Thursday, 30 April 2009

Happy day

Catherine had great fun today as she did her first marbling using inks. She made some lovely patterns and was so excited that she bounced up and down on the chair. We then had a nice lunch together before she came to the hairdressers with me. She loved watching me have my hair cut, and kept blowing on my fringe pretending to be a hairdryer. Catherine's hair is still very short but it seems to be getting thicker by the day. The hairdresser treated her to some free hair glitter because she was so well behaved and was so interested in the perm rollers and everything the hairdresser was doing. We had one interesting moment when a lady at the salon asked me whether I had got my daughter's hair cut 'that short'. I suppose it is unusual to have a little girl in such a pink dress with such short hair. It put me in a bit of an awkward situation, so all I said was that she lost her hair but that it was growing back. Catherine was with me and she didn't need a big reaction from someone that our little girl was having chemo. I just allowed the lady to put two-and-two together. She was very good about it and told Catherine that she looked like Sinead O'Connor. Tomorrow we plan to take Catherine to an art gallery to see some 'big paintings'. She is very excited because she hasn't seen any big paintings before.

Wednesday, 29 April 2009

2 Corinthians 12:9-10

"But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."

Preparing for quarantine

Catherine is going into isolation from tomorrow from anyone who may have been in contact with chicken pox from the party last week, so we are preparing for quarantine. Her consultant has recommended that, because all of her nursery friends were in contact with chicken pox, and the majority have not had it, we need to keep her away from school when they are likely to become infectious. The good news is that she has neutrophils, so when she is off school it means she is not stuck indoors. She will be able to make little trips out, so I don't have to stress so much about how to entertain her with endless craft activities.

Catherine is quite looking forward to her 'holiday'. I haven't told her that her friends will most probably be in school because she will get upset, so holiday was the best way to explain it. Thankfully, one of her little friends has had chicken pox so she will be able to play with her in the days ahead. God gave me such a sociable child, which is fantastic but difficult for her when we have to do periods of isolation. We are going to try and make this a positive time for Catherine and to make it an opportunity for her to do some 'catch-up' on fun things that she missed out on during the more intensive treatments.

Yesterday Catherine told me about a dream she had. It sounded fantastic. She was a passenger in a rainbow-coloured space rocket, and she was very excited when she told me the dream. When she asked me what I had dreamt about, I decided to dodge the question by just saying my dream wasn't as nice as hers. How could I tell my child I had been dreaming about viruses.....?!? Rockets is a far better option.

Saturday, 25 April 2009

Not sure what's going on

Catherine is not eating much at the moment and has been very grumpy today. This evening she fell asleep without watching her usual session of 'Charlie and Lola' before bed. Please keep praying for protection for her. Thankyou.

Thursday, 23 April 2009

Chicken Pox Part II

In children who are not being treated with chemotherapy, chicken pox is not a major threat. However, for children on chemo with an impaired immune system, chicken pox can cause pneumonia or an inflamed brain. Therefore it is important both to manage the risk and prevent chicken pox from hitting the immune system.

Catherine went with her daddy to have her two injections today. She was very brave and came back with three stickers from the hospital. The chicken pox antibodies either help to relieve the severity of the virus or eliminate it. They only last for 28 days which means that if Catherine comes into contact with chicken pox again after 28 days, she will need to have another set of injections. If a child with an impaired immune system contracts chicken pox, they need to be in hospital for two weeks on anti-viral medications.

Sometimes when you see Catherine so well and active it is difficult to imagine that she is at any greater risk than any other child from something as simple as chicken pox. But she is at risk, and we have to live with this, and manage this, until she finishes her chemotherapy.

Wednesday, 22 April 2009

Chicken pox

One of Catherine's little friends has got chicken pox, and Catherine was playing with her yesterday during the peak infectious period.

In children who are receiving chemotherapy treatment, the chicken pox virus can potentially be very problematic. We've spoken to the hospital and will be given an appointment tomorrow to have an injection of antibodies. So we have a couple of important prayer points. Firstly for protection from this virus for Catherine, and also for tomorrow, as she will need to have two injections (and she has a bit of a phobia of needles now as you can imagine). Thankyou.

