Ella Bella's Bone Marrow Transplant

2009-10-26T09:20:00.000-07:00

Monday 26th October 2009

Dear Friends,
Our dearest, precious Ella passed away peacefully in her sleep on Saturday ( 24th October ). Her bravery and courage has been an inspiration to everyone. She is a very special little girl and she will be remembered for ever.
Thank you, as always, for your loving support and prayers.
Annette.

2009-10-13T22:37:00.000-07:00

Day +250 ( Tues 15th Oct)
Good morning and welcome back. It’s actually 5.ooam on Weds morning now, but all is still dark and it still feels like last night, if you know what I mean. I did start this last night but I only got as far as the day and date and gave up. Ella had spiked a temp so I was on cooling down duty etc. We are not allowed to have elec fans….but who needs a fan when you have 3 sheets of A4 and a Nanna to waft you?
Yesterday we woke up, after a really settled night. Ella slept for 2/3hrs at a time and I felt as though it was my birthday when I woke up. Ella didn’t want to wake up at all really, and by 10.30am Kirsty and I decided that we would be brave and face the tiger…….we had a slot to go down to OT, to do some painting at 11.30am.Ella on the other hand had different plans, and really wanted to have a duvet day. We compromised on a very short wash (no hair) and we just made it in time. Liz then had the unenviable task of persuading Ella that she did really want to paint plant pots, and not stay in bed. As you can see from the photos we managed to get it painted, between us. It was very much a team effort, although by the smile on Kirsty’s face I think she was really enjoying it. Ella is planting it up next time!
When we got back Ella flopped. She was completely ‘plum tuckered out’. Teacher Liz arrived and read a couple of stories and that was it for the next couple of hours. Because Ella had spiked a temp the usual blood samples were needed, but as usual her lines were being naughty, so along came a Dr to take a sample from her hand. ( no Dr Gorgeous today ladies. I did have my camera ready though). Why am I telling you all this?....Oh yes, Ella was allowed to choose a pressy from the pressy box, for being brave, and chose one of those ‘archaeological dig kits’. The ‘bones’ are buried in a small lump of plaster and you have to dig them out with a tiny chisel, mallet and brush. We’ve had them before actually, from the museum, so Ella knew what to do but Ali and Kirsty didn’t. It wasn’t long before Ali was into it!
During the afternoon the ‘telly lady’ did come back as she had promised, and it has been re sited facing the bed, properly! It’s quite a relief to be able take up our long cable and to put the ‘sputnik’ away. I had a bit of a fight to fit the TV from home back in its box. It was like a Chinese puzzle, but I did it AND I got the base off it too, so that will be some more clutter to take home. The new TV is almost identical to mine and I must say that the picture quality is really good. There is only one problem……ITV isn’t one of the channel choices for some reason. What we are going to do without Corrie and X Factor I don’t know. I have told her about it and she promised to ring the’ provider company’ to get that channel put back on. Apparently only one channel is supposed to have been censored…..one that the male Drs would like, she said. Mmmm. It’s another 'watch this space' situation, I think!
I’m going to finish now and get this posted. Although it’s 6.00am now there may be a chance for a few more zzzz’s?
Night night, lots of love and all our usual thanks for your loving prayers and support.
Ella and Annette.xx

PS Hope you like the photos.

2009-10-12T23:28:00.000-07:00

Day +249 (Mon 12th Oct)
Hi. We’re back again. It’s just after midnight and I’m taking this quiet time to catch up on today’s events. Ella has woken up for a ‘pit stop’ so while she settles back down again I’m having a quick cuppa and a bag of S. and V. crisps, made all the more special as I’m doing it by the light of the computer. She has had a wonderfully, unbroken sleep from 7.15pm, so I’m hoping she will have another until 7.15am. Somehow I don’t think so though!
We have had a good day today, even though we had a very restless night last night. There were times today when I thought I would fall asleep on the spot! They were only blips though, and a good sit down and restful evening soon pick you up again don’t they? We started the day early, with a bed wash for Ella, so that when Linda arrived we were able to get her out of bed together.
Ella had been looking forwards to Linda’s visit, because they were going to make a special ‘crown flan’ together. True to her word Linda brought all the ingredients to keep the three of us busy for an hour….and the results were magnificent, as you can see from the photos, not to mention great to eat too.
Soon after Linda had left Liz arrived for Ella’s lesson, with another treat for her….. home grown raspberries. How kind it is of everyone to remember Ella, even when they are off duty! We spent almost another hour talking about fish and looking at pictures of them, ready for Ella to try some drawings to make a wall display of. Our underwater adventure story will have a super background when it is displayed then. Just as Liz was finishing Sam and Mummy arrived and that added a whole new dimension to the fish book, as Sam chatted away about the pictures. It helped motivate Ella a little as well.
Liz left and who should arrive? Yes the physio. Ummm. We had to have a bit of negotiation before Ella set off on her walk to the nurses’ station, but we got there and back, with a rest in between.
Sam had his ‘bloods’ done in here this time. He was very good as well….not one tear. Linda had come back especially to meet him, so he was feeling very proud of himself. Linda will work with the whole family, if we need her to, so today was a good opportunity to meet Sam and to think about a time that when he comes to see Ella, Linda could work with both of them together.
By the time Mummy and Sam were ready to set off home before the rush hour, Ella was really tired and grumpy, and it wasn’t long before she was fast asleep. At this point I need to tell you about the arrival of the new TV!! It came this afternoon during physio, and as we thought, it was set up level with the bed head, so that the child needs to be a contortionist to be able to watch it in bed. There is no doubt about it….there has been no thought, what so ever, put into the planning side of making this a child friendly environment. I don’t think it’s just me, is it, who thinks a TV should be facing you when you watch it? Anyway, it’s facing us now…..I moved it, to where ours was, and at the moment it’s plugged into our ariel. They are coming back tomorrow to try and fix it up in a place facing the bed. There aren’t many places, facing Ella’s bed, to choose from as you can imagine…..so we’ll have to wait and see what they come up with!
I’m going to close now on a much less grumpy note…..we hope you enjoy the photos of Ella and Linda making the ‘piece de resistance’.
Nite nite and lots of love to everyone. Thanks for all your loving prayers and support, as usual.
Ella and Annette.xx

PS Hi Janet....great to know you are still there. I've some ward news to catch you up on. Jo( Sister jo) finishes on Thurs to have her baby....can you believe it? and Kelly is expecting now too. I was showing Linda some old photos yesterday and she recognised you!x

2009-10-11T15:24:00.000-07:00

Day +248 (11th Oct Sun)
Hi and here we are again, back in office , so to speak. It’s 10.30pm and Ella has just had her latest medicines before she settles down for what I hope will be a comfortable sleep. I know from Daddy that she has slept quite well for a couple of nights.
There was quite a change on Friday night….Sam came to stay too. Sally found out from the Family Care Team, by chance, that there is accommodation in the adults’ hospital for families to stay, well at least a child. So, on further investigation it was available on Friday night and when Damian came up he brought Sam with him. It was a treat for Ella and Sam to have breakfast together and a little play, and then he came back with Sally on Saturday afternoon.
There have been changes to Ella’s treatment since last week. Dr Wynn and his team have decided to try Ella on another course of chemo, which she started on Friday. Other drugs have been adjusted too, to fit in with this new move.
While all this has been going on, and more to the point….while I’ve been at home, Sally has tidied up and sorted out Ella’s room. You know us…..we like to live in homely clutter, but as per usual it was getting a little out of hand again. We just don’t like to throw anything away, that’s the problem. When Sally told me that she had unscrewed shelves I was wondering what I would be coming back to!! As it happens all is well. The cupboards are still intact and everywhere looks very nice…..just moved round, one place to the right!
Ella had the lovely idea of making a salad for my tea, so before Damian left I had to dash out to Tesco to buy the bits and bobs. We then spent a great hour cutting it all up, together 5 pieces of fresh fruit to make a fruit salad, all of which I had to eat….. Honestly, my tummy has been fizzing all evening. I must have had all my fruit and veg rations for the whole week!
I’m going to close now and try to catch some sleep while Ella slumbers. I have got my new PJ’s on. They have already raised a couple of eyebrows…Ali’s and Jo’s. They are very posh……coffee coloured satin. What about that then? They feel nice and warm, but I’m a bit worried about the static on the BGC. What do you think? At least if Dr Gorgeous comes along I’ll look presentable, in a Mrs Bucket sort of way.
Night night from here. We send you lots of love and thanks for all your caring wishes and loving prayers.
Ella and Annette.xx
PS Love all your news. Hope you all managed to get to the fireworks displays?
PPS Hope all at St John’s are safe and well. Sue has a matching pair of PJ’s if I remember rightly?x
PPPS We are looking forwards to seeing Sam again tomorrow….he is back here to see the Drs for his checkup and bloods.
PPPPS Hi to Anne. Hope you've managed to log on again?x

2009-10-06T23:07:00.000-07:00

Day+243 ( Tues 6th Oct)
Good morning to everyone. It’s 5.30am here and I’m sat by the light of the fairies, catching up. Ella’s nurse tonight isn’t one of the regular team, but she is a very lovely and experienced lady, Tricia, who has looked after us before. She is also very chatty and will chat to us all through the night, as if it is daytime. It’s quite funny really……it has the very calming effect on Ella, of sending her back to sleep rather than her worrying about going back to sleep , if you know what I mean. It has a different effect on me, as you can see! Last time she came, she brought in some photos of her cats for Ella to enjoy. She really is very nice indeed.
I’ll quickly tell you our news and then try another hour of zzzz’s. Yesterday was a good day. Mummy didn’t come back though. I know she was feeling better, but she has to have 48hrs of no symptoms before she can return. Ella was very disappointed, but we filled our time and the day passed quickly.
Ella had what, Muriel called, a duvet morning! She was fast asleep until well after 11.30am, so I decided to let her sleep on. It gave me time to do some reading and sorting out. Then it was all go! Reg arrived in the middle of our bed bath, with lots of goodies, and he even remade the bed, while Ella sat on my knee for 5mins.
When Liz arrived, to carry on with Ella’s literacy lesson, Ella was less then keen I have to admit. It’s very difficult to motivate a duvet diva…..but she struggled on ( Liz that is). It reminded me of some of my teaching days ! The lesson ended by deciding on Fridays Golden Time recipe….fruit salad.
Next TWO physios arrived, much to Ella’s horror, so there was no escaping the walk out into the corridor. She did really well though, considering walking hasn’t been a priority for a few weeks. The ‘carrot’ was that she could wash my hair if she managed the walk! So, it was into the bathroom, where we managed to fit in Ella in the chariot wielding the shower spray, me kneeling with my head over the bath and Reg in charge of the bleepers! Actually she made a very good job of it. Then it was all change while we washed Ella’s. After a quick shuffle round, Ella hung her head over the back of the chariot over a bowl, which Reg was holding, while I washed her hair. Got the picture? We drew the line at Reg’s!!!!
There was enough staff on yesterday for us to be able to go for a walk. So after Reg had gone, Sarah took us out. We paid another visit to the shop, for drinks and icecreams and then came back via the canteen, where I bought some tea for myself…….veggie stirffry!! We sat back up here then, eating and watching ‘Matilda’, until it was time to watch our favourite TV progs.
What else…oh yes…our pumpkin//skull! It may well become a fish yet, so that it can be part of our under water adventure story we’re writing with Liz. I'll keep you posted.
I’m going to finish now, well almost now. I’ve got to tell you about why the nurses’ hearts are fluttering. Ella spiked a temp during the night and it is the ‘law’ that bloods have to taken, to culture for bugs. Of course her lines weren’t bleeding back, so ‘Dr Gorgeous’ came to do the job. Another one with film star looks AND he made the job look easy. Even Ella was impressed….which at 1.00am with a needle stuck in your foot is quite something!
Anyway, bye bye from us and we send you lots of love and our thanks for all your support and loving prayers.
Ella and Annette.xx
PS Hi to everyone at OLOL. What a ‘todo’ yesterday! x
PPS Hi Becca. Enjoy your trip up here for weekend. Happy birthday Heather.xx

2009-10-05T14:40:00.000-07:00

Day +242 ( Mon 6th Oct)
Hi and welcome back. I wasn’t absolutely sure that I’d still be here tonight….but here I am. Why? Because the girls brought those Yorkshire ‘eeeebeeeegeeebeee’s’ back with them, AND they have been in bed with them all day, as well!! Actually, they both sounded much better when I spoke to them earlier….only walking wounded now. That ‘ll teach them to go mixing with flamingos!
Anyway, back to Manchester. We are still moving forwards. Dr Wynn was very pleased with the progress Ella has made over the last two weeks. He has tweaked her treatment slightly and plans more meetings soon.
Ella herself, and me of course, had one of those nights! It was very hot in here, Ella was thirsty…. but isn’t allowed a big drink after a certain time ( sore tummy ), I couldn’t sleep on the BGC ( stiff neck), so between us we managed to be awake for most of the night. Each time I made for my bed I must have triggered off Ella’s inbuilt alarm system, and she’d wake up wanting me to stay by her. In the end I got the ‘Fairies’ going and went up another 3 levels. Great therapy!! Funny how children can sleep through anything except us ( grownups) getting into bed isn’t it?
We have had a good though. We are now the proud owners of a papier mache balloon! It was going to be a pumpkin, but the balloon is the pear shaped kind….so now it’s going to be a skull! As you may have guessed our Halloween ‘deccies’ are in the pipeline….
When we had de-glued ourselves Liz came for Ella’s lesson. She was a little late because the hospital school has been ‘Ofsteded’ today, if you can believe it? A new music teacher arrived too , and Ali physio, but by now Ella had given her all and was fast asleep. ( Well she had her eyes firmly closed, anyway. Or maybe it was glue?)
Later on Ella had a lovely idea for us to have a beauty afternoon.
‘What shall we do then Ella?’
‘Well Nanna, we’ll take all your makeup off first and…..’
We did actually have a really nice hour and the end products were very becoming, I must say!
No trips out today sadly. There was only 2 staff on all day which meant we couldn’t leave the ward at all. Dr Wynn was unhappy about it too, but he doesn’t seem to be able to do much about the nurse staffing.
We are now in the peace and quiet of our room again. It is 10.30pm and Ella is fast asleep. I’m blogging, but soon to be sleeping if I can get passed the radar!
Nite nite from us here, and as usual we send you lots of love and thanks for your loving prayers and support.
Ella and Annette.xx

2009-10-05T00:09:00.000-07:00

Day +241 (Oct 5th)
Hi everyone. It’s the early hours of Monday and I’m just going to give you a ‘quicky’ to keep you up to date after the weekend.
As you know Daddy was coming on Frid for a couple of days. The hand over was smooth as ever and he was just in time to help us make pizzas with Liz. Ella was delighted and shortly after that I made an early get away to avoid the Friday traffic.
I know from speaking to Damian the next day that Ella walked out with the physio Ali, and had a comfortable night, and when Grandma arrived the following morning they were ready for a good day. I think Ella was quite sleepy, but they did manage a trip out to the shop etc. Sunday was much the same, but with more trips out. When I arrived back there was plenty of staff on and we had a walk out to the shop at tea time. ( We have discovered that the shop in the maternity hospital stays open later than the one in the children’s hospital, so that’s the one we head for now.)
As for the rest of the family……..we all had a good weekend too. The girls, and the rest of the team, froze in Flamingo Land, but had a great time nonetheless. I, in the meantime, filled my time with washing, drying, TV and meeting up with Claire ( a really good friend whom I haven’t seen for ages) which was an absolute treat, and we promised we would meet again soon.
I’m going to close now and get myself organised ready for the Monday ward round. Knowing my luck I’ll still be in my PJ’s when they appear. I’ve become a little addicted to the ‘Fairies’ game on the laptop…..it’s surprising how much time it takes up when Ella is snoozing.
So, bye for now. Lots of love from we two, and we send you our thanks, as usual, for your loving support and prayers.
Ella and Annette.xx
PS It was lovely to see friends from AMC yesterday. x

2009-10-01T15:31:00.000-07:00

Days +236, +237 ( Weds 30th, Thurs 1stOct)
First of all ‘white rabbits’ for today and then it’s another hello from our sauna. Phew!!! It’s 10.15pm on Thurs evening and it is STIFLING in here. Wish that man would get his finger off that knob.
Anyway, down to our news. Ella had a wonderful day yesterday. She was up and alert early, after what I thought was the hottest night I’ve spent for a long time. But it seemed to do Ella good, and after an early wash she was ready for the physio at 10.00am. Our little star got out at the far side of her bed and walked around to this side, to get onto the BGC. We helped and encouraged all the way of course, but we got there. She sat out all day, and was still out when Grandma and Grandad arrived later in the afternoon. By that time Ella was asleep, but she soon woke up and that started a super couple of hours. Ella wanted to go for a walk out to the shop, (with ALL of us) so off we went….Ella in the chariot, Grandma,Grandad, Mummy, Nanna and nurse Ali pushing the drips. The shop is just about big enough to fit us all in! Needless to say we came back with a bag full and a very happy Ella. Only one blip…..Ella’s lines are being naughty, so she is having to have bloods taken from a vein again, whilst they try to clear the lines. Results are ok though, and the ENT Dr is pleased with her ear. She needs it draining again later in the week.
I decided to take a trip home last night and leave Sally to it over night. My day at home has been very nice….lunch with Reg…a spot of shopping to buy Ella some new tops….and a 3hr journey back!!! More about that later.
Ella and Sally’s day has been more difficult, with Ella not feeling too good today. She told Sally quite firmly that she wanted a lie-in and she stayed asleep all morning! Ella has sat out today though, for a little while. She’s sleeping very peacefully now….stretched out and completely relaxed. Lovely! (Some of the medication she is on is very powerful stuff and ’Dr Denise’ decided at teatime to leave one particular one off, for tonight and tomorrow).
Sally and I have swapped over again tonight, because she and Rachael are taking the rest of the brood to Flamingo Land, for the weekend. That meant I needed to set off about 4.00pm. I had the journey from hell…..
I blame ‘Sally Traffic’ on the Steve Wright show BBC radio2, myself. She said there was a massive hold up on the M62 and to avoid it. Well, I and all the other motorists in the north west did just that, and we all met up at the end of the East Lancs instead!! Then I got utterly and completely lost in Manchester. Every person I asked directions of didn’t come from M’ster, and nobody was able to tell me how to get to one of the largest hospitals in the North West! There are NO road signs to tell you and as it got dark and I was passing the MEN Arena for the 5th time I was beginning to wonder if I’d ever find it. Somehow I did and I landed at 7.30pm. Which just goes to show ladies….we don’t need sat navs do we?
I’m going to finish now that I have brought you up to date. Daddy and Grandma are coming to stay Frid and Sat night, so I’ll have to update you on Sunday or Monday. I’ll be heading back to Southport tomorrow night….if I can find it.
Night night and lots of love to everyone. Thank you, as usual, for all your loving thoughts and prayers.
Ella and Annette.xx
PS Ella was sooooooo delighted and excited to get your parcel Becca. To get something through the post was just brill and to find it was bubbles!!!!! We were all allowed a blow and Ella is using them as a physio exercise too!!xx
PPS Welcome back Sam and Grace.xx
PPPS What am I going to do with myself at home alone, for two whole days?x

