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.

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.

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.

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.

First hurdle cleared



Yesterday marked the end of the first hurdle of treatment. Catherine's first block of chemotherapy is now complete and she has had the bone marrow test to determine how much disease is left. She has recovered well after this test although she is still quite tired from the general anaesthetic. We will not know the results for a few days, probably October 2nd when we next see our consultant.

The bone marrow test will look at the MRD (Minimal Residual Disease). The smaller the number of leukaemia cells they find at this point, the less likely the disease will return after treatment. Ideally we need Catherine to be MRD negative, which means that the leukaemia cells have fallen below 1 in every 10,000 marrow cells.

Catherine is now on the second block of chemotherapy which is designed to prevent any remaining leukaemia cells from entering the CNS (Central Nervous System). Past leukaemia research found that whilst most children were MRD negative after the first phase of treatment, if they did no further treatment the leukaemia would come back in the Central Nervous System (in the spinal fluid and the fluid surrounding the brain). Catherine has already had some chemotherapy to stop this from happening and now will receive a further block of chemotherapy.

This part of the chemotherapy includes an oral chemotherapy 'medicine' called Mercaptopurine which we can give her at home. She will also receive chemotherapy into the spinal fluid through weekly lumbar punches which are given under general anaesthetic. She has had this chemotherapy every time she has had a bone marrow test so we are not unduly worried. This part of her treatment will go on for the next three weeks.

Words cannot express how delighted we are that we can now start to reduce her steroids. The steroids will be reduced over the next week and the side effects of the treatment should also gradually diminish. Catherine will take a number of weeks to lose the weight she has gained, but her moods should become more balanced soon. Even though we have experienced flashes of the old Catherine we know and love - the odd giggle and mischievous look - it has been hard to see the temporary personality changes and experience the sleep deprivation.

Please continue to pray that she remains infection-free. Her immune system will still be very low due to the chemotherapy drugs. Please also continue to pray that the side effects remain minimal and that she adjusts well to this phase of treatment.

We really have reached an important milestone. For those who have been praying, please be assured that it is unusual for a child not to have experienced an infection by this stage in treatment. Catherine has NOT experienced an infection, and for this we are grateful. She has therefore come through this difficult time relatively well. Thanks to God!

Thursday, 25 September 2008

'That was ok, mummy'

Catherine had a good morning this morning and was able to spend some time at nursery before we took her for her chemo this afternoon. Once again, Catherine was quite stressed by the thought, and had forgotten that using her portacath meant it would not hurt. Afterwards she said, 'that was ok actually, mummy'. She was very miserable before bed tonight but I imagine she is very tired. The Haematologist at the hospital told us that the steroids can cause sleeplessness which would explain why Catherine has been up a lot through the nights.

Tomorrow Catherine will have another General Anaesthetic and bone marrow test. This is the big one that will determine future treatment and will help the doctors with her overall prognosis. So far, God has answered all our prayers positively and Catherine has a very good prognosis. Tomorrow will tell us how well she is responding to chemotherapy (and how the great prayer support is working!).

A friend said today how everything in his life had been preparing him for his future ministry. This made me think again how God has been preparing me for this time with Catherine. I can't say I am impressed with this situation - far from it - but when I look back I can clearly see how God had been shaping and preparing me so that I would be able to deal with this situation in His strength.

I read a book a while back which said that ‘Sometimes, God has to pull all the carpets out from under our feet, because it is only when we are flat on our backs, with our self-sufficiency shattered, that we will at last begin to look upwards to Him’. I was particularly struck by this quote at the time, because a few years ago I was very ill and it was at this time that I became 'God-dependent' and not 'self-dependent'. I'm starting to wonder whether God didn't think I had learnt my lesson last time, but maybe that was just the foundation course and I've now progressed to advanced level! I think I preferred it when I was on the most basic level...

Thankyou for your ongoing prayers. We do feel very strengthened by God at this time and from the knowledge that so many people are wrestling in prayer for our daughter.

