Catherine has had a restful day today at home, colouring and doing her letters and watching Mary Poppins again. We had fun spelling words, and she enjoyed spelling her name with her magnetic letters. She also did a little bit of low-energy dancing and has been singing along to the songs in Mary Poppins, especially her 'tidy-up song' that they use at nursery. She now knows most of her alphabet and keeps pushing to have a go at writing. She told me today that she is going to have her portacath until she is five years old and now seems ok about it.
Please pray that Catherine doesn't get my virus, otherwise we will all be in hospital for a few days next week. Thank you.
Saturday, 4 October 2008
Friday, 3 October 2008
Still no news
We are still waiting for the MRD results which are now likely to be with us next week.
However, we do have some more answered prayer! All along we have been praying that Catherine has minimal side effects from the treatment. Not only has she not had any infections in the last block of high dose chemotherapy, but she is also walking about sooner than expected. The Consultant told us that the steroids are responsible for Catherine having been less mobile as they cause temporary muscle weakness, but the Consultant was surprised when I explained that Catherine was already walking much more. Usually it would take longer to become mobile again, but it seems that Catherine has jumped the gun!
Also, we received word of her blood count and were amazed to see her neutrophils (part of the blood that fights infection) had increased from 5 to 12.5! This is a huge jump considering that most children her age only have a reading of 8 neutrophils. It seems that the steroids speed up the production of the good cells, so currently Catherine has an immune system. Which is perfectly timed as I have got a virus! Steroids or answered prayer or both? I will leave this to you to decide, but yet again this news is perfect timing.
Catherine has had quite a good day today although she was a bit tired so only went to nursery this morning. This afternoon we watched Mary Poppins and Alice in Wonderland on the TV instead, and Catherine now has 'rainbow' coloured fingernails and toenails. She seems to enjoy these little pamper sessions, and through lots of donations of nailpolish, she now has a vast array of colours to choose from.
Her hairloss has come to a bit of a standstill and she still has half her hair left. Either this will go gradually over the next few weeks or she will actually keep some of her hair. She quite likes wearing her new 'hair', but other times can't be bothered and one of us will end up carrying it around. Also, now that we are reducing the steroids, Catherine's eating is calming down. She doesn't snack in the night now and only wakes a couple of times.
I think Catherine is starting to realise that the treatment may take some time. She asked at the hospital yesterday when they were going to take out her portacath. Mark said it would happen when she was five. 'I don't want to be five, then', said Catherine crossly, 'And I don't want to be four either. I'm going to stay three'. Today she asked me how they were going to take it out. I explained that she would have a 'special sleep' and then it would be gone when she woke up. 'Will it be when I am five?' she asked again, and I said 'yes'. 'Hmm. I think I will stay three', she said again, and then snuggled down to sleep.
However, we do have some more answered prayer! All along we have been praying that Catherine has minimal side effects from the treatment. Not only has she not had any infections in the last block of high dose chemotherapy, but she is also walking about sooner than expected. The Consultant told us that the steroids are responsible for Catherine having been less mobile as they cause temporary muscle weakness, but the Consultant was surprised when I explained that Catherine was already walking much more. Usually it would take longer to become mobile again, but it seems that Catherine has jumped the gun!
Also, we received word of her blood count and were amazed to see her neutrophils (part of the blood that fights infection) had increased from 5 to 12.5! This is a huge jump considering that most children her age only have a reading of 8 neutrophils. It seems that the steroids speed up the production of the good cells, so currently Catherine has an immune system. Which is perfectly timed as I have got a virus! Steroids or answered prayer or both? I will leave this to you to decide, but yet again this news is perfect timing.
Catherine has had quite a good day today although she was a bit tired so only went to nursery this morning. This afternoon we watched Mary Poppins and Alice in Wonderland on the TV instead, and Catherine now has 'rainbow' coloured fingernails and toenails. She seems to enjoy these little pamper sessions, and through lots of donations of nailpolish, she now has a vast array of colours to choose from.
Her hairloss has come to a bit of a standstill and she still has half her hair left. Either this will go gradually over the next few weeks or she will actually keep some of her hair. She quite likes wearing her new 'hair', but other times can't be bothered and one of us will end up carrying it around. Also, now that we are reducing the steroids, Catherine's eating is calming down. She doesn't snack in the night now and only wakes a couple of times.
I think Catherine is starting to realise that the treatment may take some time. She asked at the hospital yesterday when they were going to take out her portacath. Mark said it would happen when she was five. 'I don't want to be five, then', said Catherine crossly, 'And I don't want to be four either. I'm going to stay three'. Today she asked me how they were going to take it out. I explained that she would have a 'special sleep' and then it would be gone when she woke up. 'Will it be when I am five?' she asked again, and I said 'yes'. 'Hmm. I think I will stay three', she said again, and then snuggled down to sleep.
