Wednesday, 31 December 2008

More answered prayer!

By today, New Year's Eve, Catherine's temperature completely stabilized again, meaning we do not need to go into hospital. It never again hit 38 degrees. We are at home for New Year.

Thankyou for your prayers for Catherine this year. They mean so much. To everyone who reads this blog and cares for our family from a distance in prayer, we wish you all a very happy New Year.

Tuesday, 30 December 2008

Thankfully still at home

We are still at home! After Catherine's temperature hit 38 degrees, we monitored her through the night and even though she has a temperature over 37 degrees, it has come down and has not hit the level where we need to take her in to hospital. The hospital confirmed that we do not need to take her unless her temperature goes above 38 degrees. This is great news and a relief for Catherine who just wants to play at home.

Monday, 29 December 2008

On our way to another stay in hospital...

I am writing this at nearly midnight. Currently we are at home and Catherine's temperature has hit 38 degrees. We are waiting an hour to check her again, but it looks like we'll be having another stay in hospital with Catherine on intravenous antibiotics. She is not in any distress and doesn't look flushed, but if her temperature hits 38.5 degrees then we are definitely on our way. Oh, how miserable. She will not like being woken up...

She had her chemotherapy drugs today - Doxorubicin and Vincristine - and this went well. She has a small number of neutrophils but is still susceptible to infection at this stage. On the way to the hospital, she suddenly piped up 'Mummy, when will I be better like all my other friends'. It looks like she has realised that her life is a bit different to her friends' lives at the moment.

Prayers would be welcome. Please pray that the infection is only minor and can be easily solved, and that her temperature comes down. Thankyou.

Friday, 26 December 2008

Christmas Day


















Catherine has decided that she loves Rudolph the Red-nosed Reindeer but thinks that Father Christmas is ''a bit scary'' because he comes into bedrooms at night time. So, rather than leaving a mince pie out for Father Christmas, she left a carrot and a bowl of water outside for Rudolph instead. In the morning, she was so excited to see if Rudolph had eaten his carrot, that she left half her presents to go outside and have a look.

On Christmas Eve, she went to bed physically shaking with excitement. However, she still didn't like the idea of Father Christmas at all. She couldn't understand why she couldn't see him and thought he was afraid of children! We managed to persuade her that Father Christmas was only going to go into the living room with her presents, but she still woke us up in the night because she didn't want him in her bedroom.

We have had a very special Christmas with Catherine. She has been well all through Christmas and her blood counts were very good which meant she has been leaping around all over the place (well, as much as she is able to)! She had some 'fizzily feet' (side effect of chemotherapy) on Christmas Day, but it was only minor and went away quickly. She thoroughly enjoyed opening her presents and had fun playing with her friend in the afternoon.

Thankyou for your continuing prayers for her. We are so relieved that she didn't have to spend Christmas in hospital, and because of Catherine's situation, I have to say I ended up thinking about and praying for the families and staff in hospital a lot this Christmas. We have our next dose of chemotherapy on Monday - Doxorubicin and Vincristine.

Monday, 22 December 2008

Christmas approaches...

Catherine had a difficult day yesterday as all the treatment hit her system. She felt quite fragile and her moods were really up and down (steroid). One minute she was crying and wanting to be cuddled, the next minute she was cheerful and bouncing around. Her hearing and sense of taste and smell are all heightened from the treatment, and she kept complaining that things are too loud or smell funny. She was also up a lot during the night, which we found happens because of the steroid treatment. She woke at 1.30am, 3am, 4am, 5am and then was awake in bed until 6am.

However, today she has been much better. She still looks really tired but is feeling much more cheerful and has just gone up the park to play with a friend. We are trying to make the most of this week as the treatment will hit her neutrophils by next week, meaning she is much more susceptible to infection.

Today she has been walking round the house with her pillowcase full of toys pretending to be Father Christmas. She is also getting excited about Christmas, especially when she found her 'socking' (stocking) and found out that she will get presents in it on Christmas Eve. She was also very excited today when we found the video of her first Christmas. She could tell that the baby was her, and thought it was funny that she couldn't talk or walk properly then. Catherine's grandad is coming to stay with us over Christmas, so she has also been excited that 'Grandfather' will be sleeping in the room next to her and that 'Father Christmas will also bring Grandfather some presents too'.

Saturday, 20 December 2008

The Star

Catherine has had her treatments and was well enough to take part in her nativity play - thankyou for your prayers!

On Thursday she had three chemotherapy drugs and her bone marrow test under general anaesthetic which she calls 'wobbly medicine' (because it makes her feel 'wobbly' afterwards). She did very well and was very calm about the whole thing. On Friday she had another chemotherapy drug and we have had to start treatment with steroids again for seven days. This means that Catherine is likely to be a bit sensitive, grumpy and fed up, and that her appetite will increase again for a short while. However, she was still feeling cheerful yesterday when she took part in her nativity play...as the singing star!

Today we went out for a meal together at Nandos before her neutrophil count takes another big dip - this is likely to happen in the next few days. Catherine really enjoyed it, enjoyed her chicken and garlic bread, and spent the rest of the afternoon napping on the sofa. Her moods have already been a bit up and down today, but we are not sure how much of this is the steroid and how much is tiredness from all the chemotherapy drugs.

Catherine is now also taking an anti-sickness drug, as Doxorubicin can make her feel or be sick. Doxorubicin is an effective drug although stronger than any she has had before. It is still weird watching your child as a drug labelled 'cytotoxic' (cell killer!) is pumped into her little body as she is eating her snack! I'm just pleased she doesn't really know what it is!

Specific prayer requests again are for protection against side effects and infections. Also that Catherine receives the right treatment plan during randomization - good enough to ensure that she doesn't have a relapse. We have had so many victories during Catherine's treatment that I know God is working on her behalf. Thankyou for your prayers.

Wednesday, 17 December 2008

A surprise

Today we had a surprise: a package and a card. The card was a prayer card from the Netherlands. It was very special to read what was written on the card. A gentleman who has leukaemia had heard about Catherine entering the next phase of chemotherapy and spent time praying her. The message on the card was very moving. Then we received a little parcel containing a little wooden cross made out of wood from trees near Bethlehem. I don't want to embarrass people by mentioning them by name, but this was a gift from a lady who we have never met. When Catherine saw the wooden cross, she smiled and kissed it. She said 'I really like this mummy, I will put it here'. Tonight when she said her prayers, she asked for it to hold. The kindness of people still moves me, and everyone's prayers and tokens have meant so much.

