Sunday, 29 March 2009

A parrot

To be honest, it was a bit of a shock ending up in hospital last week. It was different when it was expected during the intensive chemotherapy, but we did not anticipate that the maintenance treatment would make Catherine's immune system non-existent again. Maybe that was naive of me but we were told that in this phase, her neutrophil count would be balanced between 0.75 and 1.5. So when it got to 0.04 we were confused. Both times her counts have become this low we have been admitted to hospital. This time, an existing cold managed to work its way into an ear infection, but was enough to spike a temperature and make us pack our bags! We were very thankful that it was nothing more serious.

The doctor told us that they are still trying to balance the chemotherapy - each individual's bone marrow responds differently so they have to tailor the chemotherapy to each patient. Catherine will now need less chemotherapy to keep her neutrophils balanced between 0.75 and 1.5. It is not an exact science. Now that I know her immune system can drop again, I will be able to plan accordingly, and if her counts drop, I will be able to keep her off nursery/public transport until it starts to rise again. I hope this gets balanced soon.

It also made us think about how long we have have to go on treatment. Catherine will be four next Friday but she will still be on chemotherapy when she is five. She will then need to have regular blood tests to be monitored until she is ten.

I felt a bit sad about this yesterday, and Catherine asked me what was wrong (she is very observant). I said that I was feeling sad that she had had naughty blood cells. I told her that I hadn't wanted her to have been poorly. She was so funny. She looked at me and then started pulling silly faces at me to make me laugh (Catherine always resorts to doing silly things if she thinks she needs to cheer me up, and she has a whole range of funny faces that do the trick every time). So there we were, both giggling and laughing and totally ridiculous!

Catherine is now on top form, bounding around and giggling most of the time. Mostly a good girl, occasionally a mischief! She is now hula-hooping in the living room, beaming from ear to ear. Yesterday, she did her own version of Riverdance - her Irish dancing was hilarious. She is brilliant fun. We are very excited about her birthday this week. I always wonder whether I am more excited than Catherine, as I'm one of those weird mothers who love planning birthday parties for her! This year she has an animal themed party, and, after much deliberation, has decided on the animal she will be. She began by wanting to be a pig, then a monkey, then a duck and now we have made a firm decision. Catherine will be a parrot! A lady is making her a parrot costume in pink and yellow fabric (her favourite colours). She is very excited and has been asking what parrots say so that she can practice.

Thank you to everyone who visited and everyone who brought us 'meals on legs' last week. Hospital makes you feel more hungry, so we were so relieved that people brought us a cooked meal in the evenings. On our course, we did a week of learning about health issues and hospital visiting two weeks ago. At least it has given everyone an opportunity to perfect their pastoral visiting skills!

Please pray that they manage to work out the right amount of chemotherapy for Catherine soon. We will be at home until her counts improve.

Thursday, 26 March 2009

We are home!

We have left the hospital and Catherine is now tucked up asleep in her own bed this evening. Her temperature remained stable for 48 hours and her neutrophils are still creeping up, so Catherine's consultant said she was fine to go home. We are all really tired and Catherine will be off nursery until her neutrophils come up, but it is nice to be back home. I will write more soon, but for now I'm off to bed. Thanks again for all your prayers.

Wednesday, 25 March 2009

Good news!

We have good news! Today the results came back from the blood cultures and they were negative. This means that there are no serious infections lurking in Catherine! We are very thankful that it is nothing serious. Also, Catherine's temperature has remained stable today which is excellent news. The only thing we are waiting for now is for her neutrophil count to go up. It is still very low but creeping up gently. The haemotologist said today that if her temperature remains under control for 48hours, they will consider releasing us, although we will need to be careful to avoid bugs and germs if her neutrophils are still this low. Prayers are being answered! Thanks everyone.

Tuesday, 24 March 2009

Only three craft activities!

We are still in hospital. Today Catherine started a new combination of antibiotics as the first set were not having any effect. This afternoon, her temperature started to go down which is progress!

However, the rest of her blood counts have now taken a tumble, and her HB is now 7.6 whilst her neutrophils remain non-existent. This is all despite the fact that she has not had any chemotherapy for a week - the drugs have a delayed effect. So we are now anaemic and without an immune system. She will receive a blood transfusion tomorrow morning to improve her haemoglobin levels. This will take four hours attached to 'Melody' her drip.

Her ears were painful again this evening, but her temperature did not go higher than 37.

