Day +32 and Day +33
Sorry all you fellow bloggers, we missed a day again! We seemed to get swept away, what with the routines of the day and chatting to all Ella’s lovely visitors.
Ella was holding her own yesterday, after a slightly better night. The arrival of Auntie Rachael did wonders of course, and by lunch time she was changed and washed. She still had a lot of tummy pain, which the team are trying their best to manage.
After a flying visit from Uncle Gav and Ethan, who’d come to take Damian home, we settled to wait for Martin, who we were expecting during the afternoon. It was really good to chat and catch up on some Ainsdale news……….nobody told me the Arion had closed!
Whilst Martin was here, we had a visit from Lyndsey, Simon,and their children, Corey and Alex. They are a lovely family who have gone through transplants, under similar circumstances to Sally and Damian. In fact their transplants were under Dr Wynn too, which is how we came into contact. Sally and I met them before Ella came in, and it was good to listen to their positive experiences. Ella didn’t seem to take much in at the time, but after they had gone, and Ella and Mummy were chatting, Ella was asking about Alex and Corey again, and about how well they looked. Thank you for visiting and for the great doggy Alex! Ella loves it.
Auntie Rachael decided to stay last night, although she doesn’t need much persuasion. So I retired to the igloo and left them to it. About 2.00am I had a knock on the window, which let me know that Rachael was home after her night out, no key of course……….so I had to let her in………….just like the olden days!
Today, Tuesday, has been another day of visitors in the morning and a calm afternoon. Auntie Dianne and Jules ( of blog fame ) came. Thanks to both of you……………Dianne bringing food parcels of homemade goodies, and Jules bringing ( amongst other things ) the most delightful little slippers for Ella. A bit like ‘Upsy Daisy’ would wear. All the nurses have been cooing over them as well. It must be a girl thing.
Ella enjoyed listening to a couple of stories this afternoon and later watched on as Sally made some cakes (with Ella). By the time they were baked Ella was beginning to flop, and just about managed to stick the little decorations on them. She had each cake predestined for her nurses….with Alison having the special one today! It had a sheep and a pig on it!
Dr Wynn’s visit today was positive. Ella’s white blood cell count is good and they are donor cells. He is going to transplant the new stem cells from Holland on Thursday. So it’s a case of carrying on the way we are going.
At the moment both girls are in bed. Ella is fast asleep under the fairies at one end of the room and Sally is away with the fairies at the other end. I can hear plenty of zzzzzzzzzzzzzzzzz’s. and it’s only 10.00pm. We’ll see how long it lasts!
I’m going to finish now and sit quietly here. The TV will wake them and it’s too dark to read. I can hear the night staff moving around outside getting on with their million and one jobs and I’m just contemplating another cuppa? I bet if I move the bleeping machines will be off again.
Lots of love to everyone. As always thank you for all your prayers and loving support.
Night night
Ella, Sally and Annette.xxx
Tuesday, 10 March 2009
Sunday, 8 March 2009
Day +31
Hi, another night passed and another early morning start. Sally and I were woken by the phone ringing about 5.00am. Panic to begin with……..then Damian went on to explain that Ella was asking for Mummy, so off she went to give those Mummmmmmmmmy cuddles, we all need at times. They must have worked, because when I arrived up there about 9.00am Ella was looking brighter. In fact she had had a better night altogether.
Nurse Kelly was on duty again and whilst Sally was getting organised Kelly bedbathed Ella again and reapplied cream in all ‘those important little places’. By 11.00am Ella was back in her nicely re-organised bed, looking rested and smelling gorgeous. In fact the nurses all comment on how nice our room smells!
Yesterday and certainly for the future we are using the igloo to its’ best advantage, by cooking here and using it as a ‘retreat’.I know Damian enjoyed a quiet time down here too, to recharge batteries. I even made toast down here this morning, without the appearance of the FB. Mind you I did have all the windows open, and the toast was still floppy! Still, a good attempt I thought. Sally and I had lunch in the restaurant today. Can it really be Sunday again? Sunday lunch is very popular here! You have to get there early, Sally was. When I met her down there, to find that she had bought three dinners. Why? Because you only get stuffing on the chicken dinner, and only get Yorkshires on the beef dinner….soooooooooooo…………..we ended up with a mixture of all the things we like, smothered in NHS gravy. Yummy!
