Friday, 30 January 2009

Back home

We are now back from the hospital after Catherine's blood transfusion which, I'm pleased to report, went well. Catherine watched both Mary Poppins and half of Cinderella and then played some games of dominos with mummy and dad. It passed the time well for her, and apart from the removal of the large sticky dressing which they put over her portacath when it is accessed, she was quite chilled about the whole thing. The nurses were all lovely as usual, and I think they've got used to us visiting now!

We will need to go back to hospital on Sunday for another blood test. I also expect we will need a transfusion of platelets shortly, as her platelets have taken the biggest hit so far in the treatment. We just need to keep a look-out for bleeding and bruising.

We do not know why Catherine's blood count dropped so dramatically with the treatment, but hopefully this blood will last her for longer than two days!

Thursday, 29 January 2009

??????

The hospital has just phoned, and Catherine's Haemoglobin is now 7.4. Her other counts (neutrophils, platelets, white blood counts) have also gone down since lunchtime!

We will now need to take her to hospital tomorrow morning for another 4 hour blood transfusion. This is so surprising, as she only had one on Tuesday. The nurses think it is very unusual that her counts have gone down so fast. All we can hope is that the chemotherapy is just really effective in Catherine's body. They doubt it is anything more serious than the effects of the chemotherapy, but it IS a big jump.

Please pray for protection for Catherine at this time and that the blood transfusion goes well tomorrow. She isn't going to be impressed about this unscheduled visit to the hospital. Her portable DVD player will be well used by the end of this phase!

Wierd results

We've just been up the hospital again (Thursday afternoon) because Catherine's blood results today were a bit odd - her haemoglobin is supposedly just 7.5 after a blood transfusion on Tuesday! I was genuinely shocked when they said this was her result, as it was expected to be about 9 at the lowest. Her neutrophils are down as expected, and her White Blood Count is lower than it has ever been. Cytarabine is clearly a tough cookie of a chemo drug.

This haemoglobin result s very odd, and the oncology nurse said it was very unlikely to have fallen so quickly since Tuesday, so they want another blood test to see if the original was incorrect. We may need to go back later for a blood transfusion if her bloods really have fallen so quickly, either this evening or tomorrow morning.

Mark's not been feeling well today either, so these results were not good timing. Catherine is ok in herself, apart from headaches which could be caused from the Cytabarine, and she is a bit tired and miserable about having to go back to hospital when it was so unexpected.

Tuesday, 27 January 2009

Party planning insomniac!

Catherine went into hospital today with white fingernails and came out with almost normal coloured nails again (despite the strange ridges caused by chemotherapy!). She was very anaemic, and the doctors were surprised that she was still upright and awake. They said that often children who have regular bouts of anaemia manage to cope on less haemoglobin over time. I think Catherine fits beautifully into this category. Bouncing like a tigger indeed...

Today we spent time at hospital having a blood transfusion. This is the fourth blood transfusion Catherine has had during her treatment, which just shows how valuable blood donors are.

Her back is still sore from the lumbar puncture yesterday and she has had a few headaches. Her appetite has also decreased quite a bit.

She was really tired this evening and had a nap, only to wake up and be all bouncy and talkative and excitable. We managed to get her to sleep at 10pm! Blood transfusions always do this to her. She has now almost planned all of her fourth birthday party this evening, so obviously had too much energy to burn off. It was nice to see her so enthusiastic, though.

Mark is not feeling too well today and I fell asleep for a few hours this evening while Catherine was having her nap. We don't need any germs at the moment! Catherine does not need them either. Catherine's neutrophils are ok at the moment, but are due to go down in the next couple of days. Thankyou for your prayers. It would be good to get through this block without an infection.

Monday, 26 January 2009

A very mixed day

Catherine has had a very mixed day today. It started off well for her and she felt fine on the way to hospital. However, both Mark and I felt uneasy today about her having her lumbar puncture and general anaesthetic which was unusual in itself. We both felt a real urge to pray when we took her into the theatre this morning to have her 'wobbly medicine'.