Wednesday, 24 September 2008

Little Princess

I'd like to begin by letting you know that Catherine is in less pain now, so thankyou for praying about this.

We had a visit today from the community nurse who came to take some blood. Catherine was very nervous at first and took quite a bit of coaxing because she thought that her new portacath would hurt. However she was surprised to find that she didn't even feel it. She is still uneasy about wearing her 'wriggly' which is a little tube that they use to give chemotherapy and take bloods, so she decided to call it Melody after her drip. Even so, she was worried about sleeping with it in even though I tried to reassure her that it would all be ok.

Catherine has also been collecting her hair as it falls out and putting it into a bag. Losing hair is a side effect of the chemotherapy and not the illness. She isn't worried about her hair 'disappearing' as she knows that I have ordered her some new hair from the Little Princess Trust. The Little Princess Trust is a charity that supplies hair to children undergoing chemotherapy. Even though it is called the Little Princess Trust, the charity also helps little boys. I spoke with the lady on the telephone yesterday. We need to measure Catherine's head and send a photograph of Catherine to the trust. They will then prepare her new hair and she has then been offered a 'pamper session' where a hairdresser will fit and style her new hair. Catherine is so looking forward to it that she asked if she could have her pamper session today! She has also been telling me how she is looking forward to showing everyone that her hair is disappearing.

Mark and I are really tired at the moment. Catherine was up every hour last night, and only wanted mummy to help/cuddle/feed her. Poor Mark was woken up by the noise anyway, so we are both exhausted. We are praying for a good night's sleep tomorrow as Catherine has her next chemotherapy session in the afternoon. Catherine has also put on a great deal of weight from the steroids, which is only to be expected.

Please continue to pray for Friday's results. If the results are good from Friday's bone marrow test, she can continue on this level of chemotherapy and the prognosis is better.

Monday, 22 September 2008

Today

Today Catherine woke up and her shoulders and pillow were covered in wooly hair. She has discovered that she can now pull little strands out, and much to our surprise, found this highly amusing. She keeps talking about the way her hair is 'disappearing' and has been putting the remnants of hair in a little bag as she pulls strands out. However she still has quite a bit of hair although it is visibly thinning.

Something very special happened today. I was helping Catherine to get dressed when she suddenly said 'mummy, you are the best mummy ever!!!!' I am so delighted she can talk. She has never said anything like this to me before and it made me smile all day.

She has more energy today and has enjoyed some crafts and colouring. She has still been getting some pain from the area surrounding her portacath and her tummy. We are able to give her medicines to ease this, but it is clearly unpleasant for her. We know this because she is quite happy to ask for the painkiller even though it doesn't taste nice. She also did not sleep well last night and I was up every hour with her. At the moment, she is very clingy with her mum and demands me even though Mark is quite happy to attend to her.

I also took Catherine for a little walk in her buggy today to feed some nuts to the squirrels. However, Catherine got bored when the chosen squirrel wasn't brave enough to come and get its nut, so asked to go home again!

Please pray that Catherine no longer feels pain in the area of her portacath and tummy and that her recovery continues. As usual, please also pray that she has no complications from the chemo and no infections. On Friday we will have her final bone marrow test for this part of her chemotherapy. She needs to achieve a 'first remission'. I would be grateful if you could remember this in your prayers for her.

Saturday, 20 September 2008

A quiet day

Today has been a quiet and relaxing day. Some friends visited, and Catherine felt a bit better today so we took her out to the park for a picnic in her buggy. It was beautifully sunny and she seemed even better for getting out in the fresh air.

She is getting some joint pain at the moment, and the area where she has her portacath is understandably quite tender. Her moods are still up and down but she seemed much more relaxed today than she has been for a long while.

She is still very excited about having coloured toenails. I asked her what other colours she would like her toenails to be, only to be told 'yellow, red, blue, green and pink'. An interesting combination!

