Day +84
Hi, and welcome back to us. I’m actually sat here at the beginning of day +85. It’s 4.30am and I’ve just taken over from Sally. We just ran out of steam last night to write the blog, so I’m on catch up.
Back to Thursday…..Ella had had a good night, so the usual pattern emerged…..more energy and enthusiasm. That is except for having a wash and brush up. We did agree on a mini wash, in honour of Janet’s arrival at 10.00am, in fact she arrived in the middle of it. Ella by now had her grumpy head on, but we persisted and she managed half an hour of ‘prefixes’, but the x tables were a non- starter!
All of the rest of the morning centred around planning menus, with Ella willing to try anything( except cakes ). We decided on wraps for lunch and lasagne for tea, so off I went to the Co-op to find everything.
Somehow we got through the rest of the day without too much falling out. Talk about too many cooks! Ella was very anxious that not only did she prepare everything, that she also fed us the results. It was all delicious…if not a little filling. Ella had already asked sister Trisha if she would like some lasagne, and that extended to almost all the nurses….including night staff….We had what seemed a lifetime to wait whilst it cooked, with Ella clock watching, until eventually she could stand it no longer. Sally had gone to check on it, and Ella was up off the bed ( lines and all ) and trotted off to the kitchen to see for herself. We were all amazed and delighted at her determination, talk about ‘Miss Bossy Boots’. I wander if she will manage to walk as far today!
We didn’t see Dr Wynn, although he was around. There were no major concerns…. Her lines still wouldn’t bleed back, so Sven had another go, under the watchful eye of Claire….men eh! ( They still didn’t work ).The IV team came in the end.
We already knew that Ella was going to have her ‘scope today ( Friday) so we have got another day of waiting. She is on the afternoon list, and hopefully they won’t leave her all day. At least we’re not going to Booth Hall again.
Well it is almost fully light now and I’ve just time to tell you about our latest project. Ella’s class at school are looking at the Egyptians right now, so of course we thought that Ella would like to join in with that, too. Hence, we have now got a super Egyptian goddess on our white board ( thanks to Mummy..excuse the pun). It was quite funny really! We needed some coloured white board markers, but we only had black and blue. However, when we had Ella out for a short walk yesterday Sally spotted some markers outside one of the clinics…..which she ‘borrowed’ (when clinic had finished) to colour our goddess in with…..and very lovely she is too! I’ll try to include her in a few photos later.
I’ll finish now and give Ella a tummy rub. She has had a lot of treatments through her lines overnight, some usual ones of course, but they have included longer ones which have needed ‘obs’ every 20mins. She’s got a blood transfusion going through now. Even though we have all got used to the beeping machines now, it does disturb Ella’s sleep when she has to have her BP taken all the time etc.
Sally has told Ella and I that she is definitely going to start the dance DVD today……..ummm……
Lots of love to everyone, and our usual thanks for all your support and prayers.
Ella, Sally and Annette.xxx
PS just a reminder of Simon's web page....

www.justgiving.com/simonblackburn2

Day +82 and +83
Welcome back to us…after our day off. I have been to the ‘car hospital’ to collect my little one and she is much better now. I just wish that I had private health care!!!!!!!
Ella had had a really splendid night with lots of sleep on Monday, and as a result had lots of energy to have a making session with Rachael and I. She even had a really good lesson with Janet….6x tabling. Dr Wynn had been and he was talking to Ella about his holiday, and telling Rachael and I that he is trying to bring Ella’s next ‘scope forwards, to the end of this week.
I had a chat with Simon, about the 10k run he’s doing for us, and he has set up a page on ‘Just Giving’. It’s very easy to find, so if you would like to sponsor him on behalf of the Bone Marrow unit I am sure we will reach his target….in fact I’m sure we’ll exceed it!!!!!!!!!!
When Ella’s lines came down we had the good news that she was allowed to go out for a drive in the car….if she felt up to it….and she did. Soooooooo when Mummy got back they had a quick trip out to the Co-op, to buy something for tea. ( I missed that part, but I know they had a great trip, with lots of smiles as the photos show.) and Rachael and I set off for home for the night.
We are now here on Wednesday evening. Corrie has just finished, Ella is very sleepy but not quite there yet, and Sally and I are looking back over an eventful day!
Ella’s night had been disturbed and she wasn’t too well this morning…. as a result Dr Wynn wanted her to have an ultra sound on her tummy and an Xray. When I arrived back at 11.00am things were much calmer and I had a lovely welcome, just sitting quietly with Ella whilst Mummy had her shower etc.
Things improved even more as the afternoon went on, and by the time the trolly arrived to take Ella down, we were discussing recipes and what she could make us for tea! We settled on stuffed peppers..stuffed with cous cous, mushrooms, courgettes and cheese. Of course another trip to the Co-op was needed, not by Ella this time though ( thanks Ian ) and then we set about chopping, de seeding, stuffing and all with a blunt knife!!!!
They were absolutely delicious….truly….and every mouthful was lovingly cut up and posted into our mouths by Ella. She enjoyed the whole thing as much as we did, although of course she couldn't even taste any of it. ( I know there are plans to make them again.)
The ultra sound and the Xray both showed no change, by the way, good news!!! What a day of extremes, but Ella is completely rested now and sleeping soundly.
Now, on to Simon’s web page…here is the address….
www.justgiving.com/simonblackburn2

All you have to do is find the page and leave your pledge….easy peasy…says she who can’t even leave a comment on her own blog sight. Anyway, I know you will give us lots of support and spur Simon on. After all, he is running on Sally’s legs. We may even get him in Sally’s tights yet!!!!!!!!

Well, we are going to finish now and enjoy a nice cuppa and an hour of telly!
Lots of love and all our thanks for your continued support and prayers.
Ella,Sally and Annette.xxx

PS Any baby news Atsoi?

Day +81
Well, he’s back….Dr Wynn that is…who can believe that it’s three weeks since he left to go on holiday. Anyway, the good news is that he can see progress in Ella, having looked at her results whilst he was away. Ella was full of questions for him before he arrived this morning, but, by the time all the grown ups had discussed her, there just wasn’t time to ask them. (Ella took to throwing Tiger around the bed instead.) Of course she was asleep when he came back this afternoon, so I told him she was dying to ask about his holiday. He is going to bring in some pictures etc to show her tomorrow…..
There is still a lot of discussion about Ella’s pain relief. It’s not quite right yet, and Dr Wynn wants it to be the priority at this time. If we get that right then Ella can enjoy happy, busy mornings again, instead of sleepy ones. We feel as though we are loosing half a day on catching up zzzzzzzzzzzzzzz’s.
This morning we had a busy time though, with lots of visitors. Firstly one of the teaching team came to arrange a time to come back to bake. Then Janet came with some work on the 6x table….we were only faintly amused! Then Ella’s nurses appeared to try her lines again. They still wouldn’t bleed back, so on went the ‘magic cream’, ready for the IV team to take bloods from her hand. ( and what a lot they took! )
Just time for a quick nap, then baking lady, Ann, appeared with all the stuff to make ….bakewell tarts. There was a bit of a clash with the IV team, but everything got done in the end…lots of blood in bottles and twelve tarts on a plate!! Very soon there were only ten tarts, and I guess there will only a couple of tarts if they are left out much longer. (Don’t worry Sally, we have put some away for you)
Ella had a couple of hours off her lines today, but we decided to stay in….the weather was a bit grim and Ella was comfortable in bed. Instead we watched the Princess Diaries….not to be missed may I add.
Tonight? Well, Rachael and Ella are inventing perfumes! They smell fab, so far, although I think there are plans to make the boys an aftershave…..but where we’ll get some slugs and snails at this time of night, I just don’t know.
It’s a lovely evening here, plenty of sunshine. Corrie is just finishing, and I’m going to finish of this episode of our blog and help the girls.
Lots of love to everyone, and our usual thanks for all your support and prayers.
Ella, Rachael and Annette.xxx

