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'.