Last Friday when we were at the specialist hospital, one of the children that Catherine came into contact with had the chicken pox virus. Chicken pox can be very difficult for children if they are receiving chemotherapy as they become immunosuppressed (little or no immunity). This poor child, who is also receiving chemotherapy treatment, is now in hospital receiving treatment for chicken pox. Unfortunately we do not know the child's name, but please do pray that this little person recovers quickly - God will know who we mean!
Due to the fact that Catherine has hardly any immunity, the fact that this little child had the virus means Catherine is now at risk. Today the hospital telephoned and we had to take Catherine for a blood test. The results of the blood test showed that she has no natural immunity to the virus. We then had to go back and receive two injections of chicken pox antibodies - one in each of Catherine's arms.
If the antibodies are given within 72 hours of being in contact with a child with chicken pox, they will prevent, or lessen the impact of, the virus. We hope they managed to get to Catherine in time. The incubation period for chicken pox is two weeks, so we will not know for certain whether she has escaped the virus until the end of two weeks.
Catherine was quite distressed when I told her we needed to go to hospital for a second time that day, especially as she does not 'like needles anymore'. She was, however, very brave when the time came to have the needles. We explained to Catherine that sometimes true bravery and courage are when we are scared but still do the scary thing anyway.
We have been praying hard today for the child at the hospital, and that Catherine and the other children who attended the specialist hospital on Friday do not come down with chicken pox. Please pray for these children as contracting chicken pox means a stay in hospital and, I think, intravenous antibiotics/anti-viral drugs to try and sort out the virus.
Tuesday, 11 November 2008
Monday, 10 November 2008
Teddy needed needles...
Catherine has had quite a good weekend this weekend apart from some pain in her feet at night time. We're not quite sure what is causing this pain but we think it is likely to be a side effect of one of the chemotherapy drugs. Yesterday she came into our room and woke me up to tell me about her dream.
'Mummy. My teddy was not very well so I had to put him in the buggy and take him to hospital. When he got there, he had to have lots of needles'
Poor child! I asked her if teddy was feeling better now. 'Oh, yes', she replied. At least she realises that the 'needles' and medical treatment make her feel better.
I've not been very well with a cold but Catherine is doing fine and is quite active at the moment. I went to have a lie down earlier only to be jumped on by a very excitable Catherine who wanted to 'bounce lots and lots' on mummy and daddy's bed!
'Mummy. My teddy was not very well so I had to put him in the buggy and take him to hospital. When he got there, he had to have lots of needles'
Poor child! I asked her if teddy was feeling better now. 'Oh, yes', she replied. At least she realises that the 'needles' and medical treatment make her feel better.
I've not been very well with a cold but Catherine is doing fine and is quite active at the moment. I went to have a lie down earlier only to be jumped on by a very excitable Catherine who wanted to 'bounce lots and lots' on mummy and daddy's bed!
Friday, 7 November 2008
'stupid, silly, mischief cough'
Catherine was an absolute star today. From the moment she got up until after her 'wobbly medicine' (anaesthetic) there were no nerves about going to hospital and there was only a very small amount of complaining. The only time she was upset was after she had her 'wobbly medicine' when she asked the anaesthetist if she could have some more as she 'quite enjoyed it'! This is the first time she has been this calm going to hospital. It actually made today quite a good experience as we were not constantly having to try and talk her out of her anxiety. We are so proud of her. After her anaesthetic she slept for most of the afternoon and woke up demanding lots of 'Alphabetti' (Alphabet shaped spaghetti).
We will not find out the results of the bone marrow test for a few weeks. We also thought that she would escape Christmas without starting the intense block of chemotherapy. Unfortunately, we found out today that, if all goes to schedule, this block will begin on December 18th. Hopefully she will not be too poorly over Christmas. However, just before the difficult block starts, a charity that provides outings for children with cancer has given us some free tickets so that Catherine can go and see Peter Pan. This will be her first pantomime, and at the moment she thinks it will be a bit like CBeebies on a stage!
