Wednesday, 31 December 2008

More answered prayer!

By today, New Year's Eve, Catherine's temperature completely stabilized again, meaning we do not need to go into hospital. It never again hit 38 degrees. We are at home for New Year.

Thankyou for your prayers for Catherine this year. They mean so much. To everyone who reads this blog and cares for our family from a distance in prayer, we wish you all a very happy New Year.

Tuesday, 30 December 2008

Thankfully still at home

We are still at home! After Catherine's temperature hit 38 degrees, we monitored her through the night and even though she has a temperature over 37 degrees, it has come down and has not hit the level where we need to take her in to hospital. The hospital confirmed that we do not need to take her unless her temperature goes above 38 degrees. This is great news and a relief for Catherine who just wants to play at home.

Monday, 29 December 2008

On our way to another stay in hospital...

I am writing this at nearly midnight. Currently we are at home and Catherine's temperature has hit 38 degrees. We are waiting an hour to check her again, but it looks like we'll be having another stay in hospital with Catherine on intravenous antibiotics. She is not in any distress and doesn't look flushed, but if her temperature hits 38.5 degrees then we are definitely on our way. Oh, how miserable. She will not like being woken up...

She had her chemotherapy drugs today - Doxorubicin and Vincristine - and this went well. She has a small number of neutrophils but is still susceptible to infection at this stage. On the way to the hospital, she suddenly piped up 'Mummy, when will I be better like all my other friends'. It looks like she has realised that her life is a bit different to her friends' lives at the moment.

Prayers would be welcome. Please pray that the infection is only minor and can be easily solved, and that her temperature comes down. Thankyou.

Friday, 26 December 2008

Christmas Day


















Catherine has decided that she loves Rudolph the Red-nosed Reindeer but thinks that Father Christmas is ''a bit scary'' because he comes into bedrooms at night time. So, rather than leaving a mince pie out for Father Christmas, she left a carrot and a bowl of water outside for Rudolph instead. In the morning, she was so excited to see if Rudolph had eaten his carrot, that she left half her presents to go outside and have a look.

On Christmas Eve, she went to bed physically shaking with excitement. However, she still didn't like the idea of Father Christmas at all. She couldn't understand why she couldn't see him and thought he was afraid of children! We managed to persuade her that Father Christmas was only going to go into the living room with her presents, but she still woke us up in the night because she didn't want him in her bedroom.

We have had a very special Christmas with Catherine. She has been well all through Christmas and her blood counts were very good which meant she has been leaping around all over the place (well, as much as she is able to)! She had some 'fizzily feet' (side effect of chemotherapy) on Christmas Day, but it was only minor and went away quickly. She thoroughly enjoyed opening her presents and had fun playing with her friend in the afternoon.

Thankyou for your continuing prayers for her. We are so relieved that she didn't have to spend Christmas in hospital, and because of Catherine's situation, I have to say I ended up thinking about and praying for the families and staff in hospital a lot this Christmas. We have our next dose of chemotherapy on Monday - Doxorubicin and Vincristine.

Monday, 22 December 2008

Christmas approaches...

Catherine had a difficult day yesterday as all the treatment hit her system. She felt quite fragile and her moods were really up and down (steroid). One minute she was crying and wanting to be cuddled, the next minute she was cheerful and bouncing around. Her hearing and sense of taste and smell are all heightened from the treatment, and she kept complaining that things are too loud or smell funny. She was also up a lot during the night, which we found happens because of the steroid treatment. She woke at 1.30am, 3am, 4am, 5am and then was awake in bed until 6am.

However, today she has been much better. She still looks really tired but is feeling much more cheerful and has just gone up the park to play with a friend. We are trying to make the most of this week as the treatment will hit her neutrophils by next week, meaning she is much more susceptible to infection.

Today she has been walking round the house with her pillowcase full of toys pretending to be Father Christmas. She is also getting excited about Christmas, especially when she found her 'socking' (stocking) and found out that she will get presents in it on Christmas Eve. She was also very excited today when we found the video of her first Christmas. She could tell that the baby was her, and thought it was funny that she couldn't talk or walk properly then. Catherine's grandad is coming to stay with us over Christmas, so she has also been excited that 'Grandfather' will be sleeping in the room next to her and that 'Father Christmas will also bring Grandfather some presents too'.

Saturday, 20 December 2008

The Star

Catherine has had her treatments and was well enough to take part in her nativity play - thankyou for your prayers!