Catherine knows that tomorrow is 'not a school day' but is more worried about having the little plaster on her back than actually having the general anaesthetic! I have reassured her that we can take the plaster off gently by soaking it in the bath. This seemed to do the trick, and she has gone to bed much happier. Please pray that the procedure goes well tomorrow and for all the doctors and nurses that will be working at her hospital tomorrow. Thankyou.

Catherine has an e-mail address!

Some people have been having problems posting messages on Catherine's blog, so we have started an e-mail account if people want to send an e-mail instead. The e-mail address is:

catherineisgreat88@rocketmail.com

Sunday, 14 December 2008

Photos as promised






These are some photos a friend took from Catherine's last stay in hospital a few weeks ago.

This week and Doxorubicin

Thank you for your prayers! Catherine managed to get through her tummy bug without a temperature which means we were able to stay at home. She was also better the following day and had enough neutrophils so we were able to go to the pantomime after all! We went to see Peter Pan and Catherine loved it. Today, all she has spoken about is Peter Pan and whether we can see it again. She demanded, and has coloured in, pictures of Peter, Wendy and Hook off the internet. She has also dressed up as a fairy and been practicing flying!

We are going to hospital this week to begin the next phase of chemotherapy. This is a more difficult phase, and begins on Thursday with a general anaesthetic, bone marrow test and chemotherapy into the spinal fluid. I am also a bit nervous about Friday because she will be at hospital again to receive two chemotherapy drugs: Vincristine, which she has had before, and Doxorubicin.

I am a bit nervous about Doxorubicin as it has some scarier side effects: weakening of the heart muscle and there is a small risk of a second kind of leukaemia. Please can I ask for your prayers again, to ensure nothing happens to her heart and that she does not get another form of leukaemia. Also please pray that the side effects are minimal during this phase and also that she does not get an infection.

Thank you for your prayers concerning chicken pox a few weeks ago. I am pleased to confirm that Catherine did not get the chicken pox infection which can be difficult for children who do not have much of an immune system.

It has been really good being on a less intense chemotherapy regime, but we know the next set of chemicals can be problematic.

Friday, 12 December 2008

Catherine is poorly

Catherine was up most of last night being sick with the sickness bug that Mark had earlier in the week. She is off school and is currently at home on the sofa fast asleep.

Please pray that she doesn't get a temperature, otherwise we will have to go to hospital for another five days. Catherine is desperate not to miss her Christmas nativity play - it is next Friday, and she needs to be well enough for rehearsals too. She will be singing 'Twinkle, twinkle little star'. She loves singing and can't wait to try on her costume. She also has her nursery Christmas party next Tuesday, and I'm going to feel really rotten if I have to tell her she can't go. Catherine is such a social animal (!) it is hard for her to be cooped up. She has already been sulking today because she is bored, so we made a giant Christmas cracker and card for the carol service.

Thank you for your prayers. I plan to put some more recent photos on the blog soon so you can see how Catherine is doing.

Sunday, 7 December 2008

Carolling in hospital, not counting the hours...

I've just been back to Catherine's ward from last week - carolling with the band! It was very strange going there and knowing everything that goes on, but only going there to sing! We actually sang a whole rendition of Rudolph the Red-nosed Reindeer and Away in a Manger on the exact spot where she was taken in with her fever last week. Bizarre!

I remember the strange mixture of boredom and stress on the wards and thought how welcome it was to have some people come and sing to us when we were there last week. Carolling was very worthwhile. I felt privileged to be in the oncology and children's wards, and being a bit more experienced in these things than I used to be, I didn't feel at all awkward. It was very weird - almost like being at a home-from-home!

When Catherine found out that mummy was going out earlier, she wanted to come with me. However, when she realised I was going to her hospital to sing she said 'no thanks, mummy. I stay here with daddy!?!?'

Catherine is doing well and there are no more signs of infection. She has been off school all week and is quite happy and contented to play with her mum all day, although soon we will run out of craft equipment!!!

I was talking with Mark last night about Catherine and her treatment, and we agree that, whilst we are pleased that everything is going well and whilst we are confident about the future, Catherine's illness can actually be quite emotionally draining. Its like a little gnawing pressure in the back of your mind, having to remember all the medicines and treatments. It is also difficult to love someone and see them go through all this treatment. It was good yesterday for us both to be able to have a few minutes to talk things through and we both feel better for it.

Thursday, 4 December 2008

Spider hunt

Our daughter is doing well and has not had any more temperatures or signs of infection. Her blood results were good today even though her neutrophils are dropping again.

She is getting used to not being at nursery and is enjoying it a little too much - tonight when she went to bed she was pleased that she was staying home tomorrow!!

Today she has been on a spider hunting expedition, using the pump from her inflatable bed to suck up imaginary spiders around the house. They are very wonderful colours - she sucked up a few pink and green spiders today, and her imagination must be good because when there is a big spider, she looks a bit nervous and creeps up on it slowly! We have also been doing some Christmas crafts and tomorrow we will be making paper chains! Yesterday, she read her little book for the first time. It was very exciting and she was very proud.

We are conscious of the fact that her intensification block of chemotherapy starts shortly (December 18th) and we are not looking forward to it. There are some more serious potential side effects of this treatment along with a greater risk of infection. The lesser side effects, although very unpleasant, include nausea and vomiting, mucositis (inflammation of the mouth, throat and stomach leading to soreness and ulcers), inflamed oesophagus and difficulty swallowing(oesophagitis) and muscle pains. More serious but rarer problems include the development of another form of leukaemia or a secondary cancer. Also there is a risk of heart problems.

Please pray for Catherine. I don't want this time to be the calm before the storm but the medical profession have warned us that the next phase is unpleasant for Catherine. Please pray for us as we administer a number of the drugs at home, as it will be hard to give her medicines when we know they might make her feel very ill. Please pray that we will have peace at this time and know that we are firmly in God's hands.

I look at her every night grateful for the day that we have had together, knowing that the next couple of months need lots of prayer surrounding them.

