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.
Sunday, 29 March 2009
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!
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!
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.
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.
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