On Thursday she had three chemotherapy drugs and her bone marrow test under general anaesthetic which she calls 'wobbly medicine' (because it makes her feel 'wobbly' afterwards). She did very well and was very calm about the whole thing. On Friday she had another chemotherapy drug and we have had to start treatment with steroids again for seven days. This means that Catherine is likely to be a bit sensitive, grumpy and fed up, and that her appetite will increase again for a short while. However, she was still feeling cheerful yesterday when she took part in her nativity play...as the singing star!

Today we went out for a meal together at Nandos before her neutrophil count takes another big dip - this is likely to happen in the next few days. Catherine really enjoyed it, enjoyed her chicken and garlic bread, and spent the rest of the afternoon napping on the sofa. Her moods have already been a bit up and down today, but we are not sure how much of this is the steroid and how much is tiredness from all the chemotherapy drugs.

Catherine is now also taking an anti-sickness drug, as Doxorubicin can make her feel or be sick. Doxorubicin is an effective drug although stronger than any she has had before. It is still weird watching your child as a drug labelled 'cytotoxic' (cell killer!) is pumped into her little body as she is eating her snack! I'm just pleased she doesn't really know what it is!

Specific prayer requests again are for protection against side effects and infections. Also that Catherine receives the right treatment plan during randomization - good enough to ensure that she doesn't have a relapse. We have had so many victories during Catherine's treatment that I know God is working on her behalf. Thankyou for your prayers.

Wednesday, 17 December 2008

A surprise

Today we had a surprise: a package and a card. The card was a prayer card from the Netherlands. It was very special to read what was written on the card. A gentleman who has leukaemia had heard about Catherine entering the next phase of chemotherapy and spent time praying her. The message on the card was very moving. Then we received a little parcel containing a little wooden cross made out of wood from trees near Bethlehem. I don't want to embarrass people by mentioning them by name, but this was a gift from a lady who we have never met. When Catherine saw the wooden cross, she smiled and kissed it. She said 'I really like this mummy, I will put it here'. Tonight when she said her prayers, she asked for it to hold. The kindness of people still moves me, and everyone's prayers and tokens have meant so much.

Catherine knows that tomorrow is 'not a school day' but is more worried about having the little plaster on her back than actually having the general anaesthetic! I have reassured her that we can take the plaster off gently by soaking it in the bath. This seemed to do the trick, and she has gone to bed much happier. Please pray that the procedure goes well tomorrow and for all the doctors and nurses that will be working at her hospital tomorrow. Thankyou.

Catherine has an e-mail address!

Some people have been having problems posting messages on Catherine's blog, so we have started an e-mail account if people want to send an e-mail instead. The e-mail address is:

catherineisgreat88@rocketmail.com

Sunday, 14 December 2008

Photos as promised






These are some photos a friend took from Catherine's last stay in hospital a few weeks ago.

This week and Doxorubicin

Thank you for your prayers! Catherine managed to get through her tummy bug without a temperature which means we were able to stay at home. She was also better the following day and had enough neutrophils so we were able to go to the pantomime after all! We went to see Peter Pan and Catherine loved it. Today, all she has spoken about is Peter Pan and whether we can see it again. She demanded, and has coloured in, pictures of Peter, Wendy and Hook off the internet. She has also dressed up as a fairy and been practicing flying!

We are going to hospital this week to begin the next phase of chemotherapy. This is a more difficult phase, and begins on Thursday with a general anaesthetic, bone marrow test and chemotherapy into the spinal fluid. I am also a bit nervous about Friday because she will be at hospital again to receive two chemotherapy drugs: Vincristine, which she has had before, and Doxorubicin.

I am a bit nervous about Doxorubicin as it has some scarier side effects: weakening of the heart muscle and there is a small risk of a second kind of leukaemia. Please can I ask for your prayers again, to ensure nothing happens to her heart and that she does not get another form of leukaemia. Also please pray that the side effects are minimal during this phase and also that she does not get an infection.

Thank you for your prayers concerning chicken pox a few weeks ago. I am pleased to confirm that Catherine did not get the chicken pox infection which can be difficult for children who do not have much of an immune system.

It has been really good being on a less intense chemotherapy regime, but we know the next set of chemicals can be problematic.

Friday, 12 December 2008

Catherine is poorly

Catherine was up most of last night being sick with the sickness bug that Mark had earlier in the week. She is off school and is currently at home on the sofa fast asleep.

