Hi, it's Holly again and I must say I'm really enjoying being in contol of the blog.
:)
Today has been good. This morning I just chilled on the sofa and then at lunch time mum took me to Harlow to do some shopping. I must say that Harlow shopping centre is not as good as Brookfield. We went to Primark, New Look, Peacocks, Next and matalan but all I managed to find was a pair of leggings.
Mum has taken Izzy to a garden centre to meet up with Aunty Clare, Millie and Gracie.(I really could not be bothered to go as I am still recovering from my long walks around the shops.) LOL.
I'm off to dads tonight to have my fave chicken fajitas....YUM!!!!! I must make sure I am back for 10 though for my feed.(Mum will be cross if I'm late as she likes to go to bed by 10.)
:)xxxxxxxxxx
Friday 31 July 2009
Thursday 30 July 2009
Chocolate Crispy Cakes
Hi, it's Holly here, this is the first post I have ever done so forgive me if it's not as good as mums.
I have had a lovely day today. The nurse came in the morning and did a full blood count. My neutrophils were 0.93 so I needed GCSF.
Then we all walked to the shop to get the very important chocolate I needed to make to make my crispy cakes. I made them at home after and I have to say they were LOVELY!!!!!!
Well, I'm gonna go to bed now but first I just want to say a huge hello to grandad who has come over from Ireland today.(I love having hime here!)
I have had a lovely day today. The nurse came in the morning and did a full blood count. My neutrophils were 0.93 so I needed GCSF.
Then we all walked to the shop to get the very important chocolate I needed to make to make my crispy cakes. I made them at home after and I have to say they were LOVELY!!!!!!
Well, I'm gonna go to bed now but first I just want to say a huge hello to grandad who has come over from Ireland today.(I love having hime here!)
Saturday 25 July 2009
Home
Its been a whirlwind couple of days. Getting back into the swing of "normality" has been very welcome.
Normal, however, is different. Our normal means almost daily nurses visits and blood counts. Our normal (we were told) would be regular visits to the local hospital for platelets and blood transfusions. Luckily, this hasn't happened this week. Holly's counts have remained good so no transfusions have been needed. We have been able to be at home, go shopping (Holly is very good at this!) and go out.
I have got to grips with all the meds, 5 in the morning and 5 in the evening (6 at the weekend). Holly has got to grips with her ng tube (flushing it and putting in her meds). I have mastered her feed and pump. I think we are achieving "normal".
Holly has spent today at Dad and Kirstys and has had a great time.
I spent the afternoon at a steam rally near Hemel Hempstead. It was a fab day, Harry loved all the engines and tractors. He was amazed at the shire horses and the big balloon. It was all for charity. When Holly is stronger I am sure she would love it (she gave me a look that said not when I asked her!).
Another huge thank you to my friends Julie and Louise. They organised and did the aerobathon for Holly and the Neuroblastoma society. They came round today with the proceeds, amazing generosity from everyone. We are all totally chuffed.
Wednesday 22 July 2009
Tuesday 21 July 2009
Day 29
We are still hoping to go home tomorrow.
Holly has been fine today and had a good night. She had some platelets and then a blood test an hour later to see how her body is dealing with them. We are waiting to see the results of this and then hopefully be out in the morning.
I successfully managed to do Hollys NG tube feed last night and it all went well. I am quite confident about going home with it now, and am sure that between myself and Holly,
we can deal with it.
Holly made some cakes today, they look good but she has been reluctant to try them! The swine flu has caused some changes on C2. The playroom is now closed and all the toys have been sent to storage to prevent any germs spreading. The children cannot socialise together in there and all activites are now done at the bedside individually. I am quite glad that Holly is not a 3 year old whining to play in there as it is the favourite place of most of the children (and the parents).
We have had a good day, however it has been a sad day on the ward. One of our number has had some very bad news, and is going home tomorrow. It is heartbreaking, even the nurses were crying. It must be very hard for them, they are so wonderful and must get so attached to the children. I am sad tonight, this disease is too cruel.
Holly has been fine today and had a good night. She had some platelets and then a blood test an hour later to see how her body is dealing with them. We are waiting to see the results of this and then hopefully be out in the morning.
I successfully managed to do Hollys NG tube feed last night and it all went well. I am quite confident about going home with it now, and am sure that between myself and Holly,
we can deal with it.
Holly made some cakes today, they look good but she has been reluctant to try them! The swine flu has caused some changes on C2. The playroom is now closed and all the toys have been sent to storage to prevent any germs spreading. The children cannot socialise together in there and all activites are now done at the bedside individually. I am quite glad that Holly is not a 3 year old whining to play in there as it is the favourite place of most of the children (and the parents).
We have had a good day, however it has been a sad day on the ward. One of our number has had some very bad news, and is going home tomorrow. It is heartbreaking, even the nurses were crying. It must be very hard for them, they are so wonderful and must get so attached to the children. I am sad tonight, this disease is too cruel.
Monday 20 July 2009
Day 28
The doctors have said we may be coming home on Wednesday!
As Holly is doing so well they don't see any problem with us going home this week. All her meds can be done by herself, and platelets can be done at the local hospital. I can give her any additional meds, and I have now been shown how to set up and give her NG tube feed. This will be given overnight until she is up and eating normally again. It is quite easy to do and I am willing to learn whatever, to ensure that we can do as much as possible at home.
I am looking round our room, wondering how on earth we have accumulated so much stuff, and how we are going to pack it all up!
Holly has done well today. She hasn't felt very sick and has managed to eat 2 bags of skips, an ice cream and some banana. This is so good compared to the last month, I am hopeful that the NG tube shouldn't be for too long.
