A blank sheet

At church today we were encouraged to draw a picture of something we are anxious about. I found that I couldn't think of anything. I found this quite startling. If I was someone else looking in to my situation, I would expect an undercurrent of anxiety, but I can honestly say I am not anxious. How can I not be anxious in the situation in which we find ourselves? Have I completely lost it? Am I being totally unrealistic?

This is one of the biggest situations I have faced in my life and I couldn't even muster enough anxiety to think of something to draw! The discussion time was a bit embarrassing as I had a blank sheet of paper.

Mark sometimes jokingly says that I am like a swan, serene and calm on the surface but that my feet are paddling quickly underwater trying to keep everything afloat (probably like a lot of mothers). But my feet aren't paddling. I can only give the glory to God for this. I can only thank the people who have prayed for me, for Mark and for Catherine. I have taken so much comfort in God these past few weeks. So many positive words have been given concerning Catherine that it is difficult to become anxious. Yes, I do feel anxious when Catherine is having an unpleasant treatment or is distressed, but generally, when nothing is happening at that moment, I am at peace. I just thank God for this wonderful demonstration of His faithfulness in my life and for the peace He gives which really does pass all understanding.

Thankyou for your prayers. I want to encourage you that God hears them and is answering.

Wearing curtains?

We had an interesting night's sleep last night as Catherine decided she wanted to come into bed for a cuddle. This was very cute, but as the night progressed she took over the majority of the bed (diagonally) and Mark ended up going to sleep in the spare room. Also, she woke me up a few times stroking my face. Another cute thing to do but it has resulted in a tired mummy, especially after yesterday's hospital visit.

The hospital visit went as well as could be expected. Catherine doesn't like having the anaesthetic for the lumbar puncture because it makes her feel 'wobbly' afterwards, so she was worried about this all morning. However, she was very happy using the anaesthetic spray instead of the 'magic' cream on her portacath, so I think we will use it the next time. She is already losing the weight she gained on the steroids and is continuing to walk and run about more. This is very good news.

Catherine is also working out that she can have fun with her new hair. I was carrying her earlier and she had a naughty sparkle in her eyes. Seconds later, she had put her 'hair' on my head......back to front! This meant I couldn't see where I was going and also that she was in a fit of giggles which made it much harder to keep hold of her: 'Mummy it looks like you're wearing curtains' she said as she parted the 'hair' to see my face. Typically, as is always the case with Catherine, this had to be a day when we are attending a big conference. She is so funny.

Please continue to pray that she escapes any infections, particularly viruses like chicken pox and measles which would mean we need to go into hospital immediately. Thankyou.

Normal naughtiness

This morning I spent twenty minutes chasing a giggling Catherine around the room trying to get her ready to go out! Now the steroids are coming out of my daughter's system, I am starting to see her great personality again, even it takes ages to get her ready to go anywhere.

It made me think about all those times we as parents get frustrated and even annoyed at some of our children's behaviour. I'm sure other parents of small children can relate to how their antics are at some times really inconvenient. How bizarre it seems, then, that I should be so happy that she was doing something that would have frustrated me before her illness. But I was happy, and when she ran and hid herself in her bed rather than get dressed, I was quite happy to go in and see a heap of bedclothes shaking with her laughter.

Catherine also went to the park today with her friend and they played together on the swings and the climbing frames. This is the first time Catherine has attempted to climb anything for ages, so it was good to see. However, she fell and grazed her knee and for the first time I felt like an overprotective mother! Thoughts that raced through my mind were 'Do I have any anaesthetic cream at home? I don't want that to get infected' and 'How many platelets does she have in her blood if it starts to bleed and needs to clot?'. Daft things that wouldn't have bothered me at all in the past, but seem all the more unknown because of her condition. Catherine, on the other hand, just got up, dusted herself down, and got on with the important business of playing.

