We are now back from the hospital after Catherine's blood transfusion which, I'm pleased to report, went well. Catherine watched both Mary Poppins and half of Cinderella and then played some games of dominos with mummy and dad. It passed the time well for her, and apart from the removal of the large sticky dressing which they put over her portacath when it is accessed, she was quite chilled about the whole thing. The nurses were all lovely as usual, and I think they've got used to us visiting now!
We will need to go back to hospital on Sunday for another blood test. I also expect we will need a transfusion of platelets shortly, as her platelets have taken the biggest hit so far in the treatment. We just need to keep a look-out for bleeding and bruising.
We do not know why Catherine's blood count dropped so dramatically with the treatment, but hopefully this blood will last her for longer than two days!
Friday, 30 January 2009
Thursday, 29 January 2009
??????
The hospital has just phoned, and Catherine's Haemoglobin is now 7.4. Her other counts (neutrophils, platelets, white blood counts) have also gone down since lunchtime!
We will now need to take her to hospital tomorrow morning for another 4 hour blood transfusion. This is so surprising, as she only had one on Tuesday. The nurses think it is very unusual that her counts have gone down so fast. All we can hope is that the chemotherapy is just really effective in Catherine's body. They doubt it is anything more serious than the effects of the chemotherapy, but it IS a big jump.
Please pray for protection for Catherine at this time and that the blood transfusion goes well tomorrow. She isn't going to be impressed about this unscheduled visit to the hospital. Her portable DVD player will be well used by the end of this phase!
We will now need to take her to hospital tomorrow morning for another 4 hour blood transfusion. This is so surprising, as she only had one on Tuesday. The nurses think it is very unusual that her counts have gone down so fast. All we can hope is that the chemotherapy is just really effective in Catherine's body. They doubt it is anything more serious than the effects of the chemotherapy, but it IS a big jump.
Please pray for protection for Catherine at this time and that the blood transfusion goes well tomorrow. She isn't going to be impressed about this unscheduled visit to the hospital. Her portable DVD player will be well used by the end of this phase!
Wierd results
We've just been up the hospital again (Thursday afternoon) because Catherine's blood results today were a bit odd - her haemoglobin is supposedly just 7.5 after a blood transfusion on Tuesday! I was genuinely shocked when they said this was her result, as it was expected to be about 9 at the lowest. Her neutrophils are down as expected, and her White Blood Count is lower than it has ever been. Cytarabine is clearly a tough cookie of a chemo drug.
This haemoglobin result s very odd, and the oncology nurse said it was very unlikely to have fallen so quickly since Tuesday, so they want another blood test to see if the original was incorrect. We may need to go back later for a blood transfusion if her bloods really have fallen so quickly, either this evening or tomorrow morning.
Mark's not been feeling well today either, so these results were not good timing. Catherine is ok in herself, apart from headaches which could be caused from the Cytabarine, and she is a bit tired and miserable about having to go back to hospital when it was so unexpected.
This haemoglobin result s very odd, and the oncology nurse said it was very unlikely to have fallen so quickly since Tuesday, so they want another blood test to see if the original was incorrect. We may need to go back later for a blood transfusion if her bloods really have fallen so quickly, either this evening or tomorrow morning.
Mark's not been feeling well today either, so these results were not good timing. Catherine is ok in herself, apart from headaches which could be caused from the Cytabarine, and she is a bit tired and miserable about having to go back to hospital when it was so unexpected.
Tuesday, 27 January 2009
Party planning insomniac!
Catherine went into hospital today with white fingernails and came out with almost normal coloured nails again (despite the strange ridges caused by chemotherapy!). She was very anaemic, and the doctors were surprised that she was still upright and awake. They said that often children who have regular bouts of anaemia manage to cope on less haemoglobin over time. I think Catherine fits beautifully into this category. Bouncing like a tigger indeed...
Today we spent time at hospital having a blood transfusion. This is the fourth blood transfusion Catherine has had during her treatment, which just shows how valuable blood donors are.
Her back is still sore from the lumbar puncture yesterday and she has had a few headaches. Her appetite has also decreased quite a bit.
She was really tired this evening and had a nap, only to wake up and be all bouncy and talkative and excitable. We managed to get her to sleep at 10pm! Blood transfusions always do this to her. She has now almost planned all of her fourth birthday party this evening, so obviously had too much energy to burn off. It was nice to see her so enthusiastic, though.
