Friday, 31 July 2009

'Bump'

Catherine is becoming very attached to 'bump', otherwise known as her unborn brother or sister. Every morning she comes in to give bump a cuddle, but many times today she has asked how bump is and whether she can have another hug with bump. Partly I think she is unsettled about the move, and she feels that 'bump' is her companion. It is quite sweet as she now addresses me as two people: 'Come on mummy and bump'.

She is still struggling with steroids, and doesn't feel like doing anything for very long. So she is basically bored but can't really be bothered to do anything to make herself feel better. She has had a few giggles today, though, but she has been very demanding. It gets frustrating when I can't do anything to make her feel any better. Only one more day of steroids to go until next month...hooray!

Thursday, 30 July 2009

Steroid situation

The steroids are certainly taking their toll on Catherine and family this week. Catherine is being particularly clingy to me, but I cannot do anything right. It is already hard because we are trying to pack and clean to move house, and Catherine's friends have now already left. So most of the day we have been having disagreements, or I've suggested something, and Catherine has decided that she doesn't want it/like it/want to. So, bless her, she has been a limpet all day. Her immune system is down a bit too which doesn't help, and we are hoping that she will not catch anything in the next couple of days so that moving house is not delayed.

I am not looking forward to tomorrow, as the steroid effect only gets worse as the course goes on. We're all tired from the packing and cleaning schedule and Catherine is unsettled anyway. She has also had 'fizzily feet' from the Vincristine, but is more distressed about it than usual because of the steroids!!

The only way is up...!

Tuesday, 28 July 2009

Lasts and beginnings

Today was Catherine's last day at her local hospital before she moves to her new hospital in August and tomorrow is her last day at nursery. She had her Vincristine chemotherapy and is now back on steroids for five days. Hopefully the steroids will not make her much more emotional over what is already an emotional time.

She received information about her new school yesterday and was SO excited about seeing her name on the list of children. She was also excited to learn that there were 12 girls in her new class - lots of potential people to play with! I told her the number of boys, but it didn't have the same effect. She is very girly! At the moment she is desperate to have a go at a sleepover at her friends' houses. It makes me wonder quite how much actual sleeping would happen, but I'm sure she would have great fun. Our girl is growing up...

Sunday, 26 July 2009

Grandparents and moving

We had a really good day yesterday visiting Catherine's Grandad. It always amazes me how she can go for ages without seeing her Grandparents but that she still has a special bond with them all. Her Grandpa is also visiting at the moment, but she found it very confusing that Nanny did not accompany Grandpa this time!

Having said that, Catherine is actually quite stressed at the moment. I thought I would have seen all Catherine's responses to stress through her treatment, but the 'moving house stress' is coming out much differently. She is getting a bit shouty and everything 'isn't fair'. So we keep having chats to talk through everything that is happening. I'm also giving her as much 'mum-time' as I can, because I find that this seems to help her. She knows that most of her friends will be leaving on Wednesday, and being a socialite (!), this is the bit that always hits hardest with Cath. During our summer placement, she spent most of it missing her friends! It is also weird for her seeing all her things packed up to take with us - she has spent half her life here and can only just remember moving the first time.

Anyway, she was a bit sick this morning so I'm going to keep an eye on her today. Her blood counts are good so she should be ok.

Thursday, 23 July 2009

Latest hurdle with 14 months to go

Last night, Catherine asked her daddy why she had to have more medicines and bloods taken because she has had enough. She seems to be getting more distressed and fed up about having her bloods taken, and whatever we say, she just doesn't want to accept having to have all her treatment any more.

I can see why this might be happening now - we are moving a long way away from her friends and she will be starting a new school and hospital. Everything else is 'coming to and end' but her treatment hasn't also come to an end. It must be so frustrating and a bit confusing for her. Why should all this change, but why should she still have to be prodded with portacath needles and have her moods messed around with steroids? I think this seems to be what she is thinking. We keep explaining that her treatment stops her from becoming ill, but she is impatient now for the end of it. Only 14 months to go...

Please pray that she starts to feel more peaceful about things. She deals so well with everything, but it is still hard for her.

Tuesday, 21 July 2009

Sibling

Just a little post to say that Catherine will be having a brother or sister, due early next year.

Monday, 20 July 2009

Blood? No big deal

The weirdest thing happened to me the other day. I was watching a hospital programme briefly as I flicked through the channels and came across a scene showing an operation. I sat there gripped, watching the blood and gore. I didn't shy away. I didn't try and turn it over quickly. It all seemed so normal and natural.

I would NEVER have been able to watch a programme like this before Catherine's illness. I was always too squeamish - its why I never trained for the medical profession. And now I'm an officer in The Salvation Army, I've suddenly lost my fear for surgery, blood and hospitals. Surprising what a year in and out of hospital does for you...

