Tuesday, 30 June 2009

October 2010

Catherine has been doing really well recently and today she received some more chemotherapy (Vincristine). The only problem is that she will now be taking steroids at Commissioning, so I am praying that it doesn't affect her mood so much this time. I want her to be able to enjoy it, not feel like she is not in control of her emotions.

This evening she asked Mark again how much longer her treatment will go on for. It is surprising that many people think she is not having chemo any more because her hair has grown back and she has much more energy and stamina. However she still needs her daily oral chemo until October 2010, plus other chemo and lumbar punctures. We have also received a letter from the new consultant at her new hospital, and she is booked in for her lumbar puncture and intrathecal chemo on August 11th. She will be introduced to the nurses, doctors and playworker.

One day I know Catherine is going to ask me much more about her treatment and what her illness really meant. I am pleased that I will be able to tell her about all the prayer support that has gone into her treatment, and about all the ways God has worked in her situation. I am not looking forward to telling her in detail about the original illness, and the fact that she will still need to have check ups for the next ten years which will involve the dreaded needles (her portacath should be removed in 2010).

Thankyou for continuing to pray for Catherine. It means so much to us.

Thursday, 25 June 2009

Ear 'popped'

Last night, Catherine told me her ear 'popped' and she was then able to get to sleep. This morning she was delighted to wake up and not be in pain, although it is pretty clear that her eardrum had burst so the pressure had now gone. Still, she feels heaps better and went to nursery today. This afternoon she has been making up songs and dancing with her friend. It was very funny to hear some of the lyrics they came up with. They drew some music notes on a piece of paper and sang looking at them as if they were in a choir! It made us all laugh. This evening she is now in bed and is still singing. It is so nice to hear her all happy and feeling better again.

Wednesday, 24 June 2009

Very sore ear :( and a very long post...

Catherine is in a lot of pain at the moment with her ear. Her neutrophils are down again, and she now has the usual ear-infection. Her 'pain medicine' doesn't seem to be getting rid of the pain and she is now desperately tired but can't get to sleep because it is hurting her. Tomorrow we will call the hospital and get some oral antibiotics from the pharmacy. Please pray that she doesn't get a temperature, otherwise we will need to pack the suitcase and have intravenous antibiotics for a few days. Poor Catherine. Everytime her neutrophils are down and she gets a cold it goes straight to her ears. She is cuddling her dad as I write this.

She is also worrying a bit about her short hair at the moment. Today she was delighted when one of her little friends cut a piece of hair off because Catherine thought she was going to have short hair too. She also doesn't want to wear trousers because she is concerned people will think she is a boy. It doesn't seem to matter how beautiful we say she is with her short hair. I just think she will be pleased once it all grows back long again. I think she is focussing on her hair at the moment because she knows she is going to be meeting lots of new people at her new school. She says she is a little bit nervous, but then anyone would be starting 'big girl school' for the first time.

I think she is most nervous about changing hospitals because she will not see her play lady there. She really likes Vikki and she enjoyed doing all the craft things. I told her that there would be a new play lady but Catherine was not that impressed. It will be a bit odd, as each hospital has different routines. For example, at our new hospital we will need to attend at least fortnightly whereas at the moment we have been going monthly. This is partly because there are community oncology nurses in London who have taken bloods weekly but not at our new house. Also, at our new hospital, the Consultant does all the lumbar punctures whereas in London, there is a team of anaesthetists and doctors. I'm sure everything will work out well, but we have to try and ease Catherine in to so many new routines in the next few months: new house, new school, new hospital, new church, new friendships. We are, however, looking forward to getting to our new location and getting settled - we are once more in a state of limbo, not settled where we are but not where we are meant to be!!! Despite everything, though, she is pretty adaptable, although I think the hardest bit for Catherine, like myself, will be leaving friends. I think we are both pretty useless at doing this - goodbyes are rubbish. Not necessarily the best way to be for an officer who is going to spend her life moving around, but I can't help it. I actually LIKE people, and so does Cath and Mark. So please pray for us all as we pack, clean and generally get stressed on the run up to another big move.

Actually, I refuse to be stressed. It is not good for the complexion...

Monday, 22 June 2009

Sleepy

We had a nice weekend seeing Catherine's grandad and catching up with people. Catherine overslept this morning and also fell asleep in my arms after nursery today, so I think she wore herself out with the excitement. It was quite nice having cuddles with her this afternoon - she was pleased to come home and have a snuggle. Tomorrow she is having her bloods taken so we will see how her neutrophils and HB are getting on.