This morning passed peacefully, with Ella watching ‘Tinkerbell’ and snoozing at the same time, but still that big sleep was alluding her. Then, after lunch, Reg arrived with another Sylvanian cutie for Ella. I think he is becoming as addicted as she is! At last the ‘big sleep’ came and Ella eventually relaxed and slept for at least 2/3 hrs. Her legs were flat and she was warm and cosy, with Tiger and Geoffrey, who had slipped into bed when she wasn’t looking.
Reg and I went for a walk round the local area, and we found all the local landmarks….. the Greater Manchester FB Headquarters and a prison! Not bad eh? Then quickly back for a macaroon and a cuppa. Before we went out we left Damian surrounded by a balsa kit model of an owl, which we had started and he was finishing………… through gritted teeth I may add. Well, it is finished and looking groovy, well done Damian. After ‘the sleep’ Ella and Mummy were choosing gorgeous new Sylvanian cuties, and ordering them on the ‘net’. More mouths to feed!
We had tea in the igloo, in shifts, tonight and then we all watched Ella’s favourites whilst Kelly settled Ella down with new cream etc and topping up drug lines. She has been on duty all day, along with her team mates, from 8.30am to 8.30pm. They really are hardworking, devoted young ladies….
We all feel that today has been a slightly more positive day. Ella has been more relaxed and that will help the healing process too, alongside the technology.
Sally and I are down in the igloo, relaxing before bed, so we are sending you lots of love and best wishes, and big thankyou’s for all your prayers and thoughts.
Night night,
from Ella,Sally, Damian and Annette.xxxx
Hi, another night passed and another early morning start. Sally and I were woken by the phone ringing about 5.00am. Panic to begin with……..then Damian went on to explain that Ella was asking for Mummy, so off she went to give those Mummmmmmmmmy cuddles, we all need at times. They must have worked, because when I arrived up there about 9.00am Ella was looking brighter. In fact she had had a better night altogether.
Nurse Kelly was on duty again and whilst Sally was getting organised Kelly bedbathed Ella again and reapplied cream in all ‘those important little places’. By 11.00am Ella was back in her nicely re-organised bed, looking rested and smelling gorgeous. In fact the nurses all comment on how nice our room smells!
Yesterday and certainly for the future we are using the igloo to its’ best advantage, by cooking here and using it as a ‘retreat’.I know Damian enjoyed a quiet time down here too, to recharge batteries. I even made toast down here this morning, without the appearance of the FB. Mind you I did have all the windows open, and the toast was still floppy! Still, a good attempt I thought. Sally and I had lunch in the restaurant today. Can it really be Sunday again? Sunday lunch is very popular here! You have to get there early, Sally was. When I met her down there, to find that she had bought three dinners. Why? Because you only get stuffing on the chicken dinner, and only get Yorkshires on the beef dinner….soooooooooooo…………..we ended up with a mixture of all the things we like, smothered in NHS gravy. Yummy!
This morning passed peacefully, with Ella watching ‘Tinkerbell’ and snoozing at the same time, but still that big sleep was alluding her. Then, after lunch, Reg arrived with another Sylvanian cutie for Ella. I think he is becoming as addicted as she is! At last the ‘big sleep’ came and Ella eventually relaxed and slept for at least 2/3 hrs. Her legs were flat and she was warm and cosy, with Tiger and Geoffrey, who had slipped into bed when she wasn’t looking.
Reg and I went for a walk round the local area, and we found all the local landmarks….. the Greater Manchester FB Headquarters and a prison! Not bad eh? Then quickly back for a macaroon and a cuppa. Before we went out we left Damian surrounded by a balsa kit model of an owl, which we had started and he was finishing………… through gritted teeth I may add. Well, it is finished and looking groovy, well done Damian. After ‘the sleep’ Ella and Mummy were choosing gorgeous new Sylvanian cuties, and ordering them on the ‘net’. More mouths to feed!
We had tea in the igloo, in shifts, tonight and then we all watched Ella’s favourites whilst Kelly settled Ella down with new cream etc and topping up drug lines. She has been on duty all day, along with her team mates, from 8.30am to 8.30pm. They really are hardworking, devoted young ladies….
We all feel that today has been a slightly more positive day. Ella has been more relaxed and that will help the healing process too, alongside the technology.
Sally and I are down in the igloo, relaxing before bed, so we are sending you lots of love and best wishes, and big thankyou’s for all your prayers and thoughts.
