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.
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