Catherine was in theatre for an unusually long time today, and we started to feel concerned about her. The nurses reassured us, but we were still worried. A while later Catherine was back on the ward, but the procedure had been difficult. They had to make a number of attempts to do the lumbar puncture, so they had to give her more general anaesthetic than usual. When I saw her, her breathing was very raspy, but they said it would clear when she came round from the anaesthetic. She woke up extremely grumpy, but after some food, and her Cytarabine, she was feeling better and wanted to go home.



She is currently very anaemic, but at lunch time was leaping around 'like a tigger' with her friends. She asked to go to nursery, so we said that it would be ok. However, once she got home from nursery, she said she had had a headache and so missed me. She has also had some back pain this evening because the lumbar puncture was so difficult for her today. It is the first time we have ever had a problem with this procedure. She tried to distract herself by doing some crafts but eventually gave up and decided she would have some painkiller after all.



This evening at bedtime, she read one of her simple stories to me and then didn't go to sleep for ages because she wanted to spell all her friends' names out loud to me. She is mad about language and words. I'm worried she will end up an avid reader like her dad, and then we will have no room for anything in the house except for bookcases!!!



Tomorrow we need to go to hospital for a four hour blood transfusion. Please pray that this goes smoothly. Please also continue to pray that she doesn't have any side effects or infections. Catherine will probably be off nursery at the end of the week, as her blood counts will be extremely low. This block of chemotherapy has meant that she has her lowest platelet count so far (only 84) although they do not transfuse platelets until the patient has 10 or less.

Sunday, 25 January 2009

Train travel

Yesterday was a very special day. We went on the train (Catherine's favourite) and then ate in a restaurant together. She decided not to wear her hair or a hat in the restaurant, and she was completely spoilt! The waiter brought her a little biscuit, and then another lady came over and spoke to us and said she would pray for Catherine. Catherine also received a heart shaped chocolate from another lady! People were very kind.

Despite being anaemic, and feeling a bit nauseous this morning, Catherine has had a good day today as well. Tomorrow we are at hospital for another lumbar puncture, intrathecal chemotherapy and more Cytarabine. She may also need a blood transfusion tomorrow, as the chemotherapy is due to really hit her blood counts from tomorrow onwards. Thankfully, I've just about finished my work due in this week, so if she needs lots of TLC I will be able to spend time with her. This is the last week of intense chemotherapy. I will then be able to explain more about the maintenance phase.

Please pray that tomorrow goes well, that she doesn't get any side effects or infections and that the leukaemia never returns. We know your prayers have had a huge impact on her healing.

Saturday, 24 January 2009

One week to go

We are through another week of the intensive block and have only one more week until we reach the maintenance period in Catherine's treatment. After this week, there will be less hospital visits and hopefully Catherine will be on to a more even keel as we continue the next year or so of treatment.

The other day, I marvelled as I watched Catherine running round with her friends, leading them in a game of chase. She was as fast as them. I just find this so amazing when I consider how much chemo she is on at the moment. Her blood counts have gone down as expected, and she will probably need a blood transfusion next week, but she is still energetic and excited about being able to go for a train ride today. Next week we expect her neutrophils to bomb, and we may be at home for a few days to avoid the risk of infection as much as possible, but for now she is looking remarkably good for everything she has been through. God has been so good to her.

Yesterday, she decided she was going to lead an activity at nursery. We have some pebbles at home, and she counted out nine before her lesson; one for each of her friends. At school she organized a painting activity which involved painting a stone. She helped her friends get into their aprons, and they all ended up with some pretty painted stones. I just hope the nursery leaders didn't mind as she took over!!! Maybe it gave them a break for the morning.

The last week or so, I've been thinking back over the experience so far. It has been far from easy but we have managed to get through. It is strange how going to hospital ends up becoming 'normal' and how even something as demanding as leukaemia treatment can become part of life. I made some friends laugh the other day when I spoke about how I was reading a book with pictures of lots of children. As I looked at the photos, I found myself surprised that they all had hair!!!! How bizarre. Normality has become being with children without hair!!! It will be odd when Catherine has hair again. I will probably be very confused...

Wednesday, 21 January 2009

Sleepless and hairless

Catherine had a good day today but is having trouble sleeping tonight and is a bit warm. I have just checked her temperature, and whilst it is higher than usual, it is not at fever level. She hasn't eaten much today but has just had half a banana for her midnight snack!

