Sunday, 31 August 2008

A good day

Catherine has had a good day today. The steroids are taking a bit of a toll on her mood, and sometimes she is clingy or abrupt, but other times she is still giggly and playful. However, her bloods are remaining stable which means she might be able to come off her drip tomorrow and then move about freely, which anyone who knows Catherine will know that she will enjoy.

In fact, she is SO determined to come off the drip that she has been drinking heaps so that they will remove it. She has decided herself that she wants to come off, and is determined to get enough fluids down. She also had another chemotherapy drug added today - an injection. This is the one that concerned me the most, but she just got on with it with no fuss. A bit of complaining and nerves beforehand, but no struggles or tantrums. I was astounded at how well she did it.

She has also really enjoyed a visit today from her nursery leader and thoroughly enjoyed talking about nursery and all her friends.

We continue to feel really upheld by your prayers and support and thank you for everything you are doing. We know that your prayers are helping. Please also continue to pray for guidance for all the doctors and nurses caring for Catherine.

Saturday, 30 August 2008

Another day

Today was a strange sort of day. Nothing seemed to go well this morning from the moment I woke up and we were moved out of the side room where we had been on our own onto the ward. While moving onto the ward means that her blood count is a bit better (she is less likely to get infections from germs/viruses)- it felt too early for me to be 'braving it' in front of everyone else. It was nice having had a retreat when I just wanted to catch my breath. However, it has not been as bad as expected as it has been good to speak to other parents.

Catherine has had a reasonably good day and has had the second dose of meds. She was a littl bit up and down but not too bad: a combination of tiredness and the meds. She was allowed to be detached from 'melody' the drip for five minutes today, and it was great to push her up the corridor in a little plastic car and generally run around with her for a bit. Catherine is getting used to procedures now and knows what all the different things are for but is still looking forward to seeing her friends again soon.

Please continue to pray that the results from the spinal fluid are clear and that side effects of the treatment will be minimal.

Some photos have been added to the facebook group 'Pray for Catherine'.

Friday, 29 August 2008

Being a parent in this

It is now nearly 10pm and I should be sleeping, but just as I was about to go to our 'home from home' the nurses had trouble getting the required bloods. Catherine was distressed so I am still here, waiting to see if she needs a new canula.

People have asked me what it is like being a parent in this. I cannot speak for Mark but for myself one of the hardest bits so far is the feeling that, personally, I am not responsible any more. It is not up to me to decide what Catherine will be doing each day as this is now the doctor's remit. Her schedule is not arranged by me but by others and it is hard giving my daughter over to others, despite knowing they are doing the best for her. I spoke to a friend earlier and said that it is a bit like watching your little girl through a pane of glass: you can look at her and show your love, but something is preventing you from practically doing anything to really help. I explained this feeling to the nurse and she reassured me that all I needed to do was love Catherine. This was really clear this evening, as her hand really hurt, but all we did was look eachother in the eyes until it was finished. It was hard for me to hold back the tears as I got more and more cross that she was hurting but I couldn't protect her. However, I also found my role. All she had needed was me to be there and hold her and it was almost like she could get through anything. I know there will be times like this, and my faith in God is strong but I have to remember that He is in control now and not me.

Dawn

Diagnosis -updated

The results from the bone marrow test are now in and Catherine has Acute Lymphoblastic Leukaemia. This is the most common form of Leukaemia and cancer in children and therefore has had a lot of research and a good prognosis. The diagnosis was not unexpected, as her blood has had some changes since the doctors first thought Leukaemia was a possibility. Catherine will begin chemotherapy today.

Having said this, there are certain elements in her favour:
1. Catherine is beginning chemotherapy when only a few bad blood cells have passed into the bloodstream from the bone marrow.
2. She is a girl - treatment for girls is 2 years, for boys it is 3 years
3. She has had a healthy and positive start to life and is certainly not a 'sickly' child
4. If there is a good personality type for a child to deal with the gruelling chemo, Catherine has it! The nurses on the ward have noticed that she is a strong and feisty character, and that these children tend to fare better emotionally.

Technical information!:

The chemotherapy has a long list of potential side effects, some of which are unpleasant. For the first four weeks, treatment is intense, but by the end of this period, over 90% of the leukaemia cells will have been eliminated. The remaining treatment will involve periods of maintenance treatment followed by two blocks of seven weeks of intensive treatment. The first treatment period is called induction and involves a combination of four drugs, one of which is a steroid. The steroid will mean that she is likely to put on weight and her temperament will potentially change to moody, clingy and/or aggressive. She will also need three more bone marrow tests to ensure she is making good progress.

