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!

'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.

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.

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.

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.

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.