Mark is not feeling too well today and I fell asleep for a few hours this evening while Catherine was having her nap. We don't need any germs at the moment! Catherine does not need them either. Catherine's neutrophils are ok at the moment, but are due to go down in the next couple of days. Thankyou for your prayers. It would be good to get through this block without an infection.
Today we spent time at hospital having a blood transfusion. This is the fourth blood transfusion Catherine has had during her treatment, which just shows how valuable blood donors are.
Her back is still sore from the lumbar puncture yesterday and she has had a few headaches. Her appetite has also decreased quite a bit.
She was really tired this evening and had a nap, only to wake up and be all bouncy and talkative and excitable. We managed to get her to sleep at 10pm! Blood transfusions always do this to her. She has now almost planned all of her fourth birthday party this evening, so obviously had too much energy to burn off. It was nice to see her so enthusiastic, though.
Mark is not feeling too well today and I fell asleep for a few hours this evening while Catherine was having her nap. We don't need any germs at the moment! Catherine does not need them either. Catherine's neutrophils are ok at the moment, but are due to go down in the next couple of days. Thankyou for your prayers. It would be good to get through this block without an infection.
Monday, 26 January 2009
A very mixed day
Catherine has had a very mixed day today. It started off well for her and she felt fine on the way to hospital. However, both Mark and I felt uneasy today about her having her lumbar puncture and general anaesthetic which was unusual in itself. We both felt a real urge to pray when we took her into the theatre this morning to have her 'wobbly medicine'.
Catherine was in theatre for an unusually long time today, and we started to feel concerned about her. The nurses reassured us, but we were still worried. A while later Catherine was back on the ward, but the procedure had been difficult. They had to make a number of attempts to do the lumbar puncture, so they had to give her more general anaesthetic than usual. When I saw her, her breathing was very raspy, but they said it would clear when she came round from the anaesthetic. She woke up extremely grumpy, but after some food, and her Cytarabine, she was feeling better and wanted to go home.
She is currently very anaemic, but at lunch time was leaping around 'like a tigger' with her friends. She asked to go to nursery, so we said that it would be ok. However, once she got home from nursery, she said she had had a headache and so missed me. She has also had some back pain this evening because the lumbar puncture was so difficult for her today. It is the first time we have ever had a problem with this procedure. She tried to distract herself by doing some crafts but eventually gave up and decided she would have some painkiller after all.
This evening at bedtime, she read one of her simple stories to me and then didn't go to sleep for ages because she wanted to spell all her friends' names out loud to me. She is mad about language and words. I'm worried she will end up an avid reader like her dad, and then we will have no room for anything in the house except for bookcases!!!
Tomorrow we need to go to hospital for a four hour blood transfusion. Please pray that this goes smoothly. Please also continue to pray that she doesn't have any side effects or infections. Catherine will probably be off nursery at the end of the week, as her blood counts will be extremely low. This block of chemotherapy has meant that she has her lowest platelet count so far (only 84) although they do not transfuse platelets until the patient has 10 or less.
Catherine was in theatre for an unusually long time today, and we started to feel concerned about her. The nurses reassured us, but we were still worried. A while later Catherine was back on the ward, but the procedure had been difficult. They had to make a number of attempts to do the lumbar puncture, so they had to give her more general anaesthetic than usual. When I saw her, her breathing was very raspy, but they said it would clear when she came round from the anaesthetic. She woke up extremely grumpy, but after some food, and her Cytarabine, she was feeling better and wanted to go home.
She is currently very anaemic, but at lunch time was leaping around 'like a tigger' with her friends. She asked to go to nursery, so we said that it would be ok. However, once she got home from nursery, she said she had had a headache and so missed me. She has also had some back pain this evening because the lumbar puncture was so difficult for her today. It is the first time we have ever had a problem with this procedure. She tried to distract herself by doing some crafts but eventually gave up and decided she would have some painkiller after all.
This evening at bedtime, she read one of her simple stories to me and then didn't go to sleep for ages because she wanted to spell all her friends' names out loud to me. She is mad about language and words. I'm worried she will end up an avid reader like her dad, and then we will have no room for anything in the house except for bookcases!!!
Tomorrow we need to go to hospital for a four hour blood transfusion. Please pray that this goes smoothly. Please also continue to pray that she doesn't have any side effects or infections. Catherine will probably be off nursery at the end of the week, as her blood counts will be extremely low. This block of chemotherapy has meant that she has her lowest platelet count so far (only 84) although they do not transfuse platelets until the patient has 10 or less.
