A snail?

Catherine had her portacath inserted yesterday under General Anaesthetic and I'm pleased to say that the operation went well. She is telling everyone today that she is 'being a snail' because she takes so long walking anywhere. The surgeon said it will take a few days for her to get used to everything but he was very positive about the operation so we are not too worried about this.

The operation lasted about one hour and it signals the end of all the attempts to insert cannulas. We are all relieved about this. The operation was scheduled for 1.30pm but unfortunately, Catherine was lacking part of the blood that helps with clotting and so they needed to give this before the operation. Half way through, the solution stopped flowing so we had to wait for a new bag to arrive. This put the procedure back until 3.30pm, and by this time Catherine was really hungry. She got really fed up with me and kept asking why I wouldn't give her food - she had her (huge) breakfast at 8am that morning and wasn't allowed any more because of the General Anaesthetic. This would be hard for anyone, but with Catherine on steroids it was even more of a challenge for her.

Today she is now coming to terms with this strange thing in her side. The portacath also clicks sometimes because it currently has the pin in it (this will be removed on Friday). She doesn't want to look at it at the moment, and only let me lift her T-shirt up to examine it if she didn't have to see it herself. She is feeling uncomfortable and last night I asked her whether she was hurting or sore. She told me she wasn't but it was clear to Mark that she looked in pain so we gave her some of her painkiller. 'Ah, that's better', she said. We then had to tell her that what she had been feeling was pain and that we could give her some medicine to take the pain away. I think Catherine has always had quite a high pain threshold - whenever she falls over she just gets up and carries on - but we were still surprised to be describing what pain was to her. She also didn't sleep well last night and wanted me to sleep in her bed with her until about 4am when we all got up and had another snack (she had already had five that night). Her daddy then swapped with me, but Catherine decided she was getting up at 6am!

So we had a restful day at home today. It has been good to have a few minutes to recover from everything that has been going on. She has also been laughing with us today, and because she cannot have a bath yet, she really enjoyed me washing her feet because it tickled!

We still need to be very vigilant that Catherine doesn't get any infections. Now that she has a portacath which passes into a vein, there is a risk that the line may get infected. Next Friday we will also be having her 28-day bone marrow test which will look at how much disease is left in her body. The aim of the first few weeks of chemo is to get rid of the existing leukaemia cells. Please pray that this has been effective, because she will then remain on the less toxic chemotherapy regimen and will therefore hopefully have less side effects. If all the cells are gone, she will have what is known as a 'first remission'. It is really important to have a first remission so that the treatment can be targeted at ensuring the disease doesn't come back. Thankyou for your prayers.

Rosy-cheeked and smiling!

Today as Catherine was receiving healthy blood during her blood transfusion, I just felt so thankful that someone had donated the blood she needed. I just want to say thankyou to everyone who donates blood - it is so valuable and has given Catherine a new lease of energy and life. It was great seeing the colour flood back into her cheeks after these weeks of chemotherapy. So to everyone who donates blood - you are doing a good thing.

If you're brave enough to want to have a go at giving blood, www.blood.co.uk gives lots of information about it. No pressure though!

Bravery award!

I asked Catherine what she thought about today. She said 'I was a bit tired and got bored a long while but it was not too bad'. Today Catherine had her first blood transfusion. A blood transfusion takes about four hours and we also had to get another cannula in again so we were at hospital today from 9-6.30pm.

Catherine was quite scared about going to hospital again today after Friday, and again it took a number of attempts to do the cannula. Eventually they asked an anaesthetist to have a go at getting a good vein. The anaesthetist looked so confident and inserted the cannula at first attempt, only for it to go wrong after a short while. It was a shame to see the disappointment in his eyes. They are so kind here. It was also hard when we all sat around and discussed what we were going to do - Catherine needed the blood before a General Anaesthetic tomorrow, but they were running out of usable veins. However, it was good that they discussed this with me in the room as I actually felt part of the decision-making process. The anaesthetist told us that the chemotherapy alters the veins temporarily so it makes it very difficult to insert canulas. This would explain why it had been so much easier before treatment began. They found one more vein that they could use and thankfully it worked.