Obviously she will lose her hair and potentially eyebrows and eyelashes whilst treatment takes place, but these will grow back after treatment. Doctors cannot predict how she will respond to the treatment but have given us a list of the potential complications. The effects of the chemotherapy on the bone marrow last a few weeks and afterwards the number of the healthy blood cells improve and Catherine will stop being in danger of side effects and complications.

Catherine's day

In herself, Catherine has been well today and has been playing with big gloops of glue, feathers and sparkly things in the wonderful playroom on the ward. I think she has just about caused them to run out of craft equipment today! She has also named her drip 'Melody' because it makes a bleeping sound a bit like music. The playworkers made a face for 'Melody' and hung a paper body on the drip - Catherine really enjoyed it. I have taken some photos, so once I get the chance, I will post them on the blog. The playworkers are brilliant - there are four of them and it reminds her of nursery so she feels secure there. Last night was 'film night' in the nursery, and the children all watched Pocahontas 2 on the big screen telly and had pizza. Catherine hasn't been going to bed until late though, as she keeps asking me questions about what is wrong with her and the other children until late. She is having an early night tonight!

For all you pray-ers out there, don't give up. Just after the diagnosis, I went to my bag and there was my bible. Mark had put it there without me knowing, so I just said, 'Ok, God, what are you going to give me for this moment'. I received Luke 18:

'Then Jesus told his disciples a parable to show them that they should always pray and never give up. He said 'In a certain town there was a judge who neither feared God nor cared about men. And there was a widow in that town who kept coming to him with the plea 'Grant me justice against my adversary'

'For some time he refused. But finally he said to himself, 'Even though I don't fear God or care about men, yet because this widow keeps bothering me, I will see that she gets justice, so that she wont eventually wear me out with her coming'. And the Lord said 'Listen to what the unjust judge says. And will God not bring about justice for his chosen ones, who cry out to him day and night? Will he keep putting them off? I tell you , he will see that they get justice, and quickly'.

Let's keep bothering God. Our prayers are working in ways we have not yet seen.

Thank you for caring.

Dawn

Thursday, 28 August 2008

Prayer news through facebook

Just to let you know that as well as the hundreds of individuals, many churches and salvation army corps in the UK and the Netherlands that have joined in praying for Catherine, I have been told that her message has reached the Canadian Territory and the USA East territory of the Salvation Army.

She will now be being prayed for globally by Salvation Army corps in these areas. Thankyou.

The day ahead

We do not know what today holds but we know that we are being supported by God at this time.

Last night we had a visit from one of the hospital chaplains. His son had leukaemia when he was five and was treated in this ward - his son is now 15 and well. This chaplain did not believe in God when he entered the ward with his son but by the end he knew God. Since then most of his family have also come to know God. It is wonderful how God works in these situations and we know that he will work in our situation too. Someone once said to me 'never forget in the darkness what God has shown you in the light'. We have received so many good things in the past that there is lots to focus on. Keep praying. God is good.

Catherine's mummy

Procedure is complete

Catherine has now had the procedures and is awake on the ward eating a weetabix! We should know the results by tomorrow.

Will update more later. Thankyou for your support.

Wednesday, 27 August 2008

Arrival

We arrived at Jimmy's today and all is going to plan for the procedure tomorrow. On arrival, her pink teddy bear was given a bandage and some little tubes to show Catherine what was going to happen. She also got a little syringe so she could put medicine in teddy's arm. She enjoyed playing at this and has decided that she wants to be a doctor and not a nurse.

Generally, Catherine is doing well and the staff have been absolutely fantastic with her. She was a bit scared today when they X-rayed her skull - she has a bump on her head that hasn't healed for a number of weeks - but I think that the foam pillow was pressing on her neck so it was also uncomfortable. Otherwise she is as tough as ever and is probably doing much better than her parents. The staff have given her a sticker chart and she gets a sticker for everything she does well. She also gets a present every time she has an X-ray, so she now has a brand new set of crayons and a pencil with a doll on top.

If people would like a prayer pointer for tomorrow, we are asking that you pray that the procedures go well without any side effects and also that they do not find any bad cells in her spinal fluid.