I have had an enjoyable evening in the parents room tonight with some of my C2 friends. We have had a gossip and a laugh over a few glasses (ok white plastic cups) of pimms. I think some of the new parents were a bit bemused by how we could be cheerful, but they will come to see it is all part of the process. I get great comfort from the solidarity here. Holly was so engrossed in her tv and computer that she was quite happy for me to leave her. This also shows how far Holly has come over the last 5 months. She is so comfortable here now.
As Holly is doing so well they don't see any problem with us going home this week. All her meds can be done by herself, and platelets can be done at the local hospital. I can give her any additional meds, and I have now been shown how to set up and give her NG tube feed. This will be given overnight until she is up and eating normally again. It is quite easy to do and I am willing to learn whatever, to ensure that we can do as much as possible at home.
I am looking round our room, wondering how on earth we have accumulated so much stuff, and how we are going to pack it all up!
Holly has done well today. She hasn't felt very sick and has managed to eat 2 bags of skips, an ice cream and some banana. This is so good compared to the last month, I am hopeful that the NG tube shouldn't be for too long.
I have had an enjoyable evening in the parents room tonight with some of my C2 friends. We have had a gossip and a laugh over a few glasses (ok white plastic cups) of pimms. I think some of the new parents were a bit bemused by how we could be cheerful, but they will come to see it is all part of the process. I get great comfort from the solidarity here. Holly was so engrossed in her tv and computer that she was quite happy for me to leave her. This also shows how far Holly has come over the last 5 months. She is so comfortable here now.
Sunday 19 July 2009
Day 27
Holly had another good night. Her bloods were done early and her platelets were low. She is needing platelets roughly even 2nd day at the moment. This is quite normal and should become further apart as her counts improve. It was doubtful that she would be allowed out for the afternoon.
Holly passed the morning watching tv and on the computer. Her platelets were done quite quickly so it turned out that she was allowed out. Kirsty brought her home to me and she got to spend the afternoon at home with us all. Izzy was delighted to see her and was fascinated about her hair (you would think she was used to it by now!). She asked me if Holly was back because she was better now, I told her that Holly was nearly better and she would be home properly soon. Izzy wisely told me that the docotors were making Holly better again, even though they had taken away her hair.
It was lovely to have her home again, even if it was only for a few hours.
We are now back in Addenbrookes, Holly is just doing her meds. The nurse made the mistake of telling Holly that she could take her time doing them, and she is doing just that! I think the 7 medicines have now taken 35mins. She is multi-tasking, pushing her meds in and chatting on MSN.
It is good to think that we are approaching the end of this horrible stem cell journey. I know it was something that we had to put her through, but it has been so very tough, both mentally and physically. I cannot wait to be back at home with Holly. She cannot wait to be back at home. Lets hope that it will be very soon.
Holly passed the morning watching tv and on the computer. Her platelets were done quite quickly so it turned out that she was allowed out. Kirsty brought her home to me and she got to spend the afternoon at home with us all. Izzy was delighted to see her and was fascinated about her hair (you would think she was used to it by now!). She asked me if Holly was back because she was better now, I told her that Holly was nearly better and she would be home properly soon. Izzy wisely told me that the docotors were making Holly better again, even though they had taken away her hair.
It was lovely to have her home again, even if it was only for a few hours.
We are now back in Addenbrookes, Holly is just doing her meds. The nurse made the mistake of telling Holly that she could take her time doing them, and she is doing just that! I think the 7 medicines have now taken 35mins. She is multi-tasking, pushing her meds in and chatting on MSN.
It is good to think that we are approaching the end of this horrible stem cell journey. I know it was something that we had to put her through, but it has been so very tough, both mentally and physically. I cannot wait to be back at home with Holly. She cannot wait to be back at home. Lets hope that it will be very soon.
Saturday 18 July 2009
Day 26
Holly had a good night and again woke feeling a little sick.
She has been fine though and the docs remain pleased with her. Her nose tube has stayed in and she is still tolerating her tummy feeds well. The dieticians have said they are going to stop her TPN feeding (through her Hickman line) as the NG (tummy) feeds are going so well. This should ensure she starts to feel more hungry but there is no pressure as the NG feed will provide her with calories.
I had a very enjoyable morning catching up with domestic chores and taking Izzy for the big Tescos shop. Just doing this normal weekly task was fun, Izzy was great company and we really had some fun.
After lunch Harry had his sleep. Izzy wanted a rest with Mummy and Daddy, so we all went up to our bed and had a lovely rest. We were all snoozing along very nicely when something disturbed me, I opened my eyes and Holly was there! OMG I thought it was a dream but there she was, smiling at me. The docs had said she could go out for the afternoon again so she thought she would pop home to collect her wig. It was all quite surreal because my mum had also popped over to collect her car and as she was leaving (while we were all asleep upstairs!) she let Holly in. It doesn't say much for our "on alert" capacities. Anything could have been going on and I think we would have just slept through! It was wonderful to see her and she looked great. She has now gone back to the hospital after some cheesy pasta and a sausage with Dad and Kirsty.
We took the kids to see the animals at the garden centre and then dinner at Auntie Clares. Much fun was had, but they were certainly ready for bed by 7.
I am feeling better today, my back has eased and I am hoping it will stay that way. I also want to say a belated Happy Birthday to Julie (my wonderful friend who organised the aerobathon), I am so sorry I forgot, it's been a long week is my only excuse. I will make it up her with a night out very soon hopefully.
She has been fine though and the docs remain pleased with her. Her nose tube has stayed in and she is still tolerating her tummy feeds well. The dieticians have said they are going to stop her TPN feeding (through her Hickman line) as the NG (tummy) feeds are going so well. This should ensure she starts to feel more hungry but there is no pressure as the NG feed will provide her with calories.