Please continue to pray that the side effects of the treatment are minimal and temporary and that she remains infection free. Thankyou.

Thursday, 18 September 2008

Good cells/naughty cells

Catherine is starting to lose her hair. I noticed it this morning as I was brushing it. She had a tangle in her hair and as I was trying to untangle it with the comb, several strands came easily away. I thought that maybe I was mistaken, so ran my fingers over her hair. About five dark blonde strands came off on my fingertips. I don't think it will take long before it is all gone.

We have told Catherine that her hair is going to disappear for a bit. Basically, it is going to go away and hide for a while and then come back later. Catherine seemed ok with this, particularly when she knew she was going to be able to choose her own hair. Today we were given some new hair from the hospital hairdresser - it is very elegant and pretty and about the same colour as Catherine's hair. We are also looking into getting her some pink hair too!

While we were waiting for the appointment, Catherine decided she wanted to draw a picture of the good blood cells and the naughty blood cells. The good blood cells, it seems, are red with pink hair and they smile. The naughty blood cells are green and look miserable. We explained to Catherine a couple of weeks back that she had to have medicine for her naughty blood cells which have pushed away the good blood cells. This medicine means that the naughty blood cells will pack their suitcases and leave. Then the good blood cells can move back in. She also knows that the naughty blood cells mean she can catch germs more easily, so she needs to keep her hands clean. She made us laugh today by saying that the naughty blood cells are going to 'get told off by their mummies and daddies'.

Today the hospital visit went well. Catherine was quite nervous when she arrived but was more peaceful than usual. She was surprised that putting medicine in the wiggly on her portacath didn't hurt. Otherwise, she has been in a bad mood all day. Very fed up, snappy and tearful. She is also very clingy with me. This is not like my child.

I felt quite angry today; angry that she is only three and going through all this. I wondered about whether to put this on the blog, but I am trying to be as honest as I can about everything. Mark and I are looking forward to when the steroids are stepped down at the end of next week. We have to reduce them slowly but she should be completely off them in two weeks. She will then only need them for shorter stints during her later treatment.

We are now looking forward to a weekend at home and at the park if Catherine feels up to it.

First pedicure

Catherine sat on the sofa all day today: she is still uncomfortable from the insertion of the portacath. She wasn't particularly interested in doing anything apart from eating or watching CBeebies. Her mood has also been very up and down and she is a bit scared of her portacath at the moment. She doesn't want Mark and I to look at it, and she only let me see it briefly when I changed her out of her pyjamas. She didn't even really want me to read her a story today, but she did enjoy having a chat with me.

At about lunchtime I had a moment of inspiration and remembered that her friend Milly at the hospital had her toenails painted pink. At the time, she had quite liked it, so I asked if she fancied having her toenails decorated too? 'Yes please!' she said excitedly. So Catherine had her first pedicure today and now has painted toenails! This made her smile and giggle lots and she enjoyed how the nailpolish felt cold and tickled as I applied it to her tiny toenails. Her feet looked so cute. I also ended up having to have my toenails painted the same colour although her feet ended up looking much nicer than mine...

We also had a bit of a sing-song. I played some nursery rhymes on my tenor recorder and Catherine sang along in full voice. She had an attempt at 'dancing' which consisted of Catherine going and standing in the middle of the room before sitting back down again. (Anyone who knows Catherine knows how energetic she normally is, so it has been sad to see her so weary). She wasn't too bothered, though, and instead had a go at playing her keyboard.

At the moment, it is pretty much around the clock care where Catherine is concerned, and we are up during the night either to comfort or feed her. It is almost like going back to the newborn stage but with a child who is able to talk and communicate with you. Mark and I are taking turns to do the nights.

Tomorrow we are going back to the hospital for two more chemotherapy drugs; one IV and one intermuscular injection. Catherine is very worried about them taking the 'wiggly' off her portacath, so please pray for peace for her tomorrow as she is likely to be feeling anxious. Please also pray that we will be able to help ease her fears and that all goes smoothly. And please also pray that God will complete his healing work in Catherine: He has already done so much, and answered so many prayers.