2009-09-30T00:00:00.000-07:00

Days +234+235 ( Mon 28th, Tues 29th Sept.)
How can it possibly be 2 whole days already, since I last blogged. We seem to be going on fast speed here, at the moment. Mind you, part of the problem is that we are not getting a proper connection. It is very slow and a bit hit and miss. I just hope that the dongle isn’t on it’s last ‘dong’! Any way I’ll give you an update on the last couple of days.
Ella has slept well during the last 2 nights, and that has meant that she’s been awake earlier and more ready to join in earlier….so everyone gets a better response. Yesterday saw the return of Dr Wynn, who arrived early morning, with his entourage in tow. He was very pleased that Ella is stable once again, and he hasn’t got any plans to change anything right now.
Ella, in the meantime, tries her very best to live life, with determination and courage, and to enjoy our days. She wanted to go for a little walk yesterday, but it didn’t work out that way….she fell asleep when there was a ‘staff slot’ and when she woke up there was no.one to take us out! Today was a different story….we went out about 5.00pm to the shop in the maternity hospital. It must stay open later, thank goodness, and we had a great 'shop'. Ella bought a book ( cookery….finger foods) and 2 nail files, and I bought 2 iced lollies( to cool us off ) and a pot noodle. What does that tell you?
We had visitors today as well. Firstly Rachael, Jack and Sid came to see us. Who is Sid you may ask? Well, Sid is Jack’s class mascot and he has been soooooooo excited waiting to bring him to see Ella. They had a little play together and then it was time to turn around and head back home. They came on the train( car trouble) and Sally went back with them, for a night at home with Sam.
Just as they left Andrea and June arrived, with treats of course. Ella was asleep, of course, in the BGC , but after a while and a shy beginning, she woke up and we enjoyed a lovely afternoon together. In fact, we did what all ladies do when they have a gooey choc cake to eat…..we had afternoon tea. By now Liz (teacher) had arrived and she joined us, so Ella had a speaking and listening lesson, as she served slices of cake. Very English, don’t you know!!!
I had already asked if Ella’s physio session could begin to include some walking again, so when Jan came along she is quite happy to do that, now Ella is getting out of bed again. She’s going to have a play with the bed too. She has always said that these super duper new beds can be made into a chair , and in fact get someone into a standing position…..so she is going to have a play tomorrow……..cameras at the ready!
I’m going to finish now and settle down for the night. It is like a sauna in here. Goodness only knows what has happened to the air system. Someone somewhere has touched a knob!!!!!!!!!!!!! Ella and I are melting.
So, night night from we two. We send lots of love and our usual thanks for your loving support and prayers.
Ella and Annette.xx
PS Thanks for your messages…..keep them coming.x

2009-09-27T23:31:00.000-07:00

Day 233 (Sun 27th Sept)
Hello again and welcome back. It’s just like yesterday really….I’m sat here, it’s about 5.00am, in the peaceful atmosphere of Ella’s room, listening to zzzzzzzz’s from Ella and Mummy and thinking about the news to tell you today.
Ella had a much better day yesterday….so that is the first thing to say. In fact she was sat out in the big green reclining chair ( I’ll tell you about that later) all day. We began with an early start, for us that is. Ella had her hair washed and we chose something pretty to wear and then she sat out and did some painting with Sally. ( it’s the 1st time she’s sat out for over a week.) It was great to see her engage in an activity like that.
Sally then disappeared to get us some lunch….on Sunday the canteen has a reasonable roast. WELL, when she got back there was steam coming out of her ears and she went on to explain what a performance she’d had trying to get satisfaction for the £16 pounds we were paying for 2 dinners and puddings etc. I hear that the whole queue started to rumble too….so maybe the ‘powers that be’ will have enough food for everyone next week….cooked on time….and not served in the smallest take away poly/dish in the world with everything piled on top of the other!!!!
After lunch we were looking forwards to X Factor….Ella was all ready….button pushed…. Comfy pillows etc. Then the beeps started and in came a flurry of angels, all helping each other out to get the pressures correct on Ella’s pumps. The only problem was, for us, that they were stood right in front of the screen. We could hear but not see! By the end of the programme we had given up and Ella had returned to bed to watch Grease….in between the beeps. Mind you she was tired, so a little snooze was in order.
We had a lovely surprise visit, from Uncle John, a little later. We had another trip to the canteen to get some tea, so that Ella could ‘help’ Uncle John to eat it….yes a lovely visit.
Did I tell you about the BGC ( big green chair?) Well, last week Jo, transplant co ord nurse, took pity on us when 3 of us stayed over, and she found us a reclining bedside chair, so that we can be closer to Ella during the night and even get some sleep. We are the only room to have one, so don’t tell anyone will you? I think eventually all the rooms will have one…but for the moment, in our case, it has made a great difference to Ella, because she can see us during the night and hold hands etc AND it’s comfortable!!!
I’m not sure what’s lined up for us today yet. I know Liz will be coming, and the physio and all the other usual, weekly activities we have.I think we may have some visitors too….Grandma and Grandad are back from holiday, so I guess they will be coming along very soon.
I’ll close now and get this posted off. It will be coming light soon and I want to have another cuppa before the ward starts to be on the move. I’ve got to run the gauntlet of crossing the bridge, to get back to the dorm.,in my spotty pj’s yet. It’s not too bad at the weekend, when the place is empty….but during the week everywhere is heaving from very early morning.
Night night from we three. We send you lots of love and our usual thanks for your prayers and loving support.
Ella, Sally and Annette.xxx

2009-09-26T23:15:00.000-07:00

Day 232 (Sat 26th Sept)
Welcome back. Just a very short update I think. It is now 5.00am on Sunday morning and I am sat in the peace and quiet of Ella’s room, thinking. Watch out!
We had a good day yesterday….not very exciting really….but a good day. Lots of positives. Ella eventually ‘got up’ and had a very short wash, just in time for Daddy’s friend, Stuart, to arrive. He brought some letters for Ella, from his little boys….lovely.
We couldn’t go out, unfortunately, because of lack of staff, so they day did seem longer. We had a visit from the physio though, and she was very pleased with Ella….who managed to suck and blow on her inhaler ‘thingy’.
Daddy left for home…a few tears all round of course. He has had a longer stay this time and Ella has got used to being a ‘Daddy’s girl’ again. We coped though and waited for Mummy to arrive. We had a VERY long wait. Poor Sally had a nightmare experience coming back on the train and ended up getting a taxi back from Salford Crescent Station ( where ever that is ) because she couldn’t get on the train. Anyway, she was safe….that’s the main thing. In the meantime Ella and I ( well me really) watched ‘Strictly’ in peace. We are saving X Factor for Sunday afternoon….when we are all awake to enjoy it!!
I’m going to finish now except to tell you about a lovely pressy I was given yesterday. A really unusual pressy….half a cooked chicken. Nicola ( our next door neighbour and dorm sharing friend) had a visit from her inlaws and they brought the chicken with them. They had too much and shared it with me. It was divine!!!!!! I shared it with Sally, of course, although she was in danger of loosing it…..another few minutes in that taxi and it would have been gone.
Night night from us all here and thanks for your loving thoughts and prayers, as usual.
Ella, Sally and Annette.xxx
PS Any ideas about using left over chicken bones in the microwave?x

2009-09-25T23:55:00.000-07:00

Day 231 ( Sept 25th Frid )
Well, here we are again, at last, at the end of a difficult week. I think I left you with Ella having a cold? Ummmmmm! What a cold. She developed pneumonia, an ear infection and other ‘ nasties’ …..all of which complicated her little life. We are here anyway, and I can tell you that she is much, much better and is beginning to sit up and take notice again.
We have had a very busy week for visitors too, as you could expect. Little brothers, Aunties, Uncles, cousins and friends have all been, to help cheer Ella up. Mummy, Daddy and I have been here all week too. At least 2 of us staying, sometimes 3….it was just easier than traipsing all the way home, only to turn around and come back the next day. Although having said that, we have each made a flying visit for the night, to ‘refresh’ suitcases and Sally went home last night, to see Sam, and is coming back tomorrow. We have decided, that for the time being, we need to have 2 of us here again. What would we do without Rachael and Reg to hold the fort at home?
There have been lots of bright moments this week, as well as serious ones. Naturally, a lot of them have been involved with food….you know us. Like the time Sally and I went along to McDonalds for breakfast, with a list as long as your arm, and then ‘sneaked’ it into the unit. Of course there isn’t much sneaking! Ella’s angels are in and out of the room all the time, and you can’t exactly disguise that McD’s smell, can you? Ella had a tiny taste of everything on the menu, so it was worth every moment. In fact, there have been quite a number of McD’s visits, now that we have found the way, through the hospital. This complete site is so huge, that you can walk along a central corridor, going through all the different departments, both children’s and adults, and end up half a mile later at McD’s on Oxford Rd!
What else have we done? Oh yes….had a ‘heated debate’ with the Head Teacher, of the school here, about the provision for Ella. It is difficult, we know that, working within the constraints of a tight budget, but there are ways of saying that without causing offence! Oh, and Ella made cakes yesterday, with Liz (teacher), who has turned out to be good friends with Ann ( cookery teacher from Pendlebury? ) and between them they have come up with some recipes to make in the microwave. So, that was a first for us all….microwaved fairy cakes. They were good, too.
I shared the dormitory with Jackson’s Mum last night. Both families are long stay, and we are next door neighbours on the unit, so it seems very sensible for us to share the dorm just between us. We watched the dancing, then it was a quick read and lights out. ZZZZZZZZZZZZZ.
It’s 6.30am right now, on Sat morning. I took over from Damian at 4.00am and since then Ella has been quite settled. The lockout time on the button has been put back to 30mins, for the time being, so she is more wakeful at times, waiting for it to be pushed!
Anyway, lots of love from us all here. Thanks, as ever, for your support and loving prayers.
Ella, Damian and Annette.xxx
PS My flowers are so beautiful Kate and Stephen. They really have cheered me up….not to mention the dorm!xx
PPS Hi to Martin and all our friends at AMC. Sorry I didn’t get back to you, Martin, I’ll definitely catch up with you this week. What’s it like to be back in harness?x
PPPS Big thanks to Auntie Andrea for taking ‘Bumbs’ for his hairdo. Did the lady stuff a cushion with his fleece? xx

2009-09-18T13:25:00.000-07:00

Days 223,224 (Thurs and Frid 17th,18th Sept)
Hello again from us here. I’ve decided to do a double whammy tonight and include our news from both days. Actually I was really tired last night and fell asleep quite early. It was perhaps a good job, because after that we had a very wakeful night indeed, with Ella having the snuffles and earache.
Yesterday though we had a trip out to find ‘the other’ coffee shop. Andrea took us and Amy ( another little girl on the unit). Amy has been that way before with her Dad, so she was able to show us the route. I think that was just about the most exciting thing for yesterday. We were too late for physio because Ella was very sleepy, and when her teacher came Ella had a very short lesson……..more zzzzzzzzzzzzzzzzzzzzzzz’s.
Today has followed much the same pattern, with Ella tired and full of cold. She has kept me very busy, in between sleeps, but I did get a short break when Linda arrived to be with us for an hour or so. I took the opportunity to go down to the coffee shop. Ella trusts Linda now, so it is fine to leave her for a short while. When I got back we washed her and got her up, and who should walk in…..Reg. He brought Ella some more Sylvanian family, so that made a welcome distraction.
It wasn’t long before Liz ( teacher) arrived and Ella joined in her literacy lesson. She didn’t really want to ( Ella that is) but we got there in the end. The same thing happened today as well. We just have to work around all the reasons Ella gives, as to why she can’t join in, and give masses of praise when she does.
We had a visit from the ENT Dr today, who came to look at Ella’s ear. When he came back later to check on her he had a bar of chocolate in his pocket for her. She was asleep and missed the moment, but I thought how kind that was to remember her?
At the moment I’m watching ‘Strictly’ and writing to you….Ella is asleep, so it seems a good time to take a few minutes out.
Night night and lots of love to everyone. We send all our usual thanks for your support and loving prayers.
Ella and Annette.xx

2009-09-17T05:25:00.001-07:00

Day +222 ( Weds Sept 16th)
Hi. Here we are again on Weds evening. Sally and I have had our change over day and she is safely home in Southport. I know from what she has told me that Ella has had good days since I left last Saturday. I also know that she has made the most delicious cheese cake, with Sally and the OT,s. It is very professional looking and tastes fab too.
The last few days in Southport have been very busy…..I’ve been staying at Rachael’s to help her out. It’s hectic all the time with four little ones. It’s hectic even when they’re all out at school or nursery! But today really took the biscuit. I hardly know where to begin, except to say that a fine toothed comb was involved and all of us had to be done!! It was a relief to be back in Manchester, for a little peace and quiet. ( in 30yrs of being a Mum, and even longer of being a teacher, I have never been so flabbergahasted! To add insult to injury the Hotpoint man arrived in the middle of the mayhem. Oh misery…..).
Anyway, back to Ella. We have spent a few happy hours watching TV….The Hairy Bikers and Masterchef and now we are both tired out. Ella has been asleep for quite a while actually and I’m just about ready to lie down. I’m full of cheesecake and tea, so I think I should stop right now before another slice slides down.
I know that Ella has had a really quiet day today, she hasn’t felt up to joining in. I think an increase in certain medications has knocked her out. So fingers crossed that she will be back on form tomorrow, and ready to enjoy everything that’s planned for her.
Night night from both of us here. We send you all lots of love and thanks, as usual, for your loving support and prayers.
Ella and Annette.xx
PS Thankyou so much to the Waites for Ella’s butterfly. She is now flying high, from the hoist on the ceiling.x
PPS Hello to everyone at OLOL. Hope the beginning of term is going well and that all Ella’s friends have settled into their new Classes.x

2009-09-11T14:38:00.000-07:00

Day +217 (Frid 11th Sept)
Welcome one and all, although I think you must all still be on holiday. Where are you? We are missing your news!
We had another very good night, with plenty of sleep in between busy times. Again we had quite an early start today….this time with a continental breakfast, so there!! Ella wanted me to go down to the canteen ( note the change of title ) to get something for us to eat, and then smuggle it back in. Naturally I obeyed and came back with an egg butty ( very French ) a croissant, a bottle of milk and the newspaper. By the time I had been to the pantry to get a plate Ella had opened the milk and was sat in bed with a very ‘pink’ face and white moustache. It was very funny and we both had to laugh.
We were up and ready for Emily, but just as she walked in we had an unexpected visit from Uncle Gav, Dianne and Ethan. They had been to Lego Land and brought Ella a pink set back. Emily bowed out gracefully ( she came back later ) and a happy hour was spent making lego houses and figures.
Today Ella was really disappointed not to get off the unit and go out for our daily walk. There has been a real shortage of staff both on the unit and in physio, so we had to do with just a short visit here from Ali (physio). Mind you Ella was able to show off her new skill! Walking without holding hands……Nurse Ali and I couldn’t believe our eyes when Ella took off from the bathroom straight to her chariot in the bedroom, this morning. I was left behind trying to keep up, pushing the lines. A lovely moment.
We did have a little push out to see Jackson, he lives in the room next door. Ella likes to keep a check on him and they share sweets or cakes. Then we went along to Amy’s hideout down the corridor to take her a DVD. Then at last Ella was tired and she settled down in bed for a sleep about 7.30pm and has been quite settled since. In fact it is 10.30pm now and I’m just about to watch ‘Rossy’ …..that’s if the signal stays strong enough.
So, night night from us and we send our love and usual thanks for all your support and prayers.
Ella and Annettexx
PS Hope all you Cold Play fans out there enjoy the concert tomorrow.x

2009-09-10T14:10:00.000-07:00

Day +216 (Thurs 10th Sept)
Hi everyone. Hope you have all had a good day, as we have here! The sun has shone and we have filled our day with activities!
Ella had a good night with Kirsty looking after her every need, which meant that I slept too. What a difference it makes when you are well rested. Having said that, we had to peel Ella off her bed to get her into the bath this morning. A bit of bribery was needed, but she was all washed and ready by the time Emily came at 11.00am. In fact, Ella sat out in the chariot for her lesson today, which made it much easier for her to write when she needed to. She is really growing in confidence as each day goes by and I’m sure it won’t be long before she is reading independently again.
Reg arrived just as they finished and he brought with him all the makings of wraps and salad…..which Ella helped to make. Before we knew it Liz arrived ( teacher) to do some maths. Ummm….that didn’t go down too well. Ella was flagging a little, but we managed. Then it was straight down to physio for a long walk and a game of ‘hanging monkeys’. I think by the end of the 2nd game Ella wanted to throw the monkeys through the nearest window…..she has to stand every time it’s her turn and she’s not too keen on that. But once again we got to the end and then headed to the shop for some treats.
Our last activity was a real act of defiance. We made window decorations with Lorraine( play specialist) AND stuck them on the window!! I heard from Nicola, who lives next door to us on the unit, that she has been asked to de-clutter their room, so we were wandering if we would be next…..it will need to be a brave person who asks us all to do that!
Right now Ella is asleep and I am watching TV. Hoorah! Reg worked his magic on the ariel and we are back in business. We heard more TV news today….we may be getting our TVs in a few weeks time. I’m not going to hold my breath, but you never know….Santa may have them hidden somewhere?
I haven’t got any photos for you today but I hope you liked yesterdays? I’ll see what I can do tomorrow.
One last piece of news….going back to bathtime today. Ella had 2 bath bombs in there with her. A yellow one and a pink one, which managed to weld themselves to the bottom of the bath. I have been praying all day that the mess would go un noticed, until I could get time to clean it off. Anyway, it’s off….. we can all sleep with a clear conscience now.
Night night from we two.
Lots of love and thanks for all your prayers and loving support.
Ella and Annettexx