Day +80
Here we are again…happy as can be…Auntie Rachael has arrived to keep us company tonight, which is very nice. We had just waved Daddy off and I thought we had time for a few quiet moments, when suddenly a smiling face appeared at the window, and there she was!!! Rachael says she ‘ has come for a rest’, but Ella and I have got other plans.
Ella, Daddy and I have had a really quiet day today. Ella decided that a snoozy day was in order….and she slept until about 3.30pm. Of course the plans for the perfume factory had to be abandoned, I could see Damian breathing a sigh of relief, but he didn’t get out of repairing the balsa wood owl!! As for me? I started a new painting.
We had a real surprise when the Dr came along today. He was pleased with Ella and asked the nurses when she was due off her lines? He said a ride in the car wouldn’t be out of the question, and where did we live? Well, Damian and I nearly fell over….and Ella looked a trifle worried too. We had visions of us racing down the A580, knocking on the front door, saying hello and then racing back again! Ella didn’t say anything whilst he was in the room, but when he’d gone she whispered to Daddy that she ‘didn’t really feel like going out in the car today.’ I’m not sure who was the most relieved. I think we need to build a lot more confidence before we are that adventurous. As you can see from the photos we had a much calmer ‘stroll’ around the grounds, with Ella sporting her nice warm poncho/blanket. We took some of Daddy’s nuts feed the birds with…which they completely ignored. We were thinking that they are probably like the ‘panda advert’. The one where they dash outside when the photographer has gone! Anyway, the most exciting part of that visit was when we spotted an egg in the aviary, so there must be chicks in there somewhere?
Well, it’s now just turned 8.00pm, Ella is doing her favourite pastime and Rachael is painting. I think we are all waiting for Hell’s Kitchen and then we know that bedtime is well and truly approaching. I not sure if Ella will have any zzzzzzzzzz’s left for tonight. Maybe she’s becoming a pussycat…..they can sleep for up to 18hrs a day can’t they?
Soooo, night night from we three and thank you for all your support and prayers. We know you are out there somewhere?
Lots of love, Ella Rachael and Annette.xxx
P.S. Dr Wynn is back tomorrow…..stand by your beds….

Day +79
It’s another ‘hi’ from Manchester. The sun was lovely at dawn, then it rained, then the sun shone again, then it became really quite warm and finally it is going dark. Mind you it’s almost 8.30pm and we are watching Britain’s Got Talent……
Ella has had a quiet, but interesting day today. This morning we had our usual slow start….with cups of tea and toast for Sally and I whilst Ella woke up properly. She had a little bit of help with her pain relief, and by dinner time we were wide awake. Today’s Dr has changed her medicines slightly, so we will see if her night is more settled.
Sally and I had the usual ‘shower challenge’. Can we get a shower without being scalded or frozen or both? The answer is still ….no. In fact, today, Sally had to go onto another ward to use their shower.
Just after lunch Daddy arrived to take over from Sally, just in time to get Ella washed and changed, helped of course by his two glamorous assistants. Shortly after that Ella’s lines came down and we were able to move around. Another little girl on the unit had a birthday today, and Ella wanted to make her a present. What was it going to be? A peg doll dressed in the outfit that Amy was wearing today, and Nanna was going to make it!! Ummm. We compromised on making a card and we found another little gift we could take her. Ella then had special permission to take it along to Amy’s cubicle. Lovely.
By now the weather had become quite warm and we really enjoyed our walk out in the grounds and we even popped to the very nearby shop, to buy some chocolates for the nurses.
By the time we got back Auntie Cheryl, Uncle Mark, Josh and Megan had arrived. Ella enjoyed them coming, although the children can’t come into the cubicle, so they all waved at each other through the window.
That brings us more or less to now. Nurse Kirsty has just been in to take bloods from Ella’s lines and they are not bleeding back again!!! Keep everything crossed that they behave themselves!!!!!!!
I think another early night is coming up and then we will all have lots of energy tomorrow, to do all the things we have got planned for Daddy…..beginning with the PERFUME FACTORY!!!!!!!!
Night night, lots of love to everyone and as usual our thanks for all your support and prayers.
Ella, Damian and Annette.xxx

Day +78
Good morning and welcome back to Manchester. The weather has taken a slight turn for the worse…it’s cloudier, but actually not too cold.
Well, we had a ‘busy’ night here…no tummy aches though, so that was a really good thing for Ella. This morning was a little different. We had a slow start and by the time Star Man, Rachael, Sam and Sophie arrived we were still not organised. Still, you need one of those days every so often, don’t you? In fact at one point Sally was ‘trapped’ in the shower, because we had a visit from the Drs whilst she was in there…..she hadn’t got her clothes in there though, so she had to just listen through the wall!
Rasheed and Sven decided to send in the pain team again, and the result of that visit was that the smaller, faster acting morphine will now be given at regular intervals, rather than as and when Ella has breakthrough pain. The twelve hourly, slow release morphine will continue as already planned. There hasn’t been any time off line today for Ella, so we have spent a quiet day in here instead.
Did I say quiet? Is anywhere quiet when Sophie is around? She was like a whirling dervish, but a little love none the less. Ella really enjoyed feeding her and Sophie enjoyed it too. Sam was busy painting a motor bike model Sally had bought him, then he settled to playing with the Sylvanians. Sophie? Well she dashed from person to person to be tickled, hid her dummy, played tea parties, climbed on everything and generally had a very nice time….thank you very much!
Oh, before I forget, hello to Harry’s Mum. We met as I was taking washing onto Harry’s ward and I know she follows the blog. Hope all went well today. Sally didn’t get chance to meet up, but she’ll text you.x
We had an unexpected, but great visit from Janet this morning. Ella escaped anything too taxing, but enjoyed a story instead. It was quite funny really…at one point our cleaning lady for today was making so much noise, swashing the mop around, she was in direct competition to Janet! It was like old times and we are looking forward to next week. We are thinking about you Janet, over the weekend. Hope all is well.
Ella was making us laugh this morning by putting Lizzie on back to front and jigging around on the bed. Then we decided that Lizzie needed a shampoo and set today, so into the blue bath she jumped and ten minutes later she was draping herself over the shower rose again. Tonight, as Sally was sorting out the tea, Ella asked me if Lizzie would be dry….and she was. We brushed her and made her respectable again and I tentatively asked if Ella would like to try her on? To my delight the answer was yes, so we had a lovely surprise for Mummy when she got back. Hope you like the photos. ( Lizzie was’ made up’ by the way. She now knows why she is here. )
Well, it’s 9.00pm and Ella and Lizzie are asleep. They are surrounded by all the pillows and I’m not quite sure how they are going to be extricated later on. Mind you, there are a few more medicines to take yet, so I’m sure we can sneak them then!
We are going to finish now, I can feel a cuppa coming on. Sally disappeared to make it about 10mins ago, and hasn’t reappeared yet. Mind you, there is a lot of ‘chatter’ on the unit today, so I guess she has got caught up in that.
So, night night everyone, and thank you once again for all your prayers and good wishes.
Ella, Sally and Annette.xxx
P.S. I forgot to tell you that yesterday, when Ella was out in her buggy, Sally had her in fits of giggles as she was ‘letting her go’ down the slope. A bit like the whacky races I think. They both said it was a good job Nanna wasn’t there….she would have fainted over!

Day +76 and +77
Once again we have two days to catch up on, sorry, I’ll try not to make it too long, but I will add in some photos!
We had another great day yesterday, Wednesday. A rather rocky start, after a good night, but things settled down as they do, round about midday, when Ella has had a snooze. Sally and I both had lovely warm showers down in the cave, although Sally had to wait because there was a ‘bit of a queue on’, as the news spread that there was hot water down below!
Andrea and June texted early to say that they were on their way, via Next….to have a look for some comfy outfits for Ella. When they arrived Ella was washed and ready to ‘try on’…and the fashion gurus didn’t disappoint us. All the clothes were gorgeous, but unbelievably some didn’t fit….Ella has grown….taller and bodily too! However, we settled on keeping some, and, after all that, chose pj’s to wear for the afternoon and trip out. The room was full of clothes….just like a typical girlie trying on session. We had just finished when in walked the new consultant to give us the positive news that the virus levels have dropped, which could mean that the new treatment is kicking in.
Ella enjoyed a reflexology treatment and massage from ‘the girls’ and then we had a walk out to wave them off.We rounded the afternoon off with a TV hour in the cave and a cuddle with Mummy.
Whilst Sally went for some tea, Ella and I got her settled back into bed, before her lines went back up, and the blood transfusion could be started off. Oh I almost forgot to tell that Ella had a visit from the clowns this afternoon, and later on from the Radio Lollipop team. We handed over a huge bundle of finished stuff and Ella instantly won…I think the sheer volume won them over.
Mummy was holding the fort last night, as I was bringing my car back home for a service and it needed to be there early Thursday am. When I phoned them both later on all was well, in fact I woke Sally up to speak to her.
Today started well for everyone, me in Southport and Ella and Mummy here in Manchester. I know that their day has been peaceful…lots of snoozing and resting….on both sides. Mine? Well, my beloved car is in ‘hospital’ too….waiting for 2 transplants on Monday. A new clutch and 2 new ‘thingies’ at the front somewhere. I’m back in Manchester now ( thanks Reg ) so any shopping trips to the Co- op will have to be on foot. Still, that won’t be too bad. It’s quite a while since I walked that way.The last trip was to stock up on tasty bits and pieces, and some meals to keep in the fridge. We seem to be slipping back into ‘canteen’ meals again. Very naughty.
It seems as though we are heading for an early night here. Sally has ‘crashed’ on the bed/settee and it’s my turn to keep watch. Ella isn’t quite asleep yet but hopefully she’ll settle soon.
There was nearly another FB moment earlier, as my cheese toasty welded itself to the toaster. I did get the kitchen door shut quickly though, but not before sister Andrea ( she’s back from her Australian holiday) caught me. She was laughing though………I’m sure she was.
We are closing now. Hope you like the photos. There are some more of the clowns, but he was soooooo tall he is headless in a few of them. Now that’s a clever stunt isn’t it?
Lots of love to everyone and all our thanks for your good wishes and loving prayers.
Ella, Sally and Annette.xxx
PS Ian has got a new name….’the Star Man’……
PPS Ian’s mum( Pat) has got a new name….’Twinkle’…..thanks to both of you.xx
PPS We are having a bit of bother finding the correct title for the sponsor sheet for Simon ‘Sally Legs’ Blackburn….who is running the 10k in May. We will get it out ASAP. Can we rely on you all to support him? xx

Day +75
Welcome back today, if you are still keeping up with us….hope you are! We have had a great day here to share with you.
All started well here, some tummy ache, which we soon sorted out and by the time the Sven came to see Ella things were much better. Ella had a settled night with plenty of sleep, after a rocky start!
Rachael jumped into the shower early….and would have jumped out again if she could have done. The water was freezing! We have been having huge problems with the hot water since last week, actually, and it still isn’t fixed yet.( We’ve got up to 2 men in the shower now ) We have to use the kitchen water for Ella’s wash. I went to the cave for my shower, which was lovely and warm, but…..I couldn’t switch it off. Now apparently, that one is out of action too. Men!!!!!!!!
Ella has looked as pretty as a picture today. She decided to wear her new dress and head band again, which worked really well because she was due to come off her lines nice and early. In fact it was just after midday, and just in time for Mummy arriving back with cousin Jack. He has had a special day off school, to come along and play with Ella. After so long in hospital it’s very important that she doesn’t forget how to interact, communicate and just enjoy playing with other children. Sooooooo, we thought a Sylvanian day would fit the bill very nicely. The weather was lovely, so on went the suntan lotion ( Ella’s skin needs real protection at the moment ), they filled a bag with favourite Sylvanians and off we went to find a sunny, sheltered spot.Ummmm! By now the sun was hiding and we three grown ups were frozen in our summer things. Extra blankets were needed….and we sat like ‘grannies’ ( well I did anyway ). We were out for about an hour, until we came back inside for a warm in the cave. Then guess who arrived? Yes, the FB. Not 1 machine, but 2 this time. Of course we all dashed outside to see what was going on….a false alarm….but still, what an exciting end to the trip out! Sally took the photo by the way, and managed to miss out any FB personel.!!!!
Rachael and Jack left shortly afterwards and we three came back up for a snooze. Actually, Ella went back on her lines because she needed an albumin transfusion and her ‘globbies’, both of which take 4 hrs to go through.
That more or less brings us to now. It’s 7.30pm and the sun is really shining through the windows. Ella is still up and colouring pictures to enter for the Radio Lollipop competition. We have not joined in for a while, so the heat is on to win again! It is such a delight to see her engaged and concentrating.
I guess we will be getting ready for bed soon and Ella can have another little trot across the room. Those ‘bambi’ legs have been working well today, and as you can see from the photo, she made it onto the picnic rug to play…all by herself. We all had a good time out there, although I’m not sure from the photos that the girls were expecting me to snap them….what do you think?
Well we’ll finish now and say goodnight. Lots of love to everyone…and keep in touch? Thankyou for all your support and prayers as usual.
Night night, Ella, Sally and Annette.xxx
PS Hi Janet, so glad you are back…but sorry you can’t come in at the moment.

Day +72,73 and 74
Well, I have got a lot of catching up to do, to keep you all up to date. I’ve had a couple of days at home, but I know that the news has all been positive over the weekend.
On Saturday morning Ella was feeling well but sleepy, even though we had had a very good night with plenty of sleep. So that’s what we did….snooze. I knew that Sally Ann and Nick were coming to visit and that Daddy was expected during the afternoon, so whilst Ella rested I did the housework. They all arrived together, and it didn’t take long for Sally Ann to be ‘hands on’…..the massage cream was on and Ella’s toes had been partly painted. Sally Ann has been busy again, sewing a lovely dress ( with matching shorts and head band ) in the most beautiful material……check out the photo!!!! (I’m not quite sure that the slippers ‘go’, but Rachael was just about to take Ella out for a walk, yesterday.)
When I spoke to Damian on Sunday morning first thing , he said that Ella had had another good night, and that she was bright and happy. In fact I spoke to her and she was!!!!!!!!!!!!
Yesterday, Sunday, there was another change of face with Auntie Rachael coming along to take over from Daddy and to stay for a couple of nights. She came along in my car and left me the ‘bus’, in case we had time to take the rascals out somewhere. We didn’t, but we did sit out in the garden at Rachael’s and the children played all day. I must say that I have enjoyed my days at home. It has been great to see the rest of the gang and to play out in the garden with them. It’s been heart wrenching too….there is a great big space where a certain little person should be…….
I’ve heard that we weren’t the only ones outside yesterday. Ella had a trip out with Daddy and Auntie Rachael yesterday, to a grassy spot in the grounds. They took Ella’s ipod to listen to a few tracks etc and then when they got back in Ella sorted out ‘The Nail Box’ for Rachael. (about time too). Of course that was followed by a full manicure and pedicure…….gorgeous nails for the second time this weekend!
When we rang this morning Ella answered the phone, which was lovely, and then Rachael gave us the excellent news that they had both had another good night. The Drs today have been positive about Ella’s weekend and her treatment for the next few days will be based on that. We had a visit this afternoon from the immunology team, Dr Arkwright and the new Dr, I mentioned a couple of weeks ago, who has just started here. We had quite a long chat with them and they filled in a few gaps in our knowledge about Ella’s condition.
Grandma and Grandad came this afternoon too. Ella was pleased to see them, but she was sleepy and more content to listen rather than join in. Another lovely visit was from Lindsay, Simon and the children. You may remember that they have gone through all this themselves, and from our point of view it is very comforting to see two children who have been transplanted and show us a real light at the end of the tunnel. They had been into clinic to see Dr Arkwright themselves and called up onto the unit to see Ella. Unfortunately they can’t come into the cubicle so they didn’t actually see her today, because she was just out of sight on the bed/settee and didn’t feel up to moving around. Still we all had a good chat outside the room and the staff were delighted to see two of their old charges!
Anyway, I’m going to finish now and get this posted. Ella and Rachael are reclining on the bed and I’m blogging. It doesn’t take long to get back into harness does it?

Lots and lots of love and kisses to Mummy, Sam, Jack, Max, Sophie and Uncle Johnny who are holding the fort tonight.
Hope you enjoy the photos and as usual we send you lots of love and thanks for all your prayers and good wishes.
Night night, Ella, Rachael and Annette.xxx

PS love to Reg and Daisy who are enjoying each other's company again tonight.

Day +70 and +71
Hello and welcome back to sunny, but freezing cold, Manchester. Well actually, the afternoons have been quite warm and Ella has been able to go out for short walks. Yesterday she went as far as the igloo to get the washing, and today we went down to see the birds and then back to cave to watch some TV down there!
The last couple of days have been quite settled, and the nights too. In fact last night was the best night so far. Sally was here on her own….I’d been whisked away to be wined and dined by Reg, for my birthday….which was very nice. I had a lovely treat on hearing that news, when I phoned up first thing today.
The consultant had a meeting with Sally today, to discuss Ella’s further treatment. It has been decided that the anti virus treatment, she has been receiving 3 times weekly, will be replaced with 1 more intensive treatment, weekly. They will continue to review its’ affects, and it is possible that the stem cell treatment may be repeated next week. Another decision is that Ella is back in isolation with regard to movement on the unit…she can leave her room, but only to go along the corridor and straight off the unit. This is a bit of a blow really, because there is another little girl up here, Eve, who got together with Ella when they were both on the oncology ward together. Ella had a little walk to her cubicle the other day, to wave through the window….so now, sadly, that won’t be possible for a while.
We spent a couple of happy hours today ‘making and doing’. Ella moved over to the bed/settee and we decorated a jewellery box ( with Sophie in mind) with every type of lace, ribbon, glitter, rosebud, sticker and jewel that you could imagine. It was then placed carefully on the window sill, next to ‘the bakery’ to dry. I must confess that I didn’t think it would, but the finished product is lovely. How long all the bits and pieces will stay on, when Sophie gets to grips with it, remains to be seen.
When Ella came off her lines today we didn’t go out straight away….we usually need a few minutes to build ourselves up to it. So it was a great chance for Sally and Ella to have a snuggle. Hope you agree that the photo shows two very happy smiles.
It’s now 10.30pm and Sally and I are just chatting and having a cuppa. In fact I may just make another one! Ella is fast asleep, legs down, and totally relaxed at the moment, so we are going to take advantage of it.
I’m going to finish now and say goodnight from all three of us. Damian is in charge tomorrow so I guess he won’t be blogging. I keep trying to persuade the others to take over, but they are ‘chikening’ out of it. Maybe on Sunday, when Rachael is here, she’ll have a go instead.
So it’s night night yet again, with lots of love and best wishes to everyone, and many thanks for all your prayers and well wishes.
Ella, Sally and Annette.xxx
PS How are you Janet? Hope you are better now! Are you coming back to us? Xx
PPS Boys will be boys eh Jane?
PPPS Hi Simon. Thanks for your text. Sally is trying to find out the correct title for you…it’s like swimming in treacle here. We are on the job though, let you know ASAP.xx

Day +69

Day +69
Good morning all. I’m writing this backwards again. Not literally, but it is 5.00am on Thursday rather than late Weds. It’s not properly light yet, so I can’t give you a weather report but I can say that it’s chilly here in Ella’s room. She, of course, is lay without covers etc in a glowing ball, and I’m wrapped up in a snuggly! Mind you I am sporting my new birthday pj’s ( yesterday) which are summer weight…..not the ‘flannel’ ones I’ve been used to up to now. Sally, meanwhile, is in the cave (I hope). We changed over about 4.00am.
Back to yesterday, though! Ella had a slightly better night, although she carried on and had a whole morning of sleep, too. She had some catching up to do. She had spiked a raging temperature earlier in the evening, and Rasheed came along to check her over. The antibiotics did the trick and by morning the temp was down. When he came back in the morning, with Sven, they decided on an ultra sound and tummy x ray.
We began the day by opening my birthday pressies and cards……..great stuff and then, as I’ve said, back to sleep for Ella. Sally, Rachael and I then spent all morning on the ‘phone, talking about how we were going to organise the day….was I going home?….was Rachael coming here?….was Sally going home?...were we going out for tea? By the time Ella woke up we had it worked out…Rachael would come here, with the four rascals, then we would go out for tea. It took 4hrs to sort that out!!!
Ella woke up feeling wonderful! After a good wash she wore full pj’s, first time in a long time, and a hair band. We wanted her try a walk again….on those Bambi legs….so off we set, to reach the treatment room, where nurse Rachel was waiting for us. (that’s her in the photo), then we walked all the way back. We topped that by sitting out on the settee, to wait for the gang to arrive.
Ella had the very sensible idea of hiding the Sylvanian town ( we have grown from village status) before they arrived. Good idea, but where do you hide all that? In the shower of course. The bakery and the caravan just fitted snuggly into the ‘in cupboard’ and we were sorted!!
We had a lovely visit! Ella was much more able to ‘join in’ and enjoy watching them all play. Auntie Rachael had brought cake making stuff, to make me a birthday cake, so there was much mixing etc, and much struggling to keep Sophie out of the mixture. We had the call to go for her ultra sound about 4.00pm….another procession….with Ella in buggy, led by the hand by Sophie…..lovely.
The gang left shortly afterwards and went for tea, and when Daddy came along to see Ella, I joined them. Mind you, when he arrived Ella was really busy decorating the cake, so he soon got roped into that. ( it is gorgeous, by the way)
Well, I’m going to finish now, it’s coming light and I’ve yet to download the photos to show you.
Have a great day all of you. We are looking forward to another like yesterday. Ella has been looking forward to trying on her new dresses…they are gorgeous too. ( thanks Ian ).
Lots of love to everyone and our thanks for all your prayers and good wishes.
Ella, Sally and Annette.xxx

Day +68
Good morning and welcome to Manchester. It’s not been too sunny today, but at least it has stayed fine and guess what? Ella has been outside! More on that, later.
We all had a better night last night, with definitely fewer episodes…….so it was a much more positive start to the day. When the Dr came he did say that Ella needed a transfusion again today, not to mention her ‘globbies’ , so we knew we were in for a long day.
We got off to a good start with all of us washed and dressed by 10.00am.( Ella in full pj’s ) Then she had a little walk over to the bed/settee and enjoyed being there for a good few hours. Sally and I had already decided that the Easter display needed to be changed today, so whilst Ella directed operations we got started. It was very careful work, trying not to take chunks off the wall paints, but I managed it mostly….just a few came off with the blutac. Sally ‘kept nicks’ while I touched it up with poster paints!! Then we carried the Sylvanians over to fill the space. We have decided to make a ‘village’ background next……
We put in our request for time off early, so by 2.30pm we were free for an hour. Where should we go? Trafford Centre? Lowrey Centre or a walk outside then back up the corridor? After long deliberation, we decided to do the latter….we’re all saving up. First of all we went to the cave, for Mummy to find an outfit for tomorrow, and we discovered a favourite ‘tracky’ top of Ella’s. Smiles all round as she put it on….and then when we went outside she tried out her new blanket. Well, it’s actually like a ‘poncho’ blanket, with armholes, that you wear back to front, so that it keeps you warm when sat down. ( if you can work it out from that description you are doing very well). Anyway, it did the trick. We had a stroll along the corridor and finally we all measured our height. We were right, Ella has grown, but only a few centimetres. I must say, she looks much taller.
We’d not been back long, in fact nurse Rachel was waiting for us, when Ella began her transfusion and we all continued with a quiet afternoon.
The nurses have all been in a giggly mood today…I think ‘Ally’ has been winding them up ……so they have been popping in and out trying to make Ella laugh. At one point ‘Ally’ was playing with the Sylvanians….I think she’s addicted too.
Well, I think it is time to wind things down for the night. Everyone is yawning. Ella has just given me a huge smile from bed….I thought she was fast asleep….little minx.
Night night and lots of love to everyone. Thankyou for all your prayers and well wishes and we’ll ‘see’ you tomorrow.
Ella, Sally and Annette.xxx
PS Hope you feel better soon Mrs Robinson. We are looking forward to the message.
PPS Enjoy your carting boys.Get your Mum in there too!!! Never mind taking photos!!!!

Day +67
Good morning to Manchester….hope you all had a super Easter, with not too many calories ‘down the hatch’ if you know what I mean.
We’ve had a very lazy day….after a very hectic night. Ella was up and down all night and the result has been a sleepy day. When the Dr came he was happy to keep the medicines the same and to continue with the treatments. All her blood results are good.
I have found a secret place to do the washing…..another ward! I’m happier to take it there, because there is no contact with other patients and you don’t have to carry it through the ward. So that has been my main job for today, ferrying laundry to and from! Then after tea I ironed it….so there.
We all enjoyed a visit from Reg today. When he arrived Ella and Sally were fast asleep, making up for lost time, so we nipped off to the restaurant for a bite to eat. When we got back they were still asleep….in fact we had got half way through ‘Close Encounters’ before there was a murmur.
Ella hasn’t been in the mood to join in today, so we all watched Mummy making the bases for 3 snow globes! So far so good. Water and glitter snow tomorrow!
Later, after Reg had left, Ella and I had exciting moment. I won’t go into too many details but it ended with me giving Lizzie a shampoo and set, after she had jumped into …..what shall I say?…..a bodily fluid. It brought the biggest smile of the day from Ella. Lizzie is now draping herself over the shower rose.
The hospital has been generally very quiet, over the holiday. There has been lots of parking space, which is a clear sign that people have been enjoying the lovely weather. We hoped Ella would have had some time off today, but she has had her long treatment today and it has over run. We’ll try again tomorrow!!!.
We are watching ‘Enders at the moment and Ella has had her last medicines for tonight. She is looking decidedly grumpy, and I think I would be too, if I were her.
We are all hoping for a better night, particularly Ella and Sally, so I think we will be having an early start to it. Lights out after Corrie Part 2.
Night night and lots of love to everyone. We send our usual thanks for your support and prayers.
Ella, Sally and Annette.xxx

Day +65 and +66
Happy Easter everyone. It is a sunny, Sunday evening here in Manchester. We hope you all had a lovely Easter Day, with lots of everything you wished for.
I’ll start with yesterday I think….Saturday. Damian and I got off to a good start, Ella had had a fairly peaceful night, so we were all on the go quite early. Having said that, when Sven came to see Ella there was neither a child (nor a Nanna ) washed, and Daddy had a mouth full of toothpaste. Still, never mind, we all understood each other perfectly. The treatment would be the same, except for a blood transfusion later in the day.
When we had got Ella organised she and I had a cuddle on the big chair. It was great….for me at least…….. to have her sat on my knee again. (Jumping on my knee is usually the first thing she does when she sees me at home.) We just had to be careful of her sore side, where the new line is fitted.
Then it was back into bed for a morning of colouring in , DVD’S and snoozing. Honestly, before we knew where we were, it was gone midday. We had some time decorating Easter biscuits. Ella had already planned the lucky recipients out…..Jack, Max and Sam, then the final two for 2 little boys on the unit!
We asked nurse Rachel if there would be any time off line, but it was a very tight schedule because of the transfusion. I was on pins all day, because it was so warm and sunny, I really wanted Ella to have a little trip out. I think she became quite despondent, because when the big moment arrived it was gone 5.00pm and she had lost all interest. It took a lot of persuasion, but in the end she agreed to come and wave me off, as I set off home for the night.
Today when I rang early, guess who answered? Such a cheery little voice, telling me that she and Daddy were already watching TV and had done some colouring! Sven had been ( another early bird) and was pleased with Ella on the whole, although her Temperature had been fluctuating slightly. Ella has regular paracetamol through her line, and he was concerned that it is ‘masking’ something.
When I arrived back later this afternoon, I had Sam in tow. He told me, as we set off in the car, “I’m not going to go to sleep Nanna,”….”Ok Sammy, you alright in the back there?”……”zzzzzzzzzzzzzzzzz”.
Ella and Sam had a few minutes together. It’s good for them to have big sister and little brother times. It puts Ella back in the driving seat, if you know what I mean?
After Daddy and Sam had left for home Ella and I had a quiet time and then Mummy got back……armed with pressies. Big smiles all around. This time the Sylvanian caravan, complete with every item any respectable rabbit needs to go camping with!!!!!!!!
At the moment the fairies are twinkling and Ella is beginning to fall asleep properly. She is relaxing and her legs are straightening out….always a good sign that the pain relief is correct. Sally has been back to her painting and I’m blogging. I spent the first twenty minutes trying to sort out the desk top on the computer. The icons on the tool bar have all shot off to the left hand side, and I don’t know how to correct them. Very frustrating. Maybe if Simon comes later in the week he will have the magic touch?
We will say goodnight now, have a last cuppa and then an early night I think? We are trying hard not to give in and open the Easter chocolates Ella bought us. I could hear lots of rustling yesterday and see Daddy sneaking something under the covers. Thanks Damian…..they are super!!!!!!!!
So night night to everyone. We send our love and thanks, as usual, for all your support and loving prayers.
Ella, Sally and Annette.xxx
PS Reg and I enjoyed a lovely family service today at A.M. and I was able to catch up a little on news, it was great. Love to everyone there.
PPS Thanks to Auntie Kerry and Uncle Martin…….Ella is delighted with all her pressies. We can’t wait to get into the Shrek book.

Day +64
Welcome to Manchester today. At the moment we are watching Corrie and it looks outside as if the weather is closing in on us. Definitely not the sunny evening of yesterday, but we have got a warm atmosphere up here, in Ella’s room, to make up for it.
Back to this morning though.
Ella had another good night to report to you. When I came up at 5.30 both Ella and Damian were fast asleep and before we knew where we were…. it was 8.00am!
We did have quite a lazy start, with cups of tea and some TV. The best part of the early morning for Ella was setting up the new part of the Sylvanian Village. Daddy has bought her the Bakery, which must have at least 100 bits included in it. Every type of bread and cake etc not to mention packets and kitchen equipment.
Then, I decided that I would try out the shower in the cave, for a change. It wasn’t too bad really, except that the shower head doesn’t fit into the holder, so you have to sort of juggle the shampoo and loofah in one hand and hold the shower head in the other. Then with your third hand you wash your hair! But, the water was fabulous and warm all the time! What next….oh yes…I listened to Russell Watson, whilst I was giving myself a pamper and then a quick tidy up of the cave itself, which took about 30 seconds!
By the time I got back up here the bakery was finished, but Damian was still in his nightie, so Ella and I chatted whilst he had a quick pamper too. Then it was Ella’s turn. She wasn’t too keen today though. She is very sore at the moment, where the new line has gone in, but slowly we got her going and she moved onto the big blue chair….where she stayed for the rest of the morning, mostly fast asleep!
When Ella eventually woke up it was after dinner and in her usual style she came up with an idea, completely out of the blue….peg dolls. Damian went quite pale, but I knew he was up to the job and between us we produced a reasonable ‘prince’.
We had visitors to look forward to today. Damian’s friend Stuart arrived first and whilst they were out for tea Uncle John and Debra arrived. We haven’t seen them for while, so it was good to catch up on family news and have a cup of tea.
Well, Ella and I had some time this afternoon to work on our food scrap book. All the pictures up to date are in it, we just need to put on the titles etc and then look for some recipes to add to it. There has been a lot of cutting out, trimming and sticking up to now!!
Sooooo that brings us back up to now. We are now on the second part of Corrie and Ella has got her second wind and is colouring in an Easter picture—from the book Uncle John and Debra brought. When these flashes of energy come along, we love it…what ever time it is!
We are going to finish blogging now and get it posted. I’m feeling rather peckish now, so I think I’ll pop down and raid the fridge….then listen to Russell again.
So night night to everyone and thank you as usual for all your support and prayers.
Lots of love Ella , Annette and Damian.xxx
PS Sorry guys, yesterday was day63, not 53
PPS Hi Rachael....I can rise to the challenge if you can ( I think)... not sure about that outfit though!!!

Day + 53
Well here we are again, twice in one day! It’s evening now though, in fact it’s almost 8.00pm and still light outside. Incredible.
We have had a very good and positive day today. Ella slept really well last, and although she was stiff and sore this morning, we have made the most of our day. Of course it has been catch up day, as far as treatments in her lines has been concerned, but we did manage to get a couple of hours off line this afternoon, around 5.00pm. It was too late and too cold to go outdoors, so instead we had a walk down the corridor and then into the cave, with Ella looking very snuggly wrapped up in her blankets. She is funny though. The first thing she wanted to do was to look in the fridge, in the cave kitchen!
This morning Muriel came and invited Ella to make chocolate Easter nests. “Yes please”.
Sally and I, and even Niki, looked at each other, maybe expecting the worst. We needn’t have worried…Ella was a star and enjoyed the making, without even mentioning the eating!
I went out to Swinton again today, because we had decided to make a food scrapbook, and we had spent a good hour cutting out pictures from magazines. I had instructions again, this time to buy a cookery book………not easy in Swinton, believe me. However, I did find a cookery magazine, so armed with all the bits and bobs I headed back.
Well, we have made a start! I’ve just tidied away now ( Ella is asleep ). We must have fifty pictures to of food around the world to organise. Ella has been in her element. Do you think her Canadian donor could be a food writer or critic?
As you know, Sally and I had the idea that we would begin some interior designing today, whilst Ella slept. How wrong can you be? She has been awake every minute of the day, bless her, and has been happy and settled. Consequently the Spring cleaning was left until last thing. We have got some empty shelves by the bed, now that Ella’s lines have been moved to the other side. Sally had the very good idea of moving all the books and DVD’S onto them, from the window sill. I must say they look very smart there and the window ‘seat’ has become home for a few teddies! Sally has taken home all the ‘old’ crafts, ready to store away, so I am looking at some empty spaces now. I’m sure it won’t take us long to fill them up again. Damian has just arrived, for the next few days, so I’m going to get him busy ‘doing’ tomorrow!
Both the Drs who have been to see Ella today, (Sven and the Consultant ), have been pleased with her. We seem to be going in the right direction again. Ella was due to have a Blood transfusion today, according to Sven this morning, however when the Consultant came this afternoon he said the blood count had gone up and she doesn’t need it. Great news!
I’m going to finish now. Damian has just made us a cuppa and I’ve got some pictures of this morning to download.
Soooo night night to everyone with lots of love and best wishes for a super Easter!!!!!!!
Thank you for all your support, messages and prayers. They mean such a lot to us, you know.
Ella, Annette and Damian.xxx
PS Thanks for your offers of sponsoring Sally. She was just too late in applying, but Simon is running it and will run for this cause if you want to sponsor him?
PS I’ve put my green flash pumps away for another time, Martin. A.

Day +62
Well, good morning from Manchester, and for once it really is morning. (I’m on catch up from last night.) So, it’s 5.30am and all is well.
Yesterday, Wednesday, we played the waiting game. As you know Ella was going down to theatre to have her line replaced. First on the list? Ummmm
We had a very early start, we knew someone would be up to check her over, early. Yes, she would be going down, as soon as her ‘bloods’ came back. That was about 8.30am. Twelve hours later she was actually wheeled into theatre…….so you can imagine everyone’s day.
We managed to keep going during the morning. Ella had had a really good night so she was awake and ready to join in. The nurses managed to keep some treatments going, through the line that was working, but others were put on hold until she got back up, and of course Wednesday would be the day when the twelve hour one is. By the time it got to 2.oopm we were really fed up, and by 5.00pm we had given up. Ella was tired and very thirsty, we had watched 3 DVD’S and Sally and I were ready to ‘eat alive’ the next person to walk in the room. Finally at 6.00pm, Niki came in and said it had been cancelled, they had been waiting for a consultant surgeon to come and he hadn’t arrived. Well, at least we knew, and Niki started to put the feed line back up and Ella had a little drink and caught up on some pain relief.
You can guess what happened next….he was here, she was going down, they’d have to wait because she’d had a drink, but she was next!
All went very well. We had a ‘good procession’ again this time….Ella sitting up on the theatre trolly, making sure Mummy was in sight all the time, Niki, a student, the porter and myself!
Whilst Ella was in, I popped back to change the bed etc and change the room around. We guessed, correctly as it happens, that the new line would be put in on the opposite side, and so all the nursing would be done on the other side of the bed. The big blue chair is now near the window etc.
Ella was fine when she was eventually back into bed. She was very cosy and comfortable. She has a massive bruise on her arm though, where the anaesthetist had used the thickest needle in the world. He must have thought he had a 20stone man in there! How resilient and brave are these little people?
It was staggering to see how quickly the girls had the new line in action, because they are now on catch up of course, with two long treatments to fit in, plus a blood transfusion today. I left for the cave about midnight, with Ella and Sally almost fast asleep and I’m here now. Ella has had another good night, with only a few waking episodes. Sally is catching up with some zzzzzzzzzz,s now on the bed/settee, and on the corridor I can hear the day starting to get into gear.
We decided last night that we would have a big,big sort out in the room today, now that we have changed the furniture round a little. I’ll keep you posted on how our interior decorating goes.
Thank you Simon, for offering to be ‘Sally’s legs’ in the run. There are no more places left. Honestly! We did look on line.
I can’t say night night can I? but we do send you all lots of love and as usual our thanks for your love, support and prayers.
Ella, Sally and Annette.xxx

PS The photos show Ella up and ready to go yesterday, concentrating on a sticker book, little did we know!!!!!!!

Day +61
Good morning everyone. Hope you all had a really good sleep last night, just like we did here. Yes….really. Ella had a super night.
We were all up, showered, bed bathed, dressed and pj’d by 10.00am, just in time for Sven’s visit.( Registrar). He was very pleased to hear that Ella had such a good night. However her red wiggly( one of the lines) is still being very naughty, soooooo it’s down to theatre tomorrow to have a new line fitted, probably on the other side. The old one will be taken out and the new line can start being used, more or less straight away. Ella has got so much going on with her lines at the moment, that they need two lines to get all the treatment fitted into the day. We’ve had another day with no time off, so maybe from tomorrow we can have some time out of the room again. That will be really good for Ella, even to just have a little peek at what is going on around the unit.
We all had a quiet morning really, but we had a visit from Dot ( pain team) and we are all happy with the level of relief at the moment. It’s very important to put it in place before they all disappear for the Easter break.
Round about lunch time I set off to do some shopping in Swinton….to get some real food.( We are fed up at the moment of making do with restaurant food, as nice as it can be at times.) We needed a few things for the Princess too, new drinking cups was high on the list. Ella has only very cold, boiled water, so as quickly as she empties one we need another in the fridge to take its’ place. I found some really good cups on Saturday, with a twist top, which can be used when she is lay down as well.. So my first port of call was back to the same shop…….they just had 3 left! Phew!!! So now we have 8 cups on the go, in various stages of use, lined up and ready.
Ian came this afternoon, bearing lots of lovely clean washing again…what would we do without our guys?
Ella had a really good afternoon. Everyone else is finishing for the Easter holiday, and Ella is just starting up on her school work. We talked about it this morning and this afternoon she got ‘stuck in’ with Mummy and Ian, beginning with Literacy. Spellings, alphabetical ordering and some writing! How about that then? Then after tea we went on to complete 3 pages of Maths………place value and addition. It’s so lovely to see her engaged and concentrating again.
I had Ella’s mobile topped up this afternoon, so she is back in business now if you have got her number. She must have spent at least an hour checking her messages.
When Sally and I went for our tea to the cave, we had to promise that we would each take photos of our meal to show her when we got back up. Not just one snap, but several from different angles. Well, we did our David Baily bit, and Ella thoroughly enjoyed looking at our food and asking about it. She isn’t upset any more, she is just satisfied to look at it and talk about it. We thought that we may start a new ‘project’ with her. ‘Food Around the World’ and then we can draw and write about everyone’s favourites and ‘publish’ them in a little book.( I’m being serious now, not teasing). It seems a good idea to harness all this energy and use it. (I guess we will all laugh about this, when she is a big girl and looks back.)
Well, Ella is finally asleep. She has had a ‘stay up’ until 9.30, chatting and watching TV. We have an early start tomorrow. We hope she is going to be first on the list, as promised, so the anaesthetist will be up here early.
Night night everyone, and thank you for your messages and news from home. Lots of love and thanks for your continued prayers and support.
Ella, Sally and Annette,xxx
PS Hope Daniel is back on top form ?
PPS Daisy would love to ‘walk out’ with Ozzy,as long as she is properly chaperoned.xx
PPS Sally is 'thinking' about doing the Manchester 10k run/walk/stagger to raise funds for the new bone marrow unit at the new hospital. Any sponsors out there if she is in time to enter?

Day +60
Hi all. Who can believe we have reached day 60 already? 60 days post transplant that is. I don’t think people believe us when we say the days seem to fly by. That doesn’t mean to say that we want to be here of course!
Manchester is dull and drizzly today, a complete change in weather for us. All the young mums, who had swapped winter togs for T.shirts, are shivering out there today. ( and some old Nannas too)
We made an early start again this morning, with Sam arriving for his ‘bloods’. He wasn’t getting away with it today under any circumstances, so as soon as his ‘magic’ cream had time to work he was whisked off by Mummy to the clinic. He came back ‘all smiles’, thank goodness. He loved his presents ,by the way, and entertained us by doing press-ups as well. I wish I’d have taken some photos now.
Ella had a good night in the main and she slept quite peacefully until about 7.30, when Mummy arrived up here, already showered and dressed. I decided I’d better join her, until I realised that the shower curtain needed to be re-assembled etc. Very frustrating! Never mind, I got there in the end.
After a wash and brush up, Ella moved on to the bed/settee for the day, which she has enjoyed. She has had another quiet day, joining in at times and snoozing when she felt like it. The naughty red line still isn’t bleeding back, even after various attempts, by various people, to clear it. The outcome has been that the white line has been on overload again, with no time off her lines at all. At the moment it has got the ‘unstuffing stuff’ in it again, so we’ll see what that brings.
There has been a lot of discussion today about the advice the various Drs have given over the weekend, about the pain control, and about Ella taking oral medicines or not. We were very confused, with everyone seeming to have a different opinion. However, there seems to be a consensus of opinions now, after a bit of a ‘caffufle’. As long as Ella has the correct treatment and is in safe hands we are happy.
This afternoon Sally popped out to do a little bit of shopping and later finished off a necklace for Ella, made from a type of modelling clay called ‘Fimo’. Hours and hours of painstaking work, making little flowers and cylinders to go inbetween. Very pretty. It has to go into a coolish oven to harden, so in it went for 20mins. When she went to get it out somebody had switched the oven up, maybe to put their tea in, and the kitchen was filled with smoke!!!! Sally came hurtling back, having thrown them all in the bin, and hid just in case the FB turned up again. We kept our fingers crossed and the alarm didn’t go off. What a relief. I guess we know what Sally will be doing tomorrow?
The Sylvanian family finally had a sort out today in it’s new location, I have set up a new village, under Ella’s watchful eyes. She didn’t want to join in herself, but she gave me the sign of approval.
At the moment Sally is in the cave, having a break and her tea. We have had jacket potato and tuna…..not very inspiring but very interesting to Ella of course, who has asked Mummy to take a photo of it. It has to be a close up today, so that she can see the detail clearly.
Ella and I are watching the second half of Corrie and discussing school dinners. She is in bed and all settled for another peaceful night. I think Sally and I will be asleep early tonight. We need to catch up on a few zzzzzzzzzzz’s, although knowing us we will be chatting or ‘fighting’ with the digital box, to try to get a decent programme on. The reception here is awful. The TV has a mind of it’s own and yesterday refused to play anything but Steve Wright’s Love Songs, which is a radio programme. You’d think we were on the moon wouldn’t you?
Anyway, we are going to finish now. Sally has arrived back, minus the photo, so Ella is in a ‘strop’. Lizzie is getting ragged around the bed instead!
Night night then, and as usual lots of love and thanks for all you support and prayers.
Ella, Sally and Annette.xxx
PS Hi to Nicola, Rob and Jackson, who live down the corridor from us. Hope you found the website ok. Happy birthday …the cake was lovely.
PPS Thanks to our ‘wishy washy’ guys….you are our lifeline!
PPS We have missed your comments over the last couple of days…keep us going won’t you?

Day +59
Hi everyone. Another sunny day here in Manchester, hope yours has been too. We didn’t get to the Spring Fair but it did seem to be busy down there, let’s hope they made lots of money for the new hospital.
Only a very short blog tonight, following a very quiet day.When the Dr. came to see Ella this morning he told us he still wants to keep Ella nil by mouth, except for clear drinks.
Ella has been in bed all day today, she hasn’t felt on top really, with tummy ache seeming to take over. Having said that, we have had a super time since about 6.30pm, with Ella back to her own self…..chatting to the nurses about ‘you know what’ and sitting up joining in. She has been telling Kelly all about her favs and Kelly in turn has been grilled( please excuse the pun) about hers. Sally and I were having pasta for tea, which we made up here and ate in the cave sitting room. When Sally went for hers she had to promise Ella to take a photo of it, so that she could see what we were eating!
We all enjoyed a lovely visit from Jules, who chatted to Mummy and joined in a ‘craft hour’ with Ella. They made some lovely pressies for Sam, I’m sure he is going to be delighted when he sees them.
It’s 9.00pm now and we are beginning to settle down for the night. Ella had a really good night last night, so we are trusting that tonight will be a good one too. The night staff have taken over and the lights are going out along the corridor. Ella is in bed of course and she has taken up what we call ‘the sideways lie’. This is where she lies across the bed, rather than along it. It must be comfortable because we can’t persuade her to move. As long as she doesn’t wriggle off during the night.
So we’ll finish now and have our last cuppa. An early night all round I think!
Night night to everyone, and as usual thank you for all your prayers and loving support.
Ella, Sally and Annette.xxx
PS Auntie Rachael and Uncle John, hope you all enjoyed your day out? xxxxx
PPS The shower curtain is lying in the little blue bath, soaking in soap and bleach. I’ve just remembered it’s there. I hope it hasn’t disintegrated!

Day +57 and 58
Where shall we start? I think with the early arrival of Auntie Rachael, Ian and Sam on Friday morning. They were armed with lots of Easter goodies from school for Ella (thanks OLOL ) and at least 10 loads of fresh washing. It smells gorgeous to us, you know, home done laundry!
Ella soon perked up, after a difficult night, and was washed and ready to start making chocolate lollies and decorating biscuits etc. whilst Sam was in the restaurant having his second breakfast. Rachael arrived back from the kitchen with melting chocolate ( dairy and non dairy) in ‘bain maries’, forgive the spelling here, and off they went. Ella managed a few minutes, then she was overcome by zzzzzzzzzz’s again and snoozed!
It was quite a short visit today. Sam wasn’t very keen on having his bloods done, so he was ‘excused boots’ until Monday, and Rachael needed to get back to pick the boys up from school, so they all left at lunch time. There was just time for me to try on my ‘Tina’ outfit, for Sally. She approved thank goodness.
During the afternoon Ella snoozed on and Sally and I painted in the sunshine. There wasn’t any time to come off the lines, they were on overload again. All we had to do was wait for Reg to pick me up. He arrived with another washed load, which included Tiger, so now we were really back in business. (We have had permission to take the washing to another ward, but we don’t think it is really appropriate to carry it through a full ward.)
When I phoned Sally later in the evening I heard that Ella was sleeping peacefully, Damian had arrived and he was staying with her during the night. A good nights’ sleep for Sally! She deserves it!
Reg and I? Super meal…Fantastic concert….Ride on the big wheel about 11.30pm,scary….rounded off with drinks in the hotel bar. Great!!!!!!!
It’s Saturday evening now and Ella is in bed asleep. I spoke to Sally a couple of times during the morning and she filled me in on important news about Ella and the latest developments.
When the weekend Consultant came to see Ella he agreed that she should continue to be nil by mouth. Later, the gastrologist, who conducted Ella’s ‘scope last week at Booth Hall, came as promised. He wants Ella to be nil by mouth completely again, including all (if possible) her medication. He wants her digestive system to have a complete rest, so it is just sips of water from now on. As you can imagine, this news didn’t go down very well with Ella. He said that although it is very difficult to explain to her, she is receiving everything she needs through her TPN feed line, and will continue to do so for a good while to come yet. The hunger she feels is down to the steroids, and not real hunger. To be fair, when Ella has asked for something to eat she has only had very tiny amounts, and more often than not, nothing at all. The thought of not having a choice must be very difficult for her though. Soooooooo…..it’s back to all lines busy. Actually, I’m sure it must be a relief to Ella, now that she doesn’t have to struggle to keep her medicines down.
Ella has had a good morning, playing with Daddy while Mummy tidied the room up, and by the time Reg and I got back this afternoon, she was having another snooze. In fact, she slept on as Damian left for home.
Reg left shortly afterwards, with yet another load of washing. He is thinking of taking it in professionally girls. We can recommend him!!!!!!!!! ( not to mention Ian) In fact they could set up a little business couldn’t they? Perhaps go mobile? All they’d need is a van and a dolly tub each. They could share the mangle.
We are finishing now. There is absolutely nothing on the telly. It’s too dark in here to paint, with just the fairies twinkling, so Sally and I are chatting, drinking tea and planning just what we are going to do tomorrow. There is a Spring Fair here tomorrow, in the car park over the road, to raise funds for the new hospital.( prayer mats out please ) I expect we will wander over there at some point, although taking Ella will be a ‘no no’, because she can’t leave the hospital grounds.
Soooooo, night night everyone.
Lots of love and all our thanks for your prayers and good wishes, as usual.
Ella,Sally and Annette.xxx

Day +56
Well, what a beautiful day it has been here in sunny Manchester. The sun has been shining all day long. In fact we have had to have the curtains drawn for part of the afternoon to keep cool. We never thought we would say that did we?
Another quite restless night ended about 7.30am for us. It was quite a relief really, to be able to start afresh with showers and ‘baths’ all round. Kelly has been looking after us today and she hadn’t long taken over when Ella shouted”blood”. We rushed to look ,and found her line bleeding back all on it’s own! Naughty thing!
It was a good excuse to get the ball really moving, and once the lines had been replaced Ella moved over to the bed/settee to have her big wash. In fact she did half herself! She was making Sally and I cry with laughing as she had her foot in the ‘top and tail’ bowl. Ella was giggling away. It was fantastic. As Mummy said, she will be back in the little blue bath soon. Ella did give her a ‘funny’ look at this point, so that might have been a step too far at the moment. Still, we’ll see!
After Ella had been ‘lotioned, potioned and pj’d’ we did our housework ready for the arrival of Grandma and Grandad, who were coming along with Uncle Gav. At these important moments Ella always seems to have a few zzzzzzzzzz’s to fit in, so of course she was fast asleep as they arrived. We all had a chat and then the big moment….she awoke to see her pressy……a new Sylvanian extension to the village. That prompted a real energy boost, and as you can see from the photos Ella even enjoyed a short time sat on the floor setting it up.
Ella came off her lines early today, so that she could enjoy the sunshine. We had asked Kelly if it was possible to give us a break in the middle of the day, as we knew Ella was due to have a blood transfusion at some point. So, by 12.00 midday, she was free and we set off to ‘take the air.’ We had a walk to the Restaurant for Ella to buy a couple of drinks, and then after much choosing she bought a necklace for Mummy, from a jewellery stall set up on the corridor. Then, it was outside to sit in the sun. Ella was wrapped up warmly and we sat in the sun for a good 20mins. Ella did what comes naturally, during the day that is, and fell asleep, but nevertheless definitely enjoyed the fresh air.
When we got back inside we had missed Dr Wynn, however there was a promise that he would be back later. Very important as well today, because he is going away tomorrow for 3 weeks and we wanted to see him to get an update etc.
We had a very peaceful afternoon today, with Ella asleep for most of it. She has definitely been making up for last night, and she is still asleep now at 7.30pm. No prizes for guessing when she will wake up!!! It is a toss up really, whether to let her sleep on when she needs it, or wake her and get Lizzie thrown at you.
Sally has been on the computer, on the Sylvanian site and I have been painting. Oh the joy of having nothing to think about for a couple of hours.
Dr Wynn came back about 6.30pm ( Ella still asleep) and reassured us that all Ella’s needs will be met by his team, whilst he is away. They are of course all very experienced in their own right. He did mention that the gastrology team will be coming to see Ella soon and I wouldn’t be surprised if the results didn’t find their way to his Australian hide away. We wished him Bon Voyage and he said he will see us when he gets back.
Oooh …..Our Little Princess has just woken up in time to watch the ‘Enders wedding. Now there are three pairs of eyes glued to it.
We had a new diet list passed in to us today as well. It is very much better from Ella’s point of view, and includes more veg and even more fruits. We can include more meat now and her favourite …HAM…. provided she can tolerate the new additions. It has to be a day by day, very gradual, gentle approach.
The transfusion has been started and is due to finish about 10.00pm. I think because of the long, long, long,long sleep today we may have a long,long,long stay up tonight, don’t you? It may even be a video night!!!!!!!
Auntie Rachael is bringing Sam tomorrow, so we need to think of ideas to keep little brother busy. Then Reg is coming to ‘whisk’ me away to the Tina Turner concert, at the M.E.N. Arena. “River deep, mountain high….yea yea yeaaaaaaah”
We are going to finish now. Quite early for us really, only 8.00pm and still light.
So, night night with all our love and thanks for you prayers and loving wishes.
Ella,Sally and Annette.xxx
PS Thanks to Reg, who has taken over the ‘wishy washy’ job from Ian, over the last couple of day.s.
PPS Thanks to Auntie Andrea, for looking after Bumpy and big cousin Daisy whilst I’m at the M.E.N. “You’re Simply The Best”.

Day + 55
Today began early with Ella waking about 7.30am. Sally and I had a slower start with our usual cuppa, and then we got the wheels in motion, so to speak. Ella had a comfortable night. She had some waking times, but on the whole she slept quite well.
Medicines began really early, in order to fit them all in, within the day. When Dr Wynn came this morning he said Ella is improving slowly, after a difficult transplant. The medication has changed again today to include a drug which needs to be given three times a week, beginning today. However, it goes over 12hrs in her line and needs tablets three times a day, plus line flushes, to push it through. It began today, so unfortunately for our brave little angel it has been a constant flow of medicines, both IV and oral, and no time off her lines. The morning went quite quickly, but by this afternoon tiredness and frustration kicked in. It’s not surprising is it?
Ian arrived quite early too, with enormous bags of clean washing (big thanks Ian) and three more ‘pets’. What this time? A pony, a cat and a duck. The “Twelve Days Of Christmas” has nothing on us!
Whilst Mummy was out, stocking up on Ella type foods, Ella enjoyed her bed bath, especially the lovely strawberries and cream body lotion she had on afterwards. Sulynn, our ‘daily’ on the ward, was in here when Ella and I were getting her ready and she kept coming over to sniff it!
Sally landed back with lots of bags full of goodies, and we had strict orders from Ella to speak to the dietician about whether or not she is allowed them. Good news for Ella because most of them are. They are all a variation on a theme, but at least they look a little different to Ella. There have been different veg added in and cornflakes too!
We all enjoyed a visit from Martin this afternoon. It was good to chat, but as I have already told you, Ella was tired and not really in the mood to join in. That didn’t stop us trying though, and out came the Wii. Martin promised us he had hardly played….umm….it didn’t take long before he had wiped me out on the Mario Cart. Sally took over from me and things soon looked up for the girls!!!! Mind you, we three grown ups were interrupted by Dr Arkwright and Dr Wynn, who came in to introduce a new consultant immunologist, who is moving up from Great Ormond St!!! Slightly embarrassing don’t you think? The photo above shows you Sally and Martin locking horns……it was only when they had finished their last race, at the bottom of the score board, that Martin realised he had been trying to race Sally’s car, thinking it was his!! Talk about men drivers….
(Thanks Martin for taking the latest washing home, and thanks Reg for washing it.)
Ella decided that she would like to try some chips for tea. I knew that Auntie Rachael had made some over the weekend, and now it was my turn to try my hand. Half an hour later I emerged with a few ‘oven chips’, hoping against hope that they would live up to their predecessors. They seemed to, and they even spurred Sally on to try making crisps….salt and vinegar crisps even! We know Jamie Oliver can do it, but we both agreed that even he would be pushed to manage crisps using only a potato peeler and a wobbly oven. Anyway, the taste was ok. Enough said.
Damian and Stu arrived about 6.00pm for a visit, which Ella enjoyed of course. It gave Damian time to catch up on Dr Wynn’s latest treatments and Sally and I time to have tea in the restaurant, together.
It’s now getting quite dark, and we three have been missing our dose of ‘Corrie. Ella is asleep, Sally has been painting and I’ve been practising my ‘River Deep, Mountain High”. No prizes for guessing who Reg and I are going to see on Friday. Can’t wait…….
Well we’ll finish now. The fairies are twinkling and Ella’s ‘glow in the dark’ bracelet is showing bright orange under the sheet. ( It was a present from Muriel for being a brave girl and swallowing her tablets today).
Night night to everyone and thank you for all your prayers and loving support.
Ella, Sally and Annette.xxx
PS Special best wishes and good luck to all at St John’s during your Ofsted days
PPS Special best wishes as well to everyone at OLOL and lots of love to Grace, Ella is missing you and all her friends very much. See you soon.x