Wednesday, 17 September 2008

A snail?

Catherine had her portacath inserted yesterday under General Anaesthetic and I'm pleased to say that the operation went well. She is telling everyone today that she is 'being a snail' because she takes so long walking anywhere. The surgeon said it will take a few days for her to get used to everything but he was very positive about the operation so we are not too worried about this.

The operation lasted about one hour and it signals the end of all the attempts to insert cannulas. We are all relieved about this. The operation was scheduled for 1.30pm but unfortunately, Catherine was lacking part of the blood that helps with clotting and so they needed to give this before the operation. Half way through, the solution stopped flowing so we had to wait for a new bag to arrive. This put the procedure back until 3.30pm, and by this time Catherine was really hungry. She got really fed up with me and kept asking why I wouldn't give her food - she had her (huge) breakfast at 8am that morning and wasn't allowed any more because of the General Anaesthetic. This would be hard for anyone, but with Catherine on steroids it was even more of a challenge for her.

Today she is now coming to terms with this strange thing in her side. The portacath also clicks sometimes because it currently has the pin in it (this will be removed on Friday). She doesn't want to look at it at the moment, and only let me lift her T-shirt up to examine it if she didn't have to see it herself. She is feeling uncomfortable and last night I asked her whether she was hurting or sore. She told me she wasn't but it was clear to Mark that she looked in pain so we gave her some of her painkiller. 'Ah, that's better', she said. We then had to tell her that what she had been feeling was pain and that we could give her some medicine to take the pain away. I think Catherine has always had quite a high pain threshold - whenever she falls over she just gets up and carries on - but we were still surprised to be describing what pain was to her. She also didn't sleep well last night and wanted me to sleep in her bed with her until about 4am when we all got up and had another snack (she had already had five that night). Her daddy then swapped with me, but Catherine decided she was getting up at 6am!

So we had a restful day at home today. It has been good to have a few minutes to recover from everything that has been going on. She has also been laughing with us today, and because she cannot have a bath yet, she really enjoyed me washing her feet because it tickled!

We still need to be very vigilant that Catherine doesn't get any infections. Now that she has a portacath which passes into a vein, there is a risk that the line may get infected. Next Friday we will also be having her 28-day bone marrow test which will look at how much disease is left in her body. The aim of the first few weeks of chemo is to get rid of the existing leukaemia cells. Please pray that this has been effective, because she will then remain on the less toxic chemotherapy regimen and will therefore hopefully have less side effects. If all the cells are gone, she will have what is known as a 'first remission'. It is really important to have a first remission so that the treatment can be targeted at ensuring the disease doesn't come back. Thankyou for your prayers.

Monday, 15 September 2008

Rosy-cheeked and smiling!

Today as Catherine was receiving healthy blood during her blood transfusion, I just felt so thankful that someone had donated the blood she needed. I just want to say thankyou to everyone who donates blood - it is so valuable and has given Catherine a new lease of energy and life. It was great seeing the colour flood back into her cheeks after these weeks of chemotherapy. So to everyone who donates blood - you are doing a good thing.

If you're brave enough to want to have a go at giving blood, www.blood.co.uk gives lots of information about it. No pressure though!

Bravery award!

I asked Catherine what she thought about today. She said 'I was a bit tired and got bored a long while but it was not too bad'. Today Catherine had her first blood transfusion. A blood transfusion takes about four hours and we also had to get another cannula in again so we were at hospital today from 9-6.30pm.