She now has absolutely no hair. This is the first time in treatment that she has lost her hair completely, and her head is so silky smooth. I keep stroking her head but she doesn't seem to mind! The other day she said what short hair she has now. She added that soon she will need a haircut, before laughing hysterically as she knows her hair has 'disappeared'. Her little friends have now noticed the absence of hair and have made innocent comments. It is odd that, even though she only had about a centimetre of hair before this block of chemo, her friends have really realised what has happened this time! She still doesn't feel any need to wear her wig, and it is a challenge at the moment trying to get her to wear a wooly hat. She enjoys being hair and hat free.

Monday, 19 January 2009

Today's treatment

Today Catherine was in hospital for a general anaesthetic , lumbar punch and chemotherapy into her spinal fluid. She then received four hours of fluid (through a drip) followed by two new drugs for the first time.

She had a really good day, and actually enjoyed having her 'wobbly medicine' (anaesthetic) because she didn't need a plaster on her back afterwards! She worries more about plasters than pain! She was also very patient whilst she had her chemotherapy.

She has started Cytarabine, which is one of the drugs used to almost reprogramme Catherine's DNA so that her bone marrow will not produce leukaemia cells again (I might not be technically correct, but hopefully this gives some idea of what happens?!). This is a vital drug but carries the risk of some side effects, including the very small risk long-term of secondary cancer elsewhere in the body. Please pray that she does not get any secondary cancers or leukaemias.

Please pray that she doesn't get any side effects or infections. These drugs are very potent and toxic but fantastic at ensuring the leukaemia does not return. Please pray that these drugs work really effectively for Catherine so that she will never need to receive treatment for cancer again. Thankyou.

Friday, 16 January 2009

Half way through the intensive block

We had a good day today. Catherine is currently putting all the drawings and colourings and 'writings' that we have done this week into a scrapbook. We have done so many that I thought it would be an easier way to store all her works of art. The good news is that she now has neutrophils, so we can go out somewhere tomorrow and it will make Sunday much easier.

Next week is likely to be more intense than this week. We have another lumbar punch and a new chemotherapy drug due on Monday, and will be in hospital all day. This chemotherapy drug, Cytabarine, means Catherine needs four hours on a drip before she can have the drug. The following days, Catherine will need to receive chemotherapy every day through her portacath and 'wiggly'. Hopefully, she will be able to go to nursery for at least a couple of days next week. She is looking forward to seeing her friends.

Two more weeks of the intensive block to go! Then it will be onto maintenance.

Thursday, 15 January 2009

Just waiting for neutrophils...

Catherine is feeling a lot brighter today and even asked about nursery, which definitely means she is feeling better. Her temperature has been fine today, but we still need to wait until she has some neutrophils before she goes back to her nursery. Instead of going to school, she spent a couple of hours pretending she was there and being either the nursery leader or 'a sister'. She even filled out the information sheets at the end of the day.

I had a bit of a bad day yesterday, but I realise that I am just a bit tired and feeling worn out. I put Catherine to bed at 7.30pm and woke up on her bed at 9.45pm! I feel better today. It has been a bit of an emotional rollercoaster being on 'fever watch', especially because I know Catherine would NOT want to spend five days in hospital.

Tuesday, 13 January 2009

General knowledge quiz?

'Mummy, where do clothes/ clouds/ chickens/ ________ (fill in the blank!) come from', was the theme of today, and greatly tested mummy's general knowledge.

Catherine has been a bit better today, and has used the time at home wisely: by asking me heaps of questions about life, the universe and everything! She wants to know how everything works and what it all means. I'm only hoping I can answer all her questions. Thank goodness for the internet if I get stuck.

She has also felt well enough to colour, have her toenails painted and have an imaginary tea party today, which was fun. She is still coughing and sniffling, and still looks very pale, but at least she is having a bit of a giggle today. I have thoroughly enjoyed having the opportunity to chat with her. I suppose we do get some very good quality time together during these treatment times. I value it, despite the circumstances. It also means I get to do numbers and letters with her, which she enjoys. She keeps writing her name on everything, and has worked out what it means if things are 'similar'.