Tomorrow we are going to the hospital for another lumbar punch and more chemotherapy. Catherine will be having an anaesthetic again and will not be able to eat from 5am tomorrow morning until the procedure is complete (after 10am). She is quite nervous about going to hospital tomorrow because she says the anaesthetic 'makes her feel wobbly afterwards'. She doesn't like the feeling and doesn't like the anaesthetic cream they put on her portacath. She said she would like to try the spray instead, so maybe we will have a try at this tomorrow.

'I don't want to go to bed'

At 7pm this evening Catherine said 'I don't want to go to bed' and smiled mischieviously. Once I managed to get her in the bed, she actually asked for prayers AND her bedtime song which we sang whilst she bounced her teddy bear up and down. She was still awake by the end.

This is my Catherine.

Before diagnosis she would never want to go to bed and she would always want her bedtime song, probably because it meant she could stay awake a bit longer. Since treatment began she would put herself to bed and then not want any singing because she was too tired. It has been so nice to see some of her old energy and fun now that the first phase of difficult chemo is over.

However, surprisingly today we found out that her neutrophil count (the part that helps fight infection) has gone right down again from over 12 to only 1.2 in just a week. This is due to the oral and intrathecal (spinal fluid) chemotherapy. This is not unusual and to be expected, but we were surprised that it had gone down so drastically so quickly. This means that we need prayers to protect her from infection again.

Catherine's blood test went really well today. She still doesn't like having the cream put over her portacath to numb the skin, but taking the bloods was easy and she didn't worry at all! The nurse commented on how good she was. I think Catherine was happy because she knew she would get a purple balloon afterwards! She also likes the nurse who she calls 'that nice lady'.

This afternoon, I told Catherine that we had some good news from the hospital. She gave me a huge smile and then ran off to play with her friend Hannah. I am glad that, at this moment in time, she is feeling so much better in herself. It is lovely to see.

Celebrations and thanks

Catherine's MRD results are back and she is now officially 'low risk'!!!!

This is the wonderful news we have all been waiting for and means she can continue on this level of treatment. It also means that her prognosis continues to be very good.

Catherine will still need to continue the full programme of treatment (2 years) and is still at risk of infection and the side effects of the treatment, but this is the BEST POSSIBLE NEWS at this stage.

Thankyou SO MUCH for your prayers for Catherine. You cannot imagine how happy we are that she will not need a more intensive treatment programme. Dear pray-ers, please spend a moment thanking God for this news and for His love and goodness. He is working mini-miracles every day in her life.

Thankyou everyone and thankyou God!

I will rise and bless you Lord.
Lift my hands and shout Your praise,
I will tell of the marvellous things you have done
And declare Your faithfulness.
I will rise and bless You Lord
Lift You high and dance for joy.
Oh nothing can separate me
From your wonderful, wonderful love.

(Diane Fung, Songs of Fellowship 1: 275)

Still no news

We are still waiting for Catherine's MRD test results.

On Saturday we finished the steroid treatment. We have already seen a marked improvement in Catherine's mobility and she even made an attempt at running today. She had a busy day at nursery and enjoyed playing at being the doctor with her friends. She also tried to make the nursery leader better! We think she was quite active and pushed herself today because she put herself to bed at 5.30pm.

We were also really pleased today that Catherine actually left some of her lunch on her plate! This sounds strange coming from her parents, but on the steroids she would usually eat a huge adult sized meal at lunch time. Her moods are also starting to stabilize and we are now continuing with her second chemotherapy phase.

Please continue to pray that the MRD results are good and that Catherine can continue on this regimen of treatment. Tomorrow we are taking Catherine for another blood test in preparation for her next lumbar punch and chemotherapy on Thursday.

A quiet day

Catherine has had a restful day today at home, colouring and doing her letters and watching Mary Poppins again. We had fun spelling words, and she enjoyed spelling her name with her magnetic letters. She also did a little bit of low-energy dancing and has been singing along to the songs in Mary Poppins, especially her 'tidy-up song' that they use at nursery. She now knows most of her alphabet and keeps pushing to have a go at writing. She told me today that she is going to have her portacath until she is five years old and now seems ok about it.

Please pray that Catherine doesn't get my virus, otherwise we will all be in hospital for a few days next week. Thank you.