Monday, 23 February 2009

Schoolgirl

This week we are looking at schools for Catherine! It is hard to believe that this year, Catherine will be old enough to start school. She is more than ready, though, as she really loves nursery and keeps asking me to do reading, writing and numbers with her. You may remember me writing that it would be good for Catherine to have hair in time for school. Well, today, I was stroking her head and could actually feel a soft covering of hair! It feels so nice. Poor Catherine will now have to put up with me stroking her head until her hair is longer!

We are also trying to organize a birthday party, which this year, Catherine wants to be along the theme of animals. She has been trying to decide what animal she wants to be, and keeps changing her mind. She started off wanting to be a pig, then a monkey and now she wants to be a duck. She has even perfected her own 'duck dance' for the part! I imagine she will change her mind between now and the birthday.

Catherine is doing really well on the maintenance treatment. Tomorrow, the nurse will come and check her bloods, but we imagine her haemoglobin is high as she has been very rosy-cheeked the last few days. It has been quite unusual seeing her so pink when for a long while she was constantly at various stages of anaemia. Thankyou for continuing to keep Catherine in your thoughts and prayers.

Friday, 20 February 2009

Scootering!

Since Catherine's chemotherapy on Monday she is noticeably more tired again, but on Wednesday she did something she hasn't done for ages - she scootered her way to nursery! She started out using her scooter and when we got to the hill, she got off and pulled her scooter up behind her. She then carried on all the way to school! I was so proud of her. This is a big step as usually she has always asked to be carried. Today she has also spent time bouncing on a trampoline, which can only mean that he muscle strength will improve. Her stamina is still low, but we're hoping that this will improve at the chemotherapy becomes less intense. She's having a good day today and is enjoying a few days 'holiday'.

Tuesday, 17 February 2009

'She's got no hair'

The school holidays have not proved too helpful for Catherine the past few days. Now that we can get out and about again as her immune system is much improved, she is getting a lot of reactions from members of the public. This is mainly because she has been very confident not wearing her hair or her hat, but we have always been with friends, family or at hospital! Now Catherine is beginning to notice the reactions from other people. It is much worse from the children than teenagers or adults. One little boy came up to Catherine yesterday and looked her straight in the eyes and said loudly 'you've got no hair' before turning to his mum and saying 'she's got no hair'. Another little girl stood and looked at her with her mouth wide open. The parents of these children, once they notice, have been helpful at distracting their children and taking them away.

Today, Catherine was in the back of the car when she noticed she could see herself in the interior mirror. She got really upset saying she didn't want to see her head because she didn't like it. I feel very sad for her and it seemed a shame today having to ask her to wear her hat or her hair because all the children were around. I'm hoping she will have a reasonable amount of hair before she starts school in September.

Catherine's chemotherapy went well on Monday - she had Vincristine through her portacath. We are now on the maintenance phase fo her treatment which involves three main chemo drugs: Vincristine which we are given at the hospital, Methotrexate and Mercaptapurine (given at home by mouth). Catherine will need to go for another lumbar puncture in two weeks time. The doctor checked her legs and feet and could see no damage from the Vincristine (this chemotherapy drug can cause nerve damage and can make children walk on tip-toe). This is very good news.

The chemotherapy has slowed Catherine's growth (although she is still growing, albeit slowly!) and she is clearly not as physically strong as she once was. However, she is gaining weight, which is great. She also has about a millimetre of very light blonde hair all over her head, which is also a good start.

Please pray that she doesn't lose any more confidence because people are noticing her lack of hair, and that she has a reasonable covering of hair for when she starts school. Also that her body continues to recover well from the recent heavy chemotherapy. Thankyou.

Sunday, 15 February 2009

Who nose why?

Catherine's latest favourite film is Tinkerbell, and yesterday I noticed that Catherine's face was very similar to Tinkerbell on the film, so I said to her that I thought she looked a bit like Tink. Catherine was most confused and started stroking her head, explaining that she couldn't look anything like Tinkerbell 'cos Tinkerbell's hair hasn't disappeared like mine'. It was at this moment that I realised Catherine actually understood that she still has no hair. Previously she had never been bothered, so I'm glad that it is starting to come back now before she finds it more of a problem.

At night time, we have bedtime prayers and a story and I give her a cuddle before she goes to sleep. Last night was funny, because just as she dozed off, she grabbed my nose! Not painfully, thankfully, but she still went to sleep holding my nose! I have no idea why, but then Catherine was so deeply asleep that she probably didn't either. Eventually I managed to prize her hand from my nose before leaving the room quietly as usual.

Tomorrow we are receiving the next dose of chemotherapy. Unfortunately, she will also have a few days of steroids as well - frequently known by parents of children being treated for leukaemia as 'grumpy medicine'. Please pray that this goes well and that side effects are minimal. We are hoping that she can get a bit more strength in her muscles to start at basic ballet - she has been asking us when she can start!