2009-09-09T14:30:00.001-07:00

Day + 215 ( Weds 9th Sept )
Hi. Sorry that it has been so long since we last spoke to you but I have been back in Southport for a few days. Anyway I’m back now so we can catch up on news for the next few days. I thought I’d give you an update on the new Uggs…..they arrived here on Friday. Ella is delighted with them and so is Dr Wynn. He took a photo of them to show his daughter!
I know that Ella has had a few comfortable days. Getting used to the increased ‘lock out’ time on her pain control has been difficult at times, but she is getting there slowly. Her body clock is programmed to having certain things at certain times, and undoing that is very challenging for her. She is being an absolute star though, as usual, although it doesn’t always feel that way in the early hours of the morning.
There have been great discussions about how to deal with the GVH. Dr Wynn and his team have decided that they are going to use thalidomide to combat the symptoms, starting today. There has been a lot of positive news about using this drug in other transplant centres, including Great Ormond St.
When I arrived today Rachael and Sophie had already settled in and Sally had left for a well earned few days rest. Ella was delighted to see her little cousin of course. She has begun to chatter now, in English rather than ‘Double Dutch’ which Ella hasn’t heard before. Ella was looking forward to feeding her as well, but Sophie had other ideas about that. She wanted to sit on the bed and play at being a ‘big girl’ rather than be the baby. Still, she made us all laugh when she managed to balance Ella’s new bath toy on her head and smile for the camera at the same time !!
When they had left for home it was time for us to go down to physio, so Andrea took us along. Ella worked really hard again, with her standing and walking. In fact, as a big treat she was allowed to take a look at the new hydro therapy pool, which was being tried out today by some of the staff. I don’t think they were too pleased at being watched, but we really enjoyed it…..it was a real change for Ella! We had a short trip out later on as well, thanks to Andrea. It makes such a difference to Ella’s day when she can get off the unit and have look around the place. We walked down to the entrance to sniff the fresh air….although we can’t go outside……then we made our way back via the restaurant.
( more money!!!!!!!!!!!) We can’t go in there together either, but at least we can sniff that too.
Right now the night staff have taken over and Andrea and her team have gone home. They all work so hard to make the children comfortable and loved. Ella loves them all to bits and so do we!!!
I’m writing while Ella is asleep. She crashed about 7.30pm tonight, leaving me to watch Billy Elliot on my own. Actually that probably wasn’t a bad thing, as the language is rather blue. (I love the film though, don’t you? Especially when he makes that giant leap at the end… it always makes me cry.)
I’m going to finish off for tonight and find my PJ’s. For some reason I’m not tired yet, so I may even watch another film. I can’t watch TV …….there isn’t a signal. Still, Reg is coming tomorrow so maybe he can sort it out for us.
Night night then to everyone and lots of love. We send you our thanks for all your prayers and loving support.
Ella and Annette xx
PS Hi Sue, thanks for your message. Glad to hear you had a super holiday. Missing you too, but I know that 6N are in the very best hands.x

2009-09-03T14:22:00.000-07:00

Day +209 ( Thurs 3rd Sept)
Here we are again….in dark, cold and rainy Manchester. How the nights are drawing in? It really is like the North Pole here. The rain batters down on the atrium roofing and we can hear it, even in the unit.
Just a short letter tonight about our very good day. Ella has worked really hard at her school work, both with Emily this morning and with her new teacher Liz, this afternoon. Liz came to do a short assessment of where Ella is up to, and when she comes back tomorrow afternoon she will have some ‘proper’ work to do. Emily concentrated on Ella doing some reading today and she was really pleased with Ella’s response.
We went down to physio this afternoon too, after a couple of false starts. Today, Ella wore her UGG boots ( last years’ model) to help her to stand more steadily, and they did the trick. She was able to stand at the table for a good 5 mins to play a game with me, which was great to see. We topped that off with a quick visit to the shop again and then back for a snooze again.
I have got something to look forward to tomorrow……Ella is going to wash my hair. I sort of promised her that she could do it while she was having hers done today. We ran out of time today, so I think tomorrow will be ‘d-day’. I’ve been trying to work out the best way to go about it, how to fit us all in the bathroom, do the job and not end up with us all soaked. Still, it will be fun what ever happens.
Ella is sleeping peacefully, the night staff have taken over and I am watching telly and writing. It’s great to be sat here actually WATCHING a real programme!!!! I know that we should be able to entertain ourselves, like they did in ‘the old days’ before TV, but it’s such a relief to have a ‘grown up’ distraction whilst Ella sleeps.
I’m going to finish now and send you lots of love from us here, and all our thanks for your prayers and support. We haven’t heard much news from you lately. Don’t forget us will you?
Ella and Annette.xx

2009-09-02T14:31:00.001-07:00

Day +208 (Weds 2nd Sept)
Hi and welcome back to us here. It is around 9.30pm and guess what? I’m watching telly!!! Admittedly the picture is breaking up, but nevertheless it beats a magnolia wall any time. Actually the picture has been good all day, but tonight the monsoon season has begun here and I think that has a lot to do with it. Anyway, on to our news.
We have had a very good day! We had a busy night, with what seemed like no sleep at all, but we survived and were still smiling at the end of it. In fact Ella was in the bath at 10.30am, with Emily here as well ( teaching assistant) ready to do some work, when Ella was back in bed. She did some writing and listened to a couple of stories…..slow beginnings, but after many weeks of not feeling up to joining in she did very well. I made myself scarce and let Emily take over for half an hour. I know Ella would have looked for sympathy if I had stayed. Tomorrow….more writing and a little reading.
Auntie Margaret and Reggie arrived at lunch time, just in time for Ella to direct operations about the wraps she was making for their lunch. ( I’d popped to Tesco while Emily was in). She really is in her element again. As soon as that pinny goes on she steps up a gear!
Ella couldn’t wait to give Reg his birthday presents, even though they are a day early, and of course he made a big fuss about opening them. As you can see from the photos….smiles all round.
We all went down to physio after lunch. Ella wasn’t too impressed with the exercise, but her loyal and devoted fan club cheered her on every time she headed the ball on the Wii. We made a quick escape to the shop for a few treats and then back to have a well earned snooze.
Dr Wynn came just as Ella’s tea arrived and just as she was sat on the potty. ( we are excellent multi taskers aren’t we girls) and said he is pleased with her yet again. They are going to increase the ‘lock out’ time on her PCA to an hour…he is very pleased with how the pain relief is working at the moment. Ella chatted to him about all kinds of things, including food , and then they got onto his children and then discussed her new UGG boots…..which Mummy has bought today. He even checked out the photo of them on my phone! He offered to take Ella down to physio tomorrow for a game on the Wii. He’s bitten off a lot if they have a bowling match.
I’m going to finish now for the night and get this posted off. My early night last night didn’t happen and if I carry on much longer it won’t tonight either will it?
So, night night to everyone, lots of love and our usual thanks for all your support and loving prayers.
Ella and Annettexx
PS We hope you all have a really good day as you get back to school. Special love to all my friends at St John’s, as you begin a new year. It seems very strange not to be there too.x

2009-09-02T12:48:00.000-07:00

Hi, photos promised from Tuesday's cake making!

2009-09-01T13:33:00.000-07:00

Day 207 ( Sept 1st Tues )
Hi, we are here again, ready to tell our latest news from Manchester. Hope you all had a really fab long weekend and that work wasn’t too much of a shock!!
As you know Daddy has been here for a couple of nights, followed by Sally on Sunday and Monday and now I’ve arrived back until the end of the week. Honestly, I just don’t know how the weeks fly by without us even noticing sometimes.
I know that Ella has had a comfortable weekend. She has been quietly watching films (on the new TV screen) and Daddy brought the Wii back, but unfortunately he couldn’t get it tuned in….so there was no sound or colour on the games. Mummy tried too, with no luck, so I don’t think I’ll be any better, do you? In herself Ella has been a lot more cheerful of late, but she still has the rash from last week, so she has restarted one of the anti-rejection drugs to see if that will sort the problem out.
I’ve put some snaps on for you to enjoy. The first 2 are from last week actually, when Ella went along to work with the OT in their d’part. She really enjoyed it and was looking forward sooooo much to going again today, to make cheesecake. Of course there was a change of plan, things are never that straight forward are they, and Joanne ended up coming in here to make cornflake cakes instead. Ella was disappointed to begin with, but Sam was here too and that eased the situation a lot. They had a super time together….Ella being the real big sister. I would love to put captions to the photos, but I guess you can add your own, the looks on their faces say it all don’t they?
I’m hoping the teachers start again very soon. Ella is ready for some really positive distractions now. There are only so many times you can make cakes!!
Sally and Sam left just before teatime and now it is just after 9.00pm. Ella is fast asleep and I’m going to go along shortly to buy a cuppa and then settle down for some sleep…..I hope. So we will speak tomorrow and let you know how we coped with all Weds adventures!!
Nite nite and lots of love to everyone. Thankyou for your loving prayers and support, as always.
Ella and Annette.xx
PS A special hello to Libby, Hannah and Grace. It was great to see you on Sunday. Did you get your new shoes?x
PPS Reg and Auntie Margaret are coming tomorrow with an ariel for the TV ( thanks Reggie) so we are hoping Reg can work his magic and get it tuned in.

2009-09-01T12:05:00.000-07:00

1st September.....some snaps from my cookery session last Weds!!! We made peppermint creams.

Ellax

2009-08-27T14:49:00.000-07:00

Day +203 ( Thurs 27th)
Hi and welcome back to us here. We have had a very successful day again…hope you have too.
Ella slept well during the night, with just the usual waking times to have one of her 8 pillows adjusted. Yes 8!!!!!!! We just buy the cheap, soft squashy ones from Tesco, and then Ella can make a nest with them. They are always in the wash of course, but as long as they don’t go in the dryer too they are ok.
We were expecting Linda, from the Rainbow Trust this morning at 11.00am, so Ella wanted to have a bath before she came and be all spruced up ready. The bath was another success….but very relaxing. So much so that Ella had given her all and fell asleep for some of Linda’s visit. They did make some nice things together though and Ella enjoyed it.Next on the activity list was a visit to physio, where Ella whooped me at bowling. She scored 6 strikes in a row, and then finished on a strike. We ended the afternoon with a snooze, which wasn’t surprising really.
Sally has taken Sam away for a couple of nights, to Camelot, so there has been a lot of phoning back and forth, to find out how they are going on. I n fact the last call was about 9.30pm and Sam was still up and bouncing around. Ella takes it all in her stride….she is a real star. We celebrated in a different way. We shared a prawn sandwich, a bag of prawn cocktail crisps and a Yorkie. Ella is really funny…..she feeds me the sandwich, but I have to eat all the crusts first, then the filling. It’s really hard to do that without a drink, but we can’t have a hot drink in here, so I always end up with hiccups. Ella, meantime, nibbles carefully on half a prawn and then discards it, in case it gets stuck in her tube!
It’s 10.30pm now and it looks as though Ella has settled for the next hour or so. Her PCA is on ‘lock out’ for 45mins now, so she is going much longer between each infusion. It has worked very well so far, and it means that she isn’t requesting it every 15mins, as she was up to 3 weeks ago.
We’ll say goodnight then, and hopefully speak over the weekend. Daddy is coming tomorrow night and is staying for 2 nights, so I guess it will be Sunday before I’m back. We hope you all have a super holiday weekend.
Night night and lots of love and thanks, for your prayers and support.
Ella and Annette xx
PS We are using bathtime tomorrow as our physio and Ali is bringing along some bathtoys!
PPS I had a 'run in' with the service provider here at the hospital, this morning. Our lovely cleaner, Joan, had to apologise because she didn't have a mop to use...so couldn't mop our room. I saw red of course and made a VERY pointed phone call to complain, and ask why my Grand daughter's room was not being mopped out ?The manager was up here in less than 10mins with new mops, and then when he had gone Joan told me that he had blamed her, because she had told me they didn't have mops to use. He had expected her to just carry on and not say anything. Didn't he think that I would have noticed if the room hadn't been mopped? I can't wait for 'round 2' if the same happens tomorrow!!! Watch this space. This eclipses the TV and food complaints by a mile, don't you think? Just what I need to get my teeth into!x

2009-08-26T14:47:00.000-07:00

Day 202 ( Wed 26th )
Here we are again, after a long week of silence……from us to you anyway. I have been in Southport, with Sally, looking after the troupes back there, while Rachael has been here with Ella. Then Daddy did his usual weekend night, and then Mummy came back on Sunday to take over, until today, and now I’m back! Did you manage to keep track of all that? We struggle sometimes …….especially in the middle of the night, when you wake up and can’t remember where you are!!!!!!
Ella has had a good week though, so that is the main thing isn’t it? She has been much more active and wants to join with all the special things which have been organised for her. She has struggled with a rash, this week. The Drs haven’t got to the bottom of it, but she is having treatment for it, which seems to be helping. We are still waiting for the results of the scope. I know that there has been some cooking going on….with Emily and the OT’s and today something very special happened. Grace came to see her. She was so excited yesterday, when she phoned to tell me. By the time I arrived today they had had their nails painted, had eaten a chocolate fondue and were watching a DVD.
I have got to tell you about another big step forward! On Monday Ella had her first bath!!! Sally rang to tell me, and then later Ella rang and we played the ‘ GUESS WHAT I DID TODAY?’ game. I was really delighted for her and for Sally. The first time she has been in the bath properly for 7 months. I think it only lasted about 2mins, but it was a success, and it obviously gave her lots of confidence for tonight’s bath. Ella has a specially designed bath, with a seat and a board across it….which both take a bit of manoeuvring when you are still attached to your lines, but she had a lovely time tonight and was in there for a good 10mins. I had a good look for bath toys before I came, but the best I could do were some brightly coloured beakers. For tomorrow’s session Joanne suggested a few syringes….great idea. I think I can guess who’s in for soaking can’t you?
I’m going to finish early tonight, or at least try to. Ella is sleeping soundly, so I should take this opportunity while I can, but things keep popping into my mind. For example, I haven’t told you about the meeting last Weds, when everyone concerned with Ella’s care, both now and in the future, had the chance to listen and join in discussion. Andrea and June came along, and they brought Heather and Sam with them. They had a lovely afternoon playing.
So, night night from Ella and me, we’ll speak to you again tomorrow and for now we send you lots of love and thanks, for your special care and concern.
Ella and Annette.xx
PS It was lovely to see you both today, Grace and Sam.
PPS I have decided we have lived long enough without a TV….so I’ve bought one!!!!!!!! We haven’t got an ariel of course, but at least we can watch DVD’S on a proper screen.
PPPS Don’t buy the ‘Hang Man’ game from Tecso….it’s much easier with pencil and paper, trust me!!

2009-08-19T08:37:00.000-07:00

Hi. It's still Weds but I thought you would like to see the latest snaps off the press today. We are in physio and Sam is helping big sister along. Don't worry about the look on Ella's face....it is sheer grit and determination. Ax

2009-08-18T23:37:00.001-07:00

Day +195 ( Weds 19th)
Good morning, it’s 6.00am and all’s well. Ella is sleeping and is actually making little mousy noises, so I guess it must be a good dream. I think we’ve had a good night! We’ve been up a few times, but nothing too bad….just a grumpy Nanna I think! I’ve just been and made myself cuppa………it’s well and truly forbidden, but Kelly turned a blind eye………so I’m sat in heaven sipping a hot, sweet drink.
Ella had another super day yesterday. She did have a very long lie in though, so that by the time we were up and dressed it was 11.00am. We have got a new ‘auxi’ called Letitia….only very young….and she helped us to wash our hair. Ella was delighted, because she was a hairdresser in her former life, so it was a bit like being in the salon. Ella’s hair is sooooo sweet now….it’s really curly. We’ll have to change her name to Topsy.
It has been a very long time since Ella has wanted to read or write on her own, but yesterday morning she sat out in her chair and had just started to copy out some of the ‘Worst Witch’ story into her new book ( Dr Wynn’s b’day pressy). I was ecstatic that she was having ‘a go’ on her own, while I got on with the housework. Of course, just then the door opened and in walked three doctors….all of whom were delighted too….but it broke the spell. By the time they had finished being delighted she was fed up and had put the writing book to one side. Fortunately Muriel arrived to save the day, and we managed between us to keep her out of bed until her afternoon snooze time, 1.00 – 2.00.
We waited and waited for the physio staff to arrive, until eventually Rachel rang down and found that they were not coming, so I decided that another sit out of bed was in order. It didn’t go down very well ( what do you know Nanna?) but it all worked very well in the end. Muriel came again and finished making a card for Jackson, who’s next door. ( Jackson is one of the ‘originals’ from Pendlebury and is back in for a while). Ella wanted to make him a card, so they used her new card making kit! Then, of course, she wanted to deliver it herself, so with Rachel’s help we unplugged her and we walked next door. They were ‘expecting us' and Jackson rushed off with his card and hid….as any 4yr old boy would do. Ella was a little star, and we made it all the way back in one piece, too. Bambi legs !!!! They’ve not been used for a couple of days.
I really felt sorry for the staff, the 2 Rachels and Letitia, yesterday. They were very short staffed, with only the three of them and 7 cubicles to run. When I’m sitting here, in need of a break, and there is no one to sit with Ella for 10mins, I feel really fed up. But yesterday was a nightmare for them, with no one to give them time for a meal break, so they did a long day ( 8.00am/9.00pm) with hardly any time to eat at all. They are real ‘angels’, all of them. I mean, Ella is a full time job on her own….but another 6 added on top must be very hard work. At least I had time off while Muriel was here, and Letitia sat in while I popped out to get some tea. Ella insisted that I should get a pudding too, so she ended up feeding me apple pie and custard….mmmmm!
Mummy’s coming back today, with Sam, and we have got the meeting as well, to discuss future care plans for Ella. I know that Andrea and June are bringing them back, so that will make life much easier.
It’s 7.15am already, and I can hear the Staff changing over for the day, so I’ll get this posted and say bye for now.
Lots of love and as usual all our thanks for your loving support and prayers.
Ella and Annette.xx
PS Hi Sam and Grace. It’s lovely to hear from you again and we look forward, very much ,to seeing you again.xx
PPS Come on Mummy Waite, don’t be trying to fool us. We know you are like the mermaid in ‘Splash’ really.x

