'I need a haircut'

Catherine was very tired today and kept going to bed, so Mark and I had suspicions that she had anaemia. This is to be expected as the chemotherapy reduces all the blood cells to kill off the leukaemia cells. We knew that if she was anaemic, she would need a blood transfusion, so we phoned the hospital and they asked for us to go to a local hospital instead of having to travel to the specialist cancer hospital.

When we got to the hospital, they started doing the whole gammut of observations and tests because we hadn't been to that hospital before. We thought we were just going there for a full blood count and maybe a transfusion, and we know they were being thorough, but Catherine got quite stressed because so much was happening at once. The hardest bit for Mark and I is when Catherine becomes anxious because she doesn't know what is going on. It was also made more difficult because, at that point, we didn't know what was going on either, so we couldn't explain anything to her.

The tests found that she was borderline for a transfusion - her bloods scored 8 and if they are less than 8 they recommend a transfusion. They also checked to see whether she had developed temporary diabetes as a side effect of the steroid (this could have caused her tiredness). She doesn't have diabetes, though. However, it was decided that she will be ok without a transfusion until at least tomorrow. The good thing is that she has now had an excellent canula fitted, so it will be easier for her to take the next chemotherapy drug tomorrow.

We did manage to get an hour in the park with friends today which Catherine enjoyed but it was hard seeing her concerned and upset at the hospital. We also had some visitors in the morning, and Catherine made them laugh by suggesting that she needed 'a haircut'. I'm not sure that a new hairstyle will be necessary with the chemotherapy, but Catherine does like to try and lighten everyone's spirits. She is very excited, though, at the idea of choosing herself some new hair. I said that I would have my hair dyed the same colour that she chose and she said 'I want pink hair, mummy'. Great. So now I'm going to look really interesting for the next two years...

Running on 'angel power'

Catherine has been feeling tired today and is still eating huge amounts. She also told me she was feeling 'fed up' but she is not sure why. Partly this is tiredness but it is also the side effects of the steroids. She is also having tummyaches and headaches, but brightened up today when some of her friends came round to see her. Mark describes Catherine as running on 'angel power' at the moment. She is still determinedly getting on with as much as she can and the side effects remain minimal.

Pickfords delivered all our boxes today and we were so grateful when some friends offered to help us unpack. It was such a relief not having to do it all, and even though we didn't get to finish all of the boxes, most of the rooms are now livable. The support we have received, both practically and through prayer, has been just amazing. We feel very loved.

Thankyou for keeping us in your prayers, and thankyou also to everyone who has contributed to the Pray For Catherine facebook group. We had no idea that Jonathan planned to start this group for us on facebook, but it has been a real source of strength for us as we have faced this as a family. We know your prayers are helping.

In the outside world

After being inside a ward on hospital for two weeks it was a mixed blessing to leave. Like other parents of children with leukaemia have told us, we both felt a bit like new parents taking a baby home for the first time - a new responsibility but not quite sure what we were doing. However, it was also great to be back out in the fresh air. Jimmy's hospital is brilliant, and the staff are excellent. They have really helped us get our heads around the technical side to Catherine's illness.

On the way home in the car, I started to think, which is never a good idea! I thought about the fact that, since Catherine was born I had tried to protect her from so many things. I remember getting over the six months after her birth, and having a mini celebration that the threat of cot death was over. I remember all the times I've made sure all the knives/medicines/cleaning products were out the way and all the plug sockets were covered. I remember the times I have paid extra attention when crossing the road with Catherine in her buggy, moreso than if it were me on my own. All those times when I have tried to keep her safe from harm. I had thought about the possibility of road accidents, meningitis, choking, food poisoning, fires and accidents at home but never in a million years had I thought Catherine might get childhood cancer. Something I couldn't have protected her from. Something I had never imagined. I know the diagnosis has happened, but sometimes I just can't believe it. It just doesn't make sense.

But I know God is still working despite all this and that He will bring us all through.

Hungry

We are now home much to everyone's relief. It has been hard to find time to blog this evening because of the amount of food Catherine is eating! I put her to bed at 7pm and at 9.30pm she was asking for 'lots of cucumber'. At 10.30pm she was asking for 'rice, peas and chicken'. She is eating huge quantities of food because of the steroids, and talks about food pretty much all day long. Her cheeks and tummy are certainly seeing the effects of all the food. However, this is a minor side effect of the treatment, and although Catherine is finding being hungry all the time annoying, at least she is not in any distress. Catherine was very pleased to be home, and today asked me why everyone was bringing her cards and presents. I think she was puzzled because it wasn't her birthday. We had to explain that it was because everyone was happy to see her out of hospital.

We spent the afternoon making a sticker chart like the one Catherine had in hospital (her idea). Every time she has medicine or a procedure, she will get a sticker and at the end of two weeks she gets a small gift. Today she has four stickers - she had two 'nasty medicines' and two 'very sweet medicines'.

As long as she doesn't show any signs of infection, our next appointment at hospital is Thursday when Catherine will be given more chemotherapy drugs. If the bone marrow test from last week was successful, and she has reached the required level, we will not need another test on Friday.

They are also looking at the genetic make up of the leukaemia cells. This is very important as it determines treatment and prognosis. Please continue to pray that Catherine's leukaemia is the most treatable, otherwise they would need to increase the chemotherapy and therefore increase the potential side effects etc.

More answered prayer

We have been told that Catherine is being discharged from hospital tomorrow morning. Our next hospital appointment will be on Thursday when we will be in hospital all day for more chemotherapy. The wonderful thing is that, when we spoke to the senior nurse, he told us that it is unlikely for a child to come through this first stage of chemotherapy without an infection.

Catherine has not had an infection.

We believe this is answered prayer and I want to thank everyone who has been praying for helping our little girl.

My little yo-yo

Today I have been calling Catherine my little yo-yo as she has gone from being really exhausted to bubbly and cheerful and then exhausted today. Catherine has protested at her new nickname and says 'I am not an oh yo!'. She has had a problem today in that the muscles in her legs have become quite sore and she prefers not to walk about very much. This is probably one of the side effects of one of the chemo drugs, and whilst the doctors are not worried, it is causing her discomfort. I asked her whether she needed some medicine to take the pain away. Each time she replied 'No, it's ok mummy. It will be better soon'. Eventually, though, we managed to convince her to have some medicine, but she is prefering to tough it out without if possible. Please pray that she feels rested tomorrow and that the discomfort in her legs goes away.

Out of theatre

Catherine is now out of theatre after her bone marrow test and is doing well. She has eaten a huge bowl of rice crispies, a bowl of tuna and mayonnaise (!) and four slices of turkey roll plus a number of carrots! Sounds revolting, but Catherine seemed to enjoy it after having nil by mouth since last night.

The Consultant has said that we may now be discharged on Sunday evening! He is preparing her medication for us so that we can take it back to London. If we are discharged on Sunday, we will probably stay overnight in our 'Home from Home' accommodation before hitting the road for our four hour journey home on Monday. Thanks for your prayers. God is good.