Catherine was quite scared about going to hospital again today after Friday, and again it took a number of attempts to do the cannula. Eventually they asked an anaesthetist to have a go at getting a good vein. The anaesthetist looked so confident and inserted the cannula at first attempt, only for it to go wrong after a short while. It was a shame to see the disappointment in his eyes. They are so kind here. It was also hard when we all sat around and discussed what we were going to do - Catherine needed the blood before a General Anaesthetic tomorrow, but they were running out of usable veins. However, it was good that they discussed this with me in the room as I actually felt part of the decision-making process. The anaesthetist told us that the chemotherapy alters the veins temporarily so it makes it very difficult to insert canulas. This would explain why it had been so much easier before treatment began. They found one more vein that they could use and thankfully it worked.

Catherine stayed completely still through the whole procedure and the nurse was so impressed with her that she received a present. The nurse said she was the best little girl she had ever seen for dealing with that situation. Whether the nurse was just being very kind I don't know for sure, but I do know that she was impressed with her. Mummy got a sticker from Catherine for also being brave, so we are now both heroes. Daddy just got a coffee from the canteen, but he was more than happy with that.

Catherine is going to have her portacath inserted tomorrow as they have no good veins left for cannulas. This procedure will involve another anaesthetic. Please pray that the general anaesthetic and the procedure will go smoothly and that Catherine's body will adapt well to the portacath. Also that she will not get any infections and that she will also be ok with the portacath once she sees it and understands fully what it is for.

What is a portacath?

Most children receiving chemotherapy receive a portacath although some opt for a Hickman line. Catherine will have a portacath as it has more advantages for younger children than a Hickman line. A portacath is an implantable port device, which is positioned completely under the skin and inserted into the subclavian (?) vein to avoid the need for repeated cannulas. How is the portacath inserted into the vein? The portacath will be inserted under general anaesthetic in the operating theatre, positioned in the chest. The portacath can be used for chemotherapy administration, for taking blood and receiving hydration fluids. Catherine will be able to bathe and go swimming as normal. This will mean Catherine will need no more cannulas during her treatment. The portacath will be removed at the end of treatment.

Sunday, 14 September 2008

Food

Catherine has been tired again today and eating constantly. We think she has probably put on 5lbs in weight so far since she began the steroids but unfortunately, steroids are a really important part of the treatment. She has started to realise now that she is eating heaps more than us and keeps asking us whether we are hungry too and whether we would like something to eat as well. She talks about food all the time. When her little friend came round yesterday to play, she kept asking her whether she would like something to eat. Her friend went away having eaten a cheese stick, a biscuit and half an apple more than she would probably have eaten that day! We are constantly preparing food and drinks for Catherine and she even wakes up in the night for a midnight snack. Our food bill is becoming quite large as you might expect!

Tomorrow we are going to take Catherine for a blood transfusion which means another canula. After Friday's difficulties, we would ask that you pray for this to go smoothly and for them to be able to find a good vein on the first attempt. Also for peace for Catherine. Tuesday, it is likely she will need another General Anaesthetic so that she can have her portacath fitted. She will need to have nil-by-mouth for six hours before this procedure. At the moment I am dreading trying to deny food to my constantly hungry child. Please pray about this as I have no idea how this will work out.

I've just been talking to a friend who has agreed with me that the 'journey' idea from yesterday isn't perhaps the best way to describe what is happening at the moment. She suggested that it is more like a 'diversion' because when you go on a journey you generally have a choice. Diversion, she said, was more like going off the usual road for a while. I think this is probably a better description for how we are feeling.

In between feeding Catherine, I've also been reading an excellent book by Pete Greig called God on Mute. It's actually a book about unanswered prayer, but actually gives lots of insights into the way Christians try to make sense of things when they encounter big problems in life. I'd had this book on my bookshelf for a while but never read it because it was about his wife being diagnosed with cancer (I have never been one for reading 'unhappy' books unless absolutely necessary). However, I have found this to be really interesting and would recommend it to anyone going through difficult situations.

Saturday, 13 September 2008

A strange journey

It is strange how people describe things. When I have spoken to other people who have experience of Leukaemia, either parents or doctors, they all say that it is a 'journey'. Once you have the diagnosis, they say, it is the 'beginning of a journey'. I've found this a bit odd as I like travelling, so to me a journey is a good thing. Perhaps I will think of a different word that describes it later.

