Tuesday, 26 May 2009

Legoland and chicken pox

Today, we had a great trip to Legoland! Catherine and her friend had a fantastic time going on the rides and playing in the water activities. The next few days we are taking some time out with Catherine and some friends and will probably not have internet access, but I will update everyone when we get back.

Unfortunately, even more of her friends are coming down with chicken pox so please can you pray for protection for Catherine at this time. Miraculously she has managed to avoid it so far, but she still needs your prayers as nearly everyone she knows has caught the virus in the past few weeks. Thankyou

Sunday, 24 May 2009

Saturday, 23 May 2009

Much better

Catherine is much better today and so she was able to go to the park for a friend's birthday. She still has a very low immune system, but the virus just seems to have disappeared. You wouldn't think she had been poorly. Praise God!

Friday, 22 May 2009

2 Corinthians 4:8

I believe that bravery awards for children going through chemotherapy and radiotherapy treatment are a fantastic idea, although sometimes I think that an endurance award would be more appropriate! Catherine has been brave in her treatment so far but today I saw bravery on a greater scale.

When I told her that she had to go and have another two injections, she was obviously quite distressed and upset for a short while but composed herself so that we could get ready and make the journey to the hospital. We entered the treatment room and she was fine. A bit nervous but otherwise ok. When the nurse arrived and she saw the two needles she was very afraid.

It made matters worse when she had the first injection because it was very painful. She cried a great deal and it was clearly very difficult for her. I tried to comfort her as much as possible, but I could see she was having a rough time. The problem was that there were two injections, not just the one. For a split second, I wondered how on earth we would convince her to have the second injection considering the pain she had just felt. But slowly she turned her body round, and in floods of tears offered the other arm. That was it for me. I really had to focus on getting her through it otherwise I would have been in floods of tears with her. She stoicly sat through the ordeal again. I glanced across at Mark and he was also amazed at her courage.

During the walk home, she hugged me all the way with her face pressed tight against mine. We celebrated the end of the day with a chinese take-away. Catherine enjoyed a big bowl of rice and was allowed to watch some 'daddy programmes' (In our house we either have Catherine programmes - CBeebies - or Daddy programmes - anything other than CBeebies).

My daughter is as tough as they come.

Today, she is my hero.

ZIG needed

The blood test results show that Catherine has no chicken pox antibodies left in her blood which means that this afternoon she will be having two needles of ZIG injected - one in each arm! Our specialist nurse has asked, half-jokingly, if we could go after she finishes her shift, because she gave the last injections to Catherine last time and is concerned that Catherine will start to hate her!!!

ZIG is a blood product that contains high levels of chicken pox antibodies. ZIG causes chicken pox infection to be less severe. In some cases, ZIG may help prevent infection.

Otherwise, Catherine is steadily improving, and I don't think she has chicken pox but another virus due to her low neutrophils. So this is good news, but now we have to prevent it happening in a couple of weeks time with more ZIG and lots of prayer!

Thankyou for praying.

Thursday, 21 May 2009

Lady in waiting

We came home from the hospital this afternoon and are now waiting to find out whether Catherine has any chickenpox antibodies and whether they can identify her viral infection. She doesn't have a temperature, so they were happy to let her come home and give her some oral antibiotics for now. She has also been given a different painkiller which is really effective and has made her feel much more comfortable. So we've had a good evening together, all three of us cuddling up on the sofa. Normally Catherine would be in bed for 7.30pm and we would be working on essays, so it has actually turned into an unexpected family time for us all. And because the painkiller is working, she is no longer upset and tearful and is enjoying the cuddle time. We even got to watch a programme on TV which was located a few miles down the road from our new home, which was quite exciting! So a silver lining in the middle of a cloud.

We are praying that Catherine will be feeling much better tomorrow.

Going for tests in hospital

The test results are in, and Catherine is not anaemic but has hardly any immune system. Also, three of her friends have now come down with chicken pox. The hospital has asked us to go in for tests to see whether she has any chicken pox antibodies in her blood from her last injection and also to give her a good check-up as she is definitely not well. The hospital is concerned that she is brewing the virus.

She was up for most of this morning and did a bit of colouring with me but then put herself back to bed. We are very concerned for her at this time. Prayers would be very welcome.