Catherine got a ride with her mummy today to the X-ray theatre on a wheelchair pushed by daddy. The wheelchair was made for children, so I had to lift my legs all the way. We must have looked bizarre but Catherine enjoyed it. We did have a bit of a laugh at this point and are grateful for small mercies...

Tuesday, 26 August 2008

Facebook news

One of our lovely friends has put together a group on facebook called 'Pray for Catherine' just in case you want to join.

Tomorrow

Tomorrow we are due to arrive at St James' hospital by midday. The doctors will then prepare to take the necessary bone marrow for tests. The procedure will be done the following morning under general anesthetic, so she will not feel it. If leukaemia is found, they will begin chemotherapy within hours of the bone marrow test.

Please pray that they will not find leukaemia in her bone marrow tomorrow. Miracles do happen, so let's push for this one.

I just wish she did not have to go through all this. I look at her and cannot believe she is unwell as she is so playful and healthy-looking. Please also pray that the preparation for the procedure goes well, that she is not too afraid and that the procedure goes well.

Many thanks,

Dawn

The Plan

After a lot of waiting and phone calls this morning we now have a plan.

We had an issue in that both Great Ormond Street and the Royal Marsden in London were debating which of them should take us. It has now come to light that our home address in London is in the catchment area of the Royal Marsden and not Great Ormond Street. This is not a problem as all hospitals that treat leukaemia treat it in exactly the same way. However, The Royal Marsden would not have a place for Catherine until three weeks time and treatment needs to begin immediately if leukaemia is confirmed.

Therefore we will be staying at St James' Hospital (Jimmy's) in Leeds for the first course of diagnosis and possible treatment.

Having met Catherine yesterday, Jimmy's are absolutely delighted that she is staying and both Mark and I, despite wanting to begin treatment closer to friends and family, feel an immense sense of peace at the rightness of this decision. Jimmy's love her to bits and she has already made great friends with her key nurse, Jenny. We will be provided with accommodation at the Hospital in terms of rooms in a shared house with other parents in a similar situation. We will of course let people know the address when we receive word. Also, we will be able to transfer back to London after the initial stage of treatment, but we all felt so cared for yesterday at Jimmy's that we are pleased this decision has been made.

If people do want to come and visit us from the South, there is provision for people to stay overnight. We should be able to transfer at a later date, but the first course of treatment is so important that she must be given it this week.

Here is the link to information about Jimmy's
http://www.leedsteachinghospitals.com/patients/aboutus/hospitals/st_james.php

Love from Dawn and Mark

Monday, 25 August 2008

Discussion with specialist

We are now back at our house in Barnoldswick having been at Jimmy's hospital in Leeds today for more blood tests.

The specialist is pretty sure, based on the cells in her bloodstream, that Catherine is suffering from Leukaemia. We will know for certain on Thursday following a procedure that will examine her bone marrow.

Thankfully, the strain of childhood Leukaemia that Catherine is probably living with has a very good prognosis, although the chemotherapy, and the side effects of the chemotherapy, will be very traumatic for her in places. If it is definitely Leukaemia, chemo will begin on Thursday or Friday and we will be in hospital for approx 2 weeks all being well without side effects or infections. Thankfully, apart from the possible Leukaemia, Catherine is very well and strong in herself which means that she should be able to handle the chemo better. Also, they have caught the Leukaemia in its earliest stage before she becomes physically unwell and before her bloods are more affected, which means she is stronger to fight the illness.

Tomorrow we are planning to pack our belongings with the hope of being transferred to Great Ormond Street Hospital on Wednesday. Overall, the specialists would anticipate the treatment programme lasting two years; eight months of intensive treatment and the remaining treatment at outpatients.

Obviously, if we get a miracle, this would not all be necessary...

Please pray that Catherine receives full healing, that she has the less aggressive version of the cancer, that she will receive strength to handle the chemotherapy - both physical and mental, that the side effects of the chemo will be minimized and that she will not get any side effects or infections following the chemo. Please also pray that we will be able to hold it together through the tough times ahead, because Catherine needs her mummy and daddy.

At the moment, Catherine is generally happy in herself but knows she is not very well and that's why we are going to 'sleep at the doctor's' a lot. She does find blood tests a bit scary, but the nurses have all been so kind and helpful in distracting her.

Thankyou for all your texts and messages. You would not believe how much they have helped in these early days. In fact, we have never felt so supported.

We all know how much you love Catherine. I have every hope of a positive outcome for her at the end of the two years.

Every blessing,

Love Dawn and Mark