We all have colds at the moment. Catherine decided today that I had a 'tickly cough all tickly in my throat'. I asked her what sort of cough she had. She said she had 'a stupid, silly, mischief cough' but then laughed and said that her cough 'starts in the throat and goes all down her leg'. Interesting! I wonder what the medical profession would say about that...
We will not find out the results of the bone marrow test for a few weeks. We also thought that she would escape Christmas without starting the intense block of chemotherapy. Unfortunately, we found out today that, if all goes to schedule, this block will begin on December 18th. Hopefully she will not be too poorly over Christmas. However, just before the difficult block starts, a charity that provides outings for children with cancer has given us some free tickets so that Catherine can go and see Peter Pan. This will be her first pantomime, and at the moment she thinks it will be a bit like CBeebies on a stage!
We all have colds at the moment. Catherine decided today that I had a 'tickly cough all tickly in my throat'. I asked her what sort of cough she had. She said she had 'a stupid, silly, mischief cough' but then laughed and said that her cough 'starts in the throat and goes all down her leg'. Interesting! I wonder what the medical profession would say about that...
Thursday, 6 November 2008
Ramblings of a mother who should just have gone to bed
I am sitting here feeling sad. I should be in bed, but I am not.
I am thinking about Catherine when she was a baby. I am thinking about how outgoing and confident she was before she was diagnosed with leukaemia. I am thinking about how she loved climbing and rushing around all over the place. And I am thinking about how she is now.
OK, so people have told me that all her confidence should come back, but even now I see a difference in her. Her daredevil adventurousness has turned into feeling limited and uncertain. She knows she is limited physically and she is so much more cautious. The treatment and anaemia make her tired, unhappy and sometimes hurt, and even if it is for a phase, I do miss that cheerful feisty personality. Sometimes I see some of 'that Catherine', but othertimes I look at her and she looks a bit like a war weary little person who doesn't feel quite as safe as she once did.
Tonight she said to her daddy that she didn't want to have any more treatment. However, Mark explained that there was an end to the treatment and that she would get better but that she needed to take her medicines. Tomorrow we are back at the hospital for the day.
Hopefully when she looks back at this phase of her life she will not remember too much of the bad bits but more of the good bits...
I am thinking about Catherine when she was a baby. I am thinking about how outgoing and confident she was before she was diagnosed with leukaemia. I am thinking about how she loved climbing and rushing around all over the place. And I am thinking about how she is now.
OK, so people have told me that all her confidence should come back, but even now I see a difference in her. Her daredevil adventurousness has turned into feeling limited and uncertain. She knows she is limited physically and she is so much more cautious. The treatment and anaemia make her tired, unhappy and sometimes hurt, and even if it is for a phase, I do miss that cheerful feisty personality. Sometimes I see some of 'that Catherine', but othertimes I look at her and she looks a bit like a war weary little person who doesn't feel quite as safe as she once did.
Tonight she said to her daddy that she didn't want to have any more treatment. However, Mark explained that there was an end to the treatment and that she would get better but that she needed to take her medicines. Tomorrow we are back at the hospital for the day.
Hopefully when she looks back at this phase of her life she will not remember too much of the bad bits but more of the good bits...
Difficult decision - prayers please
Sorry this is a long post but I've tried to make something complicated a bit clearer! Basically, we are asking for prayer support for the following big decision in Catherine's treatment.
Tomorrow Catherine will be having her 'week 11 bone marrow test'. This test checks to see whether Catherine is still low risk and whether she is eligable for randomization. We will also be speaking to the consultant concerning a decision about randomization.
As part of the pursuit to improve treatment for leukaemia, all leukaemia treatment is part of a clinical trial. This is because no-one knows for certain how to cure leukaemia in every person with the illness.
In 1940, only 4% of children with Catherine's form of leukaemia survived. Before this clinical trial, which began in 2003, there was a 50% cure rate for children with leukaemia. Since then, specialists debate that there is now an 80%+ cure rate dependent on genetics. Without clinical trials there would be no progress.