Night night,
from Ella,Sally, Damian and Annette.xxxx
Saturday, 7 March 2009
Day +29 and Day +30
What is happening to us to miss yet another days’ blog? SORRY…………………
Well back into it now with a vengeance. The truth is though, that yesterday was not a good day for Ella. She wasn’t well, because of her tummy problems. When Mr Wynn came in the morning he said that, although he is pleased with her blood results etc, he was going to speak to Sally and Damian about her further treatment, as she doesn’t seem to be responding to the steroids she has received so far. The donor cells and her own are still in conflict. When they met, the news he gave them was that he was contemplating flying Ella out to Holland that afternoon, to receive new donor stem cells which would help to calm things down. Why Holland? Because this is a very new field in immunology and the legislation in this country doesn’t allow it to happen. Finally he had requested the cells to be flown over here and they were due to arrive some time today. It was very alarming to hear this news as you can imagine, but after more discussions it became clearer that this treatment, although pioneering, is the next best step for Ella, and Sally and Damian have put their trust in his expertise and his teams’ skill.
Last night came and went in a flurry, which wasn’t helped too much by Ella’s new pain relief, which was a morphine pump which she controlled herself. Ella managed very well during the day, but during the night, when she needed it most, it was much too difficult to monitor. There is a strict ruling that only the patient can control it, child or not. The result was a very disturbed night, with an exhausted Ella, Mummy and Nanna at the end of it.
Today has been a much calmer day. Ella began by having a bedbath , given by nurse Kelly….much to Ella’s shock. At the end of it though she was relaxed and lying peacefully, trying to catch up on many lost zzzzzzzzzzzzzz’s.
Sally popped out to eat her breakfast ‘down below’ and phoned me to say that she had seen the cells arriving! We couldn’t believe that this had happened twice on the run. They came by ‘World Courier’ and word quickly spread. Mr Wynn arrived and had a meeting with Sally and Damian, to explain the procedure again and gain their consent, and the next thing was the transplant team were in the room and Ella was receiving her second transplant.
This time Kevin, (remember him from the first time?) held the small bag of cells while they went through Ella’s line and we all looked on in amazement, including Mr Wynn. This is the first transplant of it’s type in this hospital, the only others being at Great Ormond Street.
People had told us that when frozen stem cells are in transplant there is a strange smell. Well, there is. Mr Wynn said that it smells like sweet corn, or if you are posh…….asparagus! Of course ours smelled like asparagus. In fact the whole unit smelled of it, for quite a while afterwards. Apparently, it’s the gas the cells are stored in, and once they were in Ella’s body the gas is released through her breathing. How amazing! I love asparagus soup don’t you?
Ella has had a much more settled day. The morphine pump has gone and she now has background relief as before. There is still a long way to go in her treatment, with two more cell doses to be given in the next few weeks, but throughout all this our little angel shines on, inspiring us all with her braveness.
At the moment Sally and I are in the igloo, and Daddy is spending the night with Ella, so of course we know that she is in very good hands. She was very peaceful when we left and Damian will ring us if he needs extra help.
The blog tonight seems to have been serious news, but there hasn’t been a lot of time for those ‘lighter moments’ we seem to have each day……………except these ones!
What is happening to us to miss yet another days’ blog? SORRY…………………
Well back into it now with a vengeance. The truth is though, that yesterday was not a good day for Ella. She wasn’t well, because of her tummy problems. When Mr Wynn came in the morning he said that, although he is pleased with her blood results etc, he was going to speak to Sally and Damian about her further treatment, as she doesn’t seem to be responding to the steroids she has received so far. The donor cells and her own are still in conflict. When they met, the news he gave them was that he was contemplating flying Ella out to Holland that afternoon, to receive new donor stem cells which would help to calm things down. Why Holland? Because this is a very new field in immunology and the legislation in this country doesn’t allow it to happen. Finally he had requested the cells to be flown over here and they were due to arrive some time today. It was very alarming to hear this news as you can imagine, but after more discussions it became clearer that this treatment, although pioneering, is the next best step for Ella, and Sally and Damian have put their trust in his expertise and his teams’ skill.
Last night came and went in a flurry, which wasn’t helped too much by Ella’s new pain relief, which was a morphine pump which she controlled herself. Ella managed very well during the day, but during the night, when she needed it most, it was much too difficult to monitor. There is a strict ruling that only the patient can control it, child or not. The result was a very disturbed night, with an exhausted Ella, Mummy and Nanna at the end of it.
Today has been a much calmer day. Ella began by having a bedbath , given by nurse Kelly….much to Ella’s shock. At the end of it though she was relaxed and lying peacefully, trying to catch up on many lost zzzzzzzzzzzzzz’s.