2009-08-18T00:25:00.001-07:00

Day +194 ( Tues 18th)
Hi again, and once more it’s early morning….well actually not too early….about 7.00am. Ella and I have had just had a great night. She has fallen back to sleep so I’m taking this chance to catch up.
I left you on Sat morning? The tree of us had a fib morning and afternoon. Ella had a lovely bath and hair wash….all on the bed of course….we listened to music and sang….and then Sally did Ella’s nails. It was lovely, just like old times only better. ( talking of music….Sally has been ‘chewing at the bit’ to get some funky music reloaded onto Ella’s ipod. It was accidentally wiped off a while ago, so we have been managing with Nanna’s CDs from the car. There has been frantic downloading of CD’s …..anything to save us from The Eagles and David Gray….again. )
Damian took over that afternoon, and his Mum came to stay too. They brought Sam back….Sally and Ella were soooooo looking forward to seeing him ( me too of course). They had a little play with Ella’s new toy….hamsters. I guess all the little ones out there will know what I mean. We’d already got the garage, car and a hamster from last weekend, and Damian’s family added to that with the house and play park. Of course as soon as Sam saw it he wanted a hamster too…..I think you can guess where Mummy headed to on Sunday, back in Southport? It’s big and begins with ‘A’?
Sally and I spent Sat. night at home and then headed back here. It breaks Sally’s heart to leave Sam, but Damian couldn’t manage another night and one parent had to be here to sign the consent form, for Ella’s theatre trip the next day! So, off we set again and we had a really good night.
Ella was first on the list for Monday morning, so we were all up and ready by 9.00am……..and I mean ready. Ella insisted on a full wash and brush up, including hair and teeth! I brought her a selection of theatre gowns from the linen store and she choose a fetching ‘rocking horse’ design, and then we waited! The porter and trolly arrived, we began to load Ella onto it….and he had a phone call. Ella was going to be 2nd!!!!!!. He must have seen all our faces, because he scooted off quick and left his trolly here. He was back very quickly actually, and she went in about 11.00am. and was back in bed by 1.30pm. The surgeon met us outside the theatre and said that things are looking better than last time…..what a lift it gives you, to hear news like that. A lift to everyone…..but none more so than to our dear little girl. It really boosts her confidence!
Later in the afternoon, when Ella was properly awake etc, Sally set off back to Southport to spend a couple of much needed days with Sam. There is a multi disciplinary meeting on Weds, here, so she is coming back then and bringing Sam back too……with his hamsters.
That just about brings us to now. Ella and I had a super evening watching HSM and eating sushi ( well Ella was feeding me it) and then we had an early night. When she sleeps peacefully it’s wonderful. Her body is completely relaxed and she stretches out! The physios would be delighted to see her now…….but we’ll see them later this afternoon no doubt.
I’m going to finish now and post this news. I’ll try for new ‘snaps’ today so that you can see how we are getting on.
As usual, all our thanks for your loving prayers and support.
Ella and Annette.xx
PS Hi Janet. Great to hear from you.x
PPS Hi the Waites….lovely to hear your newsx
PPPS Thanks to Andrea and June….I hope you got lots of licks from Bumpy? See you Weds.x
PPPPS Thanks to Reg for holding the fort at home, with Daisy and Bumpy….not always easy when you are working shifts too.xx

2009-08-15T01:21:00.000-07:00

Day +191 (Sat16th)
Good morning and hello from us here in Manchester. It’s around 6.00am and I am writing from our room. I’ve just got here after a night in the dormitory and both Sally and Ella are sound asleep. The night staff have just assured me that they have both had a restful night.
We have come to the end of an eventful week, as you may have guessed by the lack of letters to you. It has been full of ups and downs, but looking back now it has passed very quickly thank goodness, and we are on the way back up. I think we left you with Ella due to go down to theatre? Well that didn’t happen again, because there was a delay in the theatre and they ran out of time. Just as we found out that news we had an emergency in here, when Ella had a seizure. It was very frightening at the time, as the crash team rushed in and took over. Within an hour Ella had been down for a brain scan, Daddy and Auntie Rachael were here and Dr Wynn had come in from home. A further scan, the following morning as well, showed that more than likely Ella had showed a reaction to one of the drugs she has been on since her transplant, and the immediate treatment has been to stop it.
Ella has recovered well from that night. Her eyesight was affected to begin with and she was disorientated, but as the days have gone on she has made a very good recovery and yesterday was our best day for quite a while. We had a visit from Linda, who works with the Rainbow Trust. She came to introduce herself to Ella and us and she stayed for an hour, painting a fan with Ella. Linda will be coming each week now, to add support for Ella, Sam and the whole family…..playing with Ella ( and Sam if he is here) , giving the family ‘time off’ , in fact helping in any way she can. If we lived in this area she would be visiting at home too, but we are out of the area unfortunately. However, the Trust does have a super holiday home, in Northumberland, which we can all go to when Ella comes home. Linda’s visit was topped off with a visit from Kate, who worked on the computer with Ella, designing clothes. It was quite a turn around from three days earlier, with Ella sat up and joining in. We finished the afternoon off with physio!!!! It was a short trip out in the chariot, over the bridge and back, followed by a ‘sit out’ in the big chair. ( I was left behind to remake the bed….but I got these snaps as they went along the walkway facing Ella’s room. You can’t see her very well I’m afraid, but she is in there!!!)
Auntie Margaret is home from Spain, and is staying with Sally for a few days. She and Reg came to see Ella a couple of days ago and she brought some decorated letters spelling ELLABELLA which are now stuck on the door!!! The fan is on the bathroom door and we have got a few ‘adornments’ around the room. It’s beginning to look more child friendly in here…but still no telly. We are relying on DVD’s ,but even they seem to be ‘coming round’ more quickly now, so much so that Mrs Doubtfire is back, after her world cruise!!
Today Daddy is taking over for the night, so Sally and I are coming home …..to do our washing! So watch out Southport….the Eatons are in town!!!
We’ll say bye for now. The pair of them are awake and it’s time to get ‘the show on the road’ once more.
We send you all lots of love and thanks, for your loving prayers and support.
Ella, Sally and Annette.xxx

PS Who thinks the hospital looks like a prison? be honest now!!!!

2009-08-10T21:30:00.000-07:00

Day +185 (Mon)
Hi to everyone. Here we are back again….actually on the very next day. It’s great to be writing on the very next day….if you know what I mean.
Ella and I had a very good night, well as good as you can have in hospital. We both had quite a lot of sleep. In fact I was up and ready for when Dr Wynn did his first round after his short holiday in Scotland. He had just walked in the room, with his entourage, when Ella’s line decided to bleed back, all on its’ own. When she sat up she was in a big, red puddle. He did say he’d come back, but Ella, ever the drama queen, wanted him to stay….so he did. In all the fuss it was only as he was leaving that I noticed the bump on his head. Ali told me later that he had bumped it on the boot of the car, ouch!
All this meant that we had to get Ella up earlier than usual, which all lead to her having a grumpy morning. Even Emily and Muriel couldn’t help. She just wanted to stay in bed and go to sleep……..
Of course we have physio in the afternoon….so we had to be up and about for that. We went down to their department and Ella played on the Wii again, this time she sat on a sort of balance board and had to negotiate rolling balls into holes. She was excellent as well !!
Ella is going down to theatre again tomorrow, to have the scope she missed out on last week. As far as I know she is properly ‘booked in’ as it were, and not in the emergency list. At least we know she will going during the afternoon. Sally is coming back tomorrow, so that is super for both of them…..lots of cuddles all round.
Tonight we watched two of Ella’s favourites, Matilda and Ella ( one of the Princess movies). Needless to say they finished late, so I am now sat here at almost midnight. Ella is fast asleep, but I just know that the second I put my head on the pillow she will wake up. I’ve got everything crossed for a good night.
We will finish now and let you know tomorrow how the ‘scopes went,
Night night to everyone, and as usual our thanks for your loving support and prayers.
Ella and Annette.xx

2009-08-09T14:42:00.001-07:00

Day 184 (Sun 9th)
We are still here…..we haven’t forgotten you all….just had another breathing space that’s all. Lots to tell you though, so I’ll get on with it.
Ella has had a tough week, all in all. Yes the ultra sound did happen last Monday….ready for theatre…but the theatre visit didn’t happen, not until late Wednesday night, and then it was without the ‘scopes. She went down so late that the gastro team had finished for the day. I don’t know!!! What a performance!!!! By this time the canellas had all packed in and it was a matter of her having to go down to have her line done straight away. Rachael was here with Ella and Sally and I were phoning all day Weds, from Southport, to check whether or not she had ‘gone down’. What a relief to hear that she was ‘back up’ at about 10.00pm, plus new working line.
Rachael has had a few days with Ella and we have been looking after the other four rascals! It’s good for us all to have a change around, and it doesn’t do the children any harm either…..all of them! I know that Rachael had been encouraging Ella to join in as much as she was able, not easy with wonky canellas! Meanwhile Sally, the children and I have been to an ‘event’ on Bedford Park….we chatted with the Mayor! We have been to Farmer Ted’s for the day, plus picnic ( thanks Reggie ) and we have built a wigwam! I guess you will all want to know about the wigwam? Well briefly, I promised the kids they could have a paddling pool and Sally promised them they could make a wigwam. They were both supposed to be the ‘let’s stay at home for the day….it’s cheaper’ idea. You know us though….we ended up with the biggest paddling pool and the tallest wigwam in Birkdale. The pool took three of us half an hour, to half fill, and the wigwam took 2 days to finish. Who sat in it after all that effort? Poppy!!!!!!!! ( Rachael and John’s bassett hound ).
Daddy changed over with Rachael yesterday, and I have changed over with him today. It’s all go isn’t it? I wanted to bring Ella a little pool back with me….I have been looking for a blow up baby pool, for her to paddle her feet in. I found one at last in Argos, and Damian blew it up before he left. It’s rather larger than I thought…ummm
It’s round about 10.30pm and my eyes are drooping. Ella’s aren’t….she’s just had a cuppa and half a biscuit dipped in! ( Nanna’s aren’t allowed to have hot drinks in the room don’t forget.) We are going to say bye for now and write more tomorrow. I may even be able to get a few snaps….although Ella has become quite camera shy just lately.
So, night night and as usual all our thanks for your loving support and prayers.
Ella and Annette.xx
PS Belated Happy Birthday to Simon!x
PPS Great to hear all your holiday news….keep it coming.

2009-08-03T01:08:00.001-07:00

Day +177 ( Sun 2nd)
Hi and welcome back. Ella and I are here again. It is very late ( 11.30pm) Sunday night and we are just settling down for a peaceful night I hope.
When I got back today Ella was fast asleep….in fact she missed Daddy going. She woke about 5.00pm after a very sleepy day, and that was the beginning of a very happy evening….one of our best so far. Ella was full of beans and very anxious that I should eat and enjoy myself. We both had a few nibbles at this and that. In the end Ella was asking the nurses if they would please bring something for ‘my Nanna’ to eat. We watched 2 films and had a good chat. Last of all I took Ella’s nail varnish off her toes because she is back in theatre tomorrow.
I think I told you that Ella had a temporary line in her groin? Well unfortunately that packed in on Saturday night when Daddy was here, so she has got canellas all over her at the moment (feet and hands) which have to be replaced tomorrow. Soooooo it’s no drinks after 3.00am. While Ella is ‘under’ they are going to do another ‘scope’ to see how her tummy is getting on and an ultra sound on her neck so it’s important that she has been left for tomorrow, as opposed to rushing to replace just the line today. What a brave little girl she is.
Ella’s hair is growing back thick and fast now………..and…..it’s still quite dark and dare I say it a little bit wavy? She takes great pride at the moment in having it shampooed….with conditioner of course. It’s quite a struggle on the bed with only a small washing up bowl and a cup. BUT you know us girls we can do almost anything almost anywhere, can’t we?
I’m going to finish now and get some zzzzzzzzzz’s in while Ella is asleep, we may have an early start tomorrow.
Night night and lots of love. As usual we send you all our thanks for all your support and loving prayers.
Ella and Annette.xx

2009-07-31T14:37:00.000-07:00

Day +175 ( Frid 31st)
By the time you read this update it will be the 1st of the month, so ‘white rabbits’ to everyone and welcome back to Manchester from Ella and Nanna.
We have had a really good day again today, after a comfortable night. What more can I say? Actually I’d got out of the way of waking every hour or so at home, so that by the time 7.00am came I was completely out for the count. In fact I missed the change over of night staff to day staff, which isn’t like me at all. Ella was awake of course, so I had to pull it together ‘pretty darned quick’, I can tell you!
This morning we tried to have an early start….but it didn’t quite work out as we expected, and it took until 11.00am to get us both washed and dressed. One of the problems was the shower in Ella’s bathroom. We are now allowed to use ‘the facilities’….the health and hygiene person has decided that our germs are ‘friendly family germs’, and only what Ella would come into contact at home anyway. I was quite looking forward to using the bathroom, instead of the dormitory, but no one had warned me that I would need 6 NHS towels to soak up the overflow of water from the shower, as it cascaded down the nice new paintwork, and out under the bathroom door!!! Needless to say a plumber was called…..but didn’t arrive.
Lorraine did arrive though….the play specialist….to work with Ella on a window decoration. They made a butterfly, which is now fluttering across the window which overlooks the outpatients, and faces the ‘top brass’ offices. In fact Sue ( ward manager) arrived just as it had been put up, and loved it, and said that ‘we need more of this sort of thing to brighten the place up’. She was making the comment to right family wasn’t she? Come the end of next week I can see a whole squadron of butterflies up there!
We went down to play on the Wii again this afternoon, which was a success of course, and then we hit the shop, with Ella buying lots of drinks…..’for later Nanna’….
(One of Ella’s favourite things to do is to drink, at the moment. We have to try and keep it under strict control of course, but the shelf in her room looks like a cocktail bar at the moment, with all kinds of soft drinks on there.)
I had to work very hard to keep Ella awake after that, to play with the OT, Liz, who was our next visitor. She did have a snooze later, while I popped out for something to eat, and at last it was bedtime, and we could get down to watching our film!!
‘Angus, Thongs and Perfect Snogging’. Ummmm…. it did come recommended…a little racy in places…. but quite all right really. Not half as bad as the soaps.
And now? She sleeps….following another one page only story! I seem to have the technique in that department.
We are looking forwards to Sam coming tomorrow. (He is coming with Daddy and then I’ll take him home.) We are going to devote some time in the morning to choosing what to play/make/do with him, then we are all ready and waiting! Ella especially asked if he could come….she really misses him, and all the rest of the gang too.
We are going to close now. I’ll catch up again on Sunday.
Night night and wishing you all a lovely weekend. Lots of love and thanks for all your prayers and continued support.
Ella and Annette.xx

2009-07-30T15:43:00.001-07:00

Day +174 ( Thurs 30th July)
Hi again everyone!!!!!!! I bet you thought we had given up didn’t you? WRONG!!!!!!!!We are back……….. I can’t believe that it’s 10 days since I last filled you in, if you’ll excuse the expression. Such a lot has happened in that short time and it would be daft to try to catch up on every detail, so I’ll just give you all the main points shall I?
Rachael has, and still is, recovering very well from her operation. She has been on light duties for a few weeks….so we have been doing a lot of changing over here in order to help her out at home.
Sally has survived ( very well I might add ), a broken engagement, with the help and support of all her family and friends.
I’ve had a horrid cold and have had to stay at home for a few days. No runny noses allowed in here!!!!!!!!

Now, on to the important one …..Ella!
There have been talks and meetings, and meetings and talks, about how best to meet Ella’s needs and we seem to have a winning formula at last.
I told you a few weeks back that her day was going to be more structured and that her self motivation was to be worked on? Well that has begun in earnest now and Ella is responding to it very well. This has been coupled with an overhaul of the pain relief situation …which has always been an issue…..and as she is becoming more confident that she can have the doses when she wants them, they are becoming less frequent. Her little mind is being more and more distracted by positives and she is beginning to enjoy her days again. She has been down to the physio department this week, to play on the sports Wii and yesterday she beat Mummy in bowling and today she beat me! Muriel came in this afternoon to help Ella to draw up a timetable….which is now on the wall, surrounded by cut out butterflies, so that Ella knows what is happening and when, but more importantly what is expected and when. I know that she had a lovely day yesterday, with lots of positives, and today has been the same.
It all has to be FUN though, doesn’t it? Not easy after 7 months in hospital, but we are getting there. She is having masses of encouragement, to reassure her that she is getting better, and it’s beginning to work. We actually did some colouring tonight for the Radio Lollipop competition. The first time in months!!!!!!! It was lovely to see her actually engaged in some thing relaxing.
Dr Wynn has been really delighted at her success. He is away next week, but has promised to send her a postcard from Scotland.
Of course there have been difficult times as well, and this week has seen Ella back in theatre to have her line replaced….yet again. This time the line is a temporary one in her groin, which is making life more complicated in some ways, as you can imagine. But the brave little angel has bounced back and is taking it all in her stride.
I’m going to finish now….it’s very late and Ella is asleep, so I’m going to catch a few winks while I can. She has had a ‘stay up’ tonight to watch a film, which I thought would send her to sleep, but actually had the opposite affect. Then she had cravings for some tinned peaches and pears. (Which she got) and then finally I read her The Gruffaloes’ Child. She was asleep after the 1st page. So much for my story telling!!!!!!!!
Anyway, night night to everyone and as usual we send our love and our continued thanks for all your prayers and support.
Ella and Annette.xx
PS Hope all those of you who are going on holiday soon have a super time…lucky ducks!
PS Hope all those of you who have been on holiday have had a super time…lucky ducks!

