It was really sweet today. Catherine was in the bathroom and suddenly said 'Dear Jesus, please make sure I don't get any germs. Thanks'.
Our little girl is learning to pray all by herself :-)
Thursday, 4 September 2008
What happened?
I received a lovely letter from a close friend today about Catherine. I always like receiving letters and e-mails because if people write how they speak, you can hear the voice in the writing! My friend asked me how Catherine was first found to be ill, and I realise that I haven't really written about this on her blog. So here goes.
About six weeks ago, the right side of Catherine's neck began to swell. We were on holiday at the time and we thought it was mumps which was concerning enough anyway!. We took her to the doctor who referred her to the hospital with what they thought was an infected gland. At that point, they took her bloods but everything was normal. Since then, we have been in and out of hospital as the gland kept going up and down. However, on the last dose of antibiotics, the gland came up again before treatment was complete. I had a feeling in the pit of my stomach that this was now something more serious so we went to the hospital again. It was here that the bloods were taken and they found that one of the white blood cell levels was down and she had no immune system. We were isolated while the bloods were sent to the specialists, and within six hours we were in the 'special room with the posh tea-set' where parents go to be told 'bad news'. The shock was extreme and I just wanted to be able to go through it on Catherine's behalf. At this point we were told the diagnosis was 90% likely.
So here was the beginning of this story. Thankfully, it was spotted extremely early as normally children are much more ill before they arrive at hospital. However, the general prognosis is the same whether it is detected early or not. Early detection does mean, though, that a child will be in a better state to take the chemotherapy.
About six weeks ago, the right side of Catherine's neck began to swell. We were on holiday at the time and we thought it was mumps which was concerning enough anyway!. We took her to the doctor who referred her to the hospital with what they thought was an infected gland. At that point, they took her bloods but everything was normal. Since then, we have been in and out of hospital as the gland kept going up and down. However, on the last dose of antibiotics, the gland came up again before treatment was complete. I had a feeling in the pit of my stomach that this was now something more serious so we went to the hospital again. It was here that the bloods were taken and they found that one of the white blood cell levels was down and she had no immune system. We were isolated while the bloods were sent to the specialists, and within six hours we were in the 'special room with the posh tea-set' where parents go to be told 'bad news'. The shock was extreme and I just wanted to be able to go through it on Catherine's behalf. At this point we were told the diagnosis was 90% likely.
So here was the beginning of this story. Thankfully, it was spotted extremely early as normally children are much more ill before they arrive at hospital. However, the general prognosis is the same whether it is detected early or not. Early detection does mean, though, that a child will be in a better state to take the chemotherapy.
Tomorrow
Tomorrow, Catherine has her second bone marrow test. Please pray that her bone marrow has reached the correct level of residual disease (less that 25%) and that she copes well with the General Anaesthetic. This would avoid a further procedure next week to remove some bone marrow again. Also, that there is still no trace of leukaemia in the spinal fluid and that the procedure goes well. We are so grateful for your prayers. We really feel that, as a family, we are being really cushioned by God at this time. Oh, and we had ANOTHER RAINBOW yesterday, so obviously God is still 'on the job'...
Consultant update: the technical bit
We had a visit today from the Consultant who said that, if Catherine continues not to have any major side effects or infections, we should be able to continue treatment at home and in out-patients from Monday. This is good news, so please continue to pray that she has minimal side effects and no infections. She really wants to get back home and see all her friends.
It is likely that she will lose some weight during the treatment through sickness or loss of appetite, so to combat this, we may need to give her lots of 'empty calories' (ie, cake, biscuits etc). She may also need a drip at home that she will use at night times. This drip is a 'feeding bag' which will replace the nutrients and calories that she does not eat during treatment.
Please continue to pray that she will get through this without infections or side effects from the chemotherapy.
This is such an unpredictable illness/course of treatment. We will not be sure how long we will be in hospital and how long we will get at home. It is pretty certain we will be in hospital at some point during the more intensive treatments. The risk of infection is one of the biggest threats. This is due to the fact that Catherine will have barely any immune system. She will still be able to go out and about, but we will always need to keep an eye on whether she gets a temperature or not. If she does, we need to come into hospital immediately for intravenous antibiotics for a few days. Unfortunately, some of the infections might come from bugs that are normally harmless in our own bodies but which can have an effect when the immune system is very low. We have also been asked to avoid farms and some other animals due to the threat of infection, as well as some foods and tap water. She will need to drink cooled boiled water, as tap water has one such bug which is harmless to us, but not good for those with no immune system.