Monday, 1 December 2008

5 sleeps, now home

This evening Catherine is sleeping in her pink bed with her teddy knowing that she will not have to be woken up to have medicine all night.

Yes, Catherine is home.

We were allowed to leave hospital at lunchtime today after her neutrophil count went up from 0.3 - 2.1 (which is a big jump for Catherine). However, they were unable to find out what caused the infection in the first place. The nearest diagnosis was an upper respiratory tract infection but they were still not completely sure.

Catherine is very relieved to be home. This morning she wailed, 'But mummy, I have already done 5 sleeps'. We do not plan to take Catherine to 'school' for the next few days but this will be hard for her as she loves nursery. I am hoping to distract her by putting up the Christmas decorations tomorrow, but I don't know how long it will last.

Thankyou for your prayers. It has meant that Catherine now has enough neutrophils to come home and can resume her chemotherapy. She is still on oral antibiotics and her potassium supplement for the next few days, but is so pleased to be home. Please pray that this infection is now gone or under control and that she will not have to go into hospital for any more treatment for it in the next week!

Sunday, 30 November 2008

Still in hospital

We are still in hospital. We cannot go home until Catherine's neutrophil count increases to a level where she can fight the temperature. She had her blood transfusion today and stunned the nurses by running down the corridor to the toilet and back! But she is still not well enough to come home. We still do not know the results of the blood analysis, which means we do not know the cause of the infection.

Today, a little boy spotted Catherine and came over to ask her to play. I explained that Catherine had germs and had to be in a room on her own. The boy piped up 'he doesn't want to play with me, isn't it?' and then wagged his finger at Catherine and shouted 'You been eating loads of RUBBISH, you have. That's why you've got germs'. He turned to go and then came back, wagged his finger again and added, 'You been eating burgers and stuff, innit?' before going back to the ward. Catherine stood there looking slightly stunned and said 'Mummy, what's wrong wiv dat little boy?'. Children can be so funny together. It's a shame they are all poorly.

Please pray that Catherine's bone marrow produces more neutrophils and that she will be well enough tomorrow to go home. If her blood results tomorrow show she has enough neutrophils she will be able to leave hospital. If not, we will have to stay in hospital until her body has made the required amount.

Catherine is now too full of energy, and too bored, to stay confined to a small room!

Saturday, 29 November 2008

'I would really like to go home at some point'

We are still in hospital. Catherine is feeling much better in herself but she still has a temperature so we cannot leave the hospital until Monday at the earliest. However, earlier this evening the thermometer said Catherine had a temperature of 38.9 even though she was not flushed or extremely hot. After further investigation the nurses found that the thermometer was not working correctly and her temperature was only 37! We are now not quite sure what temperature she is, but we will still have to stay in hospital until her temperature settles.

We still do not know what has caused the infection but thankfully her neutrophils (the part of the blood that fights infection) are now going up.

Her haemoglobin levels have taken a big hit and have gone down from 9.2 - 7.8 in the last few days. This means she will need a blood transfusion tomorrow. She is also receiving a potassium supplement, as they found that the levels of potassium in her blood were down. Catherine liked this one the first time she had it, as it was bright girly pink medicine. The second time, though, we needed to bribe her with a fruit pastille as it tasted so foul the first time. Poor thing.

The doctor thought Catherine was really sweet today when she said, 'I would really like to go home at some point'. She told her she thought it was a very grown up thing to say. Catherine felt shy that she had been overheard!

Tomorrow when she has her blood transfusion her energy levels will most likely increase dramatically. Usually this would be fine, but in isolation in a small room we imagine she will be climbing the walls when she gets some new found energy!

Please pray that the infection is quickly resolved and that she is well enough to leave the hospital in the next couple of days. She really wants to go home, and whilst we have been coping with DVD's and story books, she will REALLY want to go home after the blood transfusion.

Thursday, 27 November 2008

Asleep in hospital

Catherine has steadily improved today and, thanks to Calpol, her temperature is now steady and down to 36.4. We are waiting for the results of her blood test to find out what sort of infection she has. At the moment, they think it is most likely to be a virus, which means we can leave hospital on Saturday. If it were a bacterial infection we would possibly be in hospital longer, but it all depends on how she responds to the antibiotics. She still has absolutely no neutrophils, but hopefully these will start to edge up again in the next few days.

Catherine is currently fast asleep, but will be woken through the night for her various medicines and monitoring.

Please pray the infection is resolved quickly and that Catherine continues to take everything in her stride. Thankyou.
This morning, Catherine still has a high temperature and the doctors found no sign of a chest infection or pneumonia on the X-Ray. We will probably move wards later today.

Wednesday, 26 November 2008

Catherine is in hospital

Catherine is in hospital with an infection. Her temperature went from 36.7 - 38.2 in an hour, and by the time we got to hospital half-an-hour later, her temperature was 39.7. I thought it was a huge jump in such a short space of time.

Doctors are currently unsure what is causing the infection, although they think it may be a chest infection as she has had a bad cough for a couple of days. We are awaiting the results of her chest X-Ray. They are looking to rule out pneumonia.

She is currently being treated with two wide-ranging antibiotics through her portacath. Her bloods show that she definitely has an infection and they are sending her blood for further tests to try and find out the specific cause of the infection.

She is feeling quite miserable and is not happy about having to stay in hospital, but she is being very stoic as usual.

Once we have established the cause of the infection, I will let you know.

Tuesday, 25 November 2008

Immunity Zero - please pray

For the first time in her treatment, Catherine has absolutely no neutrophils. These are the part of the blood that fights infection. It was a bit nerve racking hearing the news today, as she has always had a few neutrophils, even when she was immuno-suppressed earlier in her treatment. She already has a cold, and the hospital suggests that the cold is using whatever netrophils were in her blood stream since her last blood test.

We really need prayers now against infection. The greatest risk of infection for immuno-suppressed patients actually comes from usually harmless bacteria in their own bodies, so please also pray that she doesn't infect herself! So far, she has had no infections, so please keep praying that nothing else hits her system at this point.

At the moment, we have not been told to keep her away from nursery. If this changes, we will obviously keep her at home.

Thankyou for continuing to support our little girl.

Sunday, 23 November 2008

Chemo and crackers!

