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.