Catherine is still a bit shook up and on edge after yesterday, but has otherwise had a reasonably good day. She is still eating or thinking about eating constantly (the steroids), and now has a noticeable tummy and cheeks. Her moods are also up and down and she can get very tired and snappy. I feel sorry for her at the moment. It is so unlike her but I know it is temporary and she ends the steroids in a few weeks.

We also took her to a hairdresser today who has done a lot of research on chemotherapy and hair. She said that because Catherine was not losing her hair at the moment, she might actually keep her hair until the more intensive treatment at the end of the year. So instead of cutting her hair short we were able to give her a little bob instead along with a spray of gold hair glitter! The hairdresser is also getting some temporary pink hair colour into the salon. This is so that if Catherine does start to lose her hair, we can make it fun and pink for a bit. Catherine is excited about this and especially because she thinks mummy is getting pink hair too!!! I will end up looking like Stephanie from Lazytown at this rate...

Just to say, I've been looking today at the Facebook group 'Pray for Catherine' and am so amazed at how many people, that don't know Catherine personally, are praying for her. Thankyou to you all.

Friday, 12 September 2008

Not a good day

Generally, I'm hoping this blog will be more cheerful and apologies if this upsets anyone, but today was probably the worst day so far.

We went to hospital for the next chemotherapy. This needs to be administered through a canula, but because Catherine has had so many, the bruises covered up where the good veins were.

5 attempts later, the doctors were able to find a vein that would work. After the first three attempts, Catherine looked at me and asked 'Are you feeling sad, mummy?'. 'Yes, I said, because it is taking a lot of times to get this to work'. Catherine just shrugged her shoulders as if to say 'It is what it is mummy'. She is like this. Very stoic. On the fourth and fifth attempt, however, she had clearly had enough. It was very difficult as she was crying and shouting 'Leave me alone' at the nurses and doctors, who were obviously also really upset that this hadn't been achieved earlier.

It broke everyone's hearts in the room. Ours, and the lovely doctor and nurse who were trying to help us. It wasn't the doctors' faults at all, it was just that there were no good veins left.

Eventually it worked, and we were able to administer the next chemotherapy drug, but it was a very heavy and horrible day all round. The doctors, who were sad that this happened, are looking into putting in her port-a-cath early which will mean she needs no more needles. I will write more about this later when I'm feeling a bit more like writing.

Catherine is now peacefully tucked up in bed asleep and is looking forward to tomorrow when we are going to take her to play in the park.

What a shame after yesterday's positive news. Keep praying.

Thursday, 11 September 2008

God answers prayer - again...!


We have some excellent news. Today we went for the results of Catherine's bone marrow test and her genetic test. It was very nerve racking for us today, as the genetic make up of the leukaemic cells has a strong bearing on whether she will be cured or not.

Firstly, the bone marrow test. Catherine needed to have less than 25% leukaemic cells in her bone marrow so that she would not need another General Anaesthetic and bone marrow test tomorrow.

The Consultant told us she only had 0.8% leukaemic cells in the test sample. This is incredible news for us as it is extremely low. It doesn't mean she is cured yet, but it means she is responding extremely well to treatment (with a little help from the huge prayer support).

Secondly, we were relieved and delighted to find out that Catherine has GOOD genetic cells. Good genetic cells means that she is most likely to respond very well to her current treatment. This means we will not need to increase the strength of the chemotherapy and she can remain on the current plan. This should mean less side effects.

The Consultant has told us that, based on the initial response to treatment and the treatable nature of the cells, her prognosis has increased from good to very good.

