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.

'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.

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....

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.

'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.

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.

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.