Sally popped out to eat her breakfast ‘down below’ and phoned me to say that she had seen the cells arriving! We couldn’t believe that this had happened twice on the run. They came by ‘World Courier’ and word quickly spread. Mr Wynn arrived and had a meeting with Sally and Damian, to explain the procedure again and gain their consent, and the next thing was the transplant team were in the room and Ella was receiving her second transplant.
This time Kevin, (remember him from the first time?) held the small bag of cells while they went through Ella’s line and we all looked on in amazement, including Mr Wynn. This is the first transplant of it’s type in this hospital, the only others being at Great Ormond Street.
People had told us that when frozen stem cells are in transplant there is a strange smell. Well, there is. Mr Wynn said that it smells like sweet corn, or if you are posh…….asparagus! Of course ours smelled like asparagus. In fact the whole unit smelled of it, for quite a while afterwards. Apparently, it’s the gas the cells are stored in, and once they were in Ella’s body the gas is released through her breathing. How amazing! I love asparagus soup don’t you?
Ella has had a much more settled day. The morphine pump has gone and she now has background relief as before. There is still a long way to go in her treatment, with two more cell doses to be given in the next few weeks, but throughout all this our little angel shines on, inspiring us all with her braveness.
At the moment Sally and I are in the igloo, and Daddy is spending the night with Ella, so of course we know that she is in very good hands. She was very peaceful when we left and Damian will ring us if he needs extra help.
The blog tonight seems to have been serious news, but there hasn’t been a lot of time for those ‘lighter moments’ we seem to have each day……………except these ones!
Who are these two 70's throw backs?
Night night to everyone. Thank you for all your prayers and good wishes, and lots of love to everyone from us,
Ella,Sally, Damian and Annette.xxxx
Thursday, 5 March 2009
Day +27 and Day +28
Well first of all I have to apologise for the missing blog for yesterday. We just ran out of steam I’m afraid, no more so than Ella.
Yesterday began well, with us looking forward to a visit from Andrea and June. Ella and I had spent a really good night together, and Sally had retired to the igloo for a proper sleep.We were up and getting ready early, and deciding on our pj’s for the day. Dr Wynn was delighted with her good night. He decided to change the treatment slightly and the morphine was tweaked a little and reduced by 0.5.
I had only nipped out for a quick visit to the igloo to check it over for ‘damage’ and when I got back Ella was dressed in her new Juicy ‘tracky’ complete with make up! She was the talk of the unit.
Our visitors arrived, lovely to chat with them. Andrea couldn’t resist a quick massage of Ella’s feet! Then nurse Andrea rushed in to tell us that Ella’s new ‘hair’ had arrived. Great anticipation as Ella opened the box…..would she like it? wear it? hate it? We needn’t have worried, she did like it and put it on. I went to tell her nurses and they all shot in to see how she looked. She really looked very shy and guess what she did first? Pulled a strand to twiddle in her ear while she sucked her thumb. At last……hair to twiddle. We have decided to call her ‘Lizzie’ (named after Auntie Diannes’ new hair do.)
The afternoon brought mixed fortunes for Ella. She was tired and had tummy ache, and by the time bedtime came round she was really fed up. Auntie Rachael came to stay, and at last at midnight, when I tiptoed out, Ella was more settled for the night.
That leads us on to today. When I got up here it was to find Lizzie in bed with Ella, and Rachael catching some sleep in her own bed. Oh dear!
Anyway we moved on……..and Ella bravely opted to move on to the bed/settee for the day. Eventually it proved to be just the right thing to do. After choosing for it to be a spotty day, Rachael quickly got ready for ‘the visit’. He didn’t appear! Sven, the registrar came instead, examined Ella and pronounced her to be doing well, and to keep up the good work. Which is just what we did.
A tired and floppy Ella was snuggled and cuddled until Auntie Margaret and Reggie came, bearing ‘more cheer you up’ goodies. By that time she was ready to join in a little, especially when she was treated to the vision of Reggie wearing Lizzie. Even Ella couldn’t resist a smile……….well a grin really. Simon coming along really sealed it. She was wearing Lizzie and on good form, to show him how to play on a new underwater Wii game.
This room is definitely not big enough! We need an extension! I mean Annabelle’s drawers alone take up lots of space…………
So with that thought in mind Reggie and I set off to find more ‘storage solutions’ and a few other things, like hairclips!!!!!!!! We landed back with 3 more boxes, which are already filled and a selection of hardware for Lizzie!