Catherine is not well

Last night Catherine had a really bad earache and this morning she is feeling a bit nauseous. She also looks like she might be anaemic as her fingernails are white and she slept in until 8.45am this morning, which is extremely unusual! Last time her blood counts dropped quickly, she had a bad earache and was very tired, so we are hoping that this is all that is wrong. At the moment, she is in her PJ's on the sofa with a hot water bottle.

The hospital said that one of the first signs of chicken pox for Catherine would most likely be vomiting with a temperature. The community nurse is coming shortly to check Catherine's bloods to see whether it is because her counts are low.

Please pray that this is not the beginning of chicken pox and that there is no infection brewing. If it is her blood counts, which it could be from her symptoms, then we can get her a blood transfusion in the next couple of days.

Wednesday, 20 May 2009

Another one of Catherine's friends has just come down with chicken pox. You think you've just got through the threat and then there it is again! So it is all happiness in our household as we face the excitement that is chicken pox yet again. So I am doing a Greta Garbo today and want to be alone. So if you don't see me around, that's why. Nothing personal.

Tuesday, 19 May 2009

Tonight's excitement

Catherine had a great day today and the effects of the steroids are definitely wearing off again. She has been giggly and smiley again, and is almost back to her old self.

This evening I put her to bed. 'It's time for sleeping', I said. Catherine replies 'I can't sleep because I have no eyes!'. Obviously, if she has no eyes, she cannot close them...

A while later, she says, 'I can't get to sleep mummy because my head is stupid, and I can't lay down'.

She can be so inventive sometimes!

Monday, 18 May 2009

A good procedure

Today's procedure went really well and Catherine was fantastic - really cool and calm. She didn't even flinch at having her 'wiggly' put in and she was so chilled out at having the anaesthetic that she was almost asleep before they gave it to her! A cool cucumber! She also really enjoyed all the crafts today, and it was hard dragging her away from the play table! She spent most of her time painting and using coloured sand.

The consultant also met with us today and said that, from their point of view, Catherine was doing extremely well on her treatment. This is always encouraging :-)
When Catherine had her anaesthetic and chemotherapy into her spinal fluid, they also took some of her bone marrow to check that there are no 'naughty blood cells'.

It was our last visit to the Royal Marsden Hospital before we go to our new specialist hospital when we move. I didn't realize until we got there. We still need to have chemotherapy at our shared care hospital before we move, but it was odd leaving all the friendly staff that we have got to know at the Marsden. I get the feeling that our Consultant would have liked us to be staying close by so that she could see Catherine's treatment through to the end. But I told her I would let her know how things were going. The nurses, doctors and play staff have all been brilliant and really helped us in many practical ways. The Clic Sargeant lady has also helped us greatly with all the different forms and paperwork that needed to be completed.

The hospital is looking to raise money to form the best childhood and teenage cancer hospital in Europe, but they need to raise funds first. Their plan can be found here www.royalmarsden.org/plan.

Friday, 15 May 2009

Night owl

We had an interesting night last night with Catherine. She didn't sleep well, so came in our bed. Then I ended up sleeping in her bed. Then she asked me to leave her bed so she could sleep. 'Sorry, mum', she said, 'but I want my bed now'. Then she woke Mark up at 5.30am because she wanted him to pass her the DVD player. She shouted for him so that she didn't come into our bedroom and wake us up!!! The steroids play havoc with Catherine's sleeping pattern and then she feels very tired during the day. She's still a bit sensitive, but we found today that if she could be distracted by her friends and other activities, she felt a bit better.

On Monday we are going for a general anaesthetic and lumbar puncture at hospital. Catherine will receive more chemotherapy into her spinal fluid. Please could you pray for the anaesthetist and doctors and nurses performing the procedure and for the procedure to go smoothly. We will also be seeing Catherine's consultant.

Thanks also to Alison and John - I've just managed to access Catherine's email account again and found your messages!


I will put some recent photos of Catherine on the blog soon, as I realised today that I haven't updated her pictures in a long while.