2009-07-21T01:49:00.002-07:00

Day +164 (Mon 20th)
Hi and welcome to Manchester.
What can I tell you about today? Ella and I had a night of ups and downs…literally….last night. The result of that has been that Ella has been tired and grumpy.
Dr Wynn popped in early to say that all is well. Certain viruses are down, bloods are ok and as usual the main concern is pain control. We think the pain relief is there….we just need to reassure Ella that it is ok.
She didn’t want to get up and dressed today, but we had our appointment with the physio at 10.30 so we had to make an effort…as you do. Sara and I got her washed and dressed just in time, then it was off to the corridor for a game of skittles. Ella was less than bouncing with joy, but we got there in the end….with a few ‘sit downs’ and plenty of persuasion. She wanted to stay out by the nurses’ station for a while and do some ‘people watching’. Monday mornings are very busy here, as you can imagine, and the distraction worked for a while, but then she became tired and tummy ache took over, so we retired to our room for a snooze. Our precious little girl saw other children, past and present transplant patients, coming and going off the ward….either to clinic, or to go home. She was very brave.
We watched Ben Stiller in the Museum film this afternoon. I thought Ella was asleep but I caught her having a quick peep at it. She is very good at lying absolutely still and pretending to sleep, when actually she is listening to every word and sound….especially if you go to make a move to leave the room! This is one of the reasons why we are pushing to have all her ‘medical talk’ said outside of her hearing. She knows, and sadly understands, far too much. She has staggered one or two of the ‘on call’ Drs at times, by asking for something which little children shouldn’t even know about, let alone worry about.
Daddy brought Sam later this afternoon, for his check up in clinic. He brought Aunty Rachael too! Sam is doing very well and Ella couldn’t wait to give Rachael the picture and chocs. she had made for her. Rachael came armed with 2 pillows from home, to help her be more comfortable, after the operation, while she sleeps. Ummmmm….I think Ella will have different plans about the sleeping bit!
I can’t believe I’m telling you another FB tale, but here we go! I went down to the restaurant at tea time, and had just ordered, when the inevitable alarm started and we were all evacuated. I did a quick call up to Rach and Damian to expect me later…..it was finally an hour later!!!!!! Talk about starving…….
After Daddy and Sam had left we watched Mamma Mia for a while, but I’m afraid the snoozing fairy ‘got’ Ella and I and I have retired gracefully to the dormitory. (There is another lady staying in here too, but I haven’t managed to meet her yet.) I really hope I’m on my own then I can relax a little more and enjoy the chocolate I bought earlier.( it was a reward for standing outside for half an hour earlier. That's fair isn't it?)
Night night and we send you all our thanks for your prayers and support.
Ella, Rachael and Annette.xxx
PS I’m actually sending this on Tues. morning ( but it’s yesterdays’ report….if you know what I mean! I ran out of steam last night.)

2009-07-20T02:01:00.001-07:00

Day +163 ( Sun 19th)
Hi, hope all is well with you? We have had a super day, all in all, with lots of highs and hardly and low times.
Last night was quite a peaceful one…no tummy aches although we were up and down sorting out pillows and rearranging the bed etc. When it came to 10.00am this morning and Ella was still snoozing but nurse Ali and I wanted Ella to be up and about by 10.30am. I know the physios don’t work over the weekend but Nannas do. Sooooooo we got her washed and dressed ( kicking and screaming I may add) and off we went for a walk down the corridor.
I think at this point Ella’s determination took over, because we sat out on the corridor for half an hour, whilst Ella put on her jewels and earrings etc, and then when we were on the way back she had a ride in the big arm chair, before sitting on my knee while her bed was changed.
Ella actually wanted to go back to sleep then, but that’s not how it worked out. We watched a film, then another…….then it was dinner time and she helped me to eat my sandwiches etc. Ella was becoming less engaged as the afternoon wore on, so I decided another walk was in order. This time she was less willing, but we set off anyway, with the bribe of a sit down and not walking so far. As it turned out we were still outside, in the corridor, 3hrs later!
We sat by the door for a while, then of course the machines began to bleep, so out came our industrial extension lead, to plug them back into the mains….I don’t know what the matron would have said about that! ( well, I do actually). We ended up by the nurses’ station, with Ella sat on her ‘throne’ watching all the comings and goings on a lazy Sunday afternoon. By the time 8.00pm came, and the staff were changing over, Ella didn’t want to come back into her room. Typical!! We had to bribe her with all sorts to get her back into bed. I think there will be more of the same tomorrow, with a trip out of her room….to who knows where? I’m sure Dr Wynn will be involved .
It’s quite late now and I’m going to get this posted off…in fact I may even post it tomorrow. My eyes are drooping and Ella has finally given in and fallen asleep.
Night night and all our usual love and thanks for your prayers and support.
Ella and Annette.xx
PS You may be wondering about Auntie Rachael’s arrival? It has been delayed until tomorrow, because of problems at OLOL. An extra pair of hands needed at home!
PPS Hi to all my fellow Stewards at AMC. Thankyou for your thoughts.x

2009-07-18T15:05:00.001-07:00

Day +162 ( Sat 18th July)
Hi to everyone and welcome back to Manchester. Ella and I are here on Saturday evening, about 9.00pm and we are trying to get ourselves settled for the night. At the moment with only a little success.
As you may remember, I have been home for a few days to look after Rachael, and her brood, following her stay in hospital. It has been a very busy time but very enjoyable, I must say. A complete change from being here, having four boisterous monkeys chasing around the place all the time, not to mention school and nursery runs. Rachael has done really well and is up and about, almost as usual. She’s not allowed to do anything strenuous for a while yet, but day to day things she is managing now. Sally is there at present, so we have swapped over again.
When I arrived back this afternoon I caught up on today’s news, from Daddy and the nurses, on how Ella has been today, and all the news was great! She had a super morning which included a big walk almost to the end of the unit. Ella looks a lot better as well, even in the 5 days I’ve not been here.
Last Monday Dr Wynn called a case meeting for everyone involved in Ella’s care to attend and give their input. It was very lively and informative and basically said that Ella’s care needs to be specialised in many ways, to make sure that she is pain free and is able to move about the hospital as much as possible, for example to the restaurant or physio gym, whilst still being on her lines. ( there has been some doubt as to whether or not she is allowed off the unit). Since the meeting, things have been tightened up with regard to Ella’s regime during the day. She now has a timetable to work to……times to be up and dressed by, physio appointments, teaching times etc…..in order to restructure her days and build up her self confidence and self esteem. The gastro surgeon was there too and he is going to have another look into her tummy, probably one day next week. In the meantime he is happy for her to continue with little tastes of what she fancies, as it will encourage her bowel to want to start functioning again.
Since Ella has been ‘encouraged’ not to be a nudist any more the problem of comfortable outfits has come into play. Obviously anything snug around her tummy is completely out of the question, so we have resorted to aged 12/13 yrs t.shirts and shorts to keep her going with for the time being. It has been lovely going out to choose her some nice summery things to wear, although like all 8yr olds (going on 18yr olds ) she still has a lot to grumble about if they’re not just right! Ella is such a dear little girl…. it is increasingly more difficult to be cross with her when she argues back..it must seem to her that she has lost control almost everything in her life at the moment.
It has been Jack’s birthday today, he is now 6yrs. We all had a party at Kid’s Play in Birkdale and I made sure to bring Ella a party bag back with me. Of course it included all the usual ‘boy’stuff in it……sweets, airplane kit, bouncy ball and a whoopee cushion! Nurse Rachel fell for that one, when she came in earlier. It brought a smile to Ella’s face for a while, anyway.
I’m just eating a little bit of feta salad at the moment. I’m not really supposed to in the room, but I guess a cold snack isn’t too much to ask, is it? I’ve just been told that the blinds opening onto the corridor, from all the rooms, have to be left open at all times according to the ‘matron’. Wonderful! I mean they are in and out of the room all the time anyway, and know that we will call them the moment we need them!! It makes one wonder why the rooms were fitted with blinds in the first place, doesn’t it?
On a brighter note I would like to say hello to Janet! Hi there, so glad to hear that you are OK and lots of love and best wishes from us all in your new job!
I am going to close now and do some reading to finish my night off. Ella is fast asleep but the machines are beeping so Jo is in and out a lot at the moment. Oh…..spoke too soon….she’s awake. Got to go.
Night night to everyone and we send you lots of love and all our thanks for your loving concern, support and prayers.
Ella and Annette.xx

2009-07-12T14:31:00.000-07:00

Day +156 Sun
Welcome to Manchester. It’s now Sunday evening around 9.45pm and Ella and I are just settling down for the night. I’ll just write you a short up date because as you know Sally and I have been at home, and news from there isn’t half as interesting.
I do know that Damian and Ella had a mixture of highs and lows over the last day. When I got back this afternoon we had a flurry of activity whilst Kirsty tried to get Ella’s lines to stop bleeping. I think they have got it sorted, although Alison….who has just come on duty…..has said that she is coming in shortly to change the lines over. The pressure in them is too high ( something like that anyway ) so the have got the bleeps!
I have just been reading a bedtime story to Ella…….which hasn’t worked….and she is still trying to get comfy. It’s worked for me though, I’m falling asleep!
I took 20mins off at teatime to go to the restaurant. I thought I’d have the roast dinner….chicken and the ‘trimmings’. What a disaster, it was terrible. They have got some suggestion cards in there, so I think I’ll be making a few tomorrow. They have us all over a barrel really, because there is nowhere else to eat.
( I’m off my S. Box now)
I must say a big thank you to all the children from OLOL, who added to Ella’s fabulous butterfly wishes display. It looks lovely in her room here, together with her two other hangings. They have been really admired by everyone who comes in and they have cheered us all up. I’ll take a photo of them for everyone to see tomorrow.
Tomorrow afternoon I’m actually going home for a few days. Rachael is going into hospital tomorrow, so I am going to stay at hers to help out with the children until she is on her feet again. I’ve got a list a mile long on paper, and in my head, of things to remember to do…..so watch this space, I’m bound to forget something.
Anyway, I’ll finish for now and get this posted.
Night night and lots of love and thanks for all your prayers and loving support.
Ella and Annette.xx

2009-07-11T00:55:00.000-07:00

Day +154 +155 Frid./Sat
Good morning to everyone. It’s early Saturday morning….so early that the birthday girls haven’t woken up yet, so I am sat in semi light trying to get this posted before they do. Yesterday was Ella’s of course, and then we begin all over again today with Sally’s.
Ella’s day began yesterday when she was surrounded with balloons when she woke up. Sally had been to the shop across the road at 6.30am to get them, so they were here when she opened her eyes. Then we had the present opening ceremony, which, as you can imagine, took rather a long time. She had all kinds of everything,…. smellies, jewels, games, cushions, lovely books, Sylvanians, makeup, a clock, …..but one of her most favourites was from Dr Wynn, of course. He bought her some super writing, drawing and painting things……so I think we can see some art work in the offing.
By the time the magician arrived at 4.00pm Ella’s room was full of all her adoring fans and we were just waiting for Grace and her mum, Sam. If you remember Grace is Ella’s friend from school. They haven’t met up for a very long time and Ella was really looking forwards to seeing her again. The ward manager had given us the use of a small room at the end of the corridor, so we all trundled off there, where John ( the magician) had set up and where we had put out the party food etc. Ella held Grace’s hand all the way through it…it was lovely….One of the highlights of the afternoon was when John produced the magic wand Ella had made for him ages ago. Do you remember when he came to Pendlebury, to do a show for Ella when she was in isolation? She had made him a wand, which he has kept.
The boys and Sophie were as boisterous as usual and after an hour or so it was time for Ella to ‘retire’ to the calm of her room. When it had all settled down and the family had left for home, Grace and Sam stayed to let the girls have a play. They put makeup on each other and then tattooed each other….all the girly things we girls do to ….fab.
By the time Grace left Ella was zonked, and she fell fast asleep. She’s has a settled night too, so that has been the good end to a very exciting day. Hope you like the photos.
I’m going to close now and then I can fill you in on Sally’s birthday when we get back tomorrow. Sally and I are having a day ( and night ) at home and Daddy is taking over for the next 24hrs.
So, bye bye for now, lots of love to everyone and thanks for all your support and loving prayers as usual.
Ella ( now 8yrs and 1 day) Sally ( now ? and 5hrs) and Annette.xxx
PS They are still asleep and it’s 8.45am! Terrible!

PPS Hope you enjoy the photos....just a few of many....which capture the moment.

2009-07-09T15:23:00.000-07:00

Day +153 Thurs.
Welcome to sunny Manchester, or at least mostly sunny. We have all had a good day, so let’s get on and tell you about it.
I had another night in the dormitory and boy did I sleep. I think it’s the first time for ages that I have slept really well. When I got to Ella’s room about 6.45am they were both fast asleep as well, especially Sally. Nurse Rachel let the cat out of the bag that Sally had been on the computer until the’ late’ early hours….and had only just gone to sleep. Needless to say she was really sleepy when I woke her up about 8.00am. A good cold shower……that’s what she needs!!!!!!!!!!!!
We have been on the 2nd day of our routine to get an early start in the morning. Kirsty rang the physios to see what time they would be here, and we got the answer, 10am. It was all systems go to get Mummy and Ella ready in time, and we made it with seconds to spare.
What a successful visit we had! Our physio today was again very positive with Ella, and before we knew it Ella had got to the edge of the bed and was walking out of the cubicle. She actually made it half way down the corridor, had a little sit and then back in again. It was wonderful to see those bambi legs back in use. THEN she sat out in the big arm chair( the one they brought the other day and she didn’t like ) in the window….looking out at the world and waving to everyone as they went over the bridges. We have a perfect view of the comings and goings in the out patients too, so people watching is fast becoming the new hobby! Ella sat there all day, apart from about hour….when we had a trip out to the restaurant. I don’t know how Dr Wynn managed to miss it again…but he did. Ella’s chin goes down a bit when she realises he isn’t coming, but we are holding out for tomorrow….he’s promised.
Muriel had to go home early today so they didn’t get to finish the cakes off. However another PS came along, and together they finished Mummy’s birthday card. Ella felt tired then(not surprised after such a busy day), so she had a snooze. They are making more cakes tomorrow.
My job this afternoon has been to ‘fill in the gaps’ in the preparations for the birthday treats tomorrow. Last minute panic buying….you know….’the have we got enough’ thing that happens at Christmas and birthdays. Then of course there are the candles to buy! What a lot of choice! I decided on gold and silver letters for some reason, then realised they clash with the High School Musical cake, once I’d got them back. Actually we won’t be able to light them in here anyway….we don’t want another FB incident do we?....
Sally went to our dormitory early tonight to catch up on some sleep. She’s just arrived back so that we start the wrapping! We learnt today that we are sharing tonight, so we didn’t think it fair to start crunching paper and tearing cellotape late in the evening. It’s strange isn’t it, how children can sleep through almost anything and then the minute you finish to sit down, they wake up? Anyway, we have a very large, interesting pile of parcels under the table. We are on balloon blowing up duty, first thing. Sally wants us to have bunches of balloons around the room and on the drip stand for when Ella wakes up. We may not get away with that one unnoticed!
Sally has gone back to the dorm now and I am on duty. Nurse Alison has arrived to sort out some medicines and I am going to finish and try to sleep a little.
Night night and lots of love to everyone. As usual, we send you our thanks for your prayers and loving support.
Ella, Sally and Annette. xxx

2009-07-08T23:16:00.000-07:00

Hi, we thought you would like to see these happy photos of Ella and Muriel before they started to make the stickiest marshmallow cakes in the world. They show the view from Ella's window.....not quite a tree....but a great view of the glass walkways and the outpatients below. (That big cupboard 'thing' beside Ella is the parent bed, which pulls out from the wall.)

E,S,A.x

2009-07-08T13:40:00.000-07:00

Day + 152 Weds
Here we go again. Hello everyone, it is now 8.30pm and all is well. We have come almost to the end of a good day, for everyone.
Reg rang earlier, to tell us that the hospital had been on the news….the opening? Is that right? There have been lots of camera crews around…but we didn’t see any royalty, just lots of ‘suits’.
Ella had another quite peaceful night and so did I….in the dormitory. No strange men tried to bunk in last night, typical! Jean, one of the Family Care team came this morning, and she hadn’t heard about the exploits of the night before. She couldn’t believe that their fool proof plan had failed. Anyway, one good thing has come out of it….we have got two bowls for our cereal, rather than using a mug, as we are at present. She is very ‘on our side’ about the accom. but there is little she can do. She is encouraging us to write a strong letter to the powers that be, to explain the situation. We will!
Dr Wynn came in to Ella early and stated his expectations for today. Up and about early and a trip to the restaurant….his treat. Ella perked up quite a lot, and so that’s what we did. Ella had a super wash, she was dancing on the bed (lay down) to her ipod and really enjoyed doing girly things to get ready. The physios wanted to be here when Ella was getting out of bed, so that they could see her walk a little. It didn’t work out too well to begin with because we were ready, but they couldn’t get to us, as the fire alarm went off and the floor they were on was evacuated. Eventually they turned up and Ella was the star turn….walking to the window, the door and getting into the chariot ready for the off. It’s the first time she has been out of bed for like this for weeks.
By 12.00pm we were ready for the procession to the restaurant. Dr Wynn couldn’t be found, but we set off anyway. The rest. was packed but the ‘waves parted’ for us, machines and all, and we sat at a table. Ella was beside herself with happiness. She had a packet of quavers and a cuppa…….it was soooooooooooo lovely to see. We were down there for about 20mins and than she was ready to leave. Little steps forwards each day. Dr Wynn came later this afternoon and wants to be there tomorrow. I think a quieter time would be better though.
When we got back Ella sat by the window looking out onto the atrium. It’s quite a height, 2 floors up. Then Muriel arrived to make the promised cakes for Ella’s party on Friday, so all in all she had quite a long session out in the chariot. Just as all this was going on Martin arrived. Ella, of course, was snookered by now….and snoozed all the time he was here……but I think she was forgiven, she had such a busy morning. We had a good chat anyway, and before I knew where we were it was time for him to go.
Sally has been at home this afternoon for Sam’s Parents’ Evening at school and then she was going to help Rachael to take them all to their swimming lessons. Ummm, best of luck. I think she will be back soon.
Only one more thing to tell you, the blind in our room has jammed half way across. This may not sound like a major catastrophic event to you, but it may be to us. You see, the parent bed is right in front of the window and is on full view to all the hospital! Oh, the chaps have arrived to fix it, right now.
It’s done!!!! Thank goodness.
Well we are going to say night night now, and send you all our love and thanks for loving prayers and support, as usual.
Ella, Sally and Annette.xxx