Catherine stayed completely still through the whole procedure and the nurse was so impressed with her that she received a present. The nurse said she was the best little girl she had ever seen for dealing with that situation. Whether the nurse was just being very kind I don't know for sure, but I do know that she was impressed with her. Mummy got a sticker from Catherine for also being brave, so we are now both heroes. Daddy just got a coffee from the canteen, but he was more than happy with that.

Catherine is going to have her portacath inserted tomorrow as they have no good veins left for cannulas. This procedure will involve another anaesthetic. Please pray that the general anaesthetic and the procedure will go smoothly and that Catherine's body will adapt well to the portacath. Also that she will not get any infections and that she will also be ok with the portacath once she sees it and understands fully what it is for.

What is a portacath?

Most children receiving chemotherapy receive a portacath although some opt for a Hickman line. Catherine will have a portacath as it has more advantages for younger children than a Hickman line. A portacath is an implantable port device, which is positioned completely under the skin and inserted into the subclavian (?) vein to avoid the need for repeated cannulas. How is the portacath inserted into the vein? The portacath will be inserted under general anaesthetic in the operating theatre, positioned in the chest. The portacath can be used for chemotherapy administration, for taking blood and receiving hydration fluids. Catherine will be able to bathe and go swimming as normal. This will mean Catherine will need no more cannulas during her treatment. The portacath will be removed at the end of treatment.

Food

Catherine has been tired again today and eating constantly. We think she has probably put on 5lbs in weight so far since she began the steroids but unfortunately, steroids are a really important part of the treatment. She has started to realise now that she is eating heaps more than us and keeps asking us whether we are hungry too and whether we would like something to eat as well. She talks about food all the time. When her little friend came round yesterday to play, she kept asking her whether she would like something to eat. Her friend went away having eaten a cheese stick, a biscuit and half an apple more than she would probably have eaten that day! We are constantly preparing food and drinks for Catherine and she even wakes up in the night for a midnight snack. Our food bill is becoming quite large as you might expect!

Tomorrow we are going to take Catherine for a blood transfusion which means another canula. After Friday's difficulties, we would ask that you pray for this to go smoothly and for them to be able to find a good vein on the first attempt. Also for peace for Catherine. Tuesday, it is likely she will need another General Anaesthetic so that she can have her portacath fitted. She will need to have nil-by-mouth for six hours before this procedure. At the moment I am dreading trying to deny food to my constantly hungry child. Please pray about this as I have no idea how this will work out.

I've just been talking to a friend who has agreed with me that the 'journey' idea from yesterday isn't perhaps the best way to describe what is happening at the moment. She suggested that it is more like a 'diversion' because when you go on a journey you generally have a choice. Diversion, she said, was more like going off the usual road for a while. I think this is probably a better description for how we are feeling.

In between feeding Catherine, I've also been reading an excellent book by Pete Greig called God on Mute. It's actually a book about unanswered prayer, but actually gives lots of insights into the way Christians try to make sense of things when they encounter big problems in life. I'd had this book on my bookshelf for a while but never read it because it was about his wife being diagnosed with cancer (I have never been one for reading 'unhappy' books unless absolutely necessary). However, I have found this to be really interesting and would recommend it to anyone going through difficult situations.

A strange journey

It is strange how people describe things. When I have spoken to other people who have experience of Leukaemia, either parents or doctors, they all say that it is a 'journey'. Once you have the diagnosis, they say, it is the 'beginning of a journey'. I've found this a bit odd as I like travelling, so to me a journey is a good thing. Perhaps I will think of a different word that describes it later.

Catherine is still a bit shook up and on edge after yesterday, but has otherwise had a reasonably good day. She is still eating or thinking about eating constantly (the steroids), and now has a noticeable tummy and cheeks. Her moods are also up and down and she can get very tired and snappy. I feel sorry for her at the moment. It is so unlike her but I know it is temporary and she ends the steroids in a few weeks.