Thursday, 2 October 2008
Still waiting for the result
Whilst an analysis of Catherine's blood shows that she has acheived first remission, the MRD result, the most important result, is still outstanding.
15% of children who achieve first remission in their blood (ie no leukaemia cells are detected) can still have problems with the DNA (This is detected by the sensitive MRD test). However 85% of children who achieve a first remission in their blood can continue on the standard treatment.
If the MRD result was poor, it would mean that the leukaemia is highly likely to return on standard treatment. The treatment would therefore have to be much more intense with the risk of greater side effects and infection.
Until we have these results, the Consultant will not be able to confirm that Catherine has had a very good response to treatment so far.
We will find out the MRD result by telephone in the next few days. The Consultant has explained the course of treatment available in either circumstance. Obviously if the MRD result was poor, the chemotherapy regime would be much more intense and longer. However, we have a Great Big God, and the likelihood is that Catherine is in a low risk group and will therefore be able to continue on a standard treatment regimen.
Let us thank God for His goodness to Catherine so far in her treatment. As Catherine would sing 'Our God is a Great Big God, and He holds us in His hands'.
15% of children who achieve first remission in their blood (ie no leukaemia cells are detected) can still have problems with the DNA (This is detected by the sensitive MRD test). However 85% of children who achieve a first remission in their blood can continue on the standard treatment.
If the MRD result was poor, it would mean that the leukaemia is highly likely to return on standard treatment. The treatment would therefore have to be much more intense with the risk of greater side effects and infection.
Until we have these results, the Consultant will not be able to confirm that Catherine has had a very good response to treatment so far.
We will find out the MRD result by telephone in the next few days. The Consultant has explained the course of treatment available in either circumstance. Obviously if the MRD result was poor, the chemotherapy regime would be much more intense and longer. However, we have a Great Big God, and the likelihood is that Catherine is in a low risk group and will therefore be able to continue on a standard treatment regimen.
Let us thank God for His goodness to Catherine so far in her treatment. As Catherine would sing 'Our God is a Great Big God, and He holds us in His hands'.
Tuesday, 30 September 2008
The return of Catherine
Little by little, as the steroids are reduced, we are seeing more of the 'real' Catherine again. The steroids really did have a big effect on her personality. She is much more talkative, sociable and cheerful, and now that she is not so afraid of whether her portacath will hurt her, she is having proper big cuddles with her mummy again.
Today she had some bloods taken by the community nurse. She was nervous about having her 'magic cream' on before they inserted her 'wiggly' line into the portacath, but despite her nerves, she let us do it anyway. That's what I really like about Catherine - she is afraid sometimes but she still decides to get on with it. After the 'wiggly' was inserted and removed again, she got to choose a balloon from the nurse AND got to go and play with her friends again, so she was pleased.
She is getting very excited about writing her name at the moment. I think her favourite letters are the 'C' and the 't'. She loves writing the 't' as she draws it like a really big cross. She also loves what she affectionately calls 'Catherine's number' (her age - number 3) and really enjoys writing it.
Please continue to pray that Thursday's results are good. Thank you for your ongoing support of Catherine.
Today she had some bloods taken by the community nurse. She was nervous about having her 'magic cream' on before they inserted her 'wiggly' line into the portacath, but despite her nerves, she let us do it anyway. That's what I really like about Catherine - she is afraid sometimes but she still decides to get on with it. After the 'wiggly' was inserted and removed again, she got to choose a balloon from the nurse AND got to go and play with her friends again, so she was pleased.
She is getting very excited about writing her name at the moment. I think her favourite letters are the 'C' and the 't'. She loves writing the 't' as she draws it like a really big cross. She also loves what she affectionately calls 'Catherine's number' (her age - number 3) and really enjoys writing it.
Please continue to pray that Thursday's results are good. Thank you for your ongoing support of Catherine.
Monday, 29 September 2008
Out to play!
Catherine spent most of the day playing with her friends and has enjoyed doing some feet and hand paintings in red, pink and yellow paint! Even though she has a low immune system, the hospital encourages us to continue to send her to nursery if she feels well enough. Mainly it is about risk management, and not putting Catherine in situations of high risk with regards to catching infections. The nursery here is quite a contained environment and the nursery leaders know how to care for her and what precautions to take. The biggest risks are closed-in public places and public transport etc
Catherine is much more mobile at the moment and has not been in any pain at all today. Now that the steroids are reducing, we are seeing much more of the old Catherine! She has been quite playful and cheerful today, has not needed a nap, and has practically abandoned the pushchair in favour of walking, albeit slowly! She gets annoyed at her tummy being quite so big, but she is also starting to eat less now and didn't need to snack at all last night. She still worries about her portacath and gets nervous if people try and cuddle her, but overall she has had a good day today. We also spent time today spelling words with her letter magnets. She loves doing this, and particularly enjoys spelling her name and the names of her friends and family.