Catherine's immune system has taken a bit of a hit again from the chemotherapy, so the hospital has advised we stop her chemotherapy until Tuesday to give her body a chance to recover. She is currently on three main drugs: methotrexate, vincristine and mercaptapurine. She is also taking the steroid again until Tuesday, so she has been a bit grumpy and is quite sleepless at night. Her appetite is also increasing, but we hope that it will not become too extreme in the few days she needs to take this drug.

We have been told that we will need to start the intensive chemotherapy block in the days running up to Christmas. However, we should have a break from hospital visits from 19th - 29th December, so we can have a Christmas at home. Catherine is very excited about Christmas. She is very funny because all she really wants is a spotty scarf which we have ordered! She also wants a Playdoh set which we have bought already, but otherwise she is not fussed. She would rather make all the Christmas crafts instead. We are making Christmas crackers at the moment, and she enjoys colouring in the pictures.

Please pray that she continues to have the treatment without side effects or infections. Thankyou.

Thursday, 20 November 2008

Celebration!!!!!!!

Today Catherine had her MRD result. The MRD test is a very sophisticated test that shows whether there is any leukaemia left in the bone marrow.

The Consultant has told us:

'Catherine is in the VERY SMALL number of children in whom the leukaemic DNA clone was ELIMINATED at a very early stage. This is proven through both of her MRD tests'.

'Catherine is definitely in remission'.

She will still need to complete the full course of treatment to ensure that there is no relapse.

Yesterday, Catherine told her nursery teacher, 'God is looking after me'. I think this is proof of everything we have believed all along - Catherine is firmly in God's hands and His healing power is being worked out through her.

We have decided that Catherine will be entered into randomization. Mark and I both feel this is the right course of action. We will be confirming this course of action in mid-December when we will find out whether she will receive one or two intensive blocks of chemotherapy.

Please pray that Catherine receives the right amount of chemotherapy to ensure that the leukaemia will never return, and also that she will not get any side effects or infections while she continues the treatment.

Thank you for the faith of so many who have brought our daughter to Jesus time and time again over the past months. Please continue to support her, particularly as she will still need to enter the difficult intensive block of chemotherapy over Christmas and into the New Year.

People have asked whether miracles really happen today. I'm sure you will agree that throughout Catherine's story, mini-miracles are happening frequently. Today's news is so wonderful.

We really value everything you have done.

And thankyou, God, for everything You have done.

Wednesday, 19 November 2008

More answered prayer

Catherine had bad leg pain last night. We assume it is part of the side effects of the medication again. It was so bad that the painkiller didn't seem to have much effect, and the pain woke her up again. I hated seeing her in pain and was contemplating phoning the hospital when I thought I would take a moment to pray first. I managed to get her reasonably settled and put my hand on her leg and prayed. She calmed down and gently went back to sleep. She then slept all night.

In the morning, she was all happy and bouncing around. I asked her how she was feeling: 'I'm fine today', she said. 'I went to sleep when my leg hurt and woke up and it all feels better!', she exclaimed. I told her about how I had prayed for her leg and how God had helped take the pain away as the medicine wasn't working very well.

She bounced out of the kitchen with her cup of juice. Just when she was nearly out of earshot, she said 'Thanks, God', very matter-of-fact and in the way you would speak to your best friend. Sometime I think she knows Him better than me.

Monday, 17 November 2008

Faith

This morning we had to go and collect Catherine from nursery because she had been sick. We monitored her at home, but pleasingly she was cheerful and happy and bouncing around again in no time. We think that she didn't eat enough breakfast this morning, and when she took her medicines, they didn't have a very good effect on an empty-ish stomach. It wasn't her chemotherapy medicine, but her 'banana medicine' (which prevents chest infections). She calls this medicine banana medicine because, logically, it tastes of bananas. Not to be confused with her 'banana spray' which smells of bananas and is used to spray her portacath before she has her bloods taken.

Out of all the medicines she has had so far, Catherine says her favourite medicine is the banana medicine followed by the one that tastes like melon. The 'orange medicine' is tolerable because she has it whilst she is half asleep, but her least favourite is the 'lemony medicine'. She says it is 'all fizzily on her tongue'.

She really enjoyed the rest of the day. Tonight she was complaining of a bit of earache, but she said 'I will sleep with my earache and it will be better in the morning!'. There's faith for you!

Sunday, 16 November 2008

Love

Catherine came into my room this morning and pointed to a picture. She asked me who was in the picture and I replied that the picture was of Jesus.

She pointed to the ceiling. 'Jesus is up there, mummy', she said.
'Is he?', I asked, smiling.
'Yes, he is', she replied, also smiling.
'Do you talk to Jesus?'.
'Yes, I do', Catherine replied.
And does Jesus speak to you?
'Yes'.
'What does he say?'.

'Love'

'He says love to you?'.

'Yes', she replied, still smiling. Then she asked me for her breakfast.

Friday, 14 November 2008

What caused this?

Research published by Cancer Research UK in June 2008 states that some experts believe Acute Lymphoblastic Leukaemia is caused by a reaction to an infection. They suggest that stress on a child's immune system can cause ALL in, obviously, extremely rare cases. Other researchers are suggesting that allergies may contribute to contracting ALL. However, researchers are still not sure what causes the disease.

This is a very different from the previous theory that electrical fields and mysterious chemicals cause ALL. When she was first diagnosed, I remember quizzing Mark about whether he could recall any risk of such things at our old house. Not really worth the effort, it seems!

It also states that we should not go overboard at protecting out children from common infections. According to the article based on the report, supposedly we should be reassured that the chance of a child developing Acute Lymphoblastic Leukaemia is 36 in 1 million.

That's ok if your child isn't one of the 36.

Being a doting parent, I always thought Catherine was one in a million. Seems I was nearly right.

Sleepy and sad

I brought Catherine home from nursery at lunchtime. Over lunch, she told me she wanted me to go and stay at nursery with her this afternoon, but then she decided she wanted to come home with me. This is not like Catherine as she normally always wants to be at 'school'.

When we got home, she sat for a while on the armchair with her teddy watching her DVD and then decided that actually she needed a nap. She is now in bed sleeping.

We wonder whether she is just very tired from the chemotherapy she received yesterday. We have been told that Methotrexate is stronger than the daily mercaptupurine she receives, so we are hoping she is just experiencing tiredness from the drugs rather than anything else (ie chicken pox).