She gets so excited and constantly wants to learn more. Yesterday, I asked her if she knew where butterflies came from. 'Well, mummy', she said, as if she was an authority on the subject. 'They start as a caterpillar and go into a cocoon and come out and are butterflies'. I didn't even know she knew this! She has a mind like a sponge... I wish I could learn things as easily as her.

We are about half way through this intensive block, now. Her hair is almost completely gone. It has rubbed off at the back and sides from when she is sleeping, and she has some dark strands left on top of her head. We knew this treatment was strong and that her hair would completely go at some point.

I am quite glad that she will only need one of these blocks, as it is exhausting for all of us. We will get her through this, and I am looking forward to seeing her old energy return (although I am going to have to learn how to cope with a physically active child again!). On Monday, one of my friends said she thinks Catherine will end up being a doctor or part of the medical profession when she grows up. She looked very fine in the nurses uniform she wore at her friend's house at the weekend, so you never know...

Monday, 12 January 2009

Coughing but cool!

Catherine went to bed hot and has just woken up cool!

Great is thy faithfulness!
Great is thy faithfulness!
Morning by morning new mercies I see;
All I have needed thy hand hath provided;
Great is thy faithfulness, Lord, unto me!

Thanking God who heard our prayers

Catherine has a temperature (again!)

Catherine's neutrophils, which fight infection, are now 0.08 (which means she doesn't really have any). She has a temperature, but thankfully this has not gone any higher than 38 degrees. She also has a bit of an upset tummy and a cough and looks rather pale although she has plenty of haemoglobin (she is not anaemic). She said she 'doesn't feel good' today so we have been at home monitoring her temperature, giving her cuddles and trying to give her lots of comfort. We were awake a lot last night, as Catherine started to feel more unwell.

She is, however, still eating and drinking well, and found she was able to take part in some colouring and dot-to-dot puzzles this afternoon.

Please pray that her temperature does not go higher than 38 degrees and that she does not have an infection. If her temperature hits 38 degrees we need to alert the hospital. If it reaches 38.5 we will need to have IV antibiotics which will mean a hospital stay for us all. Thank you for your prayers.

Saturday, 10 January 2009

'I have a sore port, mummy'

Our little girl was awake a lot last night and she complained of having a 'sore port'. The port is her portacath, a titanium device under her skin, which is the way in which her medicines are given and bloods are taken. She is also very tired today and just want to sit on our laps. We spoke to Carol, our community nurse, today and she came and took some bloods. She said Catherine's port did not look infected but was a bit bruised which could make it feel tender and sore. We are now awaiting her blood counts. They will be checked for anaemia and any sign of an early infection.

She has been talking a lot about going on holiday to the countryside camping! She also would like to go somewhere where she can make 'sand prints with my feet in the sand'. We are looking to go away somewhere after this block of intensive treatment. I think it will really benefit her, as she has not really been able to go far at all for months due to the risk of picking up an infection. We can just about get away with car journeys to open spaces or empty(ish) museums, but public transport is definitely out of the question, which limits opportunities for the family.

Please pray that her port does not get infected and that her tiredness is only due to the drop in her blood count caused by the treatment. Thankyou.

Thursday, 8 January 2009

Feeling 'fragile'

Catherine is really tired and pale today and told me she feels 'fragile'. I thought she might be a bit like this, because this morning she asked if I would bring her painkiller to nursery if she felt pain at all. She has had no pain but just feels run down.

She has been very cuddly since nursery, doesn't want to play and said she has been feeling tired all day. She is looking very pale and has a slight cough, but there are no other symptoms. We assume she is just low on Haemoglobin, but we're going to ask for a blood test tomorrow to check. She has been doing so well on this intensive block, but was really pleased to go to bed this evening with her favourite teddy.

Please pray that God will continue to sustain her and give her strength during this phase. If it is just that she is a bit anaemic, she will probably just need another blood transfusion. I wonder whether I may be at home with her tomorrow. We've agreed with Catherine that we will see how she feels in the morning.

Wednesday, 7 January 2009

Animal Carnival!

Catherine had a good day at school today and got her friends to dress up in animal costumes! It seems that she had seen 'The Carnival of the Animals' on her ballet DVD, and decided to encourage the other children to take part in the ballet. I believe there was one lion and an angel (!) in her ballet (maybe they were short of animal costumes...). The nursery staff thought this was very funny.