Currently treatment for Acute Lymphoblastic Leukaemia involves two intensive blocks of chemotherapy. These would take place in January - February next year and April - May. However, there is the possibility that Catherine may only have one of these blocks if we enter her into a trial.
The trial that Catherine would be on seeks to identify whether children who are low risk need the existing two blocks of intense chemotherapy, or whether they would still be cured on one block of intensification.
There is a risk involved in two blocks of intensive treatment. Due to the side effects of the chemotherapy drugs during this phase, there is a slight risk of damage to the heart and a slight risk of a secondary cancer or a new type of leukaemia developing. Reducing treatment to one block of intensive therapy would reduce this risk.
There is also a risk involved in only receiving one block of therapy - the risk of relapse of the original leukaemia. Specialists are still not certain of the best overall route. However, as this trial has been going on since 2003, there are some statistics to support the ongoing continuation of this trial. In other words, it would seem that (most of the) children given one block of treatment in 2003 have not (yet) relapsed.
Going onto this part of the trial is called randomization. If we agree to the trial, Catherine will be randomly selected either to receive one or two blocks of intensification treatment.
At the moment, and following prayer, Mark and I feel that we will probably say yes to this trial. However this is a huge decision for us. It is very difficult deciding on something which may impact whether our child may relapse or not. This is about Catherine's future.
We really need prayers to make sure that God is in the randomization process - that Catherine will receive the right treatment to ensure a cure without a later relapse. If you would like to pray about this decision, please pray for guidance for us and that God will be in the randomization process.
Please also pray that tomorrow's procedure goes well, that she isn't too anxious and that she is still low risk.
Tomorrow Catherine will be having her 'week 11 bone marrow test'. This test checks to see whether Catherine is still low risk and whether she is eligable for randomization. We will also be speaking to the consultant concerning a decision about randomization.
As part of the pursuit to improve treatment for leukaemia, all leukaemia treatment is part of a clinical trial. This is because no-one knows for certain how to cure leukaemia in every person with the illness.
In 1940, only 4% of children with Catherine's form of leukaemia survived. Before this clinical trial, which began in 2003, there was a 50% cure rate for children with leukaemia. Since then, specialists debate that there is now an 80%+ cure rate dependent on genetics. Without clinical trials there would be no progress.
Currently treatment for Acute Lymphoblastic Leukaemia involves two intensive blocks of chemotherapy. These would take place in January - February next year and April - May. However, there is the possibility that Catherine may only have one of these blocks if we enter her into a trial.
The trial that Catherine would be on seeks to identify whether children who are low risk need the existing two blocks of intense chemotherapy, or whether they would still be cured on one block of intensification.
There is a risk involved in two blocks of intensive treatment. Due to the side effects of the chemotherapy drugs during this phase, there is a slight risk of damage to the heart and a slight risk of a secondary cancer or a new type of leukaemia developing. Reducing treatment to one block of intensive therapy would reduce this risk.
There is also a risk involved in only receiving one block of therapy - the risk of relapse of the original leukaemia. Specialists are still not certain of the best overall route. However, as this trial has been going on since 2003, there are some statistics to support the ongoing continuation of this trial. In other words, it would seem that (most of the) children given one block of treatment in 2003 have not (yet) relapsed.
Going onto this part of the trial is called randomization. If we agree to the trial, Catherine will be randomly selected either to receive one or two blocks of intensification treatment.
At the moment, and following prayer, Mark and I feel that we will probably say yes to this trial. However this is a huge decision for us. It is very difficult deciding on something which may impact whether our child may relapse or not. This is about Catherine's future.
We really need prayers to make sure that God is in the randomization process - that Catherine will receive the right treatment to ensure a cure without a later relapse. If you would like to pray about this decision, please pray for guidance for us and that God will be in the randomization process.
Please also pray that tomorrow's procedure goes well, that she isn't too anxious and that she is still low risk.
Wednesday, 5 November 2008
A good Christmas?