Things got even better for Ella when she and I were sitting chatting. The Radio Lollipop team arrived to give Ella her present, for winning the colouring competition again. She was soooooo delighted, it really cheers you up to see that little face, radiant. What good work they do, for all the little people here.
Sally is back now and a peaceful Ella is fast asleep. The night ‘team’ have taken over and Sally and I are having a quiet cuppa! ( well in my case a cuppa and a ‘fly cemetery’).
Dr Wynn came at lunch time today, and once again reassured us that Ella is doing ok, and that she is responding to the treatment, if slowly.We’ll get there!
Night night to everyone, with our love, thanks and best wishes.
Sally, Ella and Annette.xxx
PS Thanks Simon. After weeks of wasted 'dongle time' I've learned how to write and copy the blog on Word and post it on line afterwards.
PPS Sally is working herself up to starting the cross stitch again..............
Well first of all I have to apologise for the missing blog for yesterday. We just ran out of steam I’m afraid, no more so than Ella.
Yesterday began well, with us looking forward to a visit from Andrea and June. Ella and I had spent a really good night together, and Sally had retired to the igloo for a proper sleep.We were up and getting ready early, and deciding on our pj’s for the day. Dr Wynn was delighted with her good night. He decided to change the treatment slightly and the morphine was tweaked a little and reduced by 0.5.
I had only nipped out for a quick visit to the igloo to check it over for ‘damage’ and when I got back Ella was dressed in her new Juicy ‘tracky’ complete with make up! She was the talk of the unit.
Our visitors arrived, lovely to chat with them. Andrea couldn’t resist a quick massage of Ella’s feet! Then nurse Andrea rushed in to tell us that Ella’s new ‘hair’ had arrived. Great anticipation as Ella opened the box…..would she like it? wear it? hate it? We needn’t have worried, she did like it and put it on. I went to tell her nurses and they all shot in to see how she looked. She really looked very shy and guess what she did first? Pulled a strand to twiddle in her ear while she sucked her thumb. At last……hair to twiddle. We have decided to call her ‘Lizzie’ (named after Auntie Diannes’ new hair do.)
The afternoon brought mixed fortunes for Ella. She was tired and had tummy ache, and by the time bedtime came round she was really fed up. Auntie Rachael came to stay, and at last at midnight, when I tiptoed out, Ella was more settled for the night.
That leads us on to today. When I got up here it was to find Lizzie in bed with Ella, and Rachael catching some sleep in her own bed. Oh dear!
Anyway we moved on……..and Ella bravely opted to move on to the bed/settee for the day. Eventually it proved to be just the right thing to do. After choosing for it to be a spotty day, Rachael quickly got ready for ‘the visit’. He didn’t appear! Sven, the registrar came instead, examined Ella and pronounced her to be doing well, and to keep up the good work. Which is just what we did.
A tired and floppy Ella was snuggled and cuddled until Auntie Margaret and Reggie came, bearing ‘more cheer you up’ goodies. By that time she was ready to join in a little, especially when she was treated to the vision of Reggie wearing Lizzie. Even Ella couldn’t resist a smile……….well a grin really. Simon coming along really sealed it. She was wearing Lizzie and on good form, to show him how to play on a new underwater Wii game.
This room is definitely not big enough! We need an extension! I mean Annabelle’s drawers alone take up lots of space…………
So with that thought in mind Reggie and I set off to find more ‘storage solutions’ and a few other things, like hairclips!!!!!!!! We landed back with 3 more boxes, which are already filled and a selection of hardware for Lizzie!
Things got even better for Ella when she and I were sitting chatting. The Radio Lollipop team arrived to give Ella her present, for winning the colouring competition again. She was soooooo delighted, it really cheers you up to see that little face, radiant. What good work they do, for all the little people here.
Sally is back now and a peaceful Ella is fast asleep. The night ‘team’ have taken over and Sally and I are having a quiet cuppa! ( well in my case a cuppa and a ‘fly cemetery’).
Dr Wynn came at lunch time today, and once again reassured us that Ella is doing ok, and that she is responding to the treatment, if slowly.We’ll get there!
Night night to everyone, with our love, thanks and best wishes.
Sally, Ella and Annette.xxx
PS Thanks Simon. After weeks of wasted 'dongle time' I've learned how to write and copy the blog on Word and post it on line afterwards.
PPS Sally is working herself up to starting the cross stitch again..............
Tuesday, 3 March 2009
Day +26
Today has been up's, up's and more up's........................shall we leave it there? No, we won't leave you in suspenders.