I had a very enjoyable morning catching up with domestic chores and taking Izzy for the big Tescos shop. Just doing this normal weekly task was fun, Izzy was great company and we really had some fun.
After lunch Harry had his sleep. Izzy wanted a rest with Mummy and Daddy, so we all went up to our bed and had a lovely rest. We were all snoozing along very nicely when something disturbed me, I opened my eyes and Holly was there! OMG I thought it was a dream but there she was, smiling at me. The docs had said she could go out for the afternoon again so she thought she would pop home to collect her wig. It was all quite surreal because my mum had also popped over to collect her car and as she was leaving (while we were all asleep upstairs!) she let Holly in. It doesn't say much for our "on alert" capacities. Anything could have been going on and I think we would have just slept through! It was wonderful to see her and she looked great. She has now gone back to the hospital after some cheesy pasta and a sausage with Dad and Kirsty.
We took the kids to see the animals at the garden centre and then dinner at Auntie Clares. Much fun was had, but they were certainly ready for bed by 7.
I am feeling better today, my back has eased and I am hoping it will stay that way. I also want to say a belated Happy Birthday to Julie (my wonderful friend who organised the aerobathon), I am so sorry I forgot, it's been a long week is my only excuse. I will make it up her with a night out very soon hopefully.
Friday 17 July 2009
Day 25
At the risk of sounding very boring I am delighted to report another good night.
Holly woke feeling a bit sick but was immediately buoyed by the thought of getting out for a few hours this afternoon.
I did suggest, as she was feeling well, that she go into the school here for an hour this morning. This was dismissed as there was something much more important going on. It was Fern's last day on This Morning! This was not to be missed and I have to admit to watching too, Phil and Fern have been a happy distraction for the last 5 weeks.
The docs were very late on their rounds today and then thought it would be highly amusing to tell Holly that her neutrophils were below 1 (this would mean she was not allowed out!). Holly saw the funny side, I however was slower on the uptake and was about to crawl under the bed and hide. Once established as a joke we were given the all clear for our afternoon out.
We came home for the afternoon, it was great. Izzy and Harry were delighted to see their sister and the feeling was mutual. I had a lump in my throat watching all my children together again, as it should be. Izzy was drawing a picture of Holly on the etch a sketch and trying to work out what the new tube on her face was. She was examining Hollys new very bald head and said it was ok don't worry, she had found Holly's hair, it was over there on the couch!
Holly was also delighted to see that she is in our local newspaper. The Hertfordshire Mercury have covered the Aerobathon that my friend Julie organised for the Neuroblastoma charity and they have done a lovely article about Holly and she has her picture in print. I am going to take a copy to the hospital to put up on the wall.
Holly has now gone back to Addenbrookes with Dad and Kirsty. She has sent me a text and all is ok. I did have to send her a few texts back to establish this, as I didn't quite understand her messages. She uses as few as letters as possible (as per MSN) and I think I am just too old!
I am now in my lovely huge bed nursing a very sore back. It has been very bad this afternoon so I am hoping it improves after a good nights sleep.
Holly woke feeling a bit sick but was immediately buoyed by the thought of getting out for a few hours this afternoon.
I did suggest, as she was feeling well, that she go into the school here for an hour this morning. This was dismissed as there was something much more important going on. It was Fern's last day on This Morning! This was not to be missed and I have to admit to watching too, Phil and Fern have been a happy distraction for the last 5 weeks.
The docs were very late on their rounds today and then thought it would be highly amusing to tell Holly that her neutrophils were below 1 (this would mean she was not allowed out!). Holly saw the funny side, I however was slower on the uptake and was about to crawl under the bed and hide. Once established as a joke we were given the all clear for our afternoon out.
We came home for the afternoon, it was great. Izzy and Harry were delighted to see their sister and the feeling was mutual. I had a lump in my throat watching all my children together again, as it should be. Izzy was drawing a picture of Holly on the etch a sketch and trying to work out what the new tube on her face was. She was examining Hollys new very bald head and said it was ok don't worry, she had found Holly's hair, it was over there on the couch!
Holly was also delighted to see that she is in our local newspaper. The Hertfordshire Mercury have covered the Aerobathon that my friend Julie organised for the Neuroblastoma charity and they have done a lovely article about Holly and she has her picture in print. I am going to take a copy to the hospital to put up on the wall.
Holly has now gone back to Addenbrookes with Dad and Kirsty. She has sent me a text and all is ok. I did have to send her a few texts back to establish this, as I didn't quite understand her messages. She uses as few as letters as possible (as per MSN) and I think I am just too old!
I am now in my lovely huge bed nursing a very sore back. It has been very bad this afternoon so I am hoping it improves after a good nights sleep.
Thursday 16 July 2009
Day 24
Sorry if I'm repeating myself but another good night (not sorry really).
Holly was feeling good today, a little nauseous but hasn't been sick. Her feed has been upped into her tummy and she is tolerating that well. The other feed that was going into her Hickman line has been reduced. This should have the effect of making Holly actually feel more hungry. She has managed some crisps, sweets and a bit of potato today. Drinking has also improved.
The morning passed with Holly doing some arts and crafts. My friend Lynne came to see us now that Holly is up to having visitors. It was great to see her, and Holly thoroughly enjoyed having someone else around. (She particularly liked listening to us having a gossip!) Thank you Lynne xx
In the afternoon Holly was up for another wander. Again we went all over the hospital and the grounds. I managed to convince her to have a little sit in the gardens but the midges started attacking her head, so she was adamant we moved on, and on, and on! My back has had enough and I am in some discomfort tonight. I don't think that a night in this bed is going to help matters either.