I still find this all bizarre considering we are in the maintenance phase of treatment, but hopefully they will be able to reduce her chemotherapy so that she doesn't get quite so neutropenic next time.

We will be in hospital either until her temperature has been reasonable for 48hrs after treatment with antibiotics or until her white cell count improves and the infection clears up.

Today we only managed three craft activities as we had some non-infectious (!) friends to come and see us. Tomorrow Catherine has plenty more activities lined up! I am amazed at Catherine during this hospital stay because she has not complained once about being there. She has not asked to come home, and only once said she wanted to go to school instead. She is missing her friends though, but has been fine about the fact that we need to stay in hospital for however long it takes. She has also spent time today charming the consultant - I think she is working hard on becoming his favourite!

Monday, 23 March 2009

Hottest yet

We are still in hospital. We had a better day today. Catherine has been up and about doing crafts with us rather than watching DVD's and having cuddles. Her temperature went down a bit today but then went up this evening to 39.1. She also had a lot of pain in her right ear again. The doctors are pretty much convinced that an ear infection is the culprit, but are still waiting for the test results from blood cultures and swabs to confirm that this is the only problem.

We also found out today that her blood results have gone down even further, so the chemo is still doing its thing and continuing to wipe the immune system on its way. We are waiting for its effects to wear off so that her counts, and her immune system, will start to rise again.

Today, we achieved seven craft activities together to keep Catherine amused - we began at 10am and worked through continuously until 3pm! Catherine also received some germ-free visitors and our friends have resumed their 'meals on legs' service which is gratefully received! She also received a lovely book, hand-made by all the children at her nursery. It had to be read to her this evening before bed, and I imagine this will be the bedtime book of choice for a while yet. Move over Hairy Maclary!

We need her temperature to come down, any infection to go away and her neutrophil count to rise before we can go home. They will consider changing her antibiotics if her temperature hasn't started to sort itself out again by tomorrow lunchtime.

Mark and I were talking today and we thought it was strange how much there is to do in hospital. You would think it would be long hours of boredom, but looking after Catherine there always seems to be something for us to do!

Sunday, 22 March 2009

Mother's Day

So we are in hospital. It was odd walking in to our side room (Catherine always gets one of these when she has no immune system). It felt surreal, like how you feel when looking round a Travellodge room, seeing whether there is a TV, kettle etc. We were pleased to see a TV and DVD player and a nice big window. This hospital room is light and airy and not claustrophobic like some we have been in, so that cheered us up. We also found out that if we had phoned an hour earlier, the ward would have been full, so we were fortunate that there was a room free.

Catherine's temperature stabilized at 37.9 degrees but tonight has gone up to 38.6 again. She has received her first two doses of two antibiotics. At the moment, the doctors believe she has an ear infection, but they have taken a number of swabs and blood tests to be on the safe side. She has spent most of the day on my lap having cuddles and watching her DVD player. She is feeling poorly and her ears and tummy hurt. We've watched Monsters inc again and Tinkerbell. I think Monsters inc is great because every time I watch it with Catherine, I see new detail in it. The best children's film makers are those that cater for the adult as well as the child.

So today I spent Mother's Day being a mother. Much different to what I expected, but still a mothering Sunday.

Going to hospital

Catherine's temperature went up to 38.7 so we are now on the way to hospital. Please pray that the infection goes quickly and that treatment is amazingly effective. Generally the course of intravenous antibiotics takes a few days to administer. We will be taking a suitcase. Please keep the prayers coming.

Saturday, 21 March 2009

Results are in... no neutrophils!

We've just had the results of Catherine's blood test - she has no neutrophils! I am surprised that during the maintenance phase her neutrophils have dropped so low again. The low neutrophils are purely down to the effects of the chemotherapy on the bone marrow, but in the maintenance phase, they try and balance her neutrophils so they don't go below 0.75. The balance hasn't been found yet! It explains her fluctuating temperature as we have observed before that when she has no neutrophils, her temperature bounces around all over the place!

We have also had the results back from the 'infection test' and her CRP is 35 (normal CRP is 5 and severe infection is 100-200). So basically, she has a mild infection/virus but has no neutrophils to fight it which is why she has been struggling. She will not need antibiotics. Once her neutrophils start coming back up, we will see an improvement. Looks like she will be off school for a couple of days (this will not go down well as she is a socialite). How many craft activities and books will we get through in the next few days - your guess is as good as mine?