Thursday, 13 November 2008

No spots

I am pleased to report that there is still no sign of the chicken pox virus. Catherine has been really happy today and really enjoyed nursery and seeing all her friends.

Tuesday, 11 November 2008

Chicken Pox

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.

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!

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...

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...

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.

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.

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.

Monday, 3 November 2008

Poorly - update

Catherine is feeling quite poorly today. She is quite lethargic, feels cold and has headaches. She is also getting some abdominal and leg pain and was up most of the night needing her legs and tummy rubbed. She is also starting to feel a bit warm - her temperature is 37degrees celsius. I'm hoping it doesn't turn into a fever otherwise we will need intravenous antibiotics and she will be in hospital for a few days.

We have just had her blood test results through and whilst she is quite anaemic it is still not low enough for a blood transfusion. However, her neutrophils are only 0.08 which means she is neutropenic and will be very susceptible to infection. She must feel bad because she even ASKED for the nurse to come and put her wiggly in and take blood. She also still has the annoying cough, and coughed so much this morning that she was nearly sick.

Please pray that she does not get an infection at this point. A lot of our friends have been poorly this weekend, and now we know that Catherine has no 'fighter cells' we really need some prayers. Mark and I also have colds, so we don't want to pass these on to our little one. Thankyou.

Wednesday, 29 October 2008

'Silly cough'

Catherine has been getting some aches and pains in her legs which are side effects of the steroid and one of the chemotherapy drugs. Today she asked me to carry her for a while as she had aching legs but later in the day she was running around. It is quite clear to me from watching her with other children that she doesn't have the same energy as them, but she certainly likes to try to keep up. She is also a bit more wary than she was before of what she can accomplish, and is protective of her portacath when playing (which really is good common sense on her part).

However, she has had a good day overall and has really enjoyed nursery again today. She was also pleased when her favourite community nurse turned up today to take her bloods. She was very relaxed about the process and only had a few nerves just before her portacath was accessed.

She has had an annoying cough for the past three weeks which still hasn't gone. Although this is minor, she prayed at bedtime tonight that the 'silly cough' would go away. It is really getting on her nerves now.

Tomorrow she is looking forward to another day at 'school'. Our next scheduled day at hospital is next Friday when we have the next bone marrow test and lumbar puncture.

Monday, 27 October 2008

Having fun

Catherine has had a good day today and has enjoyed lots of little fairground rides. She has also been on a trampoline and has been very cuddly in between all her activity! She is still a bit anaemic, has headaches and needs a rest at lunchtimes, but otherwise has been the most energetic I have seen her for ages. She hasn't even used her buggy to get around today and has walked a lot. She is doing really well considering all the chemotherapy she is taking.

Please continue to pray for Catherine, especially that she doesn't get any infections. I'm sure she is running on prayer power....

Saturday, 25 October 2008

The girl with the pink bandana

Catherine has had a fun time today. We went to the sealife centre and she enjoyed seeing the turtles and going on the outdoor rides. She made herself well known amongst the staff and they knew her as 'the girl with the pink bandana'. She went on every ride at least three times! It was nice to see her more confident and even going on the rides on her own. A few weeks ago she wouldn't have been able to, but some of the chemotherapy side effects from the induction phase are now out of her system. She is clearly not her old self but is better than she was.

This week we plan to take her swimming. With a portacath, she is still able to go swimming and she is really looking forward to it. She is having a few mood swings but then she is on steroids again for a few days. Hopefully she will not struggle with this for too long. At the moment she is sleeping through ok as well and we are not having to wake to feed her at all hours. However, some of the old food craving that we recognise from the last phase of steroids is starting to kick in already, so we will have to see how this goes.

She took her new medicine well the other day, although she said it was a bit lemony and 'fizzily'. After she took it, she said 'yuck'! She will be an expert on medicines by the end of this.

Thankyou for your ongoing prayers.

Thursday, 23 October 2008

'Hospital day'

We went to the hospital today for some more chemotherapy and to see the consultant. Unusually for a 'hospital day', Catherine was quite chilled and happy on the way to the hospital and was chatting about what was going to happen afterwards. However, when the consultant asked to feel her tummy, Catherine became very worried again.

The consultant was very pleased with her progress and Catherine is in good shape to continue with the chemotherapy. We now have a new chemotherapy drug which Catherine will take weekly at home. It is a pill which we can dissolve in water beforehand. Catherine will also be on steroids for a full week starting today. She will continue with her daily Mercaptapurine medicine (a chemotherapy drug) and her Septrin which she takes on Mondays and Tuesdays to prevent chest infections.

Last night, Catherine had pain in one of her legs and we were quite concerned about her. It settled down after a while and the consultant said not to worry about it.

All being well, our next hospital visit is in two weeks time when she will be having another anaesthetic and bone marrow test.

Tuesday, 21 October 2008

Dusting in pyjamas

Catherine had a huge panic today when it was time for her to have her bloods taken. It is unpleasant to see her so upset. Her favourite nurse was still on holiday and she now worries if anyone else other than her favourite nurse takes her bloods. She worried Mark today when she asked him to put in her 'wiggly' line instead. He managed to convince her that the nurse was much better at using the portacath than he was.

Otherwise she has had a good day and has been having fun making pictures by glueing and sticking different shapes onto paper. At the moment she is walking round the living room in her pyjamas dusting! What a marvellous helper!!!

We are going to the hospital on Thursday this week where we will meet with the consultant to discuss the next part of Catherine's treatment. She has now completed the induction and consolidation phases, and if her blood counts are ok, she will progress onto the next stage. She will also receive more chemotherapy through her line this Thursday and unfortunately will need to take the steroids again for a week. It is a shame as they are now just about out of her system, but we need to start them again. Thankfully it is only for a week this time so hopefully the mood swings and appetite wont be too excessive, and we wont be cooking all night?

Sometimes at the moment, Catherine either comes and has a cuddle in bed with me at night or wakes me up in the night to go and tuck her in! The problem is that Catherine gets very hot in bed and throws all her blankets off, only to get really chilly again. I also think she feels comforted when I go and tuck her in as she looks so happy when she feels 'all snuggly' again.

On Friday we have an appointment with our specialist nurse who is coming to see us and discuss future protocols for Catherine's treatment.