Saturday, 18 April 2009

Week of wierdness

This week has been quite odd in that Cath has been on steroids, so emotionally she has been all over the place. It has been a real rollercoaster for her: sad and clingy one minute and then bouncy and cheerful the next! Poor thing. Once Cath has had enough, she now goes and sits in bed under her duvet until she feels in a better mood. Yesterday she put herself to bed for a nap, just because she was fed up of being grumpy.

We've had some good times though, as we have been off for the school holidays. Catherine has started making up her own songs now and putting words to them. Yesterday, she decided to sing a song about Jesus and it was very funny. The lyrics were 'I love Jesus very much and I don't want them to put him in a cage...'. I've heard about putting God in a box before, but never Jesus in a cage. Original, don't you think?

We went to the cinema today as Catherine has neutrophils, and she saw her first 3D film. The big glasses dwarfed her, and she felt like a big girl as she had her own seat! She really enjoyed most of it, but was a bit scared of the octopus in the film. Also, there was footage of a flying needle which Catherine always reacts to (she hates any sort of needles now), but she soon worked out that it was only part of the pretend film. She also found it odd that some children were scared of the octopus, and others weren't. I think she is working out that not everyone feels the same about everything.

Wednesday, 15 April 2009

Catherine's treatment

A few friends have been asking about Catherine's chemotherapy treatment at the moment, and as I realized I haven't explained this on the blog for a long while, here goes!

This phase of treatment is called 'Maintenance treatment'.

Catherine will be on Chemotherapy treatment until October 2010.

Every evening, Catherine receives a dose of chemotherapy 'medicine'.

On Thursdays, she also receives a different chemotherapy medicine - Methotrexate.

Once a month, she receives Vincristine through her portacath, followed by five days of steroid.

Once a quarter, Catherine receives chemotherapy into her spinal fluid (she is anesthetized for this, and receives a lumbar puncture whilst asleep).

So basically, this is the treatment schedule until October 2010.

She will also continue to have a weekly blood test to check her blood counts, and also she will be given a medicine to prevent chest infections. We have to keep a check on neutrophils in particular, as her immune system is still affected by the chemotherapy.

Please continue to pray that she doesn't get any infections or side effects from her treatment.

Tuesday, 14 April 2009

Loving her hair...

We've been to the hospital today for another dose of Vincristine chemotherapy. It is the first time Catherine has ventured out in public without her wig, and today she decided to wear one of the beautiful hats that we were sent a while back as a gift; a beige one with a blue flower. She looked lovely. She was measured today, and it is the first time in ages that she has grown taller and put on a sensible amount of weight.

She is now very conscious that she has 'short hair' as she can feel how soft it is on her head. She is also very proud of her hair. I think she looks beautiful with her short hair, but as it was school holidays today, we had the usual nasty comment from a young boy. Unlike previously, this boy intended to cause a reaction, as he came up to Catherine and said she looked like a boy. Catherine was quite cross and was pleased when his mum came and told him off for being rude.

As it is school holidays today, we took Catherine for a train ride, bought doughnuts and a new book for Catherine: Goldilocks and the three bears. She is now almost reading the whole book! It is nice and straightforward and she is so pleased to almost be able to read the whole book all the way through. My girl is growing up.

Thursday, 9 April 2009

Easter

Catherine has been quite good today although she was a bit fragile this afternoon. Please pray that she remains well and germ free over the Easter weekend as we will be leading meetings and praise parties. Also, please pray that despite feeling a bit fragile, she will be able to enjoy taking part in the activities this weekend. Thankyou.

As Good Friday will shortly be upon us, and as I hear my husband giving Catherine her night-time dose of chemotherapy, I think it is time for bed. We hope you have a good Easter.

Tuesday, 7 April 2009

Good times :-)

Well, the good news is that Catherine's blood results are very good today, and she has 3.9 neutrophils which is the best immune system she's had for a long while. Three cheers all round! This means that when she is on holiday from nursery next week, we might actually be able to go out and about. Trains and buses, here we come! She is feeling good at the moment, and is much less reliant on me carrying her around - she likes to go to the park and play now after nursery, and it is so good for her being out and about after being stuck at home for so long. I plan to put some party pics up soon, so watch this space!