Our day began as per usual, the girls in bed and me arriving to wake them up. Sally dashed off for her shower, only to find the water cold, so decided to wait a while for it to warm up. We got chatting to nurse Niki and the next thing was Mr Wynn arrived, plus his team, to find Sally wrapped in a towel and Ella putting Nanna's make up on for her. ( by the way, Niki had the biggest grin on her face today, she got engaged last night and brought her ring in to show us.) He backed out discreetly and came later.
He is very pleased with Ella's blood results, but explained once again that because of Ella's history and the seriousness of the problem she has now, progress will be slow but that we are heading in the right direction. Ella has GVHD which means that the donor cells and her own cells are fighting for supremacy. The treatment is to use very strong drugs to suppress Ella's and fool them into accepting the donor cells as her own. It is a good thing to have a touch of GVHD at this stage because a recurrence of it is more unlikely. Ella is just very unlucky to be going through a very bad time. Having said that, she had her best night for a long time, and this showed in her wellness today!
After a quick 'wash and lick' it was one activity after another. She has really kept us on our toes...........both with her chatter and her cheekiness! We have had lots of visitors today as well, so they have added to the excitement. ( thanks Dianne, Kate and Atsoi).
Daddy and Sam came today as well, in between the girl's visits, and Ella was having a quiet moment. Suddenly she jumped up off the bed/settee, unplugged her monitors and headed for her bedside cabinet. What do we keep in there but................cake mixes. Ten minutes later we were all involved in making chocolate cakes! Twenty minutes after that there were 12 chocolate buns complete with 'choccy' buttons on top. Bless her...........she didn't ask for one............but did look rather longingly as Sam took some home and the rest were shared out too. She deserves the biggest treats when this stage is over, she really does.
Mr Wynn was extremely pleased with Ella's progress again today, when he called for his afternoon visit. When he came she was plaiting 'scubies', so that has to be a good sign doesn't it?
Teatime brought more things to do, colouring for the next Radio Lollipop competition and gluing sparkles onto belts. Phew! By the time 8.00pm arrived she was really ready for bed and it only took a short story to complete her day.
Sally and I are sat here, having just finished eating a homemade 'fly cemetery' each, thanks Auntie Dianne, and wondering if we should have a second. I said no, but you know Sally, she has always been headstrong.
We'll say goodnight and send lots of love to everyone.
Night night, Sally, Ella and Annette.xxx
PS Ella sends her love to Lucy for her lovely presents. She is saving the biscuits until she's able to eat again. And big hugs to Grace hope you're feeling better. Xxxx
Today has been up's, up's and more up's........................shall we leave it there? No, we won't leave you in suspenders.
Our day began as per usual, the girls in bed and me arriving to wake them up. Sally dashed off for her shower, only to find the water cold, so decided to wait a while for it to warm up. We got chatting to nurse Niki and the next thing was Mr Wynn arrived, plus his team, to find Sally wrapped in a towel and Ella putting Nanna's make up on for her. ( by the way, Niki had the biggest grin on her face today, she got engaged last night and brought her ring in to show us.) He backed out discreetly and came later.
He is very pleased with Ella's blood results, but explained once again that because of Ella's history and the seriousness of the problem she has now, progress will be slow but that we are heading in the right direction. Ella has GVHD which means that the donor cells and her own cells are fighting for supremacy. The treatment is to use very strong drugs to suppress Ella's and fool them into accepting the donor cells as her own. It is a good thing to have a touch of GVHD at this stage because a recurrence of it is more unlikely. Ella is just very unlucky to be going through a very bad time. Having said that, she had her best night for a long time, and this showed in her wellness today!
After a quick 'wash and lick' it was one activity after another. She has really kept us on our toes...........both with her chatter and her cheekiness! We have had lots of visitors today as well, so they have added to the excitement. ( thanks Dianne, Kate and Atsoi).
Daddy and Sam came today as well, in between the girl's visits, and Ella was having a quiet moment. Suddenly she jumped up off the bed/settee, unplugged her monitors and headed for her bedside cabinet. What do we keep in there but................cake mixes. Ten minutes later we were all involved in making chocolate cakes! Twenty minutes after that there were 12 chocolate buns complete with 'choccy' buttons on top. Bless her...........she didn't ask for one............but did look rather longingly as Sam took some home and the rest were shared out too. She deserves the biggest treats when this stage is over, she really does.
Mr Wynn was extremely pleased with Ella's progress again today, when he called for his afternoon visit. When he came she was plaiting 'scubies', so that has to be a good sign doesn't it?