2009-07-07T11:58:00.000-07:00

Day +151 Tues
Hi everyone. Here we are on Tuesday afternoon and I’m starting early in a quiet 5mins, while Ella has a snooze.
We had a good night last night actually. Ella was awake a few times but no serious tummy ache. When Dr Wynn came he was pleased with her and has challenged her to be out of bed today, and even to have a short trip around the hospital….maybe to the restaurant….with us. Also he was asking if anybody had a birthday this week. Of course Ella pretended not to know, so he then challenged her to write down all our family birthdays before he comes again! We haven’t done that yet, but we have been out of bed and sat on Mummy’s knee for a while, and we have done a few leg exercises with the physios. She didn’t want to sit in ‘the chair’ so they utterly surprised her by operating her bed into almost a chair position. There is no escape!
Muriel came at the end of their session to work on a birthday card for Mummy, so that seemed to be a good time for Sally to go for her run and me to do my walk. The park is only at the end of the road and Sally was there in no time at all. There is a Nero coffee shop opposite, so while she was lapping the park I popped in there and got us 2 coffees so that we could recover on a park bench. ( actually I can’t tell a lie…..I didn’t need to sit down as I’d only just walked from the hospital. ) Needless to say it started to rain at this point, but it didn’t matter. We enjoyed the fresh air. Then we began ‘people watching’ and soon homed in to some very strange men lurking around ( well they seemed to be lurking). In fact one was relieving himself, in full view of everyone. Don’t worry….Sally will always have her matronly chaperone with her, and the park is really busy with cyclists, joggers and plenty of walkers using it as a cut through, onto Oxford Rd.
I must tell you about the latest night time adventure! As you know Sally went to the ‘dormitory’ for the night and had settled down to sleep when the door was unlocked, and in walked an auxiliary nurse with a man. Sally pretended to be asleep at first, but then the nurse asked Sally if she was a lady or a man, because she was looking for accom. for the man and had heard there was a spare bed in our room!!!!!! They beat a hasty retreat when she realised she was in the wrong room, but it was VERY wrong for that mishap to happen. When the Family Care lady came, to see how we are getting on, she was just as angry and set off to find the culprit, because there is supposed to be a strict protocol about keeping the women’s room keys and the men’s room keys separate! The outcome of it has been that the locks have all been changed. Honestly, what a ‘to do’!!! The thing is though, if there was proper accom in the first place this sort of thing wouldn’t happen, and couples/families/friends would be able to share in peace.
Well it is now 8.00pm and we are climbing the walls in one way and another. Sally because she is as stiff as a poker, me because I ‘m trying to connect us to a TV channel through the computer and it won’t accept the password and Ella because she is too hot. Anyway Radio Lollipop has just been to leave us some pictures to colour in…it’s great to see that they have moved over to the new site too. They do such a lot of voluntary good work don’t they?
We are going to finish now for today and then Sally can be horizontal! I expect she will feel less stiff tomorrow? But what do they say? No pain,no gain?
Night night, lots of love and thanks for your prayers and loving concern.
Ella, Sally and Annette.xxx

2009-07-06T15:28:00.000-07:00

Day + 147
Hi everyone, it’s Monday evening now and all is peace and quiet. It hasn’t been like this all day, so we are enjoying the calm after the storm.
Yesterday Sally and Reg arrived back with all the bits and pieces we needed, including the chariot, which is now stabled in the bathroom. Ella and I had a good day, quiet and very peaceful. Ella had a good start with a wash and then nurse Rachel chose her an outfit for the day….shorts and t shirt! I know Sally was really pleased to see her dressed. After Reg had left for home Sally settled down to spend the night with Ella in her room and I had the night ‘off’, in the dormitory. I needn’t have worried about having company….no other ladies appeared…..which worried me then, because I was on my own. The room
isn’t really off a main corridor, and while it is nice to have a bit of ‘me time’ for a while, it is a little bit strange being in there, too. (Come back Birmingham Parents Accom.) Anyway I did sleep. When I got back to the cubicle at 6.30 they were both fast asleep and stayed that way until 9.00!
Ella had a slow start today and didn’t really want a ‘wash and brush up’ today. We tried to persuade her that she would enjoy sitting in the bath, which is really cute, with a little seat just the right height. We were almost there….. when nurse Kirsty pointed out that there isn’t a plug….apparently for health and safety reasons! I’m speechless. We had a chat with Dr Wynn this morning, about our concerns that Ella is not motivated to do anything much, so he said he would get straight on to it today, and he has organised a meeting for everyone on Thurs. to discuss how to tackle it better. She needs her self esteem boosting and special understanding, by experienced key workers, to help her to gain her confidence back again.
We had told Kirsty that Ella had been given a cumfy chair last week, so she got on to the physios here and before we could turn around they were at the door with a super deluxe model….a water chair….for her to try. Sally and I bowed out of this one and after some cajoling they got her into it, if only for a short time. All the BMU windows over look the main atrium and out patients d’part, and we would really like Ella to be able to look out and see what is going on down there. Maybe tomorrow we can aspire to that…the physios are coming twice a day from now on, and Muriel, the play specialist too. Dr Wynn told us that Ella can go out into the rest of the hospital to have a look round ( with a nurse of course to sort out the lines) any time she wants to, so we are looking forwards to that one day.
Grandma and Grandad have been to visit this afternoon. They brought Ella some really nice pressies from their holidays, and she enjoyed looking at those. Unfortunately she’s had tummy ache today and hasn’t felt much like joining in.
When Chris and John got here Sally decided it was a good time to start her new hobby….running, well jogging. There is a lovely park not far from the hospital, so fair doooo’s, she got changed into all the gear, and off she set. She must have sprinted there and back, because she was back really quickly. Sally has challenged me to buy some trainers too….maybe, maybe not. We have decided, though, that we are going to have at least half an hour each day outside the hospital walls. So tomorrow could see Sally jogging and I power walking round the park, ( can you power walk in flip flops?) maybe while Muriel is here with Ella.
We have got a big day coming up on Friday. Someone we know is going to be 8yrs old!!! We are organising a special day for her and we have asked if we could use the bigger meeting room, at the end of the corridor, to have a party in. We have got John, the clown from Southport, to come and Rachael is bringing the boys. Grace, Ella’s friend from school is coming and of course Daddy. I guess she will have some VIP’S visiting in the morning too. I think there will be lots of noise up here that day….blow the rules eh? Then we start again on Saturday….because someone, else not very far away, has a birthday on that day!! Talk about expense………………….
When I asked Sally what she wanted she muttered something about ‘Take That’ coming to sing for her. I can do lots of things, but that is one miracle too many, even for me. Unless anyone has got any contacts out there?
Well, we are going to finish now and get this posted off. I am still so ‘made up’ that we can actually keep in touch again, I hardly dare try out the dongle, just in case I have to go to sleep sulking. It’s my turn to stay up with the princess…so far so good. I am sat beside her and she knows I’m here. She keeps doing a quick peep! I just know that the moment I switch off and head for the bed she will wake up. Fingers crossed that she will have another settled night, although at the rate the bleeping bleepers are going off, I think both of us will be bleeping fed up by morning. ( I think one of them has got an air lock or something.)
Night night anyway, and lots of love to everyone, with all our thanks for your loving support and prayers.
Ella. Sally and Annette.xxx
PS Who thinks Sally will be stiff in the morning?
PPS Who thinks Nanna will be stiff on Weds, morning?
PPPS Rumour has it that some TV’s have appeared in the unit! MAYBE there is some light at the end of the tunnel and we will have something else to look at, other than the bare walls soon?
PPPPS I promise some photos soon of the new room etc

2009-07-05T06:44:00.001-07:00

Day +147
Good morning from Manchester. Actually I think it is day 148 because it is now Sunday! I tried the connection last night from here and it DIDN’T work. However many prayers later here we are and we have lift off.
Ella had a ‘busy’ night with Daddy on Saturday and as a result the Dr put the pain relief up for yesterday. When I took over at teatime things began to settle down again and we had a quiet night on the whole. We only woke up for pillow re –arranging and drinks, which was a great improvement.
When we got up this morning nurse Rachel sat with Ella whilst I went to have a shower and a cup of tea. (I’m afraid the days of drinks etc in the cubicle are over….in fact we are not allowed to even use the bathroom in here. Last night I went to the allotted ‘facility’ for parents, only to find a big puddle on the floor in there, so guess what? I was very disobedient and used the bathroom in here. I can see very little point in carrying ‘anything’ back into here. It seems to defeat the object really! ) When I got back we decided between us all that Ella should have a good wash too and get dressed. Sooooo a very reluctant princess was washed and dressed in shorts and t-shirt and sat out on Rachel’s knee, whilst Andrea and I changed the bed. We also decided that Ella needs to roll off her favoured side onto her back and then the other side a lot more regularly. Her skin is marking very easily at present and we don’t want her to get sore. It hasn’t gone down very well, and we now have a very sulky princess….in fact I have taken the flack for it completely. It’s a good job I have broad shoulders eh? I popped down the shop earlier to get some new stickers to start a new chart for when Ella is being really brave. It’s almost full for today already.
We are expecting Mummy and Reg in a little while. They are bringing the chariot back…it has been all over the country. Oh! And some news hot off the press…an air (bouncy castle ) mattress has arrived, so Ella had another sit out on nurse Rachel’s knee whilst that was installed.
So far we have watched Princess Diaries, Mrs Doubtfire, and Grease has just started. Ella isn’t interested at the moment, but we are keeping going. I’m sure she will come round soon.
We are going to close now and send lots of love to everyone, and all our thanks for your loving prayers and support. It was good to catch up on your news.
Ella an Annette.xx
PS I’m sending this off earlier in case the connection is poor tonight.
PPS Congrats to you Mrs Robinson, that’s really good news.
PPPS I wondered who was flashing me Martin. We will start practising our raps straight away. The rhythmns can be quite tricky can't they?

2009-07-03T14:53:00.001-07:00

Day +146
Hi there everyone. I’m so excited to say that we are back on line. But where are we you may ask…..? Well we are back in Manchester. We were transferred today, Friday, and arrived back here about 1.00pm. Actually I’m blogging from Southport, because Daddy is staying tonight, which is probably the reason why we have got such a good connection. We have tried every single day to catch up on news…..but here we are now. I’ll fill in some of the details, but forgive me if it is a more sketchy picture than usual.
The last couple of days, (Weds. Thurs.) have been filled with quite extensive tests for Ella….xrays, ultra sounds and MRI. These, together with the tremendous heat, have really put pay to any ‘perky’ days Ella may have had. The heat of course has been tremendous for everyone, but the little children on that unit were really melting….with fans going and windows open all the time. Even though it was all brand new the AC wasn’t up and running. Anyway, we all made the best of it…in fact Ella raised enough energy yesterday to make some cookies with one of her teachers.
Ella’s Drs decided that she should be transferred back today and the ‘Ambulbus’ was booked for 10.00am. Needless to say Sally and I were packing from the night before….trying to shoe-horn all our belongings ( and Ella’s ) into the Puma! We eventually finished this morning with about 20mins to go.
Ella had a really good journey back ‘home’ with Mummy and two of her nurses, and I followed on with the proverbial. What a welcome she had! It was genuine relief and very emotional for we three, and Ella’s angels and Drs, and when Dr Wynn heard she was back he dashed into her room and knelt by her bed to hold her hand. It was lovely to see.
Then it was back to business, as Sarah sorted out all the lines again and got Ella settled for a comfortable night.
Sally and I finally hit Southport at tea time….just in time to take in a curry, sleep and do a quick turn a round. That is after we have sorted out our summer wardrobes. We have definitely got to find some cooler clothes to take back. Not only cooler ….but also clothes that don’t take up any space, that never need washing or ironing and don’t need hanging up or storing in any way. Don’t forget we are back into the Manchester accom. from tomorrow….a shared room with up to 3 other mums and none of the above luxuries. We thought we were really spoiled in Birmingham, but in retrospect if they can do it and provide very comfortable, well run and a well planned haven for families, why can’t Manchester? Why should families have to wait until 2010 for the building to begin? (You’ll be pleased to hear that I’m off my soap box now)
I think we may just spend the day tomorrow with Sam,Jack,Max and Sophie to bring us back to reality with a bump. The Ainsdale show is on of course, so that may be an option. Lets hope the weather is ok.
We are going to say nite nite for now, and send all our love and thanks for your support and loving prayers.
Ella, Sally and Annette.xxx
PS Let us know if you are still there or have you given up on us

2009-07-03T13:12:00.001-07:00

Days +140,141,142 (Sat.Sun.Mon.)
We haven’t forgotten you all….hope you haven’t given up on us? The problem is the dongle!!! We can’t get a connection, so we have been out of contact all over the weekend. At first I thought it was us, but I have been to the ‘dongle shop’ today and the ‘dongle man’ assures me that everyone has been having network problems and it should be ok by tomorrow, Tuesday. Anyway, I’ll keep on writing and when these epistles eventually hit the waves you’ll all have to sit down with a cuppa to catch up.
We had our change over day on Saturday in every sense of the word! We moved into our new room and Daddy came to stay for the night, so we had a change over in that way too.
Firstly the room….it is very nice and light, with a floor length window to look out of, as I have told you. We have managed to fill it already. Over the weekend it was full of people, let alone ‘stuff’. But you know us girls, we don’t travel light. Daddy arrivd in time to do some of the lugging about and Sam joined in too, and by lunch time we were in. Reg then arrived with the chariot and drawers! The chair is in the bathroom and the drawers just about fit in along one wall.
Saturday night Ella was solo with Daddy….I know they had an ‘interesting’ night and when we arrived here on Sunday morning for breakfast he was ready for a shower and a break. Our Saturday night was interesting too….after our romantic dinner for four, Reg and I had a drink in the bar, where we got tangled up with a wedding party, and then in the middle of the night the fire alarms went off. Fortunately we weren’t evacuated…
Sunday saw us going off for the afternoon to the Sea Life centre with Sam. Little Ella looked after Daddy here, but she was settled enough and had lots of treats when we got back. Birmingham is proving to be a really interesting place to visit…with lots of centres of interest, not to mention the shopping. Daddy and Reg left on Sunday teatime and Rachael and Ian arrived. Auntie Rachael did the honours Sunday night….again it was interesting….but not as much as Sally,Sam and Ian’s was. The fire alarm went off in the hotel for real this time….the FB arrived in full force and everyone had to wait outside until it was cleared. Someone had been smoking of course…it really isn’t on, especially when little ones are outside in their pj’s until all hours.
We can beat that today though….we have had the FB up here on the unit. One of the builders cut through a wire and set the alarm off for the hospital. At the same time Rachael had gone down to the restaurant to get us some lunch and was frantically phoning me to see if we had been evacuated. I don’t know…what is it about us and the FB?
We have got lots of family birthdays coming up next month and I needed to get Sophie a card, as hers is on the 1st. Rachael did the honours whilst I went to find a card shop. Where did I end up? The Bull Ring, and in the heat of today as well. It’s very impressive around there, but it was incredibly hot. When I got back Ella and Rachael were melting too….not to mention all the staff. Fans were fanning, windows were wide open and all the children were soooooooooo hot. You can imagine lying in bed in that heat?
On the whole Ella is a little better than when we arrived. The pain control seems to working more smoothly, and she is enjoying her little tastes of food. It’s just difficult to keep a rein on the drinks, especially when it’s hot like this. The gastro Drs are looking to do more tests this week…a barium meal and an MRI scan….. In the meantime the transplant team are checking up on her daily to make sure that all her usual treatments are carrying on as usual. Not to mention our Manchester team, who are checking in every day as well.
We have had a very quiet day today. Kirsty, Ella’s teacher came early and they finished off a butterfly started last week, and from then Ella has just snoozed. Nurse Sam has been in charge today. She is lovely and very experienced. She has tried to get Ella motivated too, but to no avail. It has just been too hot. Anyway, there was a spark of interest when Sam said that Ella would have to get out of bed tomorrow….for a little sit out…and if she is not in charge of the ward tomorrow she may have time to take Ella for a little walk, to see the garden. It is all good motivation, which is what Ella needs right now.
I’m going to finish for tonight. It’s midnight on Monday and I’ll try to get this posted tomorrow. As of this moment there still isn’t a connection.
Night night with lots of love and thanks for all your prayers and loving support.
Ella, Sally and Annette.xxx

2009-06-25T15:31:00.000-07:00

Day +138(Thurs) part2
What a heading eh? But I wanted to keep you updated properly, so here we are on Thus. night now. Ella is fast asleep, at the moment, Sally has gone for an early sleep ( she’ll take over at 4.00am) and I am waiting to meet Rachel….Ella’s nurse for tonight. I’ve just done a quick change act, in the cubicle, into my pj’s before she appears….didn’t want to frighten her. If you remember we can’t fit into the bathroom at night because the chair is in there!!
Ella’s day has been a real mixture of ups and downs. We had a procession to the ‘heart d’part’ at 9.00am….on the bouncy castle….and then when we got back the pain team came to change over the drugs. Things slipped downhill from then as it became apparent that the new idea didn’t suit Ella and she was still in pain. They came back and a new idea was started and that seems to have done the trick. The morphine is still stopped completely but has been taken over by fentanyl this time.
The other major change of course is that Ella has been allowed to have LITTLE tastes of drinks or food. As long as it can be aspirated back through her tube she can taste it. Soooo today she has had 2 tspns of mushroom soup, 3 tspns of tomato soup, 4 tspns of jelly and an assortment of sips of juice. Oh and she sucked a crisp earlier on! It is a real delight to see her little face light up when she isn’t denied a taste. We are going to have to keep the reigns on tightly, but she has realised herself, today, that it is a case of tiny steps!
Sally and I have had a strange day really. Most of it has been spent eating or walking around. There isn’t room in here to swing anything, let alone a cat, so you have to get out for a wander quite often. We have got used to the space back ‘home’ in Manchester, where at least we could revert to our cottage industries if Ella was asleep. Here, however, even the sacred ‘red box’ of goodies is in the bathroom! Sally did have a walk to Tesco earlier this afternoon for essential supplies and for goodies to fit into our posh new shelf in our posh new kitchen. As you can imagine, she staggered back with about 6 bags….it was a lot further on the way back!
Sally had a lovely call today from Kirsty and ‘the Manchester angels.’ She and all the team up there are so special to Ella and of course to us. They are going to try to get down to see her, maybe next week. Watch out Birmingham!! I know that Dr Rob (Wynn) has been asking about her every day and I feel that he would be encouraged if he could see her. There is a special bond between them, even if Ella did only speak in sign language to him, most of the time.
Something really nice happened to me today as well, I went to Church. There is a proper Church here in the hospital, on our floor. You know in some stately houses there is often a chapel? Well here there is one too, which is very traditional to look at, with pews and stained glass. It’s quite amazing, and is shared by all the faiths at some point in the week.
The builders who are working on this unit are on a tight schedule to finish by tomorrow afternoon. In fact they have been working through the night, for the last few. We have been told this is their second deadline….so they have to get their skates on for the big move on Sunday. From what we can see from our room it looks very nice indeed….bright and modern….and nurse Natalie has requested that Ella’s cubicle should have a bathroom, so we’ll have to see. Fingers and toes crossed eh?
Well, it’s 11.15pm and I’m going to finish. Ella has been awake a couple of times for drinks and things, but I am hoping that she will settle now and then I can switch the night light down a little more and have a snooze myself.
Night night, lots of love and thanks for all your prayers and loving support.
Ella, Sally and Annette.xxx