Please pray that the side effects of the steroids and chemotherapy will be minimal and that she will remain infection free. Please also continue to pray that the chemotherapy will be effective.

Sunday, 19 October 2008

The Madagascan periwinkle plant

Catherine is starting to show signs of becoming a bit anaemic again - she is getting tired and having the odd headache. Her blood count isn't low enough for a transfusion yet but I think she is starting to feel the effects of having less haemoglobin in her blood. This is all part of the treatment as the chemotherapy kills the good AND bad blood cells (but the good blood cells bounce back soon enough!). However, I think she will be having naps at nursery until she feels better or has another transfusion.

Despite this, Catherine has had a reasonably good day today and has been really talkative. We went to a different corps (church) today and then went for lunch afterwards. She tidied up the mugs from the living room and was very helpful but then had to go and lie down on the sofa for a while. She has also been singing today and allowed me to record some of her songs on video. One of them is really funny as she forgets the words half way through and then makes up the rest of the words. We were also talking about who looks after us. Catherine said that 'Jesus looks after mummy'. I asked Catherine where he was and she pointed into the sky and said 'Jesus is up there'. I then asked her if she prays to Jesus and she told me that she prays to him in the mornings when she wakes up. When I asked Catherine if he says anything to her she said 'he tells me to go and eat my breakfast'....

I also found out some fascinating facts this weekend. An article in a magazine called Journey by Leukaemia Care speaks about the development of leukaemia treatment over the years. It was really amazing to read that one of the chemotherapy drugs - vincristine - comes from the Madagascan periwinkle plant! How incredible is that! It also said that the first year of treatment costs in the region of £100,000. It made me feel really grateful that £100,000 should be spent on healing my little girl, and how privileged we are in this country to receive such valuable treatment.

Please pray that she continues to remain infection free and that the side effects remain minimal. She is coping well with the treatment but she gets very frustrated and fed up sometimes. It is hard to see her feeling rubbish when she was previously so bright and bouncy. Thank you.

Saturday, 18 October 2008

The kindness of 'strangers'

Hardly a day goes by that we don't have a card, letter or email from someone letting us know that they are thinking about us and praying for us. Many of these wishes come from 'strangers'. Yesterday, for example, we had a card from the Netherlands.

One of the most powerful things we have experienced over the last few months is the kindness of strangers.It has made me think about how people become so united together in difficult situations; it has also made me excited that there are so many people who keep going before God and believing in His power to do the miraculous.

I still can't believe how many people are 'praying for Catherine' on facebook. Many of these people we do not know but their compassion has prompted them to join and pray for her.

I've been told that many of these people are reading this post, so as a family we just want to say thankyou. God shows himself in the world through people like you.

Thursday, 16 October 2008

No more medicine, thanks...

Catherine has not had a good day today. She has been thoroughly fed up and miserable all day and was not impressed about going to hospital at all.

On the way to the hospital she said she had decided that she didn't want to get better because then she wouldn't need to have any more medicine. When she realised that if she didn't get better she would be too poorly to go to nursery she sat quietly and sulked.

She also decided she didn't want her portacath any more. Again, when she remembered the alternative - needles - she decided to keep her portacath.

On arrival, there was some concern that she might be anaemic again, but her bloods were fine. The procedure went well and was very quick today.

We met some new people at the hospital today and it was lovely to meet one little girl and her mother. The little girl was diagnosed with Acute Lymphoblastic Leukaemia when she was 13 months old, much younger than when Catherine was diagnosed. She is now five years old and, all being well, she will be given the 'all clear' at Christmas. I was so happy for the little girl, who has managed to get through all the treatments despite some difficulties. I was very taken by the mother's devotion to her little girl. Also when the mother had her most recent child, she thought ahead and paid £2000 for a stem-cell harvest in case her little girl would need a bone marrow transplant later. It was nice to be able to celebrate with a family coming to the end of treatment.

Wednesday, 15 October 2008

Hospital Day

I do not like this. The day before 'hospital day' is never pleasant. Catherine always asks me what we are doing tomorrow, so I try and delay answering for as long as possible. The question seems to come earlier and earlier - today she asked me as soon as we got home from nursery.

However, I can delay it no longer as it starts to get dark. Her question 'What's happening tomorrow mummy? Is it a school day?' is quickly followed by a wail of disapproval and distress as she realises it is a hospital day. She is so aware that she even notices when the hospital phones to give us her 'starvation times', so there is no way I could avoid telling her even if I thought it was right to do so.

She doesn't like the anaesthetic as it makes her feel 'wobbly' and so she worries until she has had it. She will play for a bit and then get upset because she knows it is coming. I think it is really sad that a 3-year-old should have to go through this sort of worry - I had always hoped that this was the domain of adults. However it is something we have to deal with. She cheered up a bit when she knew this was the last anaesthetic for a few weeks, but even so, I know she will be nervous all morning until the procedure at lunch time.

Please pray that the lumbar puncture and procedure goes well tomorrow. Please also pray for the other childhood cancer patients and their parents. Thank you once again.

Tuesday, 14 October 2008

Becoming technical...

Catherine is really enjoying her new pink portable DVD player. She spent some time experimenting with the control panel, volume control and the on/off switch until she knew what she was doing. She now excitedly uses it herself. I think she also likes the fact that if we are cooking in the kitchen, she can come and sit up the table with her DVD player rather than being on her own in the living room. Just before bed, she put on her Nursery Rhymes video and sang along to all the songs. It was great to hear her sing and she really enjoyed it.

She had some more bloods taken today and was still nervous. She had a different community nurse today as her usual nurse was on holiday. This was more difficult for her as she has built up a good rapport with her usual nurse.

Otherwise, Catherine has had a good day despite her cold. She hasn't felt unwell today. By this evening she had become much brighter again and spent ages chatting to me about going on trains and going to the seaside. She is still on her oral chemotherapy and has one more lumbar puncture on Thursday so that the hospital can administer some more chemotherapy directly into the spinal fluid. After Thursday, we start on the next part of the treatment plan.

