This morning I spent twenty minutes chasing a giggling Catherine around the room trying to get her ready to go out! Now the steroids are coming out of my daughter's system, I am starting to see her great personality again, even it takes ages to get her ready to go anywhere.
It made me think about all those times we as parents get frustrated and even annoyed at some of our children's behaviour. I'm sure other parents of small children can relate to how their antics are at some times really inconvenient. How bizarre it seems, then, that I should be so happy that she was doing something that would have frustrated me before her illness. But I was happy, and when she ran and hid herself in her bed rather than get dressed, I was quite happy to go in and see a heap of bedclothes shaking with her laughter.
Catherine also went to the park today with her friend and they played together on the swings and the climbing frames. This is the first time Catherine has attempted to climb anything for ages, so it was good to see. However, she fell and grazed her knee and for the first time I felt like an overprotective mother! Thoughts that raced through my mind were 'Do I have any anaesthetic cream at home? I don't want that to get infected' and 'How many platelets does she have in her blood if it starts to bleed and needs to clot?'. Daft things that wouldn't have bothered me at all in the past, but seem all the more unknown because of her condition. Catherine, on the other hand, just got up, dusted herself down, and got on with the important business of playing.
Tomorrow we are going to the hospital for another lumbar punch and more chemotherapy. Catherine will be having an anaesthetic again and will not be able to eat from 5am tomorrow morning until the procedure is complete (after 10am). She is quite nervous about going to hospital tomorrow because she says the anaesthetic 'makes her feel wobbly afterwards'. She doesn't like the feeling and doesn't like the anaesthetic cream they put on her portacath. She said she would like to try the spray instead, so maybe we will have a try at this tomorrow.
Wednesday, 8 October 2008
Tuesday, 7 October 2008
'I don't want to go to bed'
At 7pm this evening Catherine said 'I don't want to go to bed' and smiled mischieviously. Once I managed to get her in the bed, she actually asked for prayers AND her bedtime song which we sang whilst she bounced her teddy bear up and down. She was still awake by the end.
This is my Catherine.
Before diagnosis she would never want to go to bed and she would always want her bedtime song, probably because it meant she could stay awake a bit longer. Since treatment began she would put herself to bed and then not want any singing because she was too tired. It has been so nice to see some of her old energy and fun now that the first phase of difficult chemo is over.
However, surprisingly today we found out that her neutrophil count (the part that helps fight infection) has gone right down again from over 12 to only 1.2 in just a week. This is due to the oral and intrathecal (spinal fluid) chemotherapy. This is not unusual and to be expected, but we were surprised that it had gone down so drastically so quickly. This means that we need prayers to protect her from infection again.
Catherine's blood test went really well today. She still doesn't like having the cream put over her portacath to numb the skin, but taking the bloods was easy and she didn't worry at all! The nurse commented on how good she was. I think Catherine was happy because she knew she would get a purple balloon afterwards! She also likes the nurse who she calls 'that nice lady'.
This afternoon, I told Catherine that we had some good news from the hospital. She gave me a huge smile and then ran off to play with her friend Hannah. I am glad that, at this moment in time, she is feeling so much better in herself. It is lovely to see.
This is my Catherine.
Before diagnosis she would never want to go to bed and she would always want her bedtime song, probably because it meant she could stay awake a bit longer. Since treatment began she would put herself to bed and then not want any singing because she was too tired. It has been so nice to see some of her old energy and fun now that the first phase of difficult chemo is over.
However, surprisingly today we found out that her neutrophil count (the part that helps fight infection) has gone right down again from over 12 to only 1.2 in just a week. This is due to the oral and intrathecal (spinal fluid) chemotherapy. This is not unusual and to be expected, but we were surprised that it had gone down so drastically so quickly. This means that we need prayers to protect her from infection again.
Catherine's blood test went really well today. She still doesn't like having the cream put over her portacath to numb the skin, but taking the bloods was easy and she didn't worry at all! The nurse commented on how good she was. I think Catherine was happy because she knew she would get a purple balloon afterwards! She also likes the nurse who she calls 'that nice lady'.