Thursday, 14 May 2009

Cath's steroid misery

We seem to have worked out the problem - steroids! Normally the effect of steroids doesn't hit Catherine until the end of the five days of treatment, so it has been quite bizarre to see it floor her this time round. She told me today that she doesn't feel ill but she doesn't feel herself. She also said that she felt very tired and not herself this afternoon and 'should have phoned you from nursery'. She looked really tired when she came home today and just cuddled me for ages with a very sad face. In bed I told her that she would only feel 'not herself' for a few days and then she would feel better again. I think she felt reassured, but we still have another three days of this to go. I think she copes ok at nursery, but as soon as she gets home she relaxes and tells me all her woes. Poor C.

Wednesday, 13 May 2009

Not feeling well

I am sitting watching Catherine asleep on the sofa. She came home from nursery today not feeling too well, but she can't explain why, so I suggested she had a nap. She doesn't look quite her usual self and her moods are all over the place. She can't decide what to do and is crying a lot. Normally I would put this down to steroids but she only started them yesterday evening, so unless her body is reacting unusually strongly to them, I am concerned for her.

It makes me angry thinking that someone so young should be going through all this. I don't think anyone should have to go through this, let alone someone who should be at the prime of her life, bouncing around and generally causing mischief.

A couple of days ago we were in conversation with someone and mentioned that we were going to the hospital on Tuesday. We were asked why we were going and we said 'Oh it's only for some chemotherapy'. ONLY for some chemotherapy. Thinking back I find it so odd that we have become so 'normal' about Catherine's treatment that this is 'only' chemotherapy. Before Catherine's treatment, even the mention of the word chemotherapy would have made me sit up and listen. But now it is just part and parcel of life.

I think it is because we have made it normal so that Catherine can cope better with her treatment. On hospital days, Catherine is normally upset and doesn't want to go, but is always buoyed up when we tell her that 'It's only for some cold medicine and then you can go back to school'. I suppose it is a bit like telling a child who hates brushing her teeth that 'Its only for a minute and then you can have your bedtime story'. Bizarre really, but that's the way it goes.

Since Catherine's diagnosis we have seen so much that is more life-threatening than having chemotherapy. Obviously the illness itself is much more threatening, but we have also been exposed in our hospital visits to children with many types of tumour and infections that the chemotherapy just seems to be very simple in comparison. Even so, the treatment can still cause problems. So please do keep praying that Catherine does not have any side effects or infections. I am certain that prayer has got us through so far and will keep us going until treatment ends and for the years to come.

Tuesday, 12 May 2009

Cold medicine

Today we went to get Catherine her 'cold medicine' - it is called cold medicine by Catherine because it comes straight out of the fridge in a syringe before it goes into a central vein via her portacath. Today she didn't like it very much because there was a strange taste in her mouth as the Vincristine was being put in. Our specialist nurse told us that some of the older children do complain about a strange taste when they receive this chemo, although Catherine has never mentioned it before now! She is very tired this evening, and is sitting eating blueberries and raspberries whilst snuggled up under a blanket. I think her body is more effected by the chemotherapy drugs when she is otherwise very healthy, and she notices the tiredness more. She will also be on steroids for the next five days, so we will be buying more food! Looks like she'll be having an early night...

Monday, 11 May 2009

Hungry Caterpillar

Well, we have survived without the dreaded chicken pox! Thankfully, she has come through without catching it, so thankyou for your prayers.

She went back to nursery today and had a great time catching up with all her friends. She is doing well, has lots of thick short hair, plus lots of energy. She is also going through a huge growth spurt. I keep calling her the hungry caterpillar as she is eating constantly (without the influence of the steroids!). All day long for the past week she has been grazing on fruit and toast as well as her usual meals. She is also craving milk like it is going out of fashion, and has grown a centimetre in two weeks. I am amazed at how her body is starting to compensate for all the chemotherapy, and how quick she is growing again (the chemo stopped her growth for a short while). So now she will start to catch up with her friends again, which is good to see. Her muscle strength is also increasing day-by-day. She now walks to the park without having to be pushed in her buggy or carried, and she is enjoying climbing again. I love seeing her running around with her friends. I am just amazed at how her strength is coming back.

Tomorrow we need to go to the hospital and get some chemotherapy (Vincristine) for her, and next week we will be having another lumber puncture and general anaesthetic. Please continue to keep her in your prayers. Thankyou.