Monday, 13 October 2008

Today

Catherine was sick once this morning and had a bit of a headache. We phoned up the hospital and they suggested that she probably overdid things the last couple of days. The problem with Catherine, though, is that she is so determined. Either she has overdone things or she may have an infection looming. She already has a bad cough which has been getting on her nerves, but we were all surprised when she was sick today. The hospital said we need to keep an eye on her temperature and make sure she drinks fluids. If her temperature doesn't spike she should be ok and avoid spending time in hospital.

As we had a day off today, we took Catherine to ToysRus. It is great going in school time as there is hardly anyone there so the risk of infection is lower. She is now the proud owner of her first watch, a Fifi scooter and - the reason we went there - a pink portable DVD player. Now she can sit and watch a DVD in bed if she doesn't feel up to doing much else. She enjoyed wandering round the shop and looking at all the toys.

We also received a lovely gift today in the post from Australia! A friend of Catherine's Grandpa sent lots of lovely cards made by lots of children who are praying for Catherine in Australia. Another lady sent her a collection of little hats that she had owned from childhood. When she heard about Catherine, she decided to send them to her. They are a lovely gift, and Catherine enjoyed having her photo taken in each of them. I will try and upload them later.

Thankyou for your ongoing prayers.

Sunday, 12 October 2008

A blank sheet

At church today we were encouraged to draw a picture of something we are anxious about. I found that I couldn't think of anything. I found this quite startling. If I was someone else looking in to my situation, I would expect an undercurrent of anxiety, but I can honestly say I am not anxious. How can I not be anxious in the situation in which we find ourselves? Have I completely lost it? Am I being totally unrealistic?

This is one of the biggest situations I have faced in my life and I couldn't even muster enough anxiety to think of something to draw! The discussion time was a bit embarrassing as I had a blank sheet of paper.

Mark sometimes jokingly says that I am like a swan, serene and calm on the surface but that my feet are paddling quickly underwater trying to keep everything afloat (probably like a lot of mothers). But my feet aren't paddling. I can only give the glory to God for this. I can only thank the people who have prayed for me, for Mark and for Catherine. I have taken so much comfort in God these past few weeks. So many positive words have been given concerning Catherine that it is difficult to become anxious. Yes, I do feel anxious when Catherine is having an unpleasant treatment or is distressed, but generally, when nothing is happening at that moment, I am at peace. I just thank God for this wonderful demonstration of His faithfulness in my life and for the peace He gives which really does pass all understanding.

Thankyou for your prayers. I want to encourage you that God hears them and is answering.

Friday, 10 October 2008

Wearing curtains?

We had an interesting night's sleep last night as Catherine decided she wanted to come into bed for a cuddle. This was very cute, but as the night progressed she took over the majority of the bed (diagonally) and Mark ended up going to sleep in the spare room. Also, she woke me up a few times stroking my face. Another cute thing to do but it has resulted in a tired mummy, especially after yesterday's hospital visit.

The hospital visit went as well as could be expected. Catherine doesn't like having the anaesthetic for the lumbar puncture because it makes her feel 'wobbly' afterwards, so she was worried about this all morning. However, she was very happy using the anaesthetic spray instead of the 'magic' cream on her portacath, so I think we will use it the next time. She is already losing the weight she gained on the steroids and is continuing to walk and run about more. This is very good news.

Catherine is also working out that she can have fun with her new hair. I was carrying her earlier and she had a naughty sparkle in her eyes. Seconds later, she had put her 'hair' on my head......back to front! This meant I couldn't see where I was going and also that she was in a fit of giggles which made it much harder to keep hold of her: 'Mummy it looks like you're wearing curtains' she said as she parted the 'hair' to see my face. Typically, as is always the case with Catherine, this had to be a day when we are attending a big conference. She is so funny.

Please continue to pray that she escapes any infections, particularly viruses like chicken pox and measles which would mean we need to go into hospital immediately. Thankyou.

Wednesday, 8 October 2008

Normal naughtiness

This morning I spent twenty minutes chasing a giggling Catherine around the room trying to get her ready to go out! Now the steroids are coming out of my daughter's system, I am starting to see her great personality again, even it takes ages to get her ready to go anywhere.

It made me think about all those times we as parents get frustrated and even annoyed at some of our children's behaviour. I'm sure other parents of small children can relate to how their antics are at some times really inconvenient. How bizarre it seems, then, that I should be so happy that she was doing something that would have frustrated me before her illness. But I was happy, and when she ran and hid herself in her bed rather than get dressed, I was quite happy to go in and see a heap of bedclothes shaking with her laughter.

Catherine also went to the park today with her friend and they played together on the swings and the climbing frames. This is the first time Catherine has attempted to climb anything for ages, so it was good to see. However, she fell and grazed her knee and for the first time I felt like an overprotective mother! Thoughts that raced through my mind were 'Do I have any anaesthetic cream at home? I don't want that to get infected' and 'How many platelets does she have in her blood if it starts to bleed and needs to clot?'. Daft things that wouldn't have bothered me at all in the past, but seem all the more unknown because of her condition. Catherine, on the other hand, just got up, dusted herself down, and got on with the important business of playing.

Tomorrow we are going to the hospital for another lumbar punch and more chemotherapy. Catherine will be having an anaesthetic again and will not be able to eat from 5am tomorrow morning until the procedure is complete (after 10am). She is quite nervous about going to hospital tomorrow because she says the anaesthetic 'makes her feel wobbly afterwards'. She doesn't like the feeling and doesn't like the anaesthetic cream they put on her portacath. She said she would like to try the spray instead, so maybe we will have a try at this tomorrow.

Tuesday, 7 October 2008

'I don't want to go to bed'

At 7pm this evening Catherine said 'I don't want to go to bed' and smiled mischieviously. Once I managed to get her in the bed, she actually asked for prayers AND her bedtime song which we sang whilst she bounced her teddy bear up and down. She was still awake by the end.

This is my Catherine.

Before diagnosis she would never want to go to bed and she would always want her bedtime song, probably because it meant she could stay awake a bit longer. Since treatment began she would put herself to bed and then not want any singing because she was too tired. It has been so nice to see some of her old energy and fun now that the first phase of difficult chemo is over.

However, surprisingly today we found out that her neutrophil count (the part that helps fight infection) has gone right down again from over 12 to only 1.2 in just a week. This is due to the oral and intrathecal (spinal fluid) chemotherapy. This is not unusual and to be expected, but we were surprised that it had gone down so drastically so quickly. This means that we need prayers to protect her from infection again.