The next hurdle is the bone marrow test at the end of the first phase of chemotherapy when they need to find no leukaemic cells in the bone marrow. This will ensure that she remains with a very good prognosis, so we need to direct prayers at this and also that she remains infection free with minimal side effects. These are the biggest risks through treatment. The treatment will then be directed at making sure leukaemic cells do not come back.
Tomorrow we are going back to the hospital for her next chemotherapy treatment and possibly a blood transfusion if she is anaemic. Please pray that this goes smoothly.
We still need to keep on with the two year course of chemotherapy, but this is good news.

Thankyou to the 20,000 individuals (at least) across the world who have been praying for Catherine and for us at this time. I would love to be able to thank you all individually, but it would take up too much space!
And especially, thanks God!

Wednesday, 10 September 2008

'I need a haircut'

Catherine was very tired today and kept going to bed, so Mark and I had suspicions that she had anaemia. This is to be expected as the chemotherapy reduces all the blood cells to kill off the leukaemia cells. We knew that if she was anaemic, she would need a blood transfusion, so we phoned the hospital and they asked for us to go to a local hospital instead of having to travel to the specialist cancer hospital.

When we got to the hospital, they started doing the whole gammut of observations and tests because we hadn't been to that hospital before. We thought we were just going there for a full blood count and maybe a transfusion, and we know they were being thorough, but Catherine got quite stressed because so much was happening at once. The hardest bit for Mark and I is when Catherine becomes anxious because she doesn't know what is going on. It was also made more difficult because, at that point, we didn't know what was going on either, so we couldn't explain anything to her.

The tests found that she was borderline for a transfusion - her bloods scored 8 and if they are less than 8 they recommend a transfusion. They also checked to see whether she had developed temporary diabetes as a side effect of the steroid (this could have caused her tiredness). She doesn't have diabetes, though. However, it was decided that she will be ok without a transfusion until at least tomorrow. The good thing is that she has now had an excellent canula fitted, so it will be easier for her to take the next chemotherapy drug tomorrow.

We did manage to get an hour in the park with friends today which Catherine enjoyed but it was hard seeing her concerned and upset at the hospital. We also had some visitors in the morning, and Catherine made them laugh by suggesting that she needed 'a haircut'. I'm not sure that a new hairstyle will be necessary with the chemotherapy, but Catherine does like to try and lighten everyone's spirits. She is very excited, though, at the idea of choosing herself some new hair. I said that I would have my hair dyed the same colour that she chose and she said 'I want pink hair, mummy'. Great. So now I'm going to look really interesting for the next two years...

Tuesday, 9 September 2008

Running on 'angel power'

Catherine has been feeling tired today and is still eating huge amounts. She also told me she was feeling 'fed up' but she is not sure why. Partly this is tiredness but it is also the side effects of the steroids. She is also having tummyaches and headaches, but brightened up today when some of her friends came round to see her. Mark describes Catherine as running on 'angel power' at the moment. She is still determinedly getting on with as much as she can and the side effects remain minimal.

Pickfords delivered all our boxes today and we were so grateful when some friends offered to help us unpack. It was such a relief not having to do it all, and even though we didn't get to finish all of the boxes, most of the rooms are now livable. The support we have received, both practically and through prayer, has been just amazing. We feel very loved.

Thankyou for keeping us in your prayers, and thankyou also to everyone who has contributed to the Pray For Catherine facebook group. We had no idea that Jonathan planned to start this group for us on facebook, but it has been a real source of strength for us as we have faced this as a family. We know your prayers are helping.

Monday, 8 September 2008

In the outside world

After being inside a ward on hospital for two weeks it was a mixed blessing to leave. Like other parents of children with leukaemia have told us, we both felt a bit like new parents taking a baby home for the first time - a new responsibility but not quite sure what we were doing. However, it was also great to be back out in the fresh air. Jimmy's hospital is brilliant, and the staff are excellent. They have really helped us get our heads around the technical side to Catherine's illness.