We have been told that Catherine will keep most of her hair until the next major block of chemotherapy which is a bit more intense than this phase. We also had a visit from the Dietician yesterday and have been given a lot of information about feeding Catherine through her treatment. It was a bit sad really because, having spent her early years feeding her fruit and veg, things need to change through the chemotherapy treatment.
It is likely that she will lose some weight during the treatment through sickness or loss of appetite, so to combat this, we may need to give her lots of 'empty calories' (ie, cake, biscuits etc). She may also need a drip at home that she will use at night times. This drip is a 'feeding bag' which will replace the nutrients and calories that she does not eat during treatment.
Please continue to pray that she will get through this without infections or side effects from the chemotherapy.
Tuesday, 2 September 2008
Rainbow
Catherine had a real treat today. Not only were her bloods stable enough that we got to go to the 'Home from Home' accommodation for a few hours this afternoon, but when we returned to the ward we saw an incredible double rainbow out of the window. I have never seen a rainbow that was so bright. Catherine has always loved rainbows - so much so that she had a rainbow party - but she had never seen a real one. She loved it. It was so beautiful as it stretched right across the sky, and the end of the rainbow was right over the hospital church. We got really excited in the ward, but it was really stunning. One minute the sky was really dark and cloudy and the next minute it was full of colour. It made me think how wonderful things can come out of the darkness. It was very special.
Catherine has been really cheerful all day and the steroids have not caused her any mood problems today. She has made friends with the little girl in the bed next door. When the little girl got to go outside, she bought Catherine a Mars Bar. She also had some beautiful cards and crafts from her cousins which have now made her room very colourful and a really lovely badge too.
Catherine did sit down with me earlier and told me that she feels 'sad sometimes'. She doesn't like having her bloods taken and she misses her friends, but we had a cuddle and that helped.
Sometimes, Mark and I find it hard to believe that there is anything wrong with our little girl. It is such a silent serious illness that sometimes we only know she has it because the doctors tell us it is there. Please continue to pray for complete healing for Catherine. Thank you.
Catherine has been really cheerful all day and the steroids have not caused her any mood problems today. She has made friends with the little girl in the bed next door. When the little girl got to go outside, she bought Catherine a Mars Bar. She also had some beautiful cards and crafts from her cousins which have now made her room very colourful and a really lovely badge too.
Catherine did sit down with me earlier and told me that she feels 'sad sometimes'. She doesn't like having her bloods taken and she misses her friends, but we had a cuddle and that helped.
Sometimes, Mark and I find it hard to believe that there is anything wrong with our little girl. It is such a silent serious illness that sometimes we only know she has it because the doctors tell us it is there. Please continue to pray for complete healing for Catherine. Thank you.
Dexamethasone and Catherine
Dexamethasone is the name of the steroid that is being used to treat Catherine at present. Yesterday afternoon, the Dexamethasone really hit her system and it was almost like our little girl had a personality transplant. The only time she has ever had any mood swing like this was when she had treatment for an infection as a young toddler and she head-butted me!
Poor Catherine was a mixture of being aggressive, inconsolable, stressed and snappy. When I told her that I loved her, she said 'No, you don't love me' which she would never say otherwise. Normally, I can calm her down with cuddles and talking but all she wanted to do was 'be on her own', so much so that she shut herself in the toilet and wouldn't come out. Poor thing. It was such a sudden reaction, and even though we knew it was the medication, it was hard to see. Thankfully today she seems much brighter, and is chatting to us again while playing with Mr Potato Head. The nurses looked sad when they saw her as they knew how polite and gentle she had been before the meds. However, they have said that once her system gets used to it, she should be able to tolerate it better.
Catherine is now off her drip, so thankyou for your prayers for this. She is also drinking much better than usual so hopefully she will stay off for a while. If her bloods are within safe limits today, we may be allowed off the ward to our accommodation with her for two hours. This will be a lovely treat for her. She is like her mummy and daddy and gets cabin fever.