Monday, 15 June 2009

Grumpiness subsides

Catherine is feeling more cheerful today as the steroids come out of her system. Yesterday, though, she made a breakthrough. She told me that she thinks she gets grumpy because of the 'cold medicine' (Vincristine). Whilst I think she has done really well to make the link between how she feels and treatment, I only hope she will take the 'cold medicine' next time (actually it is not the cold medicine but the steroid she takes afterwards which causes her mood swings, but she has worked out when it starts!). Personally, if I knew a medicine made me feel bad, I would not want to take it. I hope she will still be ok to take her medicine.

She is very excited at the moment because she will be seeing her Grandad this weekend for Father's Day. We haven't been able to see him since Christmas, so she is looking forward to the visit. We are also going to see Catherine's new school next week as she has an induction day to meet some of the other children. I think she is feeling a little bit shy, but I think I have managed to buoy her up a bit. She is generally quite outgoing, imaginative and kind so I have no concerns about her making friends. Even her bossiness may work in her favour, although with children the same age rather than younger, we will have to see what happens...

Friday, 12 June 2009

Not impressed

Catherine is still struggling with steroids today and she is not impressed by how she feels. I have managed to get a few smiles from her today, but otherwise she is very tired and starting to eat everything in sight. She has cravings with the steroids as well, which means that not just any food will do. I am glad tomorrow is the last day of steroids until next month, as I know she will soon feel better. Tomorrow I am having a day with Catherine while Mark is out. Normally this would be a great time as she is lots of fun. However, she is under the weather but still gets bored so I'm going to have to find some gentle entertainment for her for tomorrow. Wish me luck!

Thursday, 11 June 2009

Steroid sadness :(

Catherine has been pretty good until she started the steroids yesterday. She has been telling me that she 'doesnt feel right' and is very sad and clingy. It has really altered her moods again, poor thing. Today she fell off the see-saw and banged her chin which didn't help. Tonight she has been telling me that she doesn't feel well and that she doesn't think she is well enough for nursery tomorrow.

She has also been talking about her new hospital which we will be attending from August when we move. It is another specialist oncology hospital and we are praying that she will have a smooth transition to the new hospital. It will be very different for her as she is used to the nurses and playworkers where we are now, so we are hoping she will settle quickly. It is odd how you get into a hospital routine, but it will be odd for all of us getting used to the new procedures at the next hospital. Due to the way the hospital is set-up, we will also probably need to go once a week instead of once a month, as we have been told there are no oncology community nurses to do her weekly bloods at our new home. This will mean an afternoon a week out of school for her.

Here's hoping she feels better tomorrow.

Sunday, 7 June 2009

''Wobbly medicine?''

Despite a bad cough, Catherine is still doing well. This weekend we took Catherine to a photographers and had a family photograph taken. We had been waiting until Catherine felt comfortable with her hair, and now that she likes her short hair, we thought it was a good time. It was very good fun, and it was nice getting an updated picture taken.

The other day I told Catherine about the fact that I need to go to the hospital in a week's time for an endoscopy. I thought she might be concerned, so I explained that I would need some medicine a bit like her 'wobbly medicine' (the name Catherine gave the anaesthetic because it makes her feel a bit 'wobbly'). I think she misheard me, because suddenly she exclaimed ''Oh no, I don't need wobbly medicine, do I?''. I replied that she didn't need 'wobbly medicine' and it was only mummy that would need it. Then she pipes up: ''Oh well, that's alright then''. Thanks, Catherine, for your concern!!!!!!

On Tuesday Catherine is having another dose of Vincristine (chemotherapy) at the hospital followed by five days of steroids. Last time, the steroids made her very emotional. Please pray that they don't make her feel so miserable this time. Her neutrophils (immune system) are still low, so please also pray that she doesn't get any infections. She has a bad cough and it would not be good if this went to her chest. Thankyou.

Wednesday, 3 June 2009

Small miracles

Catherine has remained completely chicken pox free, despite nearly all her little friends having chicken pox in the past few week. I think only one of her friends remains without the dreaded pox, and that little friend was the one who came camping with us last week! I am continually amazed (although I shouldn't be really) by the power of prayer and the way that God has carried Catherine through her illness. There have been difficult times, but all the way through it is like God has cushioned us, buoying us up and giving us strength and comfort to get through the hard times.


We still live with the tension of knowing that she has low immunity but realise it could be so easy to put life on hold and not do anything. So we chose to go camping which she thoroughly enjoyed, and it was great to see Catherine leaping around enjoying life. We could wrap Catherine up in cotton wool and choose to do nothing, but we have chosen to live life to the full, living in trust that all will work out for the good.

Thankyou for praying for Catherine. I truly believe that it is your prayers that have helped our little girl.