Please pray that she doesn't get a temperature, otherwise we will have to go to hospital for another five days. Catherine is desperate not to miss her Christmas nativity play - it is next Friday, and she needs to be well enough for rehearsals too. She will be singing 'Twinkle, twinkle little star'. She loves singing and can't wait to try on her costume. She also has her nursery Christmas party next Tuesday, and I'm going to feel really rotten if I have to tell her she can't go. Catherine is such a social animal (!) it is hard for her to be cooped up. She has already been sulking today because she is bored, so we made a giant Christmas cracker and card for the carol service.

Thank you for your prayers. I plan to put some more recent photos on the blog soon so you can see how Catherine is doing.

Sunday, 7 December 2008

Carolling in hospital, not counting the hours...

I've just been back to Catherine's ward from last week - carolling with the band! It was very strange going there and knowing everything that goes on, but only going there to sing! We actually sang a whole rendition of Rudolph the Red-nosed Reindeer and Away in a Manger on the exact spot where she was taken in with her fever last week. Bizarre!

I remember the strange mixture of boredom and stress on the wards and thought how welcome it was to have some people come and sing to us when we were there last week. Carolling was very worthwhile. I felt privileged to be in the oncology and children's wards, and being a bit more experienced in these things than I used to be, I didn't feel at all awkward. It was very weird - almost like being at a home-from-home!

When Catherine found out that mummy was going out earlier, she wanted to come with me. However, when she realised I was going to her hospital to sing she said 'no thanks, mummy. I stay here with daddy!?!?'

Catherine is doing well and there are no more signs of infection. She has been off school all week and is quite happy and contented to play with her mum all day, although soon we will run out of craft equipment!!!

I was talking with Mark last night about Catherine and her treatment, and we agree that, whilst we are pleased that everything is going well and whilst we are confident about the future, Catherine's illness can actually be quite emotionally draining. Its like a little gnawing pressure in the back of your mind, having to remember all the medicines and treatments. It is also difficult to love someone and see them go through all this treatment. It was good yesterday for us both to be able to have a few minutes to talk things through and we both feel better for it.

Thursday, 4 December 2008

Spider hunt

Our daughter is doing well and has not had any more temperatures or signs of infection. Her blood results were good today even though her neutrophils are dropping again.

She is getting used to not being at nursery and is enjoying it a little too much - tonight when she went to bed she was pleased that she was staying home tomorrow!!

Today she has been on a spider hunting expedition, using the pump from her inflatable bed to suck up imaginary spiders around the house. They are very wonderful colours - she sucked up a few pink and green spiders today, and her imagination must be good because when there is a big spider, she looks a bit nervous and creeps up on it slowly! We have also been doing some Christmas crafts and tomorrow we will be making paper chains! Yesterday, she read her little book for the first time. It was very exciting and she was very proud.

We are conscious of the fact that her intensification block of chemotherapy starts shortly (December 18th) and we are not looking forward to it. There are some more serious potential side effects of this treatment along with a greater risk of infection. The lesser side effects, although very unpleasant, include nausea and vomiting, mucositis (inflammation of the mouth, throat and stomach leading to soreness and ulcers), inflamed oesophagus and difficulty swallowing(oesophagitis) and muscle pains. More serious but rarer problems include the development of another form of leukaemia or a secondary cancer. Also there is a risk of heart problems.

Please pray for Catherine. I don't want this time to be the calm before the storm but the medical profession have warned us that the next phase is unpleasant for Catherine. Please pray for us as we administer a number of the drugs at home, as it will be hard to give her medicines when we know they might make her feel very ill. Please pray that we will have peace at this time and know that we are firmly in God's hands.

I look at her every night grateful for the day that we have had together, knowing that the next couple of months need lots of prayer surrounding them.

Monday, 1 December 2008

5 sleeps, now home

This evening Catherine is sleeping in her pink bed with her teddy knowing that she will not have to be woken up to have medicine all night.

Yes, Catherine is home.

We were allowed to leave hospital at lunchtime today after her neutrophil count went up from 0.3 - 2.1 (which is a big jump for Catherine). However, they were unable to find out what caused the infection in the first place. The nearest diagnosis was an upper respiratory tract infection but they were still not completely sure.

Catherine is very relieved to be home. This morning she wailed, 'But mummy, I have already done 5 sleeps'. We do not plan to take Catherine to 'school' for the next few days but this will be hard for her as she loves nursery. I am hoping to distract her by putting up the Christmas decorations tomorrow, but I don't know how long it will last.

Thankyou for your prayers. It has meant that Catherine now has enough neutrophils to come home and can resume her chemotherapy. She is still on oral antibiotics and her potassium supplement for the next few days, but is so pleased to be home. Please pray that this infection is now gone or under control and that she will not have to go into hospital for any more treatment for it in the next week!