Catherine's blood test went really well today. She still doesn't like having the cream put over her portacath to numb the skin, but taking the bloods was easy and she didn't worry at all! The nurse commented on how good she was. I think Catherine was happy because she knew she would get a purple balloon afterwards! She also likes the nurse who she calls 'that nice lady'.

This afternoon, I told Catherine that we had some good news from the hospital. She gave me a huge smile and then ran off to play with her friend Hannah. I am glad that, at this moment in time, she is feeling so much better in herself. It is lovely to see.

Celebrations and thanks

Catherine's MRD results are back and she is now officially 'low risk'!!!!

This is the wonderful news we have all been waiting for and means she can continue on this level of treatment. It also means that her prognosis continues to be very good.

Catherine will still need to continue the full programme of treatment (2 years) and is still at risk of infection and the side effects of the treatment, but this is the BEST POSSIBLE NEWS at this stage.

Thankyou SO MUCH for your prayers for Catherine. You cannot imagine how happy we are that she will not need a more intensive treatment programme. Dear pray-ers, please spend a moment thanking God for this news and for His love and goodness. He is working mini-miracles every day in her life.

Thankyou everyone and thankyou God!

I will rise and bless you Lord.
Lift my hands and shout Your praise,
I will tell of the marvellous things you have done
And declare Your faithfulness.
I will rise and bless You Lord
Lift You high and dance for joy.
Oh nothing can separate me
From your wonderful, wonderful love.

(Diane Fung, Songs of Fellowship 1: 275)

Monday, 6 October 2008

Still no news

We are still waiting for Catherine's MRD test results.

On Saturday we finished the steroid treatment. We have already seen a marked improvement in Catherine's mobility and she even made an attempt at running today. She had a busy day at nursery and enjoyed playing at being the doctor with her friends. She also tried to make the nursery leader better! We think she was quite active and pushed herself today because she put herself to bed at 5.30pm.

We were also really pleased today that Catherine actually left some of her lunch on her plate! This sounds strange coming from her parents, but on the steroids she would usually eat a huge adult sized meal at lunch time. Her moods are also starting to stabilize and we are now continuing with her second chemotherapy phase.

Please continue to pray that the MRD results are good and that Catherine can continue on this regimen of treatment. Tomorrow we are taking Catherine for another blood test in preparation for her next lumbar punch and chemotherapy on Thursday.

Saturday, 4 October 2008

A quiet day

Catherine has had a restful day today at home, colouring and doing her letters and watching Mary Poppins again. We had fun spelling words, and she enjoyed spelling her name with her magnetic letters. She also did a little bit of low-energy dancing and has been singing along to the songs in Mary Poppins, especially her 'tidy-up song' that they use at nursery. She now knows most of her alphabet and keeps pushing to have a go at writing. She told me today that she is going to have her portacath until she is five years old and now seems ok about it.

Please pray that Catherine doesn't get my virus, otherwise we will all be in hospital for a few days next week. Thank you.

Friday, 3 October 2008

Still no news

We are still waiting for the MRD results which are now likely to be with us next week.

However, we do have some more answered prayer! All along we have been praying that Catherine has minimal side effects from the treatment. Not only has she not had any infections in the last block of high dose chemotherapy, but she is also walking about sooner than expected. The Consultant told us that the steroids are responsible for Catherine having been less mobile as they cause temporary muscle weakness, but the Consultant was surprised when I explained that Catherine was already walking much more. Usually it would take longer to become mobile again, but it seems that Catherine has jumped the gun!

Also, we received word of her blood count and were amazed to see her neutrophils (part of the blood that fights infection) had increased from 5 to 12.5! This is a huge jump considering that most children her age only have a reading of 8 neutrophils. It seems that the steroids speed up the production of the good cells, so currently Catherine has an immune system. Which is perfectly timed as I have got a virus! Steroids or answered prayer or both? I will leave this to you to decide, but yet again this news is perfect timing.

Catherine has had quite a good day today although she was a bit tired so only went to nursery this morning. This afternoon we watched Mary Poppins and Alice in Wonderland on the TV instead, and Catherine now has 'rainbow' coloured fingernails and toenails. She seems to enjoy these little pamper sessions, and through lots of donations of nailpolish, she now has a vast array of colours to choose from.

Her hairloss has come to a bit of a standstill and she still has half her hair left. Either this will go gradually over the next few weeks or she will actually keep some of her hair. She quite likes wearing her new 'hair', but other times can't be bothered and one of us will end up carrying it around. Also, now that we are reducing the steroids, Catherine's eating is calming down. She doesn't snack in the night now and only wakes a couple of times.

I think Catherine is starting to realise that the treatment may take some time. She asked at the hospital yesterday when they were going to take out her portacath. Mark said it would happen when she was five. 'I don't want to be five, then', said Catherine crossly, 'And I don't want to be four either. I'm going to stay three'. Today she asked me how they were going to take it out. I explained that she would have a 'special sleep' and then it would be gone when she woke up. 'Will it be when I am five?' she asked again, and I said 'yes'. 'Hmm. I think I will stay three', she said again, and then snuggled down to sleep.

Thursday, 2 October 2008

Still waiting for the result

Whilst an analysis of Catherine's blood shows that she has acheived first remission, the MRD result, the most important result, is still outstanding.

15% of children who achieve first remission in their blood (ie no leukaemia cells are detected) can still have problems with the DNA (This is detected by the sensitive MRD test). However 85% of children who achieve a first remission in their blood can continue on the standard treatment.

If the MRD result was poor, it would mean that the leukaemia is highly likely to return on standard treatment. The treatment would therefore have to be much more intense with the risk of greater side effects and infection.

Until we have these results, the Consultant will not be able to confirm that Catherine has had a very good response to treatment so far.

We will find out the MRD result by telephone in the next few days. The Consultant has explained the course of treatment available in either circumstance. Obviously if the MRD result was poor, the chemotherapy regime would be much more intense and longer. However, we have a Great Big God, and the likelihood is that Catherine is in a low risk group and will therefore be able to continue on a standard treatment regimen.

Let us thank God for His goodness to Catherine so far in her treatment. As Catherine would sing 'Our God is a Great Big God, and He holds us in His hands'.

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.