Friday, 13 February 2009

Great results!

Catherine's blood results were excellent today! Her haemoglobin levels, platelets and neutrophils are all extremely good which means that we will be able to start the maintenance phase of chemotherapy on Monday. This is excellent news for Catherine and means that she is now completely through the difficult intensive treatment!

Catherine is having difficult sleeping at the moment - we're not sure why, but at night times she just isn't that tired. She also now has enough energy to be a mischief again, which means that we are adapting to life with a 'normal' three-year-old.

On Monday, Catherine will be able to receive her Vincristine, which is the first of the maintenance drugs.

Wednesday, 11 February 2009

Multicoloured hair!!!

Catherine has really enjoyed being back at school the past few days, and has a renewed sense of energy at the moment. She took all her coloured wigs (pink, purple and orange!) to nursery and let everyone try them on yesterday. Lots of photographs were taken of all her friends in Catherine's 'hair' so I am looking forward to seeing them! One of the nursery leaders is also helping Catherine with her reading, as she is really getting into books now.

Tomorrow Catherine is having a photography session with us. We have chosen a new dress for her, and I think she will prefer to have her photo taken 'without hair', but we will see when the time comes. She looks very cute without hair, and some VERY blonde hair is starting to come through now, although it will take a long time to come back fully.

We need to have another blood test on Friday to check her haemoglobin levels, but otherwise there should be no more hospital visits until next Monday.

Thankyou for your continued prayers for Catherine

Monday, 9 February 2009

A 'new normality'

We had our appointment with the Consultant today and she is very pleased with Catherine's progress. Catherine's neutrophils were still too low to begin the next phase of treatment, so this has been delayed until Monday. The Consultant was really pleased that Catherine has had no infections during this intensive treatment and did not seem concerned by the number of blood transfusions and platelet transfusions Catherine has had over the past two weeks.

The Consultant also said that we should be able to travel on trains etc again soon, as the next stage of treatment should be managed so that she doesn't get too susceptible to infection. This has opened the horizon to us again, as we have been very restricted the last few months. It means that we now will need to get used to a 'new normality'; one that will involve fewer hospital visits, more freedom and more fun!

At the moment, Catherine always wants to be carried everywhere, and the Consultant explained that the chemotherapy will have weakened her and it will take time for her to build up stamina and muscle power again. She really wants ballet lessons, so we are using that as an incentive to inspire her to walk a little bit more every day. Even the fact that she is talking about wanting to do physical activities again is a big change! For ages, she has had no interest in any of the adventurous things she used to enjoy (she used to be a very competent climber and loved any physical activity). It means she is turning the corner.

We are so pleased that this phase has come to an end. Whilst she will remain on treatment until she is five, we feel such relief that she no longer has to deal with this intensive treatment. I will explain more about the next level of treatment soon.

Tonight, Catherine is sitting up in bed talking to her teddies and singing. In fact, she hasn't stopped talking all day! THIS is the Catherine I remember...

Sunday, 8 February 2009

Turning the corner

Well, the good news is that Catherine's blood count is starting to recover! Yesterday's blood test revealed that she still has haemoglobin, and her neutrophils are very slowly creeping up in number. She is still susceptable to infection, but is going stir crazy being at home now she has so much energy! She also has a lot of energy but is quite fed up and difficult. I think she is basically frustrated and bored and will really benefit from going back to nursery soon.

Tomorrow marks the end of the intensification block of treatment. We will be speaking to the consultant about the maintenance phase of treatment which will go on until Catherine is five years old. She will receive Vincristine chemotherapy tomorrow if her neutrophils have reached 0.75 or above.

I am starting to think I could do with a holiday at some point soon! The tiredness of the past few months is starting to catch up with me. We also didn't really get a break at Christmas, so now that the intensive block is finished, we're hoping that things will start to balance out again soon. Please continue to pray for Catherine; most specifically that she remains infection free and has no long term side effects from the chemotherapy. Also that the disease will never return again. Thankyou.

Thursday, 5 February 2009

Off to hospital for third transfusion in one-and-a-half weeks!

After yesterday's energy and excitement, Catherine was very miserable this morning before we went to the hospital. We've just had her blood results through, and they are just about the lowest she has been so far. Her haemoglobin is 7.1 , which means a blood transfusion this afternoon.

Her neutrophils at now only 0.09, so she is severely neutropenic. Her platelets, though, are now much better at 100. So we are now taking our little one to the hospital again this afternoon for her third blood transfusion in a week-and-a-half.

Poor kid.

Wednesday, 4 February 2009

A snow-Catherine


Slow down, I can't keep up!