After school she was very tired and lethargic and ended up having cuddles on my lap until bedtime. She is coping well with her treatment but is now getting more tired (despite an additional afternoon nap) and her moods are up and down because she is on the steroids again.

Please continue to pray against side effects and infections. Thankyou.

Tuesday, 6 January 2009

Fed up of medicines

Despite enjoying her first day back at school today, Catherine was really miserable when she came home. She wailed all the way home about having to put her coat on, and then sulked in her bed and refused her medicine! This was a bit odd for our little girl who generally just takes her medicines, and although I think she was feeling tired (which always makes things feel worse), I decided to quiz her a bit about what was wrong.

Basically, she is fed up of taking all the medicines. She is now back on 3-4 medicines a day, and has really had enough of having to take any more medicine. She was also a bit concerned that if she has her portacath removed at the end of treatment, 'they might put medicine in my hands and feet again' (she remembers her earlier needle experience, when she had five needles in one afternoon because they couldn't get a decent vein). After explaining that the medicines were not forever, which she didn't believe, she calmed down enough to get out of bed and come for a cuddle in the kitchen. Poor little love. Can't blame her really, though. However, she really enjoyed this evening when daddy suggested I have my medicine in a syringe. Catherine was able to give me my medicine in a syringe which she found good fun. The things I do for my child...

Monday, 5 January 2009

Randomisation results

Today, Catherine was randomised. This means that her treatment was decided randomly: the options were either one or two blocks of intensive chemotherapy. It was confirmed again today that Catherine has a low risk of relapse, as her MRD results were negative. This is great news and meant that she was able to be randomised.

She will only have one block of intense chemotherapy - the one we are currently experiencing. The Consultant was extremely pleased for Catherine and said she was 'fortunate' to only have one dose of intensive chemotherapy.

This means that, hopefully, we will be over the worst of the treatment by March. If all goes completely to plan, we will stop her intensive treatment just before we are given the 'brown envelope' on February 5th (a few of you will know what this means, although it has nothing to do with her treatment!!!).

At the beginning, when we had only known about Catherine's diagnosis for two months, both Mark and I felt strongly that Catherine would be low risk and have only one intensive block of chemotherapy. This is the case.

The current trial into ALL is looking to stop children from being overtreated with chemotherapy. Studies suggest that those who are doing well on treatment only need one intensive block of chemotherapy. Too much chemotherapy can cause greater risk of side effects. Too little chemotherapy can cause a greater risk of relapse.

Catherine had a good day today and was a very patient patient (!) considering the hospital had a few doctors who were off sick. Catherine is now looking forward to going back to school after the holidays. We still need to be careful, though, as she will become at greater risk of infection over the next couple of weeks, and will receive a very strong dose of a new (to Catherine) chemotherapy drug in a fortnight.

God continues to work amazingly in Catherine's life. Please continue to pray that the treatment remains effective and that leukaemia is a thing of the past for this little girl. We believe your prayers have made this happen. Thankyou.

Sunday, 4 January 2009

Tomorrow's big day

Tomorrow we are going to the hospital to find out about randomisation. As long as the latest MRD results are very low risk, which we believe they will be, we will be either given one or two intensive blocks of treatment. This is decided randomly, so please pray that Catherine is given the right amount of treatment to ensure that the leukaemia never returns to her body. We will also be having more chemotherapy tomorrow.

Saturday, 3 January 2009

Fed up and tired

The last couple of days, Catherine has started to feel the effects of the intensive treatment. The first thing to change was that she became more clingy and moody, despite not being on steroids. She is waking up a bit at night times and is generally a bit out of sorts. She has also taken to having a nap in the afternoons, which is why I am writing this now! We had her bloods taken again today, but we imagine that her HB levels are now dropping which accounts for the tiredness. She is ok, but is just a bit fed up really. We will be having more Doxorubicin and Vincristine on Monday at the hospital, which should again knock her blood counts.

Please pray that she will start to feel a bit better and not be so fed up. It is a shame when she feels like this because she can't really work out why she feels the way she does. Thank you for all your emails and e-cards to Catherine's email address. There was a nice e-card yesterday with a snowman which made her smile.

catherineisgreat88@rocketmail.com