! How incredible is that! It also said that the first year of treatment costs in the region of £100,000. It made me feel really grateful that £100,000 should be spent on healing my little girl, and how privileged we are in this country to receive such valuable treatment.
Please pray that she continues to remain infection free and that the side effects remain minimal. She is coping well with the treatment but she gets very frustrated and fed up sometimes. It is hard to see her feeling rubbish when she was previously so bright and bouncy. Thank you.
Despite this, Catherine has had a reasonably good day today and has been really talkative. We went to a different corps (church) today and then went for lunch afterwards. She tidied up the mugs from the living room and was very helpful but then had to go and lie down on the sofa for a while. She has also been singing today and allowed me to record some of her songs on video. One of them is really funny as she forgets the words half way through and then makes up the rest of the words. We were also talking about who looks after us. Catherine said that 'Jesus looks after mummy'. I asked Catherine where he was and she pointed into the sky and said 'Jesus is up there'. I then asked her if she prays to Jesus and she told me that she prays to him in the mornings when she wakes up. When I asked Catherine if he says anything to her she said 'he tells me to go and eat my breakfast'....
I also found out some fascinating facts this weekend. An article in a magazine called Journey by Leukaemia Care speaks about the development of leukaemia treatment over the years. It was really amazing to read that one of the chemotherapy drugs - vincristine - comes from the Madagascan periwinkle plant! How incredible is that! It also said that the first year of treatment costs in the region of £100,000. It made me feel really grateful that £100,000 should be spent on healing my little girl, and how privileged we are in this country to receive such valuable treatment.
Please pray that she continues to remain infection free and that the side effects remain minimal. She is coping well with the treatment but she gets very frustrated and fed up sometimes. It is hard to see her feeling rubbish when she was previously so bright and bouncy. Thank you.
Saturday, 18 October 2008
The kindness of 'strangers'
Hardly a day goes by that we don't have a card, letter or email from someone letting us know that they are thinking about us and praying for us. Many of these wishes come from 'strangers'. Yesterday, for example, we had a card from the Netherlands.
One of the most powerful things we have experienced over the last few months is the kindness of strangers.It has made me think about how people become so united together in difficult situations; it has also made me excited that there are so many people who keep going before God and believing in His power to do the miraculous.
I still can't believe how many people are 'praying for Catherine' on facebook. Many of these people we do not know but their compassion has prompted them to join and pray for her.
I've been told that many of these people are reading this post, so as a family we just want to say thankyou. God shows himself in the world through people like you.
One of the most powerful things we have experienced over the last few months is the kindness of strangers.It has made me think about how people become so united together in difficult situations; it has also made me excited that there are so many people who keep going before God and believing in His power to do the miraculous.
I still can't believe how many people are 'praying for Catherine' on facebook. Many of these people we do not know but their compassion has prompted them to join and pray for her.
I've been told that many of these people are reading this post, so as a family we just want to say thankyou. God shows himself in the world through people like you.
Thursday, 16 October 2008
No more medicine, thanks...
Catherine has not had a good day today. She has been thoroughly fed up and miserable all day and was not impressed about going to hospital at all.
On the way to the hospital she said she had decided that she didn't want to get better because then she wouldn't need to have any more medicine. When she realised that if she didn't get better she would be too poorly to go to nursery she sat quietly and sulked.
She also decided she didn't want her portacath any more. Again, when she remembered the alternative - needles - she decided to keep her portacath.
On arrival, there was some concern that she might be anaemic again, but her bloods were fine. The procedure went well and was very quick today.
We met some new people at the hospital today and it was lovely to meet one little girl and her mother. The little girl was diagnosed with Acute Lymphoblastic Leukaemia when she was 13 months old, much younger than when Catherine was diagnosed. She is now five years old and, all being well, she will be given the 'all clear' at Christmas. I was so happy for the little girl, who has managed to get through all the treatments despite some difficulties. I was very taken by the mother's devotion to her little girl. Also when the mother had her most recent child, she thought ahead and paid £2000 for a stem-cell harvest in case her little girl would need a bone marrow transplant later. It was nice to be able to celebrate with a family coming to the end of treatment.
On the way to the hospital she said she had decided that she didn't want to get better because then she wouldn't need to have any more medicine. When she realised that if she didn't get better she would be too poorly to go to nursery she sat quietly and sulked.
She also decided she didn't want her portacath any more. Again, when she remembered the alternative - needles - she decided to keep her portacath.
On arrival, there was some concern that she might be anaemic again, but her bloods were fine. The procedure went well and was very quick today.
We met some new people at the hospital today and it was lovely to meet one little girl and her mother. The little girl was diagnosed with Acute Lymphoblastic Leukaemia when she was 13 months old, much younger than when Catherine was diagnosed. She is now five years old and, all being well, she will be given the 'all clear' at Christmas. I was so happy for the little girl, who has managed to get through all the treatments despite some difficulties. I was very taken by the mother's devotion to her little girl. Also when the mother had her most recent child, she thought ahead and paid £2000 for a stem-cell harvest in case her little girl would need a bone marrow transplant later. It was nice to be able to celebrate with a family coming to the end of treatment.
Wednesday, 15 October 2008
Hospital Day
I do not like this. The day before 'hospital day' is never pleasant. Catherine always asks me what we are doing tomorrow, so I try and delay answering for as long as possible. The question seems to come earlier and earlier - today she asked me as soon as we got home from nursery.