Monday, 6 April 2009

My thoughts for a long while

When Catherine was born, I knew instinctively that something was wrong. Catherine did not feed well and was not putting on much weight, nor was she sleeping. She was constantly crying and we had a really difficult start with her. I remember asking the Health Visitor outright whether she was ok. I even worried at one point that she had a life threatening illness. By the time she was two, this feeling started to subside, but for a long while I always felt like something was not quite right.

We had a lecture today on genetics and, whilst thankfully the illness was not genetic in Catherine's case, it reminded me of how everything in life revolves around cells and DNA. It also reminded me that the doctors had suggested Catherine could have been born with the beginnings of her illness. This link explains more:

http://news.bbc.co.uk/2/hi/health/492349.stm

I just wanted to say that I do think I knew something was wrong at that time, despite the Health Visitor thinking that I was overreacting, but I realize that despite the pressure that was placed on me as a mother in those early days, they would never have been able to pinpoint what was actually wrong at that stage.

Friday, 3 April 2009

Birthday Girl!

Catherine is now four! She has had a good birthday but I think she still feels the highlight is to come as her party is tomorrow. She is feeling well and happy and is looking forward to her birthday celebrations tomorrow. Thank you for all her cards and e-cards - she loved receiving them!

She has been very funny today, and after opening her presents this morning, she broke down in big sobs! Mark and I just looked at eachother in amazement before asking her what was wrong. 'Mummy', she said, 'I don't want to be 4, I want to be 3'. It seems that she likes the number 3 better than the number four, mainly because she can't write 4 as easily as she can 3! Also, she knows that now she is four she will be able to help mummy with some 'jobs' i.e. tidying her bedroom more!

We are planning to get a new family photo taken to celebrate Catherine becoming a 'big girl'. I was waiting until Catherine had some more hair so that she doesn't feel self conscious, and now that she has, we will be having a celebratory photo taken soon.

Also, I just wanted to take some time to thank Suzanne especially today. Suzanne's post on her blog today about Wouter's fourth birthday on Sunday (http://krokkenoster.wordpress.com) gave me the courage to admit that I, too, experienced mixed feelings about my child's birthday. Catherine's approaching birthday made me realize that without God's healing and the chemotherapy treatment, Catherine would not have seen her fourth birthday. It also made me think again about the treatment ahead, which will continue until she is 5.

I have spent time giving thanks for the life and healing of my child, but it does bring up the emotions too. Don't think I'm an emotional wreck, though, as I'm not, and I am enjoying the celebrations! But thank you, Suzanne, for being so honest that I now don't feel alone in feeling this way on what should ordinarily, in different circumstances, have been a carefree time of celebration.

Wednesday, 1 April 2009

Off duty

I am officially off-duty! Catherine's blood counts are now good (HB 10.6, Platelets 530) and her neutrophils are back up to 2.0 which means my duties as craft co-ordinator, homeschooler and general playmate are no longer required during the day. Catherine has gone back to nursery yesterday afternoon, and is in the best physical shape I have seen her in for a long while.

I feel very successful, though, because despite her tendency to be a social animal and miss her friends, she said yesterday that she didn't want to go to nursery because she had enjoyed being with me (sorry Nikki, but I feel so pleased that all my efforts have managed to entertain her!). We have done heaps of things together; Cath has been painting, doing crafts and collages, word games, number games, imaginary playtime and reading. She is heaps of fun.

Catherine's hair is growing back beautifully and she is energetic, vibrant and full of giggles. Her mother, on the other hand, is now worn out and has been reduced to an afternoon nap! That proves I should never be off duty - it is bad for me! Neither Mark or I have had the chance to catch up yet on the missing sleep from last week, so really I should not be surprised that I'm in need of forty winks. We also have a lot of work on at the moment.

It seemed a shame to be restarting Catherine's oral chemotherapy again last night, but the good news is that the doctors have reduced her dose, which means that we may possibly avoid another neutrophil crisis. They are now trying to balance the dose to keep her neutrophils within 0.75 and 1.75.

Please pray that Catherine remains well for her birthday party on Saturday and that they manage to balance her chemotherapy. Also please pray for renewed energy for her parents. Thankyou.