Thursday, 16 July 2009

Groceries and cupboard space

Catherine's immune system is low again, and we have been told to halve her chemotherapy drugs to allow her body the chance to recover a bit. She is borderline neutropenic, (neutropenia is where there is no immune system) so we are hoping her counts will recover quickly with all the risk of Swine Flu etc. It seems bizarre to me that we miraculously got through the Chicken Pox scare to then have to be thinking about Swine Flu, but the advice from the Hospital suggests that Chicken Pox had more risks associated with it than Swine Flu at present. However, please continue to pray that she doesn't have any viral or bacterial infections or side effects.

Looking around the kitchen today, I realised how annoyed I was at the number of grocery items sprawled across the work-top. The ketchup or salad cream often gets left out and I have only now realised how really irritating this has become. It never seemed to be a problem last year. And then I realized why. We had to relocate the grocery items so that we had shelving space in a high-up cupboard for all Catherine's chemotherapy and medicines.

It comes to something when you are moving house and hoping for more storage space for your chemotherapy, so that there's more room for the groceries!

Monday, 13 July 2009

For the parents

I have been told that some parents who have recently been informed that their child has leukaemia are reading this site. Just to say, you may want to read the earliest posts on this blog from last year, to reassure you that we also felt completely overturned by this diagnosis but that there is a way forward. If you would like to get in contact with us, please email Catherine's address catherineisgreat88@rocketmail.com. You are not alone. Catherine's mummy x

Feeling good and upbeat!

Catherine is doing really well, and since the last time I posted on here, she has enjoyed a camping weekend and a trip to the local swimming pool with her nursery. She is feeling good and is very upbeat about life. She is looking forward to going to 'big girl school' and doing some ballet lessons when we move. She has wanted to learn ballet ever since she was three-years-old, and we had started her on lessons, but her diagnosis changed things. It was during her first ballet lesson last year that I first thought something was not right, as she got very tired easily and complained of aching legs. Obviously she was poorly, but we didn't know at the time. So she is very excited that she will be able to start learning again and putting all her ballet outfits to good use!

It is hard to believe that next month it will be a year since her diagnosis. What a rollercoaster it has been! But it also been a year of miracles and answered prayer. Catherine still finds it odd that she is the only one of her friends with a portacath, and that she is the only one that has to keep having chemotherapy. The other night I told her that there are hundreds of children in the UK who are being treated for Leukaemia (naughty blood cells) and others who are being treated for other Cancers (naughty cells). This seemed to make her feel less unusual, and she settled down to sleep.

Catherine seemed to think that when we move house it will be the end of her treatment, but we had to explain to her that it will be next October before her treatment ends. We will still need daily chemotherapy, monthly intravenous chemo and steroids and a lumbar puncture and chemotherapy three times a year. But she is doing very well, and we are just so thankful for that.

Sunday, 5 July 2009

All was/is well!!!!

Thank you so much for your prayers. Once again, Catherine has defied the odds and is well! She is still on her oral antibiotics, but is bouncy and happy and has not had any more pain. We were all able to be at Commissioning, which in itself proved the power of prayer. I will update more later, but this is just to put people's minds at rest.

Friday, 3 July 2009

Urgent prayer request

Hi everyone. Tomorrow, we are being commissioned (ordained) and we need to be there as a family. Catherine is performing, and she is desperate to attend.

We had Catherine's blood results through this morning and she is definitely fighting an infection. Thankfully she has neutrophils to fight the infection, which is why we are currently not on our way to an in-stay at hospital. In the case of getting a temperature, we would need to go straight in, but the hospital has said that if her ear infection were to become worse, we would also need to go and stay in hospital.

Last night she was in great pain with her ear and was awake crying until 2am. Then she had some relief as, I think, the eardrum burst, so she slept and the pain had gone by the morning.
She is on oral antibiotics and was still able to go to nursery this morning, but the blood results show something is going on.

Please join with us in praising God for everything he has done for Catherine so far, and praying for complete protection and healing for her from this infection. This is so important. Catherine needs to be there tomorrow and so do we. We are victorious through Christ. Thankyou.

Thursday, 2 July 2009

More ear pain

We've just been to the hospital to have Catherine's ear examined as she has ear pain again. The doctor has prescribed us some oral antibiotics, but the did suggest that, as it occurs after her chemo, it may be a side effect of her Vincristine chemotherapy as it can effect the nerves and make things feel more sensitive. However, her eardrums are inflamed so she is also having a blood test to make sure there are no infections. She is also on steroids so is emotionally sensitive, too.

Please pray that she is well by Saturday for commissioning. Last year she had to miss the ceremony and she was sad she could not perform. We are trusting she will be well for her own commissioning day, as she is an honorary Witness for Christ!