2009-06-25T03:55:00.000-07:00

Day +138 Weds.
Please excuse me putting the day next to the number up above, but we are so mixed up with days this week, it will help me to keep things in order if I write it down. ( what do they say about ‘ladies of a certain age’ and lists?) Actually, it is now first thing on Thurs morning, and I’m on catch up. Sally wanted to use the computer last night and that can be a very long session!
Quickly though back to all the news about Ella. The Dr’s here are beginning to get to grips with all the testing they need to put into action. Some things will be routine and others related to Ella specifically. Today the pain team are coming very early to change the drug completely from morphine to another called ketamine ( wrong spelling sorry) which works in a similar way, but is used to target bowel pain. They seem very confident that this will help Ella and Sally has agreed to take their advice. Secondly we are off to the heart d’part at 9.00 ( if the pain team have finished) for an echo test, following an ECG yesterday. Then I expect the gastro team and transplant team will have something up their sleeve for layer….we’ll wait and see.
Ella has a lovely new mattress….an air one….a bit like a bouncy castle. We had a visit from the ‘skin’ nurse yesterday, and she decided to err on the side of caution with Ella’s skin and order this for her. The steroids make the skin very fragile after a long time so right now she is floating on a pillow of air.
Yesterday was really hot and today looks as though it is going to be the same. We finally moved all our ‘stuff’ into the parents accom. upstairs. It was my first visit yesterday and I have to say it is really beautiful. The whole place has been designed around parents and family who are long stay. The rooms are lovely, and we even had chocolates on the bed to welcome us, not to mention some complimentary toiletries. There is low lighting, fab bathrooms, newly fitted kitchen and laundry together with a lounge, where families and siblings are welcome. Sam said this morning that she thinks it has been refurbished by Marks and Spencers. This isn’t just any parents accom………this is MnS ACCOM!!!!!
We have had lots of visits from the physios, teachers and play specialists….all of whom have had a frosty welcome from Ella so far today. They are coming back later….thank goodness they don’t give in and are experts in sorting out a ‘grumpy old hector’.
I am going to close now until later and get this posted off.
Bye for now, lots of love and thanks for your loving support and prayers.
Ella, Sally and Annette.xxx

2009-06-23T15:20:00.001-07:00

Day +136,137
Here we are again, but this time from our new home…..Birmingham! We are practising for our world tour, you know. There is quite a story to tell, as you may have guessed, so I’d better get on with it.
As you know I came home Sunday night so that Aunty Rachael could do the honours…very nice and a treat for me. I phoned Monday first thing and heard that Ella had been snuggling Rachael all night….eat your heart out Mummy and Nanna! There was no news about Birmingham, so we weren’t going. I’d just started my day properly with a third cup of tea, when Sally phoned…..yes we were going….get back quick! The rest of the day involved lots of coming and going… me to there, Rachael to home, us to Birmingham……but by 9.00pm we were in our new room.
Dr Wynn decided at the last minute that Ella should travel with ICU back up, so the Dr who actually travelled with Ella was from ICU, but one of her own nurses, Sarah, was allowed to travel as well. Much to Ella’s, not to mention our, relief. When the ambulance arrived the ICU team got her all strapped in, with such care and attention, all her medical trappings went in next and finally her ‘team’ including Mummy of course. Me?....I followed on with the old cock linnet!!!
The ambulance was travelling on blue lights so they had well and truly got ahead of me. I didn’t see them again until exit from the M6 when there they were just in front, so they were able to show me the way in to the hospital. Sally said that Ella was laughing her head off when they speeded up and put the sirens on!!
By the time I had found them in the cubicle Ella was in bed and Sarah was handing over her precious parcel to the new team. Sally and I were looking around us in dismay….at this teeny tiny space, without even curtains up at the windows, which looked onto a busy corridor. Sam, Ella’s new nurse for the night, was busy getting to grips with all the drugs etc and Sarah was as anxious as all of us that the hand over should be stress less for Ella. ( It wasn’t that for us, especially Sally, who really was tired and in need of a lot of TLC) Eventually Sarah and the team left, about an hour later, and we were left with 1 chair and a camp bed, which wouldn’t fit in if the chair was in too. I have to say that 2 hours later, when Ella had fallen asleep and we were finally having a cuppa, that we had to laugh at the situation. At times during the night there were 5 of us, all squashed into the smallest space ever…..with an NHS sheet across the window! HYSTERICAL.
That brings us to today, Tuesday. I am now sitting with Ella and she is fast asleep. It’s 10.45pm and Sally is having a sleep in our hotel room…yes you read it properly….hotel room! But first news of Ella. She has had a super day all in all. She has been settled and calm, and mostly pain free. The ways of doing things here are slightly different, but the care is still expert and we feel in safe hands, and that is the most important thing. There have been visits from various Dr’s…from the gastro team and the transplant team…and they all seem well up to date on Ella’s case. In fact Dr Wynn phoned Sally this morning, as well as the Drs here, to make sure it was all ok. I think some tests are likely tomorrow, now that Ella has had time to settle in.
Now to the hotel. Sally went to speak to the family liaison lady to explain that we couldn’t spend another night like last night and she completely sympathetic! They pay for hotel rooms under special circumstances at the very nearby Thistle, so we were given a room immediately, and then we are moving into the new, very swish parents’ accom on the 3rd floor here, tomorrow. Oh, and Ella’s room had lovely clean curtains up by 9.00am today. The staff are really very nice here, and everyone is so helpful and kind.
Sam is on duty again tonight and she has been telling me that on Sunday….guess what?...we are moving ! Can you believe it? There is building work on the unit at the moment, which we can’t see because of boarding. Anyway, it is a whole new unit with new cubicles etc…so we will be the first to use another state of the art department! We are really giving the NHS a trial run aren’t we?
I’m going to finish now and get this very long blog sent off. There are some photos to post tomorrow but for now, night night and thanks for your prayers and loving support.
Ella, Sally and Annette.xxx
PS Sally is coming back around midnight and then it is my turn to try out the hotel room. That’s the plan anyway…if she wakes up in time.
PPS Many thanks to Ian’s Aunty and Uncle who have very kindly agreed to ‘car sit’ while we are here. They live not too far away, so it is really helping with car parking expenses. At £10 a day it could be very expensive!
PPPS Hi to everyone at Manchester. We miss you. Hope you are in the new unit and enjoying it. Ella sends a big love and wants to know what you all had for tea?x

2009-06-21T15:03:00.000-07:00

Day +133,134,135
Well we’re here! What an adventure we’ve had this weekend!
It was decided that Ella should move with the main ward, on Friday. We were up and getting organised really early, as I said Dr Wynn was doing his ward round at 7.00am onwards, to assess who was going home or moving. We waited for him to come with baited breath, quite comical really, and by now the whole place was buzzing with the moving teams. He reassured Ella that she would be very safe and well looked after, and that her nurses would be here to meet us etc, and who would she like to travel with her in the ambulance? Of course Mummy, a nurse and who else but Dr Wynn himself! I think he was chuffed too….so that is what happened….and he held her hands all the way here. The move went really smoothly. It was so well organised, down to the last detail. Even I had a special welcomer to meet me, as I arrived at the car park. So, by 4.00pm we were all in our cubicle with our nurses waiting.
At this point Dr Wynn called Sally out, to tell her that there was a bed at Birmingham, and that we would be going the next day, Saturday! To cut a long story short we reorganised the weekend very quickly. Daddy came straight over so that he could see Ella before we left and Sally and I came back home for the night. Of course, by the time I phoned Damian on Sat. morning we were into ‘plan z’, because the Birmingham bed had been taken and the transfer was cancelled until at least Monday! So, here we are on Sunday evening wondering what Monday morning will bring.
We are, however, sat in a very new, state of the art, swish building, surrounded by the latest technology. All the staff seem to be settled in their new environment and the BMU nurses are all working really hard to get it up and running by tomorrow. As you know Ella isn’t in there yet…there have been delays with the air purifying system….but she has been promised her choice of room tomorrow morning. Sally, Damian and I had a look around earlier and it is very nice indeed….. extremely clinical…. and it will be a real culture shock for everyone, but never the less a fabulous atmosphere for children and their ‘angel staff’ alike. They all deserve to have the very best don’t they? Between all of us grown ups we have decided that Ella’s bathroom should have a bath, rather than a wet room. We should have some fun in that, don’t you think?
Anyway, Auntie Rachael has just arrived and suddenly the room looks full…no reflection on Rachael of course, but there is definitely less space, so it looks as though I have been designated to go home for the night and let our favourite Aunty do the honours tonight.
As for Ella, she has had a much better day today, with less tummy ache. Last night was a ‘busy’ night, with xrays and Drs at the ready….but things have calmed down again, so we are looking forward to a peaceful night tonight.
I have tried to include a couple of photos of the moving day, but we are having trouble getting a connection on the dongle…… so we may or not be successful. Hope we are and that you suitably impressed. ( Dr Wynn is sat right in the back of the ambulance.)
Night night from all of us in Manchester, and as usual thankyou for your prayers and loving support.
Ella, Sally, Annette and Rachael.xxxx

2009-06-18T21:34:00.000-07:00

Day +132
Here we are on what we thought would be the anti penultimate day, but which now may be the penultimate day after all……….oh….something like that anyway! In other words we may be moving tomorrow ( Friday) instead of Saturday! Why? Because Ella may be the only patient left on the unit by the end of tomorrow and it seems unnecessary to move her on her own, on Saturday, when she could move with the main oncology ward tomorrow. She will still be in a cubicle over night, then moved again onto the BMU on Saturday. If it does happen this way we have been promised that Ella’s night nurses will go over for the night too, so that she can be nursed by people she recognises. We want it to be a positive experience from the start. Sally is happy with that and Ella is comfortable with it too. Of course that may change again if the unit fills up suddenly, or if we get the call from Birmingham. Watch this space.
The consequence of all this has been that whilst Ella has snoozed, ( all day), Sally and I have been frantically ‘reshuffling’ our ‘don’t know what to do with it ‘ pile. I have to admit though that the room is now looking very smart….very bare….but very ‘now’. In the meantime the inside of my car looks like a car boot sale!
Dr Wynn is doing a very early morning ward round tomorrow, so that he can make decisions about who is going. It means an early start for us all too. The first patient is due to leave at 9.00am ish. I just hope it’s not Ella ….we are usually just having our toast then!
Well it’s now 5.15am and I’m continuing with the blog this morning, I ran out of steam again last night. I must tell you our latest family news though….Sally and Ian have become engaged. They went out for tea last night and Ian proposed….ahhhh! and when they got back here Sally was wearing the most beautiful ring. Ahhh! Lots of love and happiness to them both.xx
Sally is asleep on the bed/settee at the moment and she gave me strict instructions to wake her up before Dr Wynn appears at 7.00am. I have got the feeling that we will be going today, there haven’t been any more admissions over night so far, so we could well be speaking to you from our new ‘hotel’ tonight.
I ‘d best close now and then I can get my head organised, if nothing else.
Lots of love and thankyou as always for your prayers and loving support.
Ella, Sally and Annette.xxx
PS Really pleased to hear you are all wearing smiles Sue.x

2009-06-17T22:27:00.000-07:00

Days +129,130,131
Hello from us all back in Manchester, with a newly spruced up computer in use.( it has been back to Southport for it’s wash and brush up, sorry about the missing days). The weather here today has been awful, lots and lots of rain, but now it’s early evening and the sun has been cracking the flags. I need to tell you how Ella is getting along first though.
We have been through a lot of ups and downs over the last few days. The major concerns have been pain relief, which still isn’t spot on yet at times, and then also Ella’s lines, which haven’t been working again! This has all meant Dr’s visits in the night, bloods taken from her arms and hands instead of the lines, until finally she went down to theatre today to have a new line. This one is working beautifully and at last we can catch up with treatments she fell behind with. ( 3rd time lucky)
There has been a lot of discussion about the next steps in sorting out Ella’s tummy and it has been decided to transfer us to Birmingham, where there is a specialist unit. We have a provisional date for early July, although Dr Wynn has said that we may be on 24hrs notice if a vacancy occurs at the other end. There will be quite a lot of ‘sorting’ to do to get us there as well, because Ella will need a nurse, and probably a Dr, to travel down with her.
In the meantime, we have been really busy getting ourselves organised for the big move on Saturday. The cubicle has been nearly stripped of all our treasures, although the minute we think we are on top of it some one else arrives with another treat for the Princess, which is only right and proper, of course. Daddy came today, Wednesday, and it gave me and Sally some time to sort the cave, together. Sally must have every item of clothing she possesses here, and I’m not far behind. We were trying to fit it all into a small holdall…..which didn’t work…..so we compromised on Sally’s largest suitcase between us!!! All the extras like shoes, hair dryer, books, towels, snugglies, makeup…..will all have to live in the car, wherever we end up. The accommodation at the new hospital is a pull down bed for the bedside person and then sharing a 3 bed room with 2 other ladies ( with NO storage to speak of). We have absolutely no idea about Birmingham yet. Jo, the co-ordinator, is trying to find out for us…she thinks there may be a Ronald McDonald house there! I’m sure we will be well cared for.
There have been many highs this week, including watching Ann making the promised penguins…lovely, a visit from Reg….who came bearing more Sylvanians and then a Chinese takeaway with Ian ( picnic style ), which Sally laid out on Ella’s bed so she could see what we were eating and choose what we had next.
Oh, I nearly forgot to tell you. Ella’s wobbly tooth came out in theatre today, ssooooooooooo the fairies will be coming tonight! They will have to collect it from the theatre, because it’s not allowed back up here, but we have got a special tooth fairy pouch from the Dr to put under Ella’s pillow tonight. How about that then?
Ella is such a brave little person….she has been through so many trials, especially over the last few weeks, she is an inspiration!
I’m going to finish now….it’s actually 4.30am on Thursday morning ( I ran out of steam last night). The fairies HAVE been, although Ella doesn’t know yet. Nurse Niki thought she heard some fluttering about 3.00am!! She wasn’t sure if it was a fairy or Sally.
Bye for now and we’ll try and catch up again tonight to get us back on track.
Lots of love to everyone and as usual our thanks for your loving concern and prayers, which are very important to us.
Ella, Sally and Annette.xxx
PS Hi Janet, hope all is well with you. Sorry we didn’t get to see you before we moved.x
PPS. Hello to everyone at St John’s…..wish you well for the Ofsted.

2009-06-14T22:31:00.001-07:00

Days +127,128
Hello and welcome on board the ‘Marie Celeste’ or at least what feels like it at the moment. There are just 2 children, Ella and Amy, here this weekend and it feels very different indeed, because there hasn’t been the hustle and bustle of everyday life. Plus the fact of course it’s usually quieter at weekends.
( We must say hello to Peter….who moved to a hospital nearer home, on Friday. He was our next door neighbour and had been here for 10 months or so. Hope you have ‘settled in’ Peter. Love to you and your Mum.)
Ella has had a good couple of days. Daddy took over on Saturday and after the initial ‘change over’ anxiety, I know that Ella had a very good nights sleep….about 7 hours according to Daddy! The Drs and surgeons have kept a very close eye this weekend. Nobody wants to have to intervene.
The cubicle is looking even more bare now. We are at the stage where there are ‘bits’ of things around, which don’t fit into either category….either ‘to take’ or ‘to stay’. Then of course there are the definites to go, which we can’t pack yet, like Tiger and Elizabeth. We received more info on Friday about the move. Ella is allowed to take a small holdall and a small teddy …………….ummmmm! Do princesses travel that light usually? There hasn’t been any mention of the ‘red box’. I may have to smuggle that in under the cover of darkness.
Sally and I arrived back at teatime ( Sunday) with Sam….who came along to see big sister. Ella phoned us when we were on the way, to make sure that we were here for teatime , so that she could give Sam his tea.
Ella fell asleep last night wearing her 2 new ‘glow in dark’ bracelets. What with them, the monitor on her toe, the fibre optic lamp and the fairies it was like Blackpool!
It’s around 5.30am now and Kelly has been in to Ella do various jobs. I’ve just finished a cuppa and Sally is snoozing peacefully. I’m just persuading Ella that she doesn’t need that drink and that she can go back to sleep if she really tries. I may even join her for a quick nap if she settles.
Bye for now anyway and we send you lots of love and our thanks for all your prayers and support.
Ella, Sally and Annette.xxx

2009-06-12T04:54:00.000-07:00

Days +125, +126
I can’t believe that another 2 busy days have passed since we last blogged….but they have , so here we go with the latest news.
At the moment Ella is having more comfortable days and nights……. particularly during the day she has been more awake and able to join in with everyday life. For the last week or so she has been heavily sedated, as the Drs are changing her pain relief from morphine to a drug called fentanyl. She has to be weaned off the morphine VERY slowly. Last week saw a hiccup, as possibly this was done perhaps a little too fast and we ended up at square one again. The fentanyl comes in patches (and of course the lollies) so that when the I V morphine is off completely, then Ella can come off her lines again, for part of the day. Roll on that day. Those bambi legs need to be out of bed! Of course that means she will need to get dressed again. We were teasing her the other day, that not only might she be becoming nocturnal, but that also she HAS become a nudist! There again, who doesn’t like to lie in bed, surrounded by pillows, with no clothes on?
On Wednesday we had a short, but sweet, visit from Simon…fresh from their holiday in Cornwall. He dropped by to see Ella and to hand over yet another sponsor cheque. He has totalled us again, which is £656 to date. Once again, many thanks Simon and to everyone who sponsored him. I know the staff, on the unit here, are delighted with your donations.
Simon actually arrived in the middle of Sally and I packing up and trying to organise exactly what we will be taking with us, when we move. We seemed to have so much stuff to choose from….and every time one of the staff came in it seemed to have grown. Anyway, by teatime we had it sorted, and then fell exhausted in a heap as we admired the ONE box of treasures to take!! What is in it you may ask? Well, favourite books, DVDs, arty things, not to forget makeup and of course….Mrs Doubtfire.
Fortunately for us, the senior member of the Blackburn family came yesterday (Thursday) and he was able to take back home all the filled boxes and a few odds and bobs. Oh, and the electric radiator….remember that from the early
days in the igloo? There is a lovely picture of Ella, and the cake she made with Reg, and Reg of course, taken yesterday.
We went for a drive out, to find the new hospital yesterday afternoon. Mmmmm….. what a caffufle! We got there in the end, and I’ve no doubt that a second ‘go’ will be much easier than the first. Why do planners have to build city centre hospitals? The site is huge and is plonked right in the middle of the city. Anyway, I’m sure they know what they are doing.
It’s now almost midday on Friday….and we are still running very late. Ella has had a very difficult morning coping with tummy ache. The pain team have been in, led by an anaesthetist, to give extra help. At the moment she is resting and it seems like a good time to get this posted.
Lots of love to everyone and as usual we send our thanks for all your prayers and loving support.
Ella, Sally and Annette.xxx