How many activities can one child fit into one day? Making tents in the kitchen, dressing up, packing a suitcase to go 'on holiday', colouring, drawing, writing, dancing, singing, making cards...you name it, Catherine has done it! Its great to see her feeling so much better after these last months. But, hey, she's going to wear me out at this rate!!!!

I am being reminded of Catherine's huge stamina and energy before her illness. Phew, I need a cup of tea and a sit down...

Tomorrow we have another blood test at the hospital to see if her blood counts are coming back up after the intensive chemotherapy phase. If today is anything to go by, she is doing well.

Tuesday, 3 February 2009

Platelets

Catherine had her platelet transfusion yesterday. We were so lucky. There were only two nurses who had made it to work because of the snow, and thankfully the platelets were actually delivered. We needed to be at the hospital early, because the platelets would have expired by the end of the day. Catherine received her platelets and we were able to walk home from the hospital by early afternoon. We walked through a nearby park, and Catherine enjoyed seeing all the snowmen that the children had created. It was a real winter wonderland!

We were just so grateful that the nurses walked to work that day (up to an hour's walk for each of them). Catherine was also pleased because she had her own dedicated playworker - there was only one other patient on the day patients ward, and he was a teenager happily playing on the computer.

Catherine has had a good day today, playing in the snow. Her neutrophils are still low but she is feeling much better. I'm hoping she might be able to go back to nursery at the end of the week, if only for the fact she will be bored by then.

Monday, 2 February 2009

A lesson in trust

Catherine and I played a game the other day - it was her idea! She hid her drawings around the room and I had to find them. However, I had to find them WITH MY EYES CLOSED as she led me round the room by my hand. It was SO hard. I kept wanting to open my eyes and see where I was going, and I found it really hard to trust that my little girl would guide me around tables, chairs and toys. But Catherine told me I was ok, and that she would guide me. It was still hard, though.

Then, it was Catherine's turn to be led. I hid the drawings, she closed her eyes tightly and said 'Go on, mummy'. I can honestly say I led that child around the room and she didn't open her eyes once. She was so relaxed and content that I would lead her the right way, that she felt no need at all to open her eyes.

This is how it has been through Catherine's treatment. Despite everything, she has trusted me completely. It doesn't matter what procedure, whether it hurts or whether she 'doesn't love it', it is like in that game: she holds my hand and lets me lead her through. She has never disbelieved that it was not for her long-term benefit. She has always trusted.

But it hasn't just been like that for Catherine and her treatment. I have learnt to really trust as well. Catherine's diagnosis has been a real crash course in trusting God. Whatever has happened, I have trusted that God will see us through. I have trusted that God will ease the way and help us miss bumping into the obstacles on the path ahead. And God has kept us protected: He has answered our prayers. Trust isn't easy, but I'm learning how to do it because of this situation. Maybe one day I'll be able to do it keeping my eyes completely closed all the way along.

Sunday, 1 February 2009

New Hair, New Platelets!!!!

Catherine's hair is starting to grow back and it is white blonde!!!! Catherine has been praying for blonde hair - little did we expect that it would look anything like this! Originally she had dark blonde hair. Not knowing about the effects of chemotherapy on hair, we wonder what will eventually happen. Will it remain white blonde or return to its original colour?

She has been quite miserable today and a bit clingy. She had her blood test earlier, and she will need to have a platelet transfusion tomorrow. Her platelets have gone down to 11 and they transfuse at 10. This will be the first one she has had and will take place tomorrow morning. I noticed today that some bruises were looking particularly dark, so had a feeling we would be back to the hospital tomorrow. Her haemoglobin is fine (9.5) and her neutrophils are low (0.34), which means she is energetic but susceptible to infection. Catherine will be more cheerful about going to the hospital, though, as it is snowing heavily here at the moment. She will be so excited to see the snow.

For those of you who are thinking about donating blood, there is a 'National Platelet Crisis' at the moment, and it will take 12 hours to get Catherine her platelets. Whilst she is not at risk, it really makes you think about the importance of blood donation.

Yesterday we had a small incident where Catherine bit her fingernail and caused it to bleed. I had a momentary concern about her lack of platelets (they clot the blood to stop bleeding) but then the blood flow stopped, so that was ok. Catherine thought it was funny because she didn't want to leak out the blood that they put in her on Friday! The nurse said that we just need to monitor her until the morning, and any concerns, we can just take her in. We are not worried.

Please continue to pray that she does not get an infection or any side effects from treatment, either short term side effects or long term. She continues to do well through this phase of treatment, and we are now looking forward to starting the maintenance phase. Her blood counts need to recover from their low levels before I start any sort of celebration, but we are so thankful that she is getting through this treatment with only minor issues.