Teatime brought more things to do, colouring for the next Radio Lollipop competition and gluing sparkles onto belts. Phew! By the time 8.00pm arrived she was really ready for bed and it only took a short story to complete her day.
Sally and I are sat here, having just finished eating a homemade 'fly cemetery' each, thanks Auntie Dianne, and wondering if we should have a second. I said no, but you know Sally, she has always been headstrong.
We'll say goodnight and send lots of love to everyone.
Night night, Sally, Ella and Annette.xxx
PS Ella sends her love to Lucy for her lovely presents. She is saving the biscuits until she's able to eat again. And big hugs to Grace hope you're feeling better. Xxxx
Monday, 2 March 2009
Day +25
Welcome to sunny Manchester........it's been really quite nice today, well for most of it anyway, and another good indoors too!
We were up bright and early ready, for Dr Wynn's visit, at least Sally and I were. Ella was quite sleepy still, so she had a lie in today while we got organised. By the time he came in though, Ella was settled on the bed/settee and ready. He said that he was very pleased to hear that she had enjoyed a better weekend. Still a long way to go until the correct balance is reached, but we are moving forwards.
Aunty Rachael and Sam arrived exceedingly early too. Good job really because Ella had a lot of pampering to fit in before lunch. Sally and I went to the restaurant with Sam for a spot of breakfast and by the time we got back the bed bath was complete, pj's on and the foot massage was in full swing.I left the salon to 'take the morning air' via the co-op and arrived back to find all nails french polished and decorated with flowers. Gorgeous.
Lat night Ella was presented with a new gift from the nurses..........a commode........otherwise known as 'the throne'. She wouldn't even look at it last night, let alone sit on it. However, today she had to, wet nails and all that! It has been sort of successful, that is if you can get it across the room in time. I think it is pre 1950's and the brakes seemed to be jammed on. Rachael was having a scuffle with it just as Mr Wynn appeared for his afternoon visit, in fact she was kicking it! He didn't comment though.
I've had a run today as well..........with one of the workers on the unit, Irene. She is lovely, but in her professional capacity as 'the kitchen fridge tidier outer' she wasn't too impressed that my shopping today had spread passed my limit, of half a shelf. I was even less impressed I can tell you, especially when I had to find homes for 4 baking potatoes, grapes, a packet of tongue, beetroot, a bag of lettuce and a large slice of stilton, darling! I'm not telling where I've hidden them either.
The three of us were watching tea time TV when Nurse Karen came to say that Mr Wynn had just phoned, to say that he had decided to adjust Ella's drugs for tonight, with a new steroid. He never has his 'Charges' far from mind, and works very closely and confidently with his nursing team.
At present Ella is sleeping peacefully, dreaming of crisps and chocolate, we think. She keeps bringing food into the conversation, and has asked everyone who has entered the room to bring her 'Nik Naks' and chocolate. They are strictly off limits though, along with everything else, except tiny sips of water. Her tummy has to have a rest. We haven't been hungry since breakfast today, but tonight we had to succumb to Auntie Diannes' chicken and couscous, which she sent us. Where did we eat it? Outside on the bench.....in the dark. It was fab.
We are including a lovely photo of Tiger and Geoffrery, but you've got to guess which is which.
Ella is the pretty one of course and Sally is the hungry looking one.
Welcome to sunny Manchester........it's been really quite nice today, well for most of it anyway, and another good indoors too!
We were up bright and early ready, for Dr Wynn's visit, at least Sally and I were. Ella was quite sleepy still, so she had a lie in today while we got organised. By the time he came in though, Ella was settled on the bed/settee and ready. He said that he was very pleased to hear that she had enjoyed a better weekend. Still a long way to go until the correct balance is reached, but we are moving forwards.
Aunty Rachael and Sam arrived exceedingly early too. Good job really because Ella had a lot of pampering to fit in before lunch. Sally and I went to the restaurant with Sam for a spot of breakfast and by the time we got back the bed bath was complete, pj's on and the foot massage was in full swing.I left the salon to 'take the morning air' via the co-op and arrived back to find all nails french polished and decorated with flowers. Gorgeous.
Lat night Ella was presented with a new gift from the nurses..........a commode........otherwise known as 'the throne'. She wouldn't even look at it last night, let alone sit on it. However, today she had to, wet nails and all that! It has been sort of successful, that is if you can get it across the room in time. I think it is pre 1950's and the brakes seemed to be jammed on. Rachael was having a scuffle with it just as Mr Wynn appeared for his afternoon visit, in fact she was kicking it! He didn't comment though.