On the way home in the car, I started to think, which is never a good idea! I thought about the fact that, since Catherine was born I had tried to protect her from so many things. I remember getting over the six months after her birth, and having a mini celebration that the threat of cot death was over. I remember all the times I've made sure all the knives/medicines/cleaning products were out the way and all the plug sockets were covered. I remember the times I have paid extra attention when crossing the road with Catherine in her buggy, moreso than if it were me on my own. All those times when I have tried to keep her safe from harm. I had thought about the possibility of road accidents, meningitis, choking, food poisoning, fires and accidents at home but never in a million years had I thought Catherine might get childhood cancer. Something I couldn't have protected her from. Something I had never imagined. I know the diagnosis has happened, but sometimes I just can't believe it. It just doesn't make sense.

But I know God is still working despite all this and that He will bring us all through.

Hungry

We are now home much to everyone's relief. It has been hard to find time to blog this evening because of the amount of food Catherine is eating! I put her to bed at 7pm and at 9.30pm she was asking for 'lots of cucumber'. At 10.30pm she was asking for 'rice, peas and chicken'. She is eating huge quantities of food because of the steroids, and talks about food pretty much all day long. Her cheeks and tummy are certainly seeing the effects of all the food. However, this is a minor side effect of the treatment, and although Catherine is finding being hungry all the time annoying, at least she is not in any distress. Catherine was very pleased to be home, and today asked me why everyone was bringing her cards and presents. I think she was puzzled because it wasn't her birthday. We had to explain that it was because everyone was happy to see her out of hospital.

We spent the afternoon making a sticker chart like the one Catherine had in hospital (her idea). Every time she has medicine or a procedure, she will get a sticker and at the end of two weeks she gets a small gift. Today she has four stickers - she had two 'nasty medicines' and two 'very sweet medicines'.

As long as she doesn't show any signs of infection, our next appointment at hospital is Thursday when Catherine will be given more chemotherapy drugs. If the bone marrow test from last week was successful, and she has reached the required level, we will not need another test on Friday.

They are also looking at the genetic make up of the leukaemia cells. This is very important as it determines treatment and prognosis. Please continue to pray that Catherine's leukaemia is the most treatable, otherwise they would need to increase the chemotherapy and therefore increase the potential side effects etc.

Saturday, 6 September 2008

More answered prayer

We have been told that Catherine is being discharged from hospital tomorrow morning. Our next hospital appointment will be on Thursday when we will be in hospital all day for more chemotherapy. The wonderful thing is that, when we spoke to the senior nurse, he told us that it is unlikely for a child to come through this first stage of chemotherapy without an infection.

Catherine has not had an infection.

We believe this is answered prayer and I want to thank everyone who has been praying for helping our little girl.

Friday, 5 September 2008

My little yo-yo

Today I have been calling Catherine my little yo-yo as she has gone from being really exhausted to bubbly and cheerful and then exhausted today. Catherine has protested at her new nickname and says 'I am not an oh yo!'. She has had a problem today in that the muscles in her legs have become quite sore and she prefers not to walk about very much. This is probably one of the side effects of one of the chemo drugs, and whilst the doctors are not worried, it is causing her discomfort. I asked her whether she needed some medicine to take the pain away. Each time she replied 'No, it's ok mummy. It will be better soon'. Eventually, though, we managed to convince her to have some medicine, but she is prefering to tough it out without if possible. Please pray that she feels rested tomorrow and that the discomfort in her legs goes away.

Out of theatre

Catherine is now out of theatre after her bone marrow test and is doing well. She has eaten a huge bowl of rice crispies, a bowl of tuna and mayonnaise (!) and four slices of turkey roll plus a number of carrots! Sounds revolting, but Catherine seemed to enjoy it after having nil by mouth since last night.

The Consultant has said that we may now be discharged on Sunday evening! He is preparing her medication for us so that we can take it back to London. If we are discharged on Sunday, we will probably stay overnight in our 'Home from Home' accommodation before hitting the road for our four hour journey home on Monday. Thanks for your prayers. God is good.

Thursday, 4 September 2008

Catherine's prayer

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 :-)

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.

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.


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.

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

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.