We also took her to a hairdresser today who has done a lot of research on chemotherapy and hair. She said that because Catherine was not losing her hair at the moment, she might actually keep her hair until the more intensive treatment at the end of the year. So instead of cutting her hair short we were able to give her a little bob instead along with a spray of gold hair glitter! The hairdresser is also getting some temporary pink hair colour into the salon. This is so that if Catherine does start to lose her hair, we can make it fun and pink for a bit. Catherine is excited about this and especially because she thinks mummy is getting pink hair too!!! I will end up looking like Stephanie from Lazytown at this rate...

Just to say, I've been looking today at the Facebook group 'Pray for Catherine' and am so amazed at how many people, that don't know Catherine personally, are praying for her. Thankyou to you all.

Not a good day

Generally, I'm hoping this blog will be more cheerful and apologies if this upsets anyone, but today was probably the worst day so far.

We went to hospital for the next chemotherapy. This needs to be administered through a canula, but because Catherine has had so many, the bruises covered up where the good veins were.

5 attempts later, the doctors were able to find a vein that would work. After the first three attempts, Catherine looked at me and asked 'Are you feeling sad, mummy?'. 'Yes, I said, because it is taking a lot of times to get this to work'. Catherine just shrugged her shoulders as if to say 'It is what it is mummy'. She is like this. Very stoic. On the fourth and fifth attempt, however, she had clearly had enough. It was very difficult as she was crying and shouting 'Leave me alone' at the nurses and doctors, who were obviously also really upset that this hadn't been achieved earlier.

It broke everyone's hearts in the room. Ours, and the lovely doctor and nurse who were trying to help us. It wasn't the doctors' faults at all, it was just that there were no good veins left.

Eventually it worked, and we were able to administer the next chemotherapy drug, but it was a very heavy and horrible day all round. The doctors, who were sad that this happened, are looking into putting in her port-a-cath early which will mean she needs no more needles. I will write more about this later when I'm feeling a bit more like writing.

Catherine is now peacefully tucked up in bed asleep and is looking forward to tomorrow when we are going to take her to play in the park.

What a shame after yesterday's positive news. Keep praying.

God answers prayer - again...!

We have some excellent news. Today we went for the results of Catherine's bone marrow test and her genetic test. It was very nerve racking for us today, as the genetic make up of the leukaemic cells has a strong bearing on whether she will be cured or not.

Firstly, the bone marrow test. Catherine needed to have less than 25% leukaemic cells in her bone marrow so that she would not need another General Anaesthetic and bone marrow test tomorrow.

The Consultant told us she only had 0.8% leukaemic cells in the test sample. This is incredible news for us as it is extremely low. It doesn't mean she is cured yet, but it means she is responding extremely well to treatment (with a little help from the huge prayer support).

Secondly, we were relieved and delighted to find out that Catherine has GOOD genetic cells. Good genetic cells means that she is most likely to respond very well to her current treatment. This means we will not need to increase the strength of the chemotherapy and she can remain on the current plan. This should mean less side effects.

The Consultant has told us that, based on the initial response to treatment and the treatable nature of the cells, her prognosis has increased from good to very good.

The next hurdle is the bone marrow test at the end of the first phase of chemotherapy when they need to find no leukaemic cells in the bone marrow. This will ensure that she remains with a very good prognosis, so we need to direct prayers at this and also that she remains infection free with minimal side effects. These are the biggest risks through treatment. The treatment will then be directed at making sure leukaemic cells do not come back.

Tomorrow we are going back to the hospital for her next chemotherapy treatment and possibly a blood transfusion if she is anaemic. Please pray that this goes smoothly.

We still need to keep on with the two year course of chemotherapy, but this is good news.

Thankyou to the 20,000 individuals (at least) across the world who have been praying for Catherine and for us at this time. I would love to be able to thank you all individually, but it would take up too much space!

And especially, thanks God!