For the prayer warriors out there, please continue to pray that this remains only a minor infection and that it goes quickly. Also please pray for Wouter and family tonight, as he is in a similar situation this evening http://krokkenoster.wordpress.com/

As I sat in the hospital today with my girl and a very tired husband, I thought how odd it was that we were in a hospital with a cold and tummy upset. Normally, with a child not on this treatment, you would look after them at home without too much worry. How strange...

Teddy on duty

Catherine is still feeling poorly so we went and had a blood test taken at the hospital to check there are no traces of infection in the blood. She has been very cuddly today, and we had some time sitting outside together in the sunshine. Her favourite teddy has not been far from her side today - when she doesn't feel very well she plays with his scarf!

When we were at the hospital she made us laugh. When asked about brothers and sisters she said she didn't need one because 'I am getting a cat instead'!!!

Catherine's temperature is going up and down again, but hasn't gone any higher than 37.5.

Friday, 20 March 2009

Still poorly

Catherine is feeling unwell. She definitely has a cold but she is also feeling miserable. She came home early from nursery today and sat on the sofa feeling fed up. She then had a nap and ate a small bowl of pasta and watched CBeebies before going back to bed. It doesn't help that the steroids cause her sleep to be broken anyway and that she has practically no immune system at the moment! She doesn't have a temperature which is good, because if her temperature goes over 38.5 degrees, she would need to stay in hospital for treatment.

Please pray that she does not get a temperature and that she feels better soon. She was very frustrated today because she had to come home from school and didn't feel well enough for the picnic we had planned.

Thursday, 19 March 2009

Bit poorly

Catherine is feeling poorly today. This week she had chemotherapy and so she now needs steroids until Saturday. She is feeling a bit out of sorts and has wanted lots of cuddles with her mum today. She also got the nursery leader to send me a text today, telling me how she missed us and that she loves 'mummy and daddy'. I can tell she is not feeling well as normally she bounds into nursery without even saying goodbye to us! She is feeling very sensitive, partly because of the steroids, but also because she feels a bit poorly. It is odd now because we have really noticed a difference in Catherine this week, mainly because she has felt good for so long. Please keep her in your prayers.

Wednesday, 18 March 2009

0.4

We've also just found out that she has only 0.4 neutrophils (which means she is susceptible to infection). She was quite miserable and cuddly this evening, so I put her to bed early in the hope that she feels more cheerful tomorrow.

Painful fizzily feet

Catherine had a difficult night last night. She received her Vincristine chemotherapy yesterday and then came into our bedroom at 2am with 'fizzly painful feet'. It took quite a while for the pain to settle, and I knew it felt bad by the look on her face. The painkiller helped and she also likes a cool damp cloth to wrap her feet in (her idea) and this also seemed to help. I felt sorry for her and her little feet! The problem with Vincristine is that whilst it is a very effective drug, it causes problems with the nerve endings which mean that it can cause a pins and needles sensation and pain in the feet, particularly at night. Please pray that she has a good night tonight, and that these side effects calm down. Thankyou.

Sunday, 15 March 2009

Update

Catherine is doing well on her maintenance treatment although today she has been tired, headachy and has a bit of a sniffle. On Tuesday she will be at hospital for her Vincristine (chemotherapy) and blood test. Her hair is really growing now, although she is not impressed with it. It is very different from her original hair as it is now darker (before treatment she was dark blonde). So everytime anyone compliments her hair she gets quite sulky about it all. It's a shame really because I think she will look beautiful with darker hair as she has quite dark skin.

Catherine will be four at the beginning of April, and she is now getting excited. She loves birthdays and is a total party animal! I'm so pleased that the treatment has done nothing to dent her natural confidence and outgoing nature. We are looking forward to celebrating the big day with her, which is made more momentous by the success of her treatment. Thanks God!

Tuesday, 10 March 2009

Deep questions...

Today as part of training we had a talk from Emma, a survivor of cancer, a mum, wife and probably many other things too! It sounded so familiar as this young woman discussed things such as low immunity, neutrophils and various chemotherapy drugs. Emma's character reminded me so much of Catherine today - bubbly and outgoing - and some of the things she spoke about resonated with our own experiences. Thankyou, Emma, for being courageous enough to share your experiences with us.

The results of Catherine's blood tests came through today, and we were so pleased because her netrophils are high enough, and her immunity is good enough, for her to go on her 'school trip' to the zoo tomorrow. She is so excited. Tonight she prayed that it would not rain so they would all be able to go. We also bought her a T-Shirt with a monkey on it. Catherine is going to wear it tomorrow and has christened it her 'zoo T-Shirt'!