Sunday, 25 January 2009
Train travel
Yesterday was a very special day. We went on the train (Catherine's favourite) and then ate in a restaurant together. She decided not to wear her hair or a hat in the restaurant, and she was completely spoilt! The waiter brought her a little biscuit, and then another lady came over and spoke to us and said she would pray for Catherine. Catherine also received a heart shaped chocolate from another lady! People were very kind.
Despite being anaemic, and feeling a bit nauseous this morning, Catherine has had a good day today as well. Tomorrow we are at hospital for another lumbar puncture, intrathecal chemotherapy and more Cytarabine. She may also need a blood transfusion tomorrow, as the chemotherapy is due to really hit her blood counts from tomorrow onwards. Thankfully, I've just about finished my work due in this week, so if she needs lots of TLC I will be able to spend time with her. This is the last week of intense chemotherapy. I will then be able to explain more about the maintenance phase.
Please pray that tomorrow goes well, that she doesn't get any side effects or infections and that the leukaemia never returns. We know your prayers have had a huge impact on her healing.
Despite being anaemic, and feeling a bit nauseous this morning, Catherine has had a good day today as well. Tomorrow we are at hospital for another lumbar puncture, intrathecal chemotherapy and more Cytarabine. She may also need a blood transfusion tomorrow, as the chemotherapy is due to really hit her blood counts from tomorrow onwards. Thankfully, I've just about finished my work due in this week, so if she needs lots of TLC I will be able to spend time with her. This is the last week of intense chemotherapy. I will then be able to explain more about the maintenance phase.
Please pray that tomorrow goes well, that she doesn't get any side effects or infections and that the leukaemia never returns. We know your prayers have had a huge impact on her healing.
Saturday, 24 January 2009
One week to go
We are through another week of the intensive block and have only one more week until we reach the maintenance period in Catherine's treatment. After this week, there will be less hospital visits and hopefully Catherine will be on to a more even keel as we continue the next year or so of treatment.
The other day, I marvelled as I watched Catherine running round with her friends, leading them in a game of chase. She was as fast as them. I just find this so amazing when I consider how much chemo she is on at the moment. Her blood counts have gone down as expected, and she will probably need a blood transfusion next week, but she is still energetic and excited about being able to go for a train ride today. Next week we expect her neutrophils to bomb, and we may be at home for a few days to avoid the risk of infection as much as possible, but for now she is looking remarkably good for everything she has been through. God has been so good to her.
Yesterday, she decided she was going to lead an activity at nursery. We have some pebbles at home, and she counted out nine before her lesson; one for each of her friends. At school she organized a painting activity which involved painting a stone. She helped her friends get into their aprons, and they all ended up with some pretty painted stones. I just hope the nursery leaders didn't mind as she took over!!! Maybe it gave them a break for the morning.
The last week or so, I've been thinking back over the experience so far. It has been far from easy but we have managed to get through. It is strange how going to hospital ends up becoming 'normal' and how even something as demanding as leukaemia treatment can become part of life. I made some friends laugh the other day when I spoke about how I was reading a book with pictures of lots of children. As I looked at the photos, I found myself surprised that they all had hair!!!! How bizarre. Normality has become being with children without hair!!! It will be odd when Catherine has hair again. I will probably be very confused...
The other day, I marvelled as I watched Catherine running round with her friends, leading them in a game of chase. She was as fast as them. I just find this so amazing when I consider how much chemo she is on at the moment. Her blood counts have gone down as expected, and she will probably need a blood transfusion next week, but she is still energetic and excited about being able to go for a train ride today. Next week we expect her neutrophils to bomb, and we may be at home for a few days to avoid the risk of infection as much as possible, but for now she is looking remarkably good for everything she has been through. God has been so good to her.
Yesterday, she decided she was going to lead an activity at nursery. We have some pebbles at home, and she counted out nine before her lesson; one for each of her friends. At school she organized a painting activity which involved painting a stone. She helped her friends get into their aprons, and they all ended up with some pretty painted stones. I just hope the nursery leaders didn't mind as she took over!!! Maybe it gave them a break for the morning.
The last week or so, I've been thinking back over the experience so far. It has been far from easy but we have managed to get through. It is strange how going to hospital ends up becoming 'normal' and how even something as demanding as leukaemia treatment can become part of life. I made some friends laugh the other day when I spoke about how I was reading a book with pictures of lots of children. As I looked at the photos, I found myself surprised that they all had hair!!!! How bizarre. Normality has become being with children without hair!!! It will be odd when Catherine has hair again. I will probably be very confused...
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