This afternoon, I told Catherine that we had some good news from the hospital. She gave me a huge smile and then ran off to play with her friend Hannah. I am glad that, at this moment in time, she is feeling so much better in herself. It is lovely to see.
Celebrations and thanks
Catherine's MRD results are back and she is now officially 'low risk'!!!!
This is the wonderful news we have all been waiting for and means she can continue on this level of treatment. It also means that her prognosis continues to be very good.
Catherine will still need to continue the full programme of treatment (2 years) and is still at risk of infection and the side effects of the treatment, but this is the BEST POSSIBLE NEWS at this stage.
Thankyou SO MUCH for your prayers for Catherine. You cannot imagine how happy we are that she will not need a more intensive treatment programme. Dear pray-ers, please spend a moment thanking God for this news and for His love and goodness. He is working mini-miracles every day in her life.
Thankyou everyone and thankyou God!
I will rise and bless you Lord.
Lift my hands and shout Your praise,
I will tell of the marvellous things you have done
And declare Your faithfulness.
I will rise and bless You Lord
Lift You high and dance for joy.
Oh nothing can separate me
From your wonderful, wonderful love.
(Diane Fung, Songs of Fellowship 1: 275)
This is the wonderful news we have all been waiting for and means she can continue on this level of treatment. It also means that her prognosis continues to be very good.
Catherine will still need to continue the full programme of treatment (2 years) and is still at risk of infection and the side effects of the treatment, but this is the BEST POSSIBLE NEWS at this stage.
Thankyou SO MUCH for your prayers for Catherine. You cannot imagine how happy we are that she will not need a more intensive treatment programme. Dear pray-ers, please spend a moment thanking God for this news and for His love and goodness. He is working mini-miracles every day in her life.
Thankyou everyone and thankyou God!
I will rise and bless you Lord.
Lift my hands and shout Your praise,
I will tell of the marvellous things you have done
And declare Your faithfulness.
I will rise and bless You Lord
Lift You high and dance for joy.
Oh nothing can separate me
From your wonderful, wonderful love.
(Diane Fung, Songs of Fellowship 1: 275)
Monday, 6 October 2008
Still no news
We are still waiting for Catherine's MRD test results.
On Saturday we finished the steroid treatment. We have already seen a marked improvement in Catherine's mobility and she even made an attempt at running today. She had a busy day at nursery and enjoyed playing at being the doctor with her friends. She also tried to make the nursery leader better! We think she was quite active and pushed herself today because she put herself to bed at 5.30pm.
We were also really pleased today that Catherine actually left some of her lunch on her plate! This sounds strange coming from her parents, but on the steroids she would usually eat a huge adult sized meal at lunch time. Her moods are also starting to stabilize and we are now continuing with her second chemotherapy phase.
Please continue to pray that the MRD results are good and that Catherine can continue on this regimen of treatment. Tomorrow we are taking Catherine for another blood test in preparation for her next lumbar punch and chemotherapy on Thursday.
On Saturday we finished the steroid treatment. We have already seen a marked improvement in Catherine's mobility and she even made an attempt at running today. She had a busy day at nursery and enjoyed playing at being the doctor with her friends. She also tried to make the nursery leader better! We think she was quite active and pushed herself today because she put herself to bed at 5.30pm.
We were also really pleased today that Catherine actually left some of her lunch on her plate! This sounds strange coming from her parents, but on the steroids she would usually eat a huge adult sized meal at lunch time. Her moods are also starting to stabilize and we are now continuing with her second chemotherapy phase.
Please continue to pray that the MRD results are good and that Catherine can continue on this regimen of treatment. Tomorrow we are taking Catherine for another blood test in preparation for her next lumbar punch and chemotherapy on Thursday.
Saturday, 4 October 2008
A quiet day
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.
Please pray that Catherine doesn't get my virus, otherwise we will all be in hospital for a few days next week. Thank you.
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'.
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