Catherine's mummy
Poor Catherine was a mixture of being aggressive, inconsolable, stressed and snappy. When I told her that I loved her, she said 'No, you don't love me' which she would never say otherwise. Normally, I can calm her down with cuddles and talking but all she wanted to do was 'be on her own', so much so that she shut herself in the toilet and wouldn't come out. Poor thing. It was such a sudden reaction, and even though we knew it was the medication, it was hard to see. Thankfully today she seems much brighter, and is chatting to us again while playing with Mr Potato Head. The nurses looked sad when they saw her as they knew how polite and gentle she had been before the meds. However, they have said that once her system gets used to it, she should be able to tolerate it better.
Catherine is now off her drip, so thankyou for your prayers for this. She is also drinking much better than usual so hopefully she will stay off for a while. If her bloods are within safe limits today, we may be allowed off the ward to our accommodation with her for two hours. This will be a lovely treat for her. She is like her mummy and daddy and gets cabin fever.
Catherine's mummy
The Professor
There is a lot to update you on as we had no laptop to blog on last night, so this may be a long post!
We have some good news. We were told yesterday that the spinal fluid has no trace of Leukaemia cells at present!!! This is wonderful news, as it means that Catherine should not need radiotherapy and we just need to concentrate on the chemotherapy. Thankyou for praying for this - it is wonderful and encouraging news.
Yesterday we spoke with one of the key specialists for Leukaemia, and, looking at the situation through statistics and the way she presented with her symptoms, the outlook is good. I was surprised to find out from a consultant that Catherine may well have had Leukaemia from birth as it takes a while for the cells to 'fill' the bone marrow before spilling out into the blood. I was also amazed to find out that one dose of each of the first chemotherapy drugs generally eradicates the majority of leukaemia and the rest of the treatment is aimed at getting rid of the remaining disease.
The Professor also said they are looking at the genetic make-up of the leukaemia cells to see if they are likely to be most responsive to treatment or less so. Although Leukaemia is not genetic, they are looking at the mollecular level of the leukaemia cells because they know which ones are most and least treatable. There are also some in the middle range that they are unsure whether they are easier to treat or not. Please pray that the news from these tests is positive and that Catherine has the more treatable cells.
We will find out on Friday whether Catherine has hit the 25% mark when she has her next bone marrow test. This will mean that she has responded well to the first dose of chemotherapy. Please pray that this will be achieved and that the majority of cells will be destroyed in this initial stage. It will mean they can continue with her treatment at this level and not have to increase the chemo, which will increase the risk of side effects and infection. Please also pray that side effects are minimal and that the bone marrow test goes safely on Friday.
Mark and I are so thankful for your support. We have told Catherine that many people care for her and that she is getting lots of good wishes and prayers.
We have some good news. We were told yesterday that the spinal fluid has no trace of Leukaemia cells at present!!! This is wonderful news, as it means that Catherine should not need radiotherapy and we just need to concentrate on the chemotherapy. Thankyou for praying for this - it is wonderful and encouraging news.
Yesterday we spoke with one of the key specialists for Leukaemia, and, looking at the situation through statistics and the way she presented with her symptoms, the outlook is good. I was surprised to find out from a consultant that Catherine may well have had Leukaemia from birth as it takes a while for the cells to 'fill' the bone marrow before spilling out into the blood. I was also amazed to find out that one dose of each of the first chemotherapy drugs generally eradicates the majority of leukaemia and the rest of the treatment is aimed at getting rid of the remaining disease.
The Professor also said they are looking at the genetic make-up of the leukaemia cells to see if they are likely to be most responsive to treatment or less so. Although Leukaemia is not genetic, they are looking at the mollecular level of the leukaemia cells because they know which ones are most and least treatable. There are also some in the middle range that they are unsure whether they are easier to treat or not. Please pray that the news from these tests is positive and that Catherine has the more treatable cells.
We will find out on Friday whether Catherine has hit the 25% mark when she has her next bone marrow test. This will mean that she has responded well to the first dose of chemotherapy. Please pray that this will be achieved and that the majority of cells will be destroyed in this initial stage. It will mean they can continue with her treatment at this level and not have to increase the chemo, which will increase the risk of side effects and infection. Please also pray that side effects are minimal and that the bone marrow test goes safely on Friday.
Mark and I are so thankful for your support. We have told Catherine that many people care for her and that she is getting lots of good wishes and prayers.
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