We have had some mixed news about getting out tomorrow. The school have had some confirmed cases of swine flu (as with most places) so the docs are not happy for her to spend the afternoon there with a large number of people. This is fine, she has been so poorly the last couple of weeks that it just isn't worth the risk. However, we have a plan B. Holly is desperate to get home and see Izzy and Harry, so that is what we shall do. Holly will be able to catch up with her friends in the holidays when she is stronger.
Well done to Mum and Sis. Apparently it was an amazing night with a great atmosphere. They completed the course and there were no injuries. Poor Mum had the pleasure of the Little Monsters all day today (again), so rest and recouperation will have to wait until the weekend.
Thanks to everyone for your kind messages, we really appreciate them.
Holly was feeling good today, a little nauseous but hasn't been sick. Her feed has been upped into her tummy and she is tolerating that well. The other feed that was going into her Hickman line has been reduced. This should have the effect of making Holly actually feel more hungry. She has managed some crisps, sweets and a bit of potato today. Drinking has also improved.
The morning passed with Holly doing some arts and crafts. My friend Lynne came to see us now that Holly is up to having visitors. It was great to see her, and Holly thoroughly enjoyed having someone else around. (She particularly liked listening to us having a gossip!) Thank you Lynne xx
In the afternoon Holly was up for another wander. Again we went all over the hospital and the grounds. I managed to convince her to have a little sit in the gardens but the midges started attacking her head, so she was adamant we moved on, and on, and on! My back has had enough and I am in some discomfort tonight. I don't think that a night in this bed is going to help matters either.
We have had some mixed news about getting out tomorrow. The school have had some confirmed cases of swine flu (as with most places) so the docs are not happy for her to spend the afternoon there with a large number of people. This is fine, she has been so poorly the last couple of weeks that it just isn't worth the risk. However, we have a plan B. Holly is desperate to get home and see Izzy and Harry, so that is what we shall do. Holly will be able to catch up with her friends in the holidays when she is stronger.
Well done to Mum and Sis. Apparently it was an amazing night with a great atmosphere. They completed the course and there were no injuries. Poor Mum had the pleasure of the Little Monsters all day today (again), so rest and recouperation will have to wait until the weekend.
Thanks to everyone for your kind messages, we really appreciate them.
Wednesday 15 July 2009
Day 23
Holly had another good night.
She has been feeling good all day (although a bit queasy). She has only been sick once but has managed to keep her tube down. She has managed a few crisps, a bit of banana and some sweets.
Her neutrophils are up again so we were allowed out this afternoon. She wanted to explore the hospital (again) and had me taking her all over the place. She seems to have a particularly gruesome need to see the worst places possible and insisted on me taking her up to see all the theatres and also the intensive care units! Quite what she expected to see through the doors I'm not sure. I think she was expecting an episode of ER going on in front of her! I am just waiting for what she wants to see tomorrow (I wouldn't be surprised if the mortuary was mentioned!).
The docs have said that if she continues improving this way we could look at going home late next week. This would be wonderful, a light at the end of a very long tunnel for Holly. Our consultant has also said he is quite happy (as long as things stay the same) for Holly to go to her Leavers Mass on Friday. We are keeping everything crossed that this comes to fruition, Holly truly deserves it.
I just also want to say a huge thanks and good luck to my wonderful Mum and Sister who are running Race for Life tonight in Hollys name. I wish I could be with them running (or walking) for this great cause, I will definitely be there next year. I would truly pay good money to see them!
She has been feeling good all day (although a bit queasy). She has only been sick once but has managed to keep her tube down. She has managed a few crisps, a bit of banana and some sweets.
Her neutrophils are up again so we were allowed out this afternoon. She wanted to explore the hospital (again) and had me taking her all over the place. She seems to have a particularly gruesome need to see the worst places possible and insisted on me taking her up to see all the theatres and also the intensive care units! Quite what she expected to see through the doors I'm not sure. I think she was expecting an episode of ER going on in front of her! I am just waiting for what she wants to see tomorrow (I wouldn't be surprised if the mortuary was mentioned!).
The docs have said that if she continues improving this way we could look at going home late next week. This would be wonderful, a light at the end of a very long tunnel for Holly. Our consultant has also said he is quite happy (as long as things stay the same) for Holly to go to her Leavers Mass on Friday. We are keeping everything crossed that this comes to fruition, Holly truly deserves it.
I just also want to say a huge thanks and good luck to my wonderful Mum and Sister who are running Race for Life tonight in Hollys name. I wish I could be with them running (or walking) for this great cause, I will definitely be there next year. I would truly pay good money to see them!
Tuesday 14 July 2009
Day 22
Another very good night.
Holly felt sick this morning and managed to bring the dreaded tube up. After a pretty painless re-insertion order was restored and she has tolerated her increased feed today. She has managed to eat a little today. some ice cream and a mini cheddar. Also a starburst. Still only a small amount but we are getting there.
Holly had a visitor today. Dad came to see her as she had told him yesterday on MSN that she fancied a trifle! He has brought her some but they haven't been sampled yet. She wanted to go out for a wander again this afternoon but due to her not having had any special stem cell rescue meds (GCSF) for the last 2 days her neutrophils had dropped below 1 and she wasn't allowed out. They have given her GCSF tonight so they will be back up again tomorrow. This is completely normal and usually has to be given every other day, so the fact that she went 2 days without it is good. To say she was not happy was an understatement. She managed to get over it when I got her a magnum (and chocolate buttons). My stroppy little madam certainly came back a bit today (I am secretly very grateful for this).