2009-06-09T19:47:00.000-07:00

Day +124
Good morning to chilly Manchester. The weather is really starting to break up now and the forecast for tomorrow is horrid.
Anyway, we are warm in here…..too warm at times and the fan is well and truly in use. We have had a happy day, with a visit from Auntie Rachael, Sam and Diane. ( Sam had a day off school, sorry Mrs Robinson). We were expecting them early, around 9.00am, so it was quick showers for us while Ella slept on.
Ella was asleep when they arrived, so it was a case of entertaining Sam quietly. The restaurant seemed to be the best place. He wuffed 2 sausage and beans, all topped off with a can of ‘lucazade’ ( thanks Diane….). He was bouncing off the walls after, that I an tell you.
We had a treat this morning too, Ann came back to show Ella how to make a sugar elephant. As you can see from the photos we were all taking it in. Diane was even promising to call at Tesco on the way home, to buy the ‘stuff’ to make her own. Ann asked Sam what else he would like to see….his answer….penguins! As she disappeared I think she said something about Friday….when she’s practised!)
Rachael kept Sam occupied with a bath bomb session…another blue one….which he took home to have in the bath tonight at Daddy’s. Ummm. Hope Damian’s got some Ajax ready.
We had chats with some of the staff today, about the move and what will happen on that day. All the arrangements have been made, right down to the last detail, and we don’t appear to have anything to worry about. They are expecting it to take more or less all day to move this unit….each child travelling by ambulance with a parent and nurse, with a team of nurses to see them off and another team to welcome them at the other end.
Sally and I had a lovely tea tonight…cannelloni. We had all the things ready for Ella to make it, but she fell into quite a deep sleep and that was that! We had to feed ourselves tonight.
I’m going to finish soon. It’s 3.30am and Sally will be up from the cave soon, to take over. It has been one of those restless nights for Ella….little miss fidget. Drinks, icepops, change pillows round, toilet…..You name it and it has kept Ella from sleeping. At last though, she has dropped off within the last 15mins. Nurse Kirsty is sooooo patient, not to mention competent, she is a breath of fresh air!!!!
So, night night, lots of love to everyone and our usual thanks for your prayers and support.
Ella,Sally and Annette.xxx
PS Hope you like the photos. The caption for Rachael’s should read……’does my bum look big in these?’ x
PPS The answer is NO if you are reading this, Rachael.xx

PPPS Ella was having a 'lie in'.x

2009-06-08T14:08:00.000-07:00

Day +121,122,123
Here we are again, on the other side of a busy weekend! Hope you all had a restful time away from work, and for those just about to begin work again….teachers and pupils….hope you all have a really good start to the new half term.
I’ll give you a quick catch up on the weekend here first of all.
Saturday morning was really quiet, after a calm night, except for Sam that is. He had landed very early to see Ella and of course was full of beans! Ella on the other hand was fast asleep all morning, as we waited for Daddy to arrive to take over,for the night. His arrival was quite exciting really, he landed with 4 little boy cousins and Uncle Gad ,all peeping through the door. They couldn’t come in sadly, but Ella had a little wave to them and promptly fell back to sleep again. Including Sam that made 5 little boys, all visiting!No wonder she went back to sleep.
After a bit of sorting out Sally and I left for home and when I phoned Damian later he said that Ella had been bathed was sitting up for a while during the afternoon.
Sunday morning was another sleepy one, for both Ella and Daddy, but by the time Sally and I arrived back Ella had been sat out on the bed/settee and was now back in bed ! It’s a case of taking advantage of the moment just now!
While I was home I emptied a couple of the boxes…ready to refill with some of the treasures we have accumulated over the months, and which can’t move to the new hospital. We are getting there, honestly. Apparently we can take one box, which has to include EVERYTHING. Watch this space…..
We have had, in fact we are still having, a very nice visit from Kate and Steven. They came along this afternoon and have been having a good chat with Sally. They have all just popped out to the Restaurant for a break, so it gives me a bit of time to ‘blog’ before Corrie starts. They brought 2 gorgeous dresses for Ella and a DVD of her favourite programme…..’Wild at Heart’….guess what we’ll be watching tomorrow. Actually, as I speak, Ella has woken up for an ice pop….as you do…..and at last Kate and Steven have seen her awake. She has been her chatty self. Lovely!
I’ve made several trips over to the washing machine in the igloo, to retrieve one of our snuggglies which has been in there for at least 3 hrs. ( I think another washer has bitten the dust). Finally, I had to end the programme and lug it back dripping. It seemed the best plan to hang it over the shower rail to dry, but not before Kate and I had tried our best to squeeze it. It’s still there now….dripping in all it’s glory.
We have had a lovely evening with Ella. She has fed us fruit, chatted away, started a new word search ( she really is brilliant, even at hard ones) and enjoyed 3 stories from her Milly Molly Mandy story book! Not bad for someone who has snoozed all day?
We are going to finish now and say night night. As usual we send all our love and thanks, for your loving support and prayers.
Ella, Sally and Annette.xxx
PS Hi Sam and Grace....how did you get on for the first day back at school?
PPS Hi Uncle John....sorry we missed you.xx
PPS We'll try to put some photos on tomorrow if Sleeping Beauty wakes up in time. Mind you we'll need a handsome prince....any ideas?

2009-06-05T13:49:00.000-07:00

Day +120
Good morning all. Hope you all had a good day yesterday and that the weather was good to you in some way. I spent the afternoon in Southport…..with the boys in the garden…..and it was beautifully sunny and warm. When I hit the A580 on the way back to Manchester I was in a cloudburst, and we still are I might add. It’s now 8.30pm and the rain is bouncing down. We can’t get a signal on digital, so we are watching a snowy screen. At least the sound is still on.
Ella had a slow start today, still snoozing when I left about 10.30am and that is how she carried on until the afternoon. Then out of the blue I had a lovely phone call
‘Hello Nanna, what did you have for your dinner?’ etc etc
By the time I got back Ella was waiting for me to go the Restaurant for our ‘Friday fish’ so that she could feed Mummy and myself.
What else have we done tonight?
We have drawn a little, painted a little, chatted a little and watched 'snow' a little, and it’s just about time to settle down and sort out ready for bed. I think Sally and I need an early night, ha ha, and as Ella has started hers already, we may as well join her. We have got more sorting out tomorrow, so we need lots of energy!!!!
Night night and thank you for all your good wishes and prayers.
Ella, Sally and Annette.xxx
PS Hi David. Thankyou for your message. Ella sends her love and she loves the rosary. Thankyou. Take care.x

2009-06-04T13:42:00.001-07:00

Day +119
Hello to everyone. We hope you are cooling down nicely, but still enjoying the fine weather?
We have had a quiet day today….well Ella has. She has snoozed all day long and is fast asleep now. She did wake up when Reg and Mummy came back this tea time, in fact she even helped us to eat our tea. She is a real expert with a knife and fork now, and always manages to feed you the tastiest morsels….just big enough to get the flavour, yet small enough to fit in your mouth.
Rachael and I started the day with tea and toast, very nice, and then Rachael started to get organised for the trip home. I thought it was a good idea to carry on with downsizing in the cubicle, so we decided that Rachael should take the buggy home this time. After she had left I got on with sorting out some of the boxes. What a job! What should go? What should stay? But as I’ve mentioned before, we can take very little to the new hospital, so I had to be ruthless. Mind you, there were still 4 full boxes left, even after I’d put 3 by the door to take home, plus numerous bags and bits.
(As I am telling you this they are winging their way to Ainsdale on Sea, in the back of Reg’s car.)
The move for us is 2 weeks on Saturday….it will soon be here. The rest of the hospital is gearing up for the move too. There are many people emptying cupboards, lugging bin bags around, pushing beds from ward to ward and generally looking harassed. From what we can gather there will be teams of nurses to receive the children when they arrive and of course a skeleton staff here, to see them off! I think it will be all hands on deck that day!
Sally and I are just getting ourselves organised for the night, at the moment. Calendar Girls is on and I can feel a cup of tea coming on. We have got an early start tomorrow…I’m off back to Southport early to have the boys, whilst Rachael is at her sewing class, and Sally will be here solo. I’ll be back for the evening though.
Well, night night once again, and thank you for all your prayers and loving support.
Ella,Sally and Annette.xxx
PS The fudge cake sustained me all day Andrea!x
PPS Hi Sue. Glad you are enjoying your break, you’ve all earned it. Love to everyone at St John’s.

2009-06-03T16:17:00.001-07:00

Days +117,118
Hello again, after yet another 2 day break, but at least I have some good photos for you as well as all the news.
Tuesday morning brought a bright and early start as we knew that Ian and Pat were coming ….on a special mission…..to make ice cream with Ella. By 10.30 strawberries were being chopped, cream was chilled ….it was all very exciting. Not only that, Ann( Miss cookery) arrived, to make the long awaited quiche. I think the other families up here must have thought we had opened a café or something!
As you know Ella has been enjoying paddling in her blue bath, and it wasn’t long before it was out, and one or two grownups were invited to paddle too, while we waited for the quiche to cook. Guess who arrived just as the quiche and salad were ready to eat? Yes, Rachael and the 3 boys. It was pandemonium for a while, but it all settled down. While the boys played cars under the bed, Ella made them a sandwich and watched them play. Boys will be boys though, and I guess it was quite a relief all round when we left Ella in peace. ( I was bringing them back home to Rachael’s.)Ella insisted that she wanted to see us off ( probably to make sure they had actually gone). We all set off from the unit together, a long procession this time, but the boys suddenly set off running down the slope to the car park, with me in hot pursuit. I found them sat on the bench outside, by the door, waiting for us. Anyway Ella waved us off which was lovely.
I know she had a very comfortable night, in fact it was so comfortable she slept all morning and part of the afternoon today as well (Weds). At the moment she is having high amounts of pain relief, which are making her very sleepy.
I know the girls, and Ella when she was awake, really enjoyed their visit from Andrea and June today. I’m enjoying it now as well…..they left a gorgeously fattening fudge cake for us. VERY NAUGHTY!!!
This afternoon Sally came to relieve me at Rachael’s and we swopped over….Rachael and I are in charge tonight! We have had a really great evening…..painting water colours of Beatrix Potter prints….Ella’s idea and she actually joined in whole heartedly. Then we decided to watch a film, because Ella wasn’t tired at all at 9.30pm! We chose ‘Shirley Valentine’, thinking that it would just about be ok for Ella. It wasn’t!!! So we had to have a quick look for another, and decided on ‘Dirty Dancing’. Don’t worry though….by the time we had got it started Ella was nodding off the sleep!
She is fast asleep now, having half hourly obs done because she is having a transfusion over night. I don’t know, there are machines beeping everywhere, with nurses in here by the minute, it seems! Rachael is asleep in the cave( I hope) and she’ll take over in a few hours.
We’ll finish now and thank you for all your loving prayers and support.
Ella, Rachael and Annette.xxx
PS Hope you sorted out your patio table Janet! Still, the weather’s changing soon, if you want to look on the bright side?
PPS Hope you like the photos….Ella with Grandma and Grandad. What a place to park the chariot, eh? And on the table, in the other photo, is what is left of the quiche surrounded by the folk who enjoyed it!

PPPS Hi to Simon, Collette and Daniel. Hope you are having a great holiday down there?

2009-06-01T15:08:00.000-07:00

Days +113,114,115,116
‘ White Rabbits’
Where can I possibly begin in order to catch up on the last few days? Before I try we hope you have all had a super duper weekend in this lovely sunshine? Manchester has had it’s fair share I can tell you….with roasting hot days and boiling hot nights ( in the cave).
I’ll briefly tell you our news, I think the blog would be pages and pages long if I tried to tell you everything.
Friday was spent quietly for Ella and I…….we watched DVD’s and coloured in pictures, but it was quite a lazy day really. Daddy came at tea time to stay for the night. We waited for a couple of hours to see if one of the surgical team would come, which they did…… but still no definite news.
Saturday saw Mummy and I taking over from Daddy, and again we had a quiet afternoon, with all three of us doing quite a lot of snoozing.On Sunday we were looking forwards to a visit from Grandma and Grandad so we needed to be up and ready, just in case they surprised us early. In fact Ella had the very good idea that she would like a bath. So, out came the ‘little blue bath’ and we discovered that Ella just fits into it, with no room to spare….not even a rubber duckling! She really enjoyed the getting wet all over feeling. Then, it was on with a pretty dress and off down the main corridor to buy some lunch for Mummy and I. It was quite a journey, Ella in her wheelchair with Sally pushing, and me man handling the drip stand. Anyway, we made it there and back safely, and then on to the bed/settee for a rest!
The morning Dr had suggested that Ella might enjoy the odd ice pop, or ice cube, so nurse Rachel went off to find one. She ended up having to find 4, because Ella didn’t like the taste of any of them, so I promised that I would go out to buy some later. I popped to the Co-op ( thank goodness for the Co op) and managed to get some mini ones, which seem to be a success.
We had a good time with Grandma and Grandad and we now have another furry friend….an Oran tan.(thanks Uncle Lee). When it was time for them to go, we had another procession to see them off….drips and all…and Ella was able to feel the hot sunshine on her legs. This must have got her thinking, because when we got back she had the idea of using the bath as a paddling pool! Why not???? It was soon filled up with really cool water to trickle over her legs and ankles……fantastic! We finished off a great day with a game ( well we set the board up) of junior scrabble. We decided it was too much like hard work and watched TV instead.
Today, Monday, has been a quiet day following an unsettled night. That doesn’t mean to that we didn’t enjoy another bath, another paddle and a visit from Reg. I fact we had 2 paddles, because Ella wanted to paddle again tonight, about 8.30pm. So out came the bath and towels again and we sat at’ the seaside’ sucking ice pops.
At the moment it is 11.00pm, Ella is asleep and Sally has gone to the cave for an early sleep.
We are going to say night night now and give you our usual thanks for all your prayers and support.
Ella,Sally and Annette.xxx

2009-05-29T01:03:00.001-07:00

Day +112
Hello to everyone and we hope you have all had a successful, happy day. The weather here has been very strange today. It began with cold, rainy and windy, moved to cold and windy, then cold and finally very warm….all in one day. Talk about confusing!
Ella had a difficult night, which took a bit of sorting out really. Her red line was naughty again and chose the middle of the night to ‘pack in’, plus she had a temp. Of course that is her drugs line, so none could go through. Kirsty and Sister Andrea decided to call the Dr, who in turn put a canella in Ella’s hand so that the medicines could continue. ( she was so brave…not a flinch).
So, we began the day with an extra ‘tube’ and our left hand out of action. The physio appeared at the door about 10.30am when Ella was catching up on some zzzzzzzz’s, but I just shook my head and she retreated. It wasn’t the right time, if you know what I mean. We need everything to be a positive experience, don’t we? She did mention coming back later, which seemed a much better idea.
After Sally and I had showered(downstairs) we got on with housework, mainly washing today. We ‘spread it about a bit’ too, because the washer on the other ward is leaking now as well, so I took some over to the igloo. Nice to see the old place!! Oh well, we won’t have to worry soon, all the children’s washing at the new hospital will be done by staff on the ward.
We have spent quite a lot of the day watching videos and giving Ella the chance to relax completely. She has concentrated quite well on them, actually. I could see her peeping through closed eyelids! We also continued with our downsizing. Sylvania has moved to Ainsdale on Sea now too, together with one of the craft boxes. Honestly, the room seems quite strange already! We decided that our Egyptian friend was feeling the strain a little, so Sally had the lovely idea of changing the board, as you can see from the photo. It looks very summery. Well done Mummy.
When Dr Wynn came he really didn’t want Ella to have the canella in any longer than necessary, so he decided to have a go himself…….and it started to clear, in part. It took a bit of work over the next hour or so, by an experienced nurse, to finish the job. Actually, it was good to see him in gloves, in a ‘hands on’ situation. It is beginning to look more likely that Ella will be having surgery, and we are waiting for the surgeon ( of Dr Wynn’s choice) to come and see her again.
Ella and I are flying solo tonight. Mummy has gone home for ‘Sam time’ and we have been watching all the soaps, ready for B,G.T. later on. I’ll close now I think and start to settle us down. As my Mum used to say,
‘It’s the hours before midnight that count’. I’m not quite sure that applies here, but we’ll see!
Night night, and lots of love to everyone. Our usual thanks to you, for all your good wishes and prayers.
Ella and Annette.xx
PS Wow Heather, how fantastic. Lucky girl, hope you have a great couple of days. Maybe Mummy could be your very glamorous assistant?x

2009-05-27T14:29:00.001-07:00

Day+111
Hi there from Manchester….trust you are all well and enjoying half term.
We had a very lively start to ours. It’s all in the photos if you look carefully….yes we flooded the shower. It’s known in our cubicle as ‘showergate’. It was quite innocent really…..I switched the shower on, to warm up, as you do, and 5 mins later water was all but gushing from under the bathroom door. The photo shows me baling it out before anyone ‘influential’ arrived. Ella reversed her chariot all the way down to the door in about 10secs to have a look, just as her lines started to beep. That of course brought a couple of nurses in and before we knew where we were the whole world knew. How embarrassing!! A plumber was called….we are still waiting.
Ella was up and dressed early too, in a snazzy little striped ensemble, ready for the impending physio visit. When Jan arrived she set a very daunting task…to walk to Muriel’s other toy cupboard, which is outside the unit. We took a nurse and a chair ( for rests ) with us and eventually we got there. Ella chose 2 games and we set off back. For this dear little girl it must have been like climbing Everest….it was a real struggle….but we made it back all in one piece. I know we have to challenge her a little bit more each day, but it is sooooooooo hard.
This afternoon has been a mixture of ‘snoozing and doing’. The first speaks for itself and the doing part produced a green bathbomb, 2 pizzