Day +54
White rabbits!!!
Good morning everyone. Hope you all had a good night, as we did here…….in the end. In fact Ella’s night ended at 12.30 this afternoon! She had the longest lie- in ever. (Practising for when she’s sixteen I think.) All her regular visitors, physio,teacher and of course the Drs kept coming back, in the hopes that she had woken up .
At last she opened those little eyes and said “I’m starving! I’ve been dreaming about macaroni cheese.”
This caused a big dilemma because we had already been told that she would be nil by mouth today, to give her tummy a day off. Everybody who came into us after that was quizzed about their favourite foods, what they were having for lunch etc, and the best question of all “ When is Dr Wynn coming, so I can ask him if I’m allowed macaroni cheese?”
Whilst all this was going on we did manage to get quite a lot done to the wall. We drew, coloured, cut out, stuck and it is even more glorious than yesterday. Photos tomorrow. Sally has been determined to finish off the eggs, and she has. They are hanging from the ceiling now, beautifully decorated. We still have the problem of Sam’s worm…….it’s a toss up, worm or caterpillar? But more important, will he notice?
Dr Wynn came early afternoon and he has decided to change some medicines. One is the anti-sickness, which actually makes Ella sick, and has done from the beginning. Another is the anti tummy cramp medicine, which is being changed to try another. But best of all……..Ella could have her pasta. So off Sally went to cook her non gluten, non dairy, non wheat, non taste pasta, ready to melt into it her non gluten, non dairy, non taste cheese slice. Ella loved it though, and that is the most important thing, isn’t it?
All Ella’s lines were busy right up until 6.00pm tonight, so we didn’t actually get off them until about 6.15pm and then only for an hour. Still, it gave us time to walk along the main corridor and go down to the cave. Ella didn’t feel like walking today, so she enjoyed the ride, well wrapped up in her buggy.
Nurse Rachel has been looking after us again today. She and Ella know about each others lives almost inside out by now, as you can imagine. Anyway, Rachel flicked a switch today, on the control board above Ella’s bed head, and wow….there was light. A rectangular bank of 8 spot lights suddenly came on……..and they change colour through a sequence. None of us can quite work out how that happens yet, we still have to change them manually, but they are lovely. At the moment they are glowing pink, and giving the fairies a run for their money. They look a mixture of disco and UFO landing lights.
It is almost time to start getting Ella settled for bed. We are watching American Idol, Sally is painting and I’m blogging. I’m going to include Auntie Dianne’s recipe for macaroons. We can highly recommend them!
APRICOT and COCONUT SLICE
Ingredients;
225g (8oz0finely crushed plain biscuits,such as digestive or rich tea
175g(6oz)ready to eat dried apricots,finely chopped
125g(4 half oz)desiccated coconut
125g(4half oz)unsalted butter
397g can condensed milk
175(6oz)plain or milk chocolate

Method;
You will need a lightly greased and base lined 20cm by 30cm(8inch by 12inch)shallow tin.
Mix together the biscuits,apricots and coconut in a large bowl.
Melt together the butter and condensed milk until smooth,then mix into the crumb mixture. Spread into the prepared tin,pressing down evenly.
Melt the chocolate and spread evenly over the top of the biscuit base. Refrigerate untilset,then cut into slices and ENJOY!!!!!!!!

Makes 16 to 18 slices…………..or 4 extra large portions!

There it is then, they are truly gorgeous. We have got our stash in the fridge up here Or though I may transfer them to the fridge in the cave where they will be safer!
We are going to finish now and enjoy a little TV before bed, that’s if I can get Sally away from her painting. We are both at it now. I must admit it’s very therapeutic. The cave is quite cosy….just one big problem, there isn’t a light in the loo. It is like the proverbial black hole in there. We have been using a torch!
Night night to everyone. As usual we send our love and thanks for all your well wishes, prayers and support.
Ella, Sally and Annette.xxx

Day +53
Hi there everyone. We are back in business again. Rachael and Damian have been in charge of blogging over the weekend and we appear to have a few missing days. I’ll try to catch up for you.
By the time I left on Saturday, at teatime, Ella had had a really good day. She’d had a fairly settled night with Rachael and I, and the on duty Dr had given her a good report. The only problem was that her lines weren’t bleeding back again, so that meant that she had to have her blood taken IV, which isn’t ideal. Of course, all her veins were having the morning off so another delay!
Ella chose her dinner again from her extensive ingredients, and enjoyed her chicken and veggies. Rachael and I were having a cuppa soup each, which Ella was eyeing up. Quite by chance Rachael had left some of Ella’s ‘veggie juice’ in the pan……and bingo…….veggie cuppa soup appeared for Ella. She was delighted.
Shortly after lunch Damian arrived and it was time to take the lines down. We were motivating Ella all the time, to encourage her to try a trip out, try a walk etc and a few minutes later off we went, as Ella showed Daddy how well she could walk. In fact she walked off the unit and to ‘the slope’. Great stuff.
I know from ‘phoning here that Ella has had quite settled nights and busy active days. She, Rachael and even Daddy have made a fabulous start on our Easter display, with lots of collage, painting and designing going on. It definitely has the wow factor when you walk in the room. As you can see from the photo there is a kennel for Ella’s puppies (thanks Ian) and the collage of Ella even has real nail varnish on! Sally and I are looking forward to carrying on with it tomorrow. I know there are plans for lots of flowers, bees, birds and ….oh yes….Sally’s papier mache eggs, of which there are now six hanging from the shower rail !!!!!( I promise we will let Ella help…………………….ha ha.)
I also know that Ella has been baking Easter cakes with Ann today. Chocolate covered buns with mini eggs. Unfortunately Ella can’t have one, so Rachael asked to get in touch with the dietician, to find out if none- dairy chocolate buttons would be ok, mixed with rice crispies…….to make nests. The answer? YES. So we now have a lovely box of nests, especially for Ella.
Damian left at dawn today and so Rachael held the fort valiantly until Sally arrived back with Sam. He has been here for his check up. Dr. Arkwright was pleased with him, and he is back on Friday for his’ bloods’ to be done ( samples). Sally is going to ask Dr Wynn if he can have them done on the unit, so we don’t have to wait in clinic.
When Dr Wynn came today he decided to keep all the medication more or less the same for the time being. Certainly the feed lines will stay up, although some of the drugs have become oral, the more Ella can tolerate.
One more exciting piece of news. We have moved home………from the igloo……… to the cave! It’s very cosy, as it’s name suggests, and is more or less under Ella’s room. This time there are no windows at all, but it has got the advantage of being nearer for ‘night time exchanges’. We took Ella down to have a look at it on Saturday, so it has had the royal ‘shrug of approval’. Honestly, by the time Rachael and I had moved all the ‘stuff’ into it, accumulated over nine weeks, and changed all the furniture around in it, we were plum tuckered out!
Anyway, we are going to finish for tonight. I have tried to keep you up to date, and we hope you enjoy the photo of our blossoming Easter wall. Let us know your ideas for interesting additions!
Night night, and lots of love and best wishes to everyone. Well done Daniel, we know you are being brave as you get over chicken pox.
Thankyou for all your loving support and prayers, as usual.
Ella, Sally and Annette.
PS recipe to come tomorrow....for Auntie Dianne's macaroons!!!!!!!!!!!

Day+50
Hi everyone. Here we are at the beginning of another weekend. How the weeks fly by! I don’t know about the beginning of Spring..it’s like mid winter here.
Well, we had a super start to the day and that’s how it continued, right up until now, bedtime.
After a difficult start to the night, Ella then went on to have her best nights’ sleep up to date. She slept from 1.00am until 8.30am. In fact she had only just woken when Auntie Rachael and Sam arrived for the day. It makes such a difference when she is rested and not in any pain. Of course Ella must have been dreaming about food, because her first request was for toast.
When Dr Wynn arrived he already knew the results of the night. Of course he couldn’t get any conversation from her until she suddenly asked him “ What did you have for breakfast?” and “What are you having for dinner?” . When he answered “ Marmite and cheese sandwiches” I don’t think Ella was too impressed. He has promised to bring Ella the menu, on Monday, of a posh dinner he is going to tonight, then she can discuss the pros and cons with him. I don’t know, he brought her the programme from the Liverpool match last week. Anyway, onto his treatment. The pain control seems to working now, and the steroids are going to be oral in future, rather than IV, in order to help more directly with the tummy problems.
We began planning how we were going to spend the rest of the day. We had quite a lot of things to fit in. The teacher was coming to make daffodils,( a great success) the physio was coming ( not too successful, wrong time of day) ! But we began with T shirt painting. Auntie Rachael stencilled whilst Ella and Sam painted( with help). Sam’s green and blue frog had an ‘unexpected’ blue blob under it, which we turned into a pond, and so it went on, until the whole of the front of the T shirt is now covered with design. The painting will have to finished over a few days I think!
That got us thinking about Easter and planning our Easter display, and where we are going to put it. We have got some eggs to paint etc but Sally had the brain wave to make papier mache eggs……umm. This lady was not for turning! She took Sam out for a walk and came back with enough ballons, paper, card, glue etc to decorate a small school! The problem was that the glue is Pritt stick rather than paste, so Rachael and I had the joy of watching Sally pulp…squeeze…mash…and quash 2 pritt sticks into liquid glue!!!!!!!! Is it possible? Yes it is. A bit lumpy, but that adds to the fun doesn’t it?
Then it was ‘balloon time’. Sam insisted on having a worm, so he had the long green ballon, and there was just enough ‘stuff’ left to put one layer on two of the other balloons. They are now hanging in all their glory from the shower rail!
I think the verdict on today has been “a good day”. Ella has been peaceful and happy. She has enjoyed her ‘soup’ and the other tit bits she has had. We had a lovely time when Ella was off her lines for a couple of hours this afternoon. We had a walk down the main corridor where Ella bought herself a painting set, and then a short trip outside, it was rather too cold to go as far as the birds.
Rachael is staying tonight, so I can feel a ‘lie in’ coming on for me in the morning, can’t you? No, I wouldn’t be that mean.
Night night to everyone, with lots of love and thanks for all your love, support and prayers.
Ella, Annette and Rachael.xxx

Day +49
Good morning from freezing cold and rainy Manchester. The weather was awful this morning and not much better this afternoon. It makes me almost glad that the igloo washer is broken and that we don’t have to traipse down there. On that note, the offending machine has been reported….and the doctor will see it next week!
Our day began quite late really, about 8.30am, after a comfortable night. (‘Ups and downs’ as usual but no tummy ache to speak of.)
I showered first, and Mummy waited until Dr Wynn had been. Ella of course was silent, looking up at him and his ‘assistants’ and refusing to join`in with any banter. He said he would be back later in the day to speak to us about results.
The little monkey……the moment they left the room, up jumped Ella, full of beans and looking forward to ‘doing’ something. I said “I wish Dr Wynn would walk back in now and catch you actually talking Ella.”
At this point Sally decided to dye her hair again. Remember last time, with the NHS towel? Well this time at least there were no Drs. around. Of course the teacher, not Janet, and the physio arrived in the middle of it all, but we decided that a later session for both would give Ella time to get up and enjoy her wash etc in peace. All went well and we both enjoyed the bed bath, and the getting on of gorgeous new baby doll pj's from Sally Ann. We just had to take a photo or two.
Ella nibbled her way through the morning, a little of this and that. All things she’s allowed of course, and the tiniest amounts. The teacher came back about 11.30 to do some spellings, adding ‘ing’ and the spelling rules you have to follow! Ella was a good pupil today, and kept that concentration going for half an hour!
It wasn’t long before Mummy was ordered to the kitchen, to make the promised soup….today carrot and potato. Desired result, Ella sipping about 5 spoonfuls in absolute ecstasy.
Early afternoon saw Reg appearing. He’s been on the Sylvanian trail again and has found a member of the duck family. It’s really sweet and Ella loved it. Thanks Reg. The four of enjoyed a quiet afternoon, Ella making Easter cards and Mummy making plaster of paris models. Just like the old days eh? When the physio arrived she went over Ella’s exercises again and then walked her around the room. (Unfortunately Ella couldn’t walk out onto the unit because one or two of the children have infections.) We were hoping that she would have some off her lines today, but the nurses were on ‘catch up’ after yesterday, and all her lines were busy all day. Anyway, we have been promised some time off tomorrow. Ella wants to take us up the main corridor to find a change machine she spotted the other day. She doesn’t miss much does she?
At last the time came for Dr Wynn’s report and it was a positive one. There is still a long way to go but indications are that the GVHD in Ella’s gut has improved, and her condition is ‘stable to improving’. It is such wonderful news to us, and I’m sure to you too. The pain control has changed again today as well. From tonight the morphine will be given twice daily, on slow release, and can be topped up if needed. A consultant anaesthetist was brought in by the pain team and this was the plan devised between them and Dr Wynn.
At the moment Ella is fast asleep and Sally and I are battening down the hatches for the night. So we will say goodnight and thank you all for your love and prayerful support. It means such a lot to us .
Ella, Sally and Annette. xxx

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Day +47 and +48
Hi everyone. I’ll jump in straight away with yesterday’s visit to Booth Hall shall I?
Well, it was an early start, with all fingers and toes crossed that the ambulance booked to take us would arrive on time. We were all ready and there it was, bang on. Procession number? I’ve forgotten ! Ella in the lead, lay strapped onto the trolly, being ‘pushed and pulled’ by two paramedics, followed by Sally and myself with the luggage. I don’t know …………..us girls when we go off out for the day!
The journey isn’t too far actually, and we were on the ward about 10.15am, and what a ward. A busy general ward, full of lively noisy children….so different from here on our little island! We were put into a cubicle, so at least we were lucky to have some privacy. We spent the waiting time snoozing mostly and watching Matilda. Then suddenly Ella had a burst of energy, and once encouraged by their play specialist, she painted and glittered a photo frame. Ella ‘went down’ about 3.45pm, and was back on the ward by 5.30. We were all fed up by then, and I can’t believe I’m saying this, but we couldn’t wait to ‘get home’. We had to stay though for a couple of hours, to make sure Ella was recovered from the anaesthetic, then our transport was called. To get us back by ambulance the staff have to ring 999…crazy isn’t it? Anyway, at 9.30 we were home and ready for a cuppa. Results on Thursday, following a meeting with Dr Wynn.
Today, Wednesday, has been a very quiet day, in comparison to our day out. I came up to the unit just before 5.00am and The girls were both fast asleep, and stayed that way until easily 8.30am. It gave me time to catch up on some reading.
The main input from everyone today has been involved with getting on top of the pain control, which still isn’t right for Ella yet. Dr Wynn has said this is his priority at the moment. The morphine has been upped again today and tomorrow Ella will start trying a new pain killer through her line.
She has really good spells, when she is chatty and lively, like lunchtime, when she just sat up and made us both laugh, by joining in our conversation when we thought she was asleep. That was followed by a request for mashed potato and carrot, with toast on the side.! The idea of eating is much more appealing than the actual eating though. She only nibbles, but she does enjoy those nibbles!
I had promised to make some soup for tea….you’ve guessed it…potato,carrot and parsnip…so Mummy went off this afternoon to hunt for lactose free stock cubes, just to ‘tasty it up’ a bit. It worked beautifully.
Well, Sally and I are on our second washer! The one in the igloo is broken now as well. What a mess. Hopefully the Family Care Team will be able to get it fixed quickly. At the moment it’s winging its’ way ( our washing that is), to Southport in Ian’s car boot. Thanks Ian.
At the moment Ella is fast asleep, thumb in and giving Lizzie a good ‘hair do’. Sally and I have just eaten our tea and ‘Corrie’ has just ended. It gives us time for a cuppa and a chat before it all begins again. ‘Nights’ have become the new ‘days’ for us.
Night night and lots of love to everyone, especially Uncle John for his birthday on Monday. Thank you for all your prayers and love, as usual,
Ella, Sally and Annette.xxx

Day + 46 and Day +47
Hi there. It’s catch up time again. I had a night at home on Sunday, and Sally had the igloo to herself whilst Daddy was on night duty. Soooooooooo no blog, sorry.
Well Mother’s day for us began early, as us girls swapped cards. Ella had made Mummy a beautiful bracelet with Rachael, a necklace for me, and cards for both of us. They have got pride of place on the TV!
We started to get ready for our visitors and think about ‘the jellies’. That’s when ‘jellygate’ began, with me going to the restaurant to sneak out some paper cups, as soon as it opened. That went well, but by the time I got back Ella was asleep again. We waited and waited for her to wake, and in the end a sleepy Ella agreed that Nanna should make them in the igloo, where there is more space in the fridge. However, the kitchen had been left in a ‘bit of a state’ by another resident, so I was not in a good mood by the time I had tidied up their mess!
At last the time arrived for ‘the arrival’, and in they came like a whirlwind. Ella was wide eyed as Sophie and the boys headed straight for the Sylvanian village. Needless to say it didn’t take long for the whirlwind to hit the village, as you can see from the photo. It was lovely to see the children playing though. It’s such a long time since they were all together. Ella stayed in bed and watched at first, then later Sophie sat on the bed with her and played with Annabelle. It was very touching.
When the boys began to get restless, as boys do, it was time to take them outside to see the birds. Off they went, while Rachael and I got Ella wrapped up, and installed in her buggy. Ella insisted that we set off with all the bits to make the sandwiches with, although she wasn’t too sure at first if she wanted to go at all, and no wonder really after all these weeks indoors, but we got there in the end.
We took her down to the birds, where the boys, Sophie and John had already dug up a worm, to feed the birds with. Yuk! We spent just a few minutes outside…….it was cold to begin with…….and Ella wanted to come back inside. It must have been very daunting for her. So back we came, and as you can see from the photo Sophie held Ella’s hand all the way back to the cubicle. It did make us smile but it was another lump in throat, I’m afraid.
Shortly after that I left for home, but I hear that Ella then took complete charge of butty making from her bed, not only making them but also making sure that all her underlings ate every mouthful! They had been pre- warned by Rachael that they do like chicken butties and sugar free jelly. They ate everything, bless them!
This morning, Monday, I spoke to Sally after Dr Wynn’s visit. He said that the pain control obviously isn’t right yet, because the tummy ache has not stopped properly, so the oral morphine strength has been increased to help out.
Today Ella has had a quiet morning and later in the after noon a visit from Debbie, that’s them together in the photo. I arrived back about 5.30pm to find an empty cubicle. Panic……where were they? Only off out in the buggy!!!!!!!!! I had forgotten about the lines being down. I found them on the main corridor, where Ella had bought herself a drink from the machine. She seemed more confident today to be out about. It is very important that she has a little trip out each day, so that she doesn’t become ‘hospitalised’.
Tomorrow we are going to Booth Hall where Ella will have her ‘scope. The ambulance is coming between 8.00 and 9.00am, so an early start for us all.
We have just said bye to Atsoi. She has been to visit after work. Lots of baby talk…..with her first baby due in a few weeks time.
At the moment we are watching ‘Enders. Ella is in bed, with Mummy on hand and I am blogging. We are looking forward to an early night, although Sally and I are quite rested , after our nights off duty. I am looking at my twinkling toes ( they have been pampered today……a Mother’s Day treat from Sally and Rachael ) and wondering whether or not it is safe to put my full shoes back on yet. You know what I mean don’t you ladies? Even 8hrs later I’m likely to smudge them.
We are finishing now. Sally and I are going to get a bite to eat before it gets too late, and hopefully Ella will have a more peaceful night.
Night night, and lots of love to everyone. Thank you for all your prayers and well wishes, as usual.
Ella, Sally and Annette.xxx

Day +44
Happy Mothers Day to all you Mums out there……..hope you all have a super day.
Well, today started off bright and sunny, a good omen we thought for our picnic. You’ll find out later how we went on.
When I got up to the unit, after a lovely lie in until 6.30, the TV was on and Daddy was watching FiFi on his own………with glazed eyes, and Ella was fast asleep. Not a good sign I thought to myself! Damian’s lost the plot. However, we soon got back into real life, and Damian told me that their night had gone well, with Ella sleeping for a good part of it.
She carried on through most of the morning fast asleep, with a settled tummy, and Damian and I were almost twiddling our thumbs. We found things to do though, like taking turns to go for breakfast, doing the washing transfer to the igloo, painting my lion picture and checking on Ella every 5mins to make sure she was ok.
Eventually she woke up….about 11.00 and was really, really good when we got her washed, sorted out the ‘botty’ and changed pj’s. She topped that by walking over to the bed/settee, and promptly fell asleep again.
When the weekend Dr. arrived ( he is the other consultant ) he was pleased with Ella. We asked if the sleepiness is to do with the oral morphine, and he said yes maybe, but she doesn’t show any signs of ill effects, so all is well. Rest and sleep are great healers too, and she is certainly getting both at the moment…………and doesn’t she deserve them, after such a turbulent week?
Damian left for home, I painted and waited for Ella to wake up. She did……put some ‘lippy’ on ready for the picnic and fell asleep. Oh well I thought, when the lines come down she’ll be all the more rested. At last the big moment arrived,Nurse Rachel detached everything, the stand and monitors were put in the corner……….WE WERE FREE.
I know by now you will have guessed what happened next. Yes. Ella slept all the way through the afternoon, waking up in time for tea. By now the lines were back up and the bleepers had started. The Sand Man has really sprinkled his dust in our room.
The next conversation went as follows;
“ Can I have something to eat Nanna?”
“Yes of course.What would you like sweet pea? Would you like a chicken sandwich?”
Ella shakes head.
“ Could I have mashed parsnips, carrots and some chicken please ?”
“ Yes of course sweet pea,”
Nanna retires to the kitchen to rustle up the menu, using a parsnip she just happened to have in the cupboard!
Ella insisted on mashing in her own special marg. and she enjoyed the finished products. Only enough to feed a small bird, but nevertheless enjoying it.
Sally and I are sat having a hot chocolate, watching Notting Hill (with the gorgeous Hugh Grant), and over there is sleeping beauty……doing what comes naturally. She is even lay on her side, with her legs relaxed! Wonderful. As you can see we have given up twiddling our thumbs, and are taking a well earned evening rest and planning tomorrow’s picnic. Ella has already said that she wants to make the jellies, so my first job in the morning is to sneak 5 ( one for each child ) paper cups from the restaurant to make them in. I think the NHS can stand it, don’t you? Sally is on butty duty,HA.
We’ll finish now and get back to Hugh. Lucky Julia Roberts eh?
Night night and thankyou for all your loving wishes and prayers.
Ella, Sally and Annette xxx
PS Prayer mats out for a warmish, sunnyish day please.

Day +43
Good morning everyone. Today is lovely and sunny and very warm.I think it has caught us all out. The unit is extremely warm and the fan has been on for most of the day.
Ella had an unsettled night and this led to a morning of tummy ache, which really got her down I’m afraid. We really wanted to get on top her pain relief, especially with the weekend coming up. So when the pain relief nurse came there were big discussions about how it is going to be handled and a solution was found. Ella is now having her morphine orally, plus the lollies if she needs them. Everyone is in agreement that the lines need to come down for a couple of hours tomorrow (Saturday) so that we can take her out into the sunshine ( prayer mats out please) for a little walk to see the birds and perhaps a picnic. We have something similar planned for Sunday too ( prayer mats out again please for good weather) when Rachael,John and the gang come over for Mother’s Day. Of course to make it fair the picnic will only have in it what Ella is allowed. (If you look back at the previous blog it will remind you of what we’ll have in our basket.)
Auntie Rachael brought Sam along this morning which was great for us all. I took him along to the Restaurant, where he polished off sausage and hash browns, followed by chocolate fingers and a drink of coke. He was chatter, chatter, chatter…..it was lovely.
When we got back to the unit Trevor was there ready to put the next lot of cells through. We put Stuart Little on DVD and watched that whilst it was going on. Quite bizarre really!
Muriel came to make a Mother’s Day cards with them both, and they really enjoyed it. Sam went first whilst Ella had a little snooze and then Ella had a go. It really cheered her up. She’d had her first oral and was relaxed and pain free. What a difference.
Mummy went back with Rachael and Sam and whilst we were waiting for Daddy to arrive Ella had a big, well deserved, quality sleep.
She woke up briefly and asked for toast, so whilst Nurse Rachel sat with her I popped out to make some. She nibbled each tiny piece, and left a few crusts, then back to sleep. The same happened when Daddy arrived. I’d asked Damian to bring some cooked chicken to make a sandwich for Ella. ( I don’t know how big he thought the butty was going to be, because he actually brought a whole cooked chicken ). She nibbled a couple of tiny pieces and fell back to sleep. That has been the pattern for the time since tea time as well. She really enjoyed a couple of peach and pear slices in their own juice, which she sat up to eat on her own, then ……..you’ve guessed it…….sleep.
I’m in the igloo at the moment, blogging, having an early night. Damian and I decided to cash in on Ella’s sleeping and get as much as we can, while she is.
I can hear lots of other people coming and going. It’s quite interesting really, guessing which rooms they have gone into etc. A bit like a hotel corridor really, but without the rowdiness.
I’ll finish now then and let you know how the picnic goes tomorrow. Please let it sunshine between 2.00pm and 4.00pm, and please let Ella choose chicken butties.We’ve got plenty of that!
Night night to everyone, and thankyou as always for all your prayers and good wishes.
Ella, Damian and Annette.xxx
PS Great to hear from Jane and the boys again. How are you finding the new build?x
PPS Looking forward to seeing you next week Janet.x
PPPS Special mention to everyone at Ainsdale MC Martin x
PPPPS Do you recognise the scenery Lyndsay?

Day +42
Good morning to everyone from sunny, warm Manchester, and what a lovely morning it was too.
I got up onto the unit about 5.00am and found out straight away that Ella had slept well. There had been ‘episodes’ but she had gone straight back to sleep afterwards. Great stuff. This led to her asking for breakfast about 7.00am, so with that I went to make us tea and toast. When I got back Ella decided that she wanted to move onto the bed/settee, and hardly had we unplugged her bleepers, she was off…..with the walking frame! She really enjoyed her ‘taste’ of toast and we seemed to be all set for an early start to the day.
Before we knew it, the physios had arrived. I think they wanted to catch her at her best and it worked. She performed beautifully. Bending her legs, stretching arms etc and all without the aid of a safety net! BUT then came the most exciting part. She was invited to go for a little stroll onto the unit. Should she use the handbag frame or not? Ella had no hesitation in her choice…without. So off we went! Those little legs were like Bambi’s to begin with, but she soon got the hang of it and slowly we made it to the nurses’ station and back. Sadly all the girls were busy in the cubicles and missed our moment, but there’s always tomorrow.
We just got back and in the a member of the teaching team. They have had a lot of illness so I think supply staff are covering. Not much work done today, but at least it was a catch up time to see where Ella got up to with Janet.
We had a bit of a ‘cafuffle’ this morning because we didn’t have the rice milk to give Ella with her rice crispies. Eventually it was decided to send some over from Booth Hall. It arrived about 10.30am and Ella had a quick bowl to try it out.ummmm….maybe we’ll have to use the persuasion fairy on this one. I had a trip the Co-op to get some of the other items on her diet list, and a quick call to Simon meant that we had non- dairy margarine as well. (thanks Simon ). Ella had decided to try mashed potato and carrots from the hospital kitchen for lunch. Big mistake! I have to confess that some of the food is delicious, but this was horrible. So we quickly boiled our own, mashed them with the new marg. and bingo, she tried a little and enjoyed what she had.
Sally and I had a chat with the dietician later, whilst Ella was asleep, and we came up with a few ideas. The diet is very basic at the moment, but other non dairy, gluten free and more fibrous food could be added in later. SO that left us with the question of tea and what was Nanna going to make? How do you disguise mashed potato yet again? In a potato cake of course! It’s yummy with boiled rice and fish isn’t it? Ella enjoyed that too, bless her. She fell asleep in the middle of it, and even finished it off cold later.
Ella has had a quiet afternoon. She definitely ‘peaked’ early today. At the moment she is coming to the end of a blood transfusion ( it’s 9.30pm ) so we should see those roses back in her cheeks tomorrow, and a spring in her step again.
Dr Wynn came at lunch time and gave Ella a quick look over. He is pleased with her progress, but realises that we still have a long way to go. He is anxious that Ella needs to get off the lines as soon as possible, in order that she can go off the unit and get a bit of fresh air. We are working on it…….the morphine is down to 2.00 today. Once that line is down we will be more mobile.
We are stock piling crafts here….production is more or less at a standstill. I think these long nights are taking their toll. Maybe we should become nocturnal.
The weather here has been lovely today, warm and sunny. Lots of families were sat out by the bird house eating their picnics, ( it sounds like Botanic Park doesn’t it ? )can’t wait for us to be able to join them.
Anyway, we are tired tonight. I think an early night is in order. Ella is fast asleep right now and I don’t think we will be long in following her. Hope you like the photos of Ella’s trip out with the physios. Cool pj’s Sally Anne!
Night night to everyone, and thank you for all your good wishes and prayers.
Ella, Sally and Annette. xxx

Day +41
Good morning every one. Where shall I start today? It’s got to be with last night’s adventure, on getting back to the igloo at 2.00am. I crept in, so as not to wake the neighbours, only to hear running water coming from the kitchen. When I opened the door I was met by a wall of steam….the hot tap was jammed on and steam had filled the lounge and kitchen area, with condensation dripping from everywhere. Panic struck, I must confess, I had visions of the FB reappearing at 2.00am, if the sensors went off again. Anyway, I decided to ring the switchboard and after discussing the pros and cons with the operator, 5 mins later two burly (well one was) security men arrived and switched the water off……….completely!
Anyway, back to today. I was up on the unit at 6.30am and dived onto the new chair, and Ella and I watched some TV, and then she had an impromptu snooze. Time for us all to get some zzzzzz’s in. I sneaked a cuppa and some toast in for Sally and I, but of course the whiff reached Ella’s nose and she was asking for toast too. Back to the kitchen for her milk roll.( We need to freeze her bread and just take a slice out when needed). That went down very well. Time for another nap, in between tummy sessions, and then more lengthy discussions about Ella’s pain relief. The morphine has been further reduced, tonight it is running at 3.00, and the lollies are continuing, thank goodness. Sister Jo said that the aim is to cut down on as many lines as possible to give her a couple of hours of freedom. Do you remember that from a few weeks ago, before things went pear shaped?
The unit is running at full rate at the moment, so all the staff are working flat out. So are we come to that, I don’t think they could manage without parents.
Lunch time came and I tried again with a sandwich for Sally and I, while Ella snoozed. I’m sure that child’s senses are heightened! She knew instantly. She tried a tiny bit of cooked chicken and savoured every nibble. All this appetite talk has lead to the dietician giving us ‘safe’ foods for Ella to have, which won’t irritate her bowel more than necessary. Of course they are all Ella’s favourites……..plain boiled white rice, cooked potato, rice cakes,plain white bread, water and rice milk…..yummy. Not a Nik Nak in sight. So tonight saw us peeling a lone potato and mashing it, with no butter or milk, and trying to persuade Ella that she does like it really. How do you explain to a starving 7yr old that you are doing it because you love them? I must confess that there are other more interesting things on the list, carrots and parsnips, chicken and white fish, if she can tolerate them. It really is ‘slowly, slowly’ as her feeding lines are reduced and her bowel is allowed to work a little.
Dr Wynn came this afternoon and again said that Ella has improved in many ways. We still have a long way to go though. We already knew about the stem cells going in on Friday, and then next Tuesday she is going to Booth Hall Hospital for the day, to have her ‘scope explorations, by an expert gastrologist, to determine exactly where the problem lies.
The physios came as well this afternoon to try Ella walking a little. Unfortunately Ella was ‘indisposed’ the first time and asleep the second time. They did leave a walking frame however, and at bedtime she used it and managed four steps from the bed settee towards her own bed. A good start.
Who else came? Oh yes…the supply teacher…….to make ice lollies. Ella was only vaguely interested at the time, and was more interested in sucking her own pain lolly. I thought she had forgotten them, until at bedtime she asked for one….anything rather than the mash! Anyway, she didn’t like the first one, she didn’t like the second one, she didn’t like the ice pop that followed them…..in fact she was really fed up!!!!!!!!!!!!!!!!!!!! Until at last she fell asleep in a real grump. She’s peaceful at the moment, but I think I can hear mutterings about mashed potato coming from her direction.
We know that we have to work hard at the moment to keep Ella’s self esteem and motivation ‘up there’. She is such a good little girl and she has put up with so much.
Two highlights from today though. We have a new little person in here……Minnie Mouse…..a life sized balloon. Ella’s face lit up when she saw her. Thanks Ian. And the Disney shop donated lots of goodies to the children on the unit, so Ella has a lovely new pencil case full of all sorts, a High School Musical book plus microphone and a gorgeous beach towel! Fantastic….
We are going to finish now and say goodnight .We are just having a final cuppa before bedtime. Hope the igloo is still in one piece and hasn’t floated away on a cloud of steam!
Love to everyone and thanks for all your prayers and good wishes.
Ella, Sally and Annette.xxx

PS Thought you would enjoy these photos of Ella and Shelly. Once Shelly has tried Lizzie on we couldn't seperate them.

Day +39 and +40
Hi everyone. Well, those naughty girls didn’t keep up the blog last night did they? When I left for home yesterday, Rachael promised to write all the news, but when I texted later on in the evening she said they were too busy. My mind was working overtime …….what had gone wrong? I asked what they were doing….eating…... Oh well I suppose that does keep you busy, especially if it’s from one of Auntie Dianne’s food parcels.
Day 39 was a mixture of pleasure and pain. Ella had slow start to the day, with tummy ache being the main morning feature, although Dr Wynn was pleased with her again and said she could carry on with her little nibbles. She was very tired, but just couldn’t get off to sleep, to catch up. Then it was discovered that her line wasn’t bleeding back, so she had to have some special “stuff” in it to “unstuff” it. That made her medicines late etc etc. After much ‘Ellalollying’ we got to dinner time and she had a little snooze.
One of the play leaders, Anne, had promised to make biscuits in the afternoon, and eventually we managed to get Ella out of bed and across to the bed/settee so that she could join in. Anne is very organised and methodical, of the ‘old school’ I would say. Ella loved the ritual hand washing, crumbing the dough, dividing exactly into equal pieces…eventually producing eight cookies Mrs Maryland would be proud of!
I wasn’t here, but I know that later Ella had a little excursion ‘down the slope’ to the open door. “ I can smell grass”…….they had been cutting it outside the unit.
The day ended here with all the girls asleep early, and back in Southport with all the boys (and Sophie) asleep early too. I had gone down ( with Reg ) to give John a hand, sorting the boys out with tea and bedtime routine. They were sooooooo good and fast asleep by 7.30. John is a star!
Day 40 began for me down at Rachael’s at 6.30am, getting them all up again, ready for school, and after phoning Rachael later on I heard that Rachael had caught up with her sleep in the igloo and Ella and Mummy had had a reasonable night too.
Dr Wynn was again pleased with Ella, her blood results are very good. It’s just the tummy thing! The new stem cells are being repeated again on Friday. The pain team are cutting back very slowly on the morphine, from 5.00 to 4.8 today. If they go too quickly Ella will go ‘cold turkey’. The future plan is to keep up with the paracetemol regularly, give oral morphine if needed and to maybe increase the strength of the lollies.
Ella was on the bed/settee when I arrived back this afternoon and we had a new piece of furniture……..a reclining chair! After seven and a half weeks we have an arm chair for beside the bed. I can’t recline it of course……..there’s no room……..but at least we don’t have to droop over the bedside during the night now. It’s heaven.
Ella had visit from the physio this afternoon, too. We have been concerned about Ella’s mobility, or lack of it, over these last few weeks in bed. She isn’t standing or walking without support. So, tomorrow the physios are coming back with a frame, so that Ella will be able to stand with it’s support, and that will lead on to walking with it. More steps forward……….literally.
As I am writing the blog tonight, Sally is fast asleep and Ella is too. Ella is so tired, but she finds it very difficult to relax completely. Lizzie is in bed with her, definitely looking as if she has 'had a bad hair day' , but at least she is doing the trick and tickles ears perfectly. ( new bloggers need to look back a few days to find out who Lizzie is ). Hopefully she’ll get a good couple of hours now, whilst it’s quiet.
It’s great to read all your messages and to keep in touch. We read them to Ella and she likes to hear them. Hopefully she’ll be back in full swing soon, to write a bit herself. I think it’s a concentration problem at the moment.
Hope you're feeling better Janet, we miss you.xx
Hope all went well on Monday at St John’s, for your inspection. I’m sure it did! Special love to 6N/E and Mrs Newton, I think about you all lots and lots. Our new school sounds great!
I’m going to finish now and get this posted off. I’m sure there is lots I missed out, but I’ll catch up tomorrow.
Night night and lots of love, from
Ella, Sally and Annette. xxx

Day +38

Hi all, Rachael, Ella and Annette signing in!!
Starting with last night, Ella had quite a peaceful sleep with only a couple of bouts of tummy ache and 1 lollipop! Slightly more potty visits, but definitely much improved than last week!
I arrived onto the unit ready and set for the day, hair straightened, make up on, bag of beauty tricks in hand, only to find daddy and Ella fast asleep!
Clock watching for an hour and still no movement, I gave in and caught up with the blog (sorry Ell’s missed it for a few nights, oops!), still no movement, read a magazine, not a sound, had a cuppa, no twitching!. Found a very interesting article in ‘the mag’ though, from a couple who live in Central Ave, Southport! If only someone had been awake so I could show them!!!
Eventually, 9am, 2 and a half hours later, Ella rose, closely followed by daddy!
Great start to the day, Ella was chirpy, daddy was lively, beds changed, Ella on the couch, ready for another snooze!!
Must definitely be catching up on all those missed zzzz’s from previous nights.
Quite a lazy day all round really, but we did manage this morning to make Sally Ann and Nick a gorgeous present. (bet you cant guess what, or who, it is?? Hope you like them!)
Auntie Cheryl, Uncle Mark and Megan arrived lunch time, so I left the grown up’s and Ella to it and went for a walk with Megan. Not long into our stroll, Megan asked for daddy, so I began singing twinkle twinkle, only for her to reply ‘I don’t like that one’!!! (she’s only 18months, the same age as Sophie, who hasn’t muttered a word yet!!) back down the corridor, Megan greeted several people before racing towards the fish tank saying,’fishies’!!
Back on the unit she then identified balls, said ‘I cant do that’! and finished it off with counting to three!! Child genious in the making!!!
Ella had another snooze, just in time for Dr Wynn to arrive, he was generally ok with progress, and said that at some point this week, he would take Ella back to theatre and put a camera down, to see the extent of how far the gvhd has reached. After this, a decision can be made about when Ella can start to SLOWLY eat again.
Physio is next on the agenda, Ella has lost muscle tone understandably, and has got very definite nobbly knees and floppy feet!! So watch out Ella, whilst you were snoozing there was a mention of an exercise bike!!!
Daddy went home, Ella woke up, quick, out with the nail varnish and diamonds!!
Half way through French polishing, Ella was very hungry and upset, so Dr Wynn allowed her a ‘little of something’ after much choosing, nik naks were the winners! Each stick was lovingly sucked and savoured!
We were still titivating when nanna arrived back from her ‘night off’, jealous of course she had missed out at the beauty salon, AGAIN, next time I promise!!
Tea was already prepared tonight, another of Ella’s pizza’s, and special sauce! Yum, yum!!
Time for the ice dancing and our favourite Wild At Heart. Ella is snuggled down, I am writing this, and nanna is watching the telly, something’s not right here, shouldn’t it be the other way round? Think there'll be a race for the igloo tonight, infact, bye!!..................................................................................................................................................................................
Lots of love to everyone and our thanks as usual for your prayers and loving wishes.
Ella, Rachael and Annette. xxx

Day +37
Hi there on this sunny Saturday. Well, our day began at about 6.30 after quite a good night. Ella and Damian slept well, so they tell me.
We had a slow start though, with Ella reluctant to have her wash and ‘wot not’, but by about 11.30, with the help of an Ellalolly, we were ready. What did we do? We went for a walk around the unit……..to choose some DVD’s! How about that then? It was in fact the first of three processions during the day. Ella chose to go in her buggy, snuggled up in her blanket, Damian took charge of the bleepers and I had the honour of pushing. The visit to the DVD cupboard was cut short because of the call of nature, but our afternoon trips out were longer. We actually went off the unit and down the slope, to peep outside the door, with a quick whiff of fresh air. It must have done the trick because we then had to go up the slope, passed the unit to the other door! Great stuff.!
Ella has really been looking forward to making any food for anybody. She has asked and asked and asked. Soooooooooo today O took a trip to Morrisons, with Ella’s shopping list, and bought all the ingredients for pizzas. At last the time came to make them, we got everything ready and then as Ella was tearing the ham up she burst into floods of tears. She was just too overwhelmed! ( ham is one of her favourites) .Every tear was a token of love, if you know what I mean. She was determined to carry on, but I had to ‘take a breath of air’…it was heartbreaking. Anyway, Dr Wynn, who was here all day today, met me as he was leaving and I explained what was happening. He said, “Oh let her have just a little taste of ham…”. I raced back up to let her know, and wow the vision of ecstasy on her little face was a picture!
Dr Wynn was very pleased with Ella today. The treatment is continuing as planned and he is going to give time for the new stem cells do their job.
I think Daddy and I have managed to do a good job today. No crafts, only a little painting of my painting by numbers.
Auntie Rachael is here tonight, in fact she’ll be on her way now, so we are getting ready for that. I can feel a few beauty treatments going on tomorrow, can’t you?
I’m going to finish now and get this posted. Hope you enjoyed the photos yesterday, and here is another, after the ham had been tasted!
Night night to everyone, with lots of love from,
Ella,Annette and Damian.xxx

Day +36
Well, the ‘change over ‘ went quite well this morning. I was up here before the birds had woken up and Sally jumped into bed for an undisturbed sleep for a couple of hours. It didn’t make any difference to our disorganisation of course. It still took us nearly all morning to get us all washed and dressed!
Ella made an excellent start to the day. She was right on form, asking everyone about their favourite foods from about 8.00am onwards. Even Dr Wynn got a ‘grilling’ today. It must be the first time she has spoken to him in seven weeks. They chatted for about 10mins…….another lump in throat time for me. His verdict? He thinks things are satisfactory and one of his favourite foods is sausage and mash. Ella went from strength to strength after that, even sitting up for a while, and definitely perking up when Auntie Rachael and Sam arrived for the day.
A big thank you to Sam ( Graces’ Mum ) and Helen who came along from Ella’s school this morning to see her, and to share some lovely photos and a CD the class had recorded. Ella was delighted to see and hear her friends and the displays have got pride of place where Ella can see them all the time. Thank you all at OLOL.
While Sam and Helen were here the new stem cells arrived, so they were able to see them go in. The six of us, plus one nurse, a Dr and Trevor ( who was officiating ) sat watching. With the exception of Sam junior of course, who wanted to climb into bed with Ella. Shortly afterwards the’pain nurses’ arrived to check how Ella was doing and to introduce her to her new pain relief……..a lolly! It looks like a large cotton bud and tastes fruity. Ella had about 15mins to suck it and the results were almost instantaneous. Not only that she is the first child to have this in the hospital. Another first. They are going to call it an Ellalolly.
We had yet another procession this afternoon, as Ella went for an ultra sound scan on her tummy. This time her entourage included Sam, in his ‘stocking feet’, Mummy, a nurse, the bleepers and myself. Ella elected to go in her buggy and I think she quite enjoyed the trip out.
After Mummy, Rachael and Sam had left for home it was time fro a snooze before Daddy arrived. Ella was soooooooooo relaxed, she was asleep with her legs outstretched and even turned onto her side.
Because Ella is obviously hungry again and we don’t want to tantalise her, I made tea down in the igloo for Damian and I. Of course we have to go separately, on the pretext of getting the washing. When I got back from mine Ella was falling asleep with Lizzie, and was asking to be woken up for Corrie. Of course she didn’t make it, so we have promised to watch the omnibus, so that she can catch up on the wedding. Priorities eh?
At the moment I’m blogging, Damian is reading, Comic Relief is on and Ella is fast asleep.
It has been such a positive day today. We hardly dare do anything, but hold our breath and look forward to many more.
I’m going to finish now and attempt to include our contribution to Red Nose Day. There was a photo of Mummy to include, but she erased it quickly. Don’t worry……..I’ll catch her out sometime soon.
Nite nite to everyone, and a big thank you for all your lovely gifts, good wishes and prayers.
Ella, Annette and Damian.xxx
PS Sally Anne, these new pj’s are gorgeous. Ella loves them……pictures to follow soon.

Day +35
Good morning everyone. Where shall we start today…at the beginning or the end? I think we’ll start from now and work backwards.
It’s 8.00pm and ‘Enders’ has just finished. Ella is ready to settle down to sleep we hope, at the moment she is having a cuddle with Mummy.
Not long ago we said goodbye to Sam, who came with Daddy and Uncle Gav after school. He was laughing and playing on the Way with Mummy (of course he beat her) and made a fab castle from the Moon sand kit. We now have two new pets. SPIDERS. They are pink with googly eyes, hanging from the ceiling. Sally asked if Sam wanted to take one home? “They’re girls” was his only comment!
Ella has been asking everyone in sight about their favourite foods again, she did this a couple of weeks ago too. She has been talking about all her favourites too. It seems really cruel to join in, but she is more upset if you don’t. It was tea time for Sam and she said she really didn’t mind if Sam had his tea in the room. He wasn’t too keen on going down to the restaurant………gentle persuasion needed……..but he chose a famous NHS omelette and chips, with lashings of tomato sauce. We brought it back and he enjoyed it actually. A bit ‘wubbery’ but the taste was good!
Ella has been calm and peaceful all day really. Hardly any bouts of very bad tummy ache, which has made such a difference. I don’t know where the day has flown away to again.
Dr Wynn came this morning and said that he thinks her condition is quite stable. She is going to have the new cells again, tomorrow, and a CAT scan sometime soon. He had said the cells were going to be today, but when it got to 3.00pm and nothing had appeared we asked Niki. No, tomorrow, definitely! Men eh? Good job we trust him implicitly.
Sally and I have decided to try a new routine as regards looking after Ella during the night. One will stay awake…watching telly,computer,knitting,cross stitching…….whilst the other one sleeps. Ella in the meantime will be the model patient and not wake up at all. Then we’ll change over! It’s as simple as that! Sorted! Ummmm
Anyway, we are going to finish now and try to put the plan into action, by getting an early night. I’ll let you know how we get on tomorrow.
So night night to everyone, and lots of love and thanks as usual.
Ella,Sally and Annette xxx
PS We have just eaten our NHS omelette and baked potato and it was quite nice!

Day +34
A slow start, after a tiring night, would best sum up this morning. Although Ella is a little more settled, her waking at regular intervals….for sometimes up to an hour….obviously has a huge affect on her and whoever is with her over night. No wonder an exhausted Ella doesn’t feel up to much during the day.
Dr Wynn was satisfied with what he saw today……taking into account her blood results etc. However, she did need to have a blood transfusion today to give her a much needed boost. It’s 10.30pm and we are still waiting for it to go up. This is not a reflection on the staff, by the way, who have been rushed off their feet all day with a full unit. It just didn’t arrive all day, from wherever…Hopefully Ella will feel the benefits of this tomorrow.
We ‘grown ups’ enjoyed a day with Andrea, June, Auntie Margaret and Reg, who all tried in vain, mostly, to raise Ella’s spirits. It just seemed to be an ‘in bed’ day and that was that. She did raise a smile when she saw the Sylvanian family car arriving..........and we definitely smiled tonight when we were eating the chocolate,nutty,marshmallowy thingy! Thanks guys.x
Ella has struggled with tummy ache today and earlier this evening we took her along for an x-ray on her tummy. Of course it meant yet another procession along the already narrow corridor. This time Ella went on a bed, so it was rather crowded, with the bed, Mummy, the bleepers, nurse one, nurse two, the porter and myself.
Both the on duty Dr, and a surgeon, (who also examined Ella and looked at the result,) were happy that nothing had changed. She is going to have an ultra sound scan tomorrow to make sure all is well.
We have finished at least one activity today, which hasn't had anything to do with medicine, bleepers or lines. It is a decorated T Shirt, you know the ones which you decorate yourself. Sally began it this morning with a traced princess motif. Lovely! Then left me to finish it..... by writing Princess Ella Bella......freehand, without stencils or a safety net.......across the front of it. Thanks Sally!
I’m going to finish now. Ella is fast asleep and so is Sally, and the transfusion is up!
I feel as though I need one too, so I may very well have a chocolate shot whilst they’re zzzzzzzzzzzzzzzz ing.
Night night and lots of love,
Ella, Sally and Annette.xxx
PS Thankyou Grace for sending me all these great things to do.xx

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

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

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!

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

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..............

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

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.

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

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 magazine 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 ......................).