It should be Hollys last week at school today and, as she is in year 6, she would be leaving to go onto secondary school. I am so sad she has missed so much of this special year in this wonderful school. She has grown up there and become a very special, clever young lady. I am hoping, if all is ok, that she may be able to get out of hospital for a few hours on Friday to go to the Leavers Mass and say goodbye to all her friends and teachers. This is dependant on her blood counts and outside factors such as swine flu etc... Wig has been duly washed and straightened in readiness, I hope she gets a chance to wear it.
Holly felt sick this morning and managed to bring the dreaded tube up. After a pretty painless re-insertion order was restored and she has tolerated her increased feed today. She has managed to eat a little today. some ice cream and a mini cheddar. Also a starburst. Still only a small amount but we are getting there.
Holly had a visitor today. Dad came to see her as she had told him yesterday on MSN that she fancied a trifle! He has brought her some but they haven't been sampled yet. She wanted to go out for a wander again this afternoon but due to her not having had any special stem cell rescue meds (GCSF) for the last 2 days her neutrophils had dropped below 1 and she wasn't allowed out. They have given her GCSF tonight so they will be back up again tomorrow. This is completely normal and usually has to be given every other day, so the fact that she went 2 days without it is good. To say she was not happy was an understatement. She managed to get over it when I got her a magnum (and chocolate buttons). My stroppy little madam certainly came back a bit today (I am secretly very grateful for this).
It should be Hollys last week at school today and, as she is in year 6, she would be leaving to go onto secondary school. I am so sad she has missed so much of this special year in this wonderful school. She has grown up there and become a very special, clever young lady. I am hoping, if all is ok, that she may be able to get out of hospital for a few hours on Friday to go to the Leavers Mass and say goodbye to all her friends and teachers. This is dependant on her blood counts and outside factors such as swine flu etc... Wig has been duly washed and straightened in readiness, I hope she gets a chance to wear it.
Monday 13 July 2009
Day 21
Holly had a great night. She has tolerated the feed into her tummy and there has been no sickness.
The doctors came round en masse today and say that she is doing amazingly well for 3 weeks post stem cell transplant. She has felt a bit sick today but hasn't thrown up at all. The nose tube has been in now since yesterday morning and Holly is now doing her own meds. She has found it better to push them into the tube herself because then she can control how quickly they are done. It was a great idea of the nurses to let her do it, and it seems to have helped.
She has had a good day today. She did music therapy this morning. This was on a laptop and she created her own cd. The lady is coming next week with a keyboard so she can add some "live" sounds to her masterpiece. This afternoon she has spent some time with the teacher and done a little bit of schoolwork. Then we decided, as she was off her pumps, to go for a wander. Well I wandered and Holly sat there, enjoying being pushed about! We walked for about an hour and a half, all over the hospital and around the grounds. We even went up to the 10th floor to check out the view. I was knackered. Holly wasn't...
Since we have been back she has been re-attached to her pumps and has done her meds. She is now chatting away on MSN and watching all the soaps. It has been lovely to see her so good today.
The doctors came round en masse today and say that she is doing amazingly well for 3 weeks post stem cell transplant. She has felt a bit sick today but hasn't thrown up at all. The nose tube has been in now since yesterday morning and Holly is now doing her own meds. She has found it better to push them into the tube herself because then she can control how quickly they are done. It was a great idea of the nurses to let her do it, and it seems to have helped.
She has had a good day today. She did music therapy this morning. This was on a laptop and she created her own cd. The lady is coming next week with a keyboard so she can add some "live" sounds to her masterpiece. This afternoon she has spent some time with the teacher and done a little bit of schoolwork. Then we decided, as she was off her pumps, to go for a wander. Well I wandered and Holly sat there, enjoying being pushed about! We walked for about an hour and a half, all over the hospital and around the grounds. We even went up to the 10th floor to check out the view. I was knackered. Holly wasn't...
Since we have been back she has been re-attached to her pumps and has done her meds. She is now chatting away on MSN and watching all the soaps. It has been lovely to see her so good today.
Sunday 12 July 2009
Day 20
Holly is doing well today. Dad stayed with her and reported all was good last night.
Her nose tube was re-inserted and has (so far) stayed in. All her meds have been done and she has a feed going into her tummy too.
When Holly was off her pumps this afternoon she went out and about with Dad and Kirsty. They took her (in a wheelchair, Holly doesn't do "walking" if there is the possibility of being pushed!) around the grounds of the hospital for about an hour. This fresh air has got to be good for her and hopefully she can have much more of it.
I have had another lovely weekend at home, even though today has been shopping (food so not fun!) and loads of washing. That hasn't bothered me though, because the Little Ones have been under my feet and that is wonderful. I am relishing every moment with them, Harry was particularly cuddly tonight after his milk, climbing and slobbering all over me.
I am now back in Addenbrookes, refreshed and ready for a new week. Holly looks good tonight, smiling and chatting. She is tired from her fresh air though and is dropping off as I type. Heres hoping for another week of improvement that brings home closer.
Her nose tube was re-inserted and has (so far) stayed in. All her meds have been done and she has a feed going into her tummy too.
When Holly was off her pumps this afternoon she went out and about with Dad and Kirsty. They took her (in a wheelchair, Holly doesn't do "walking" if there is the possibility of being pushed!) around the grounds of the hospital for about an hour. This fresh air has got to be good for her and hopefully she can have much more of it.
I have had another lovely weekend at home, even though today has been shopping (food so not fun!) and loads of washing. That hasn't bothered me though, because the Little Ones have been under my feet and that is wonderful. I am relishing every moment with them, Harry was particularly cuddly tonight after his milk, climbing and slobbering all over me.
I am now back in Addenbrookes, refreshed and ready for a new week. Holly looks good tonight, smiling and chatting. She is tired from her fresh air though and is dropping off as I type. Heres hoping for another week of improvement that brings home closer.
Saturday 11 July 2009
Day 19
Last night was not very nice. For the third time Holly managed to sick up her nose tube at midnight. We (and the nurses) decided enough was enough and, as no medicines were needed, made the decision to leave the new tube until the morning.
This played on my mind a bit and I have to admit to having a really awful nights sleep. Holly had an ok sleep, slightly disturbed and restless but generally ok.
Holly needed platelets so we had to wait for them to be done before it was ok to do the new NG tube. Once done Holly visibly relaxed and was happy for me to go home. I eventually got back at 1.30pm and have had a lovely afternoon. We took the Little Ones to see the animals at the garden centre and they have played all afternoon.
Holly did text me to let me know that the tube was back out but she wasn't too concerned. A new one will have to go in later for her medicines. She has also managed to get out and about this afternoon and had a little shopping spree in the hospital shops.
She is still doing really well and the tummy is the only problem for her at the moment. The doctor told her this morning that she was doing so well, even if she didn't feel it. He has assured her that the tummy issue will get better, it will just be a slow process.
She has managed to have her new tube and her medicines tonight. This was short lived however. The tube lasted half an hour. At least her meds are in, this looks like becoming the pattern for the next few days!
I am savouring being at home, and am typing this in my lovely huge bed. I have certainly become much more appreciative of all the things I took for granted before. Holly said earlier that she just wanted to come home, I can completely agree. She will be here soon.
This played on my mind a bit and I have to admit to having a really awful nights sleep. Holly had an ok sleep, slightly disturbed and restless but generally ok.
Holly needed platelets so we had to wait for them to be done before it was ok to do the new NG tube. Once done Holly visibly relaxed and was happy for me to go home. I eventually got back at 1.30pm and have had a lovely afternoon. We took the Little Ones to see the animals at the garden centre and they have played all afternoon.
Holly did text me to let me know that the tube was back out but she wasn't too concerned. A new one will have to go in later for her medicines. She has also managed to get out and about this afternoon and had a little shopping spree in the hospital shops.
She is still doing really well and the tummy is the only problem for her at the moment. The doctor told her this morning that she was doing so well, even if she didn't feel it. He has assured her that the tummy issue will get better, it will just be a slow process.
She has managed to have her new tube and her medicines tonight. This was short lived however. The tube lasted half an hour. At least her meds are in, this looks like becoming the pattern for the next few days!
I am savouring being at home, and am typing this in my lovely huge bed. I have certainly become much more appreciative of all the things I took for granted before. Holly said earlier that she just wanted to come home, I can completely agree. She will be here soon.
Friday 10 July 2009
Day 18
Holly had a good night, just waking to ask me to re-tape her nose tube as it was a bit loose.
She is now off her morphine and is only on the general meds which are normal during the stem cell process. She has been awake all day and managed some more sips of drink again too. Still not eating but has tolerated a special feed into her tummy which should build the tummy up so it is less sensitive.
Holly decided she wanted to do some baking and, as nothing is too much trouble here, all ingredients and utensils were duly brought. She had great fun making the cakes and decorating them. The best thing of all was that she came out of her room (for the first time since she was in isolation 3wks ago) and distributed them to her friends and the nurses. We also went into the garden for some much needed fresh air, until Holly informed me that she was bored and wanted to go back and watch Come Dine With Me!
This evening has been really tough for me. Holly was sick and had to have a new nose tube down. The nurses had some probs testing it was in the right place, so after much poking and prodding (and waking Holly up) it was declared ok. 3 minutes later she was sick and up it came again! By this time it was gone 9pm and another tube was needed. Holly was so upset and frustrated that this keeps happening, and I just feel so helpless. I have to admit this tube saga is now getting me down, and I am trying so hard to be positive. I have had a few tears tonight and am feeling overwhelmed. I know that getting home tomorrow will be a huge boost for me and I am counting down the days until I can bring Holly back with me...
Thursday 9 July 2009
Day 17
Holly had a really good, peaceful night.
She has only been sick twice today so again an improvement. Her tummy is so sensitive still and she has managed to drink a little bit again today. It is such a slow process and it is starting to get to Holly now. She is hungry but struggling to swallow food. Her body needs to adjust after being so long without eating. She just wants it to all be normal now.
She managed to cough up a nose tube today so they re-inserted it this morning. Unfortunately she managed to cough that one up tonight (before it had been used) so she has had to have another one this evening. Two nose tubes in one day is not pleasant but Holly takes it all in her stride (just getting cross with herself for it coming out!)
Her voice has now returned as her mouth has healed. She isn't as vocal as normal, but makes her opinions known when she feels like it.
It has been another good day all in all and for that I am thankful.
She has only been sick twice today so again an improvement. Her tummy is so sensitive still and she has managed to drink a little bit again today. It is such a slow process and it is starting to get to Holly now. She is hungry but struggling to swallow food. Her body needs to adjust after being so long without eating. She just wants it to all be normal now.
She managed to cough up a nose tube today so they re-inserted it this morning. Unfortunately she managed to cough that one up tonight (before it had been used) so she has had to have another one this evening. Two nose tubes in one day is not pleasant but Holly takes it all in her stride (just getting cross with herself for it coming out!)
Her voice has now returned as her mouth has healed. She isn't as vocal as normal, but makes her opinions known when she feels like it.
It has been another good day all in all and for that I am thankful.
Wednesday 8 July 2009
Day 16
Holly had a really good night and seemed to wake really refreshed.
The first thing she said to me was that she was thirsty. This was music to my ears as she hasn't eaten or drunk anything for weeks. She has managed sips throughout the day and even had a wotsit! Only a small thing but a huge milestone for her both physically and mentally.
She has been awake all day, another first for weeks. This is probably due to the fact she is feeling better and her morphine is at a very low level now. The sickness is still hanging around but it is a bit better today.
Kirsty came up to visit armed with a huge balloon and some presents. Holly's room looks amazing and she really deserves it.
I went into Cambridge for a wander. I walked for miles (getting a little lost in the process). My feet are killing me as I had totally inappropriate footwear on, this will be no surprise to anyone that knows me! It was a lovely afternoon and I certainly feel I know Cambridge (and its shops) a bit better now!
Holly's improvement has made this a good day.
The first thing she said to me was that she was thirsty. This was music to my ears as she hasn't eaten or drunk anything for weeks. She has managed sips throughout the day and even had a wotsit! Only a small thing but a huge milestone for her both physically and mentally.
She has been awake all day, another first for weeks. This is probably due to the fact she is feeling better and her morphine is at a very low level now. The sickness is still hanging around but it is a bit better today.
Kirsty came up to visit armed with a huge balloon and some presents. Holly's room looks amazing and she really deserves it.
I went into Cambridge for a wander. I walked for miles (getting a little lost in the process). My feet are killing me as I had totally inappropriate footwear on, this will be no surprise to anyone that knows me! It was a lovely afternoon and I certainly feel I know Cambridge (and its shops) a bit better now!
Holly's improvement has made this a good day.
Tuesday 7 July 2009
Day 15
I do feel as though every post is the same at the moment but I want to make sure I update every day (during this stem cell process) so we can look back on this in the future. I want Holly to be able to read back and see how brave she has been and how well she has coped throughout these last couple of weeks.
The sickness is still hanging around but in between she has been really good. She is still not managing to eat or drink but this is going to be a slow process, and healing the tummy is going to take a while.
I want to say a huge thank you to Jane & co for the wonderful present for Holly. She feels very important when she gets post delivered, and I am very grateful for the smile it brings to her face.
The sickness is still hanging around but in between she has been really good. She is still not managing to eat or drink but this is going to be a slow process, and healing the tummy is going to take a while.
I want to say a huge thank you to Jane & co for the wonderful present for Holly. She feels very important when she gets post delivered, and I am very grateful for the smile it brings to her face.
Monday 6 July 2009
Day 14
Holly had quite a good night. Now that her morphine has been reduced by quite a bit the night time shouts have diminished. She has always been one for shouting in her sleep so I don't think they will go away completely.
Monday is quite daunting. Usual doctors rounds consist of 2 doctors. On Mondays there are a few doctors and there were 3 consultants. That many people in our small room was quite a sight. Our consultant was very pleased with Holly and even went as far as to say that her progress was "impressive". More good news later this afternoon, Hollys neutrophils were 1.91, she is officially out of isolation! Not that she is going anywhere, she is still sleeping a lot and has no intention of being anywhere other than bed!
Unfortunately she managed to sick up her nose tube this evening but had another put in with no bother. She is getting quite used to it now.
Holly decided she wanted to watch Teenagers Fighting Cancer on C4 tonight. She does seem to have a gruesome fascination to watch anything about cancer. I suppose it is understandable, I just worry she will find it all too upsetting. She was fine. I was not. It was shown from the perspectives of the children and also the parents and it was all a bit close to home.
I decided to get away from it all and escape to the parents room for some dinner and something light and airy on tv. However there was another very upset parent in there and we talked for quite a while. I hope I helped but it has left me feeling quite sad.
Monday is quite daunting. Usual doctors rounds consist of 2 doctors. On Mondays there are a few doctors and there were 3 consultants. That many people in our small room was quite a sight. Our consultant was very pleased with Holly and even went as far as to say that her progress was "impressive". More good news later this afternoon, Hollys neutrophils were 1.91, she is officially out of isolation! Not that she is going anywhere, she is still sleeping a lot and has no intention of being anywhere other than bed!
Unfortunately she managed to sick up her nose tube this evening but had another put in with no bother. She is getting quite used to it now.
Holly decided she wanted to watch Teenagers Fighting Cancer on C4 tonight. She does seem to have a gruesome fascination to watch anything about cancer. I suppose it is understandable, I just worry she will find it all too upsetting. She was fine. I was not. It was shown from the perspectives of the children and also the parents and it was all a bit close to home.
I decided to get away from it all and escape to the parents room for some dinner and something light and airy on tv. However there was another very upset parent in there and we talked for quite a while. I hope I helped but it has left me feeling quite sad.
Sunday 5 July 2009
Day 13
Holly had an ok night. She was sick a couple of times but this is only to be expected with all the mucous and her sensitive tummy.
The docs were once again pleased with Holly's progress. They do a quick examination every day and all is going well.
Holly had some more platelets today, she seems to be needing these every other day. This is all normal and all her other counts are climbing. Her neutrophils have now jumped to 0.91 which is really good. They have been giving her GCSF (which support the blood counts), so this is definitely doing its job.
I am now back here with Holly. I have had a lovely weekend with the Little Ones and Ben, and had great fun at Little Cousins birthday party. It was a real family afternoon, it was a shame that Holly wasn't able to be there. She was very much missed. I love being able to get home at the weekend and am very grateful that Holly is well enough for me to be able to go. However, it is getting harder and harder to say goodbye to the Little Ones. I kiss them goodnight knowing I won't see them for another week and it breaks my heart. I am just glad that they are being looked after so well by Mum and Ben that they don't seem to miss me!
The docs were once again pleased with Holly's progress. They do a quick examination every day and all is going well.
Holly had some more platelets today, she seems to be needing these every other day. This is all normal and all her other counts are climbing. Her neutrophils have now jumped to 0.91 which is really good. They have been giving her GCSF (which support the blood counts), so this is definitely doing its job.
I am now back here with Holly. I have had a lovely weekend with the Little Ones and Ben, and had great fun at Little Cousins birthday party. It was a real family afternoon, it was a shame that Holly wasn't able to be there. She was very much missed. I love being able to get home at the weekend and am very grateful that Holly is well enough for me to be able to go. However, it is getting harder and harder to say goodbye to the Little Ones. I kiss them goodnight knowing I won't see them for another week and it breaks my heart. I am just glad that they are being looked after so well by Mum and Ben that they don't seem to miss me!
Saturday 4 July 2009
Day 12
Holly had a good night. She is certainly sleeping well and I don't recall any shouting either.
I have been able to get home today so haven't been with Holly since this morning. According to my updates she is fine, and the docs are still very pleased with her progress.
It has been great being at home today and I have had fun with the little ones. We took them to the park and they have had so much fun. Izzy was most put out when she realised I hadn't brought Holly home. She has made me promise to bring her home with me soon.
It feels very strange to be away from the hospital and I miss Holly very much. What I don't miss is the constant beep of the pumps and the very small bed!
I have been able to get home today so haven't been with Holly since this morning. According to my updates she is fine, and the docs are still very pleased with her progress.
It has been great being at home today and I have had fun with the little ones. We took them to the park and they have had so much fun. Izzy was most put out when she realised I hadn't brought Holly home. She has made me promise to bring her home with me soon.
It feels very strange to be away from the hospital and I miss Holly very much. What I don't miss is the constant beep of the pumps and the very small bed!
Friday 3 July 2009
Day 11
Not much to post today. It has been a very quiet day which Holly has pretty much slept through.
The docs are very pleased and she is progressing well. Her neutrophils have jumped up to 0.26 which is great. She is still having some pain in her mouth but it comes in waves and passes very quickly. The morphine has been reduced again and the night time shouting seems to be better, or maybe I was so tired I slept through it?
I am hoping to get home tomorrow and Sunday while dad comes up to stay with Holly.
The docs are very pleased and she is progressing well. Her neutrophils have jumped up to 0.26 which is great. She is still having some pain in her mouth but it comes in waves and passes very quickly. The morphine has been reduced again and the night time shouting seems to be better, or maybe I was so tired I slept through it?
I am hoping to get home tomorrow and Sunday while dad comes up to stay with Holly.
Thursday 2 July 2009
Day 10
Me again.
Another ok night, a few shouts but nothing major.
Holly has slept on and off all morning, again sleeping through the doctors rounds. They are getting quite used to her grunts when they ask her anything. They were pleased again with her and said she is doing great. Her mouth is slowing improving and I am hoping she may be able to try a drink tomorrow.
She has been very bright this afternoon, watching tv and on the computer. She even picked a couple of things out on the Next website. I think she senses I am in a weak position and is making the most of it. She knows she is well set for maximum indulgence, and I think she deserves it!
She is currently very happily watching Katie and Peter on the tv.
Its been a good day but being on C2 inevitably brings sad news as well. One set of parents and their son have left today with very bad news. It is a sad reminder of how horrible cancer is and my heart goes out to them. It is the very news we all dread being told here.
However, (I feel very selfish saying this), I am going to savour the fact that Holly is getting better every day at the moment and pray that it continues.
Another ok night, a few shouts but nothing major.
Holly has slept on and off all morning, again sleeping through the doctors rounds. They are getting quite used to her grunts when they ask her anything. They were pleased again with her and said she is doing great. Her mouth is slowing improving and I am hoping she may be able to try a drink tomorrow.
She has been very bright this afternoon, watching tv and on the computer. She even picked a couple of things out on the Next website. I think she senses I am in a weak position and is making the most of it. She knows she is well set for maximum indulgence, and I think she deserves it!
She is currently very happily watching Katie and Peter on the tv.
Its been a good day but being on C2 inevitably brings sad news as well. One set of parents and their son have left today with very bad news. It is a sad reminder of how horrible cancer is and my heart goes out to them. It is the very news we all dread being told here.
However, (I feel very selfish saying this), I am going to savour the fact that Holly is getting better every day at the moment and pray that it continues.
Wednesday 1 July 2009
Day 9
Another shouty night, but otherwise very settled and Holly slept until after 10am. She even practically slept through the docs doing their rounds. She did manage to mumble and do a bit of sign language when they asked her anything, but made it quite clear that she was going to stay asleep! I think she knew that when she woke up properly the nose tube was going to be re-done!
She has had another day of improvement and the docs are pleased with her progress. They have reduced her morphine dose today as she is doing so well. Her mouth was covered by a hugh blister this morning. She couldn't help playing with it and, all of a sudden, squealed and showed me it. It was half hanging off! I got our nurse, who took one look and got our doc. She looked and told Holly not to pull the rest of it off. Holly then proceeded to close her mouth, smile and then produce the huge blister out of her mouth! It was truly disgusting and the nurse, doc and myself were horrified. Holly just smiled and seemed very proud of it!
She has been reading quite a bit today and watching tv. It has definitely been a better day again. Her neutrophils have now risen to 0.02 which is also good news.
She has had another day of improvement and the docs are pleased with her progress. They have reduced her morphine dose today as she is doing so well. Her mouth was covered by a hugh blister this morning. She couldn't help playing with it and, all of a sudden, squealed and showed me it. It was half hanging off! I got our nurse, who took one look and got our doc. She looked and told Holly not to pull the rest of it off. Holly then proceeded to close her mouth, smile and then produce the huge blister out of her mouth! It was truly disgusting and the nurse, doc and myself were horrified. Holly just smiled and seemed very proud of it!
She has been reading quite a bit today and watching tv. It has definitely been a better day again. Her neutrophils have now risen to 0.02 which is also good news.
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