However, I can delay it no longer as it starts to get dark. Her question 'What's happening tomorrow mummy? Is it a school day?' is quickly followed by a wail of disapproval and distress as she realises it is a hospital day. She is so aware that she even notices when the hospital phones to give us her 'starvation times', so there is no way I could avoid telling her even if I thought it was right to do so.
She doesn't like the anaesthetic as it makes her feel 'wobbly' and so she worries until she has had it. She will play for a bit and then get upset because she knows it is coming. I think it is really sad that a 3-year-old should have to go through this sort of worry - I had always hoped that this was the domain of adults. However it is something we have to deal with. She cheered up a bit when she knew this was the last anaesthetic for a few weeks, but even so, I know she will be nervous all morning until the procedure at lunch time.
Please pray that the lumbar puncture and procedure goes well tomorrow. Please also pray for the other childhood cancer patients and their parents. Thank you once again.
However, I can delay it no longer as it starts to get dark. Her question 'What's happening tomorrow mummy? Is it a school day?' is quickly followed by a wail of disapproval and distress as she realises it is a hospital day. She is so aware that she even notices when the hospital phones to give us her 'starvation times', so there is no way I could avoid telling her even if I thought it was right to do so.
She doesn't like the anaesthetic as it makes her feel 'wobbly' and so she worries until she has had it. She will play for a bit and then get upset because she knows it is coming. I think it is really sad that a 3-year-old should have to go through this sort of worry - I had always hoped that this was the domain of adults. However it is something we have to deal with. She cheered up a bit when she knew this was the last anaesthetic for a few weeks, but even so, I know she will be nervous all morning until the procedure at lunch time.
Please pray that the lumbar puncture and procedure goes well tomorrow. Please also pray for the other childhood cancer patients and their parents. Thank you once again.
Tuesday, 14 October 2008
Becoming technical...
Catherine is really enjoying her new pink portable DVD player. She spent some time experimenting with the control panel, volume control and the on/off switch until she knew what she was doing. She now excitedly uses it herself. I think she also likes the fact that if we are cooking in the kitchen, she can come and sit up the table with her DVD player rather than being on her own in the living room. Just before bed, she put on her Nursery Rhymes video and sang along to all the songs. It was great to hear her sing and she really enjoyed it.
She had some more bloods taken today and was still nervous. She had a different community nurse today as her usual nurse was on holiday. This was more difficult for her as she has built up a good rapport with her usual nurse.
Otherwise, Catherine has had a good day despite her cold. She hasn't felt unwell today. By this evening she had become much brighter again and spent ages chatting to me about going on trains and going to the seaside. She is still on her oral chemotherapy and has one more lumbar puncture on Thursday so that the hospital can administer some more chemotherapy directly into the spinal fluid. After Thursday, we start on the next part of the treatment plan.
She had some more bloods taken today and was still nervous. She had a different community nurse today as her usual nurse was on holiday. This was more difficult for her as she has built up a good rapport with her usual nurse.
Otherwise, Catherine has had a good day despite her cold. She hasn't felt unwell today. By this evening she had become much brighter again and spent ages chatting to me about going on trains and going to the seaside. She is still on her oral chemotherapy and has one more lumbar puncture on Thursday so that the hospital can administer some more chemotherapy directly into the spinal fluid. After Thursday, we start on the next part of the treatment plan.
Monday, 13 October 2008
Today
Catherine was sick once this morning and had a bit of a headache. We phoned up the hospital and they suggested that she probably overdid things the last couple of days. The problem with Catherine, though, is that she is so determined. Either she has overdone things or she may have an infection looming. She already has a bad cough which has been getting on her nerves, but we were all surprised when she was sick today. The hospital said we need to keep an eye on her temperature and make sure she drinks fluids. If her temperature doesn't spike she should be ok and avoid spending time in hospital.
As we had a day off today, we took Catherine to ToysRus. It is great going in school time as there is hardly anyone there so the risk of infection is lower. She is now the proud owner of her first watch, a Fifi scooter and - the reason we went there - a pink portable DVD player. Now she can sit and watch a DVD in bed if she doesn't feel up to doing much else. She enjoyed wandering round the shop and looking at all the toys.
We also received a lovely gift today in the post from Australia! A friend of Catherine's Grandpa sent lots of lovely cards made by lots of children who are praying for Catherine in Australia. Another lady sent her a collection of little hats that she had owned from childhood. When she heard about Catherine, she decided to send them to her. They are a lovely gift, and Catherine enjoyed having her photo taken in each of them. I will try and upload them later.
Thankyou for your ongoing prayers.
As we had a day off today, we took Catherine to ToysRus. It is great going in school time as there is hardly anyone there so the risk of infection is lower. She is now the proud owner of her first watch, a Fifi scooter and - the reason we went there - a pink portable DVD player. Now she can sit and watch a DVD in bed if she doesn't feel up to doing much else. She enjoyed wandering round the shop and looking at all the toys.
We also received a lovely gift today in the post from Australia! A friend of Catherine's Grandpa sent lots of lovely cards made by lots of children who are praying for Catherine in Australia. Another lady sent her a collection of little hats that she had owned from childhood. When she heard about Catherine, she decided to send them to her. They are a lovely gift, and Catherine enjoyed having her photo taken in each of them. I will try and upload them later.
Thankyou for your ongoing prayers.
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