I've had a run today as well..........with one of the workers on the unit, Irene. She is lovely, but in her professional capacity as 'the kitchen fridge tidier outer' she wasn't too impressed that my shopping today had spread passed my limit, of half a shelf. I was even less impressed I can tell you, especially when I had to find homes for 4 baking potatoes, grapes, a packet of tongue, beetroot, a bag of lettuce and a large slice of stilton, darling! I'm not telling where I've hidden them either.
The three of us were watching tea time TV when Nurse Karen came to say that Mr Wynn had just phoned, to say that he had decided to adjust Ella's drugs for tonight, with a new steroid. He never has his 'Charges' far from mind, and works very closely and confidently with his nursing team.
At present Ella is sleeping peacefully, dreaming of crisps and chocolate, we think. She keeps bringing food into the conversation, and has asked everyone who has entered the room to bring her 'Nik Naks' and chocolate. They are strictly off limits though, along with everything else, except tiny sips of water. Her tummy has to have a rest. We haven't been hungry since breakfast today, but tonight we had to succumb to Auntie Diannes' chicken and couscous, which she sent us. Where did we eat it? Outside on the bench.....in the dark. It was fab.
We are including a lovely photo of Tiger and Geoffrery, but you've got to guess which is which.
Ella is the pretty one of course and Sally is the hungry looking one.
Tiger and Geoffrery both have warm tummies to help with tummy ache. Sometimes they work, sometimes they don't, either way they have been a much loved pressy from Reggie.
We are finishing now and about to wax our lips, goodness only knows why, it's a girl thing you have to do on sleep overs isn't it?
Night night and lots of love to everyone,
Sally, Ella and Annette.xxx
Sunday, 1 March 2009
Day +24
"White Rabbits" to everyone. Who can believe it's March already?
Well, we have had a really good day here. It began early, as usual, but today Ella was already watching TV when I arrived. Then Sally came up with a cracker.......have I got time to dye my hair before the Dr arrives? "Well," I said "You've got 10 mins, he's on the ward." In actual fact she only had 5mins and there he was! Goodness only knows what he was thinking when he walked in. Anyway, the good news is he was pleased with Ella and even suggested that the morphine could be turned down a little......so now we are 0.5 less than yesterday.
Ella had a really good nights sleep, with only a couple of 'episodes'. This, of course, meant that she was in fine voice when it came time for her bed bath. Still it's rather lovely, in a strange kind of way, to be told off. We chose spotty pj's and then it was onto the bed/settee for a change of scenery.
Ella was really in the mood to join in today. We began by hand washing a couple of Annabelle's outfits,
followed by collage on a drawing of Angelina Ballerina. Here is Ella with Nanna working on Angelina. This took rather a long time in all, and by lunch time Ella was beginning to droop a little. We decided a little snooze was in order and we transferred to the bedroom 'department' with Geoffrey and Tiger. Who are they you may wonder? I'll give you clue....they have warm tummies.Then,Grandma,Grandad and Uncle Gav arrived for a visit, followed by the second half of film we started yesterday. Still no zzzzzzzzzzzzzzzz's. Never mind hopefully we'll catch up at bedtime.
Because Ella is nil by mouth, at present, we think it is only fair to eat in her room whilst she is asleep. It has been 'interesting' organising our meals, one of us going out at a time. Unfortunately the parent's room on the unit is closed at the moment, so we have had to go down below to another parent's den, go to the restaurant or the igloo. The secrets we have kept from her today!
At the moment we are watching the ice dancing and Ella is still awake and looking forward to her next favourite programme on Sunday night.
Thought we would share with you some exclusive, rare, never seen before snapshots of the igloo. OK magaz
ine have bid for the exclusive but there offer was just not high enough.
ine have bid for the exclusive but there offer was just not high enough. 
The first one is of Prayer Bear in bed,( if you look carefully on the horizon you can see him) and secondly the 'ever growing' window box. Prayer Bear has promised to try to come out of hibernation, so you may see more of him!
Well it's 8.30pm and Ella is fast asleep. She is missing her programme......guess who'll furious when they wake up?
Night night and lots of love to everyone. Thank you for all your lovely messages and prayers, they make our day.
Sally, Ella and Annette. xxx
PS Sorry about the gaps in the text, when we add photos these huge holes appear, and when we fiddle with them the whole lot disappears. ( as the ................. said to the ......................).
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