Tomorrow Catherine will be having another blood test and a 'wiggly' placed in her portacath in preparation for the procedure on Thursday. On Thursday the hospital will be giving her preventative chemotherapy, called intrathecal chemotherapy. She has had this previously and it is given under general anaesthetic. Please pray that this procedure goes well and has the desired effect. Please also pray for the medical staff performing the procedure. We will also be seeing the Consultant on Thursday which, when I have time to think about it, is a bit nerve racking, so please pray for this and that Catherine's results are good.
Catherine is much more mobile at the moment and has not been in any pain at all today. Now that the steroids are reducing, we are seeing much more of the old Catherine! She has been quite playful and cheerful today, has not needed a nap, and has practically abandoned the pushchair in favour of walking, albeit slowly! She gets annoyed at her tummy being quite so big, but she is also starting to eat less now and didn't need to snack at all last night. She still worries about her portacath and gets nervous if people try and cuddle her, but overall she has had a good day today. We also spent time today spelling words with her letter magnets. She loves doing this, and particularly enjoys spelling her name and the names of her friends and family.
Tomorrow Catherine will be having another blood test and a 'wiggly' placed in her portacath in preparation for the procedure on Thursday. On Thursday the hospital will be giving her preventative chemotherapy, called intrathecal chemotherapy. She has had this previously and it is given under general anaesthetic. Please pray that this procedure goes well and has the desired effect. Please also pray for the medical staff performing the procedure. We will also be seeing the Consultant on Thursday which, when I have time to think about it, is a bit nerve racking, so please pray for this and that Catherine's results are good.
Sunday, 28 September 2008
Church day
Catherine will not be going to church today as she has a bad tummy ache. The painkiller is working to help relieve it, but it is still sore. She is feeling a bit disappointed and fed up and sitting on the sofa with a blanket. Catherine likes going to church (especially the music) so I am trying to think of something to entertain her a bit whilst she is not feeling too good. The tummy ache is one of the side effects of the last block of chemotherapy, but this should hopefully ease now as she had her last dose of this drug in this block on Thursday.
We would also have been going to a church today with hundreds of people in a small space (not advisable when you have hardly any immune system). I think we are all feeling the effects of being limited by the illness and chemotherapy. Catherine certainly gets bored, but even yesterday when she didn't have a tummy ache she didn't really want to go outside and play. She seems to get a bit overwhelmed by all the people when she has recently had a general anaesthetic. We ended up doing some simple craft things yesterday when she wasn't too tired, and CBeebies has been its usual help.
We would also have been going to a church today with hundreds of people in a small space (not advisable when you have hardly any immune system). I think we are all feeling the effects of being limited by the illness and chemotherapy. Catherine certainly gets bored, but even yesterday when she didn't have a tummy ache she didn't really want to go outside and play. She seems to get a bit overwhelmed by all the people when she has recently had a general anaesthetic. We ended up doing some simple craft things yesterday when she wasn't too tired, and CBeebies has been its usual help.
Saturday, 27 September 2008
Houmous?
Just to illustrate the problems with the steroid, I thought I would tell you about yesterday.
As part of Catherine's steroid treatment, she often gets cravings for different foods. Yesterday, one of her little friends had some houmous (a creamy dip made with chick peas that she eats at nursery). It was like she became totally obsessed with the idea of eating some. She kept asking me over and over again for some houmous and then decided she would ask her friend. She went over to her friend and repeated over and over again 'Can I have some houmous?'. Her friend just looked really puzzled and kept on playing. When her friend had enough of being asked for houmous, she started to walk away. Catherine followed her and kept repeating that she 'would like some houmous, please?', as if her friend was a ready supply. I was starting to think I would need to make an emergency trip to Sainburys and then one of our friends kindly offered to give Catherine their pot of houmous from their fridge. The relief on her face was obvious. Catherine was delighted and sat on the sofa eating half a pot of houmous and some carrot.
We are looking forward to the end of the steroids.
As part of Catherine's steroid treatment, she often gets cravings for different foods. Yesterday, one of her little friends had some houmous (a creamy dip made with chick peas that she eats at nursery). It was like she became totally obsessed with the idea of eating some. She kept asking me over and over again for some houmous and then decided she would ask her friend. She went over to her friend and repeated over and over again 'Can I have some houmous?'. Her friend just looked really puzzled and kept on playing. When her friend had enough of being asked for houmous, she started to walk away. Catherine followed her and kept repeating that she 'would like some houmous, please?', as if her friend was a ready supply. I was starting to think I would need to make an emergency trip to Sainburys and then one of our friends kindly offered to give Catherine their pot of houmous from their fridge. The relief on her face was obvious. Catherine was delighted and sat on the sofa eating half a pot of houmous and some carrot.
We are looking forward to the end of the steroids.
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