Catherine has continued on her upward swing today although she has been off nursery due to a very low immune system. This morning I took her for a walk to the corner shop to get some milk (we couldn't 'do' Sainsbury's as there are so many people there and a higher risk of germs). It was nice taking her out in the fresh air, and when we got there, she heard the music in the shop and got out of her buggy and danced! The shopkeeper thought she was great and she was nearly showered with gifts again!!!
Today we had a meeting with the specialist nurse and the community nurse about Catherine's treatment. The timing of her treatments may mean that the next intensive phase of chemotherapy will hit after New Year, which means that at least we may have a good Christmas at home without Catherine feeling too poorly. It will mean that January and February may be difficult for Catherine as the side effects of this treatment are more unpleasant. She will need different chemotherapy drugs and will also need the steroid again for longer periods.
Please continue to pray that she is free from infection. We have another bone marrow test due on Friday which will check to see whether Catherine is still low risk. If she is still low risk, we will be asked whether we want her to go into the randomization part of the treatment. This is a difficult decision, and I will blog in more detail about this shortly. Please continue to pray that God is in every aspect of Catherine's treatment and that His healing power will continue to be worked out in her. Thankyou.
Today we had a meeting with the specialist nurse and the community nurse about Catherine's treatment. The timing of her treatments may mean that the next intensive phase of chemotherapy will hit after New Year, which means that at least we may have a good Christmas at home without Catherine feeling too poorly. It will mean that January and February may be difficult for Catherine as the side effects of this treatment are more unpleasant. She will need different chemotherapy drugs and will also need the steroid again for longer periods.
Please continue to pray that she is free from infection. We have another bone marrow test due on Friday which will check to see whether Catherine is still low risk. If she is still low risk, we will be asked whether we want her to go into the randomization part of the treatment. This is a difficult decision, and I will blog in more detail about this shortly. Please continue to pray that God is in every aspect of Catherine's treatment and that His healing power will continue to be worked out in her. Thankyou.
Tuesday, 4 November 2008
Thankyou!
Catherine is now back home after having a blood transfusion. Thankfully the hospital decided to give her the transfusion which means that she has gone from a miserable exhausted child to a bouncy smiley little girl again! She still has some sort of virus, but the change was so profound after the transfusion. Before the transfusion, she was really nervous and said she would prefer 'to sleep all days' rather than go to the hospital. However, when we got home she admitted that she felt much better and that 'mummy was right'. So thankyou everyone for your 'emergency prayers'.
It is so strange having such an energetic child this evening - we forget how much more lethargic she becomes when she is anaemic.
Catherine still has practically no neutrophils which means she is still very susceptible to infections. The hospital has decided to take her off her two chemotherapy drugs for a week to allow her body time to remake some neutrophils. The drugs are clearly doing their job, but really depleted her body of haemoglobin and infection fighting cells. The blood transfusion means that she has a bit more strength to help her deal with life.
Tomorrow, Catherine will not be going to nursery due to her low neutrophils but will be making 'crafty things' for Christmas, including gift bags and crackers. However, she may now be a bit of a livewire so I only hope I can entertain her enough. She will then have some more bloods taken at lunchtime to check the effectiveness of the transfusion. We are also meeting with the Macmillan nurse tomorrow afternoon to discuss the next phase of Catherine's chemotherapy treatment.
It is so strange having such an energetic child this evening - we forget how much more lethargic she becomes when she is anaemic.
Catherine still has practically no neutrophils which means she is still very susceptible to infections. The hospital has decided to take her off her two chemotherapy drugs for a week to allow her body time to remake some neutrophils. The drugs are clearly doing their job, but really depleted her body of haemoglobin and infection fighting cells. The blood transfusion means that she has a bit more strength to help her deal with life.
Tomorrow, Catherine will not be going to nursery due to her low neutrophils but will be making 'crafty things' for Christmas, including gift bags and crackers. However, she may now be a bit of a livewire so I only hope I can entertain her enough. She will then have some more bloods taken at lunchtime to check the effectiveness of the transfusion. We are also meeting with the Macmillan nurse tomorrow afternoon to discuss the next phase of Catherine's chemotherapy treatment.
Subscribe to:
Posts (Atom)
.JPG)