As we put her to bed this evening, she suddenly said 'Daddy, why did Jesus have to die?'. All I can say is that I am pleased she asked Mark - I was quite happy to leave the discussion about Jesus dying for our sins to him this evening.

Email:
catherineisgreat88@rocketmail.com

Catherine's dream


Catherine has wanted to learn ballet for ages. Some friends of ours kindly gave us some ballet clothes, and Catherine has hardly been out of them. Just before Catherine's diagnosis, we took her to her first ballet lesson. I found it odd at the time because she didn't want to go back after the first lesson because she felt tired. Now she is starting to get excited about ballet again and she has two ballet DVDs that she watches, dancing around in her new ballet clothes. Looks like we're going to have to find her some proper ballet lessons!

She is doing really well at the moment. She feels good and is still on track for the trip to the zoo tomorrow. She is having her blood test today but we expect her counts to be good despite her daily oral chemotherapy.

Friday, 6 March 2009

It went well!

Catherine's lumber puncture went well on Wednesday, and she recovered so quickly from the general anaesthetic that she asked to go to nursery in the afternoon!

Her hair is now becoming more prominent although it is a mixture of blonde and very dark brown! I'm not quite sure what she will make of it, particularly after wanting very blonde hair, but that remains to be seen.

She has had a good couple of days and is now starting to sleep better again, which is a relief to all concerned. If her blood results are good enough next week, there are plans to take her to the zoo. This will be very exciting for her, especially as she keeps talking about having an animal party for her birthday.

Mark and I have not been feeling too well this week, but hopefully things will pick up again next week and we will be back on form once more.

Wednesday, 4 March 2009

Hospital day!

Tomorrow Catherine is having general anaesthetic, a lumber puncture and chemotherapy. This means that from 3am she can no longer have anything to eat, and from 7am she cannot have any more fluids until after the procedure. Mark is now trying to persuade Catherine to eat a banana so that she is not famished in the morning!

Please pray that the procedure goes well and that she doesn't get too hungry while waiting (she has just refused the banana!).

Thankyou.

Tuesday, 3 March 2009

Today

My child had cancer.

Sometimes I catch myself thinking this, almost slightly shocked. It still seems quite unbelievable that my child, that little blonde thing full of energy and vitality, had a form of cancer. I can remember those early days when she was first diagnosed; the moment when David, the lovely nurse who I will always remember, came in and told us that 'it was bad news and we needed to leave Catherine with him and go to speak with the doctors'.

Catherine was asleep on the bed with her teddy and I remember looking at her and prayed 'O, Lord. Please be in this somewhere'. She looked so incredibly beautiful asleep and I remember feeling a sense of absolute horror at the idea of what we might be told. I remember Mark and I looking at eachother and taking eachother's hand before walking almost what seemed to me like an endless walk to the room where two doctors waited expectedly, looking pale and concerned, holding a huge folder. The tea tray and teapot were on the table.

Those moments will remain with me, somewhere deep inside. It is hard to describe the feelings that go through you when you first find out something of this nature. The disbelief; the shock; the sense that you are being plunged headlong into the unknown. But above all, this overwhelming sense of heartache: that news, for the first few days, broke my heart.

The reason I am writing this today is because I just had that thought again as I was wandering around my flat, 'My child had cancer'. It stops me in my tracks for a few seconds.

I just thank God that He was at work in this situation and that He is still working in her preventative treatment today.

Please continue to pray for our girl. I love her so much.

(By the way, the time on this blog is not correct. I was not up at 4am writing this, thankfully!)

Monday, 2 March 2009

Sleepless

Catherine is doing well on her maintenance treatment, and day by day is starting to be more her old self. Her sense of independence is coming back and as she feels better after the intensive block, she is starting to push the boundaries again! She has also had problems getting to sleep at night, mainly because she just doesn't feel tired enough. Someone suggested to me that when you become very anaemic, like Catherine has been, the heart muscle overcompensates. So if that is correct, now that Catherine is not anaemic, she has a powerful heart muscle, lots of oxygen rushing round her body and not enough muscle strength to run off the energy - that should be enough to keep her awake!

On Thursday we are going to hospital for another general anaesthetic and intrathecal chemotherapy to protect her central nervous system. Please pray that this goes smoothly as her last one was a bit concerning as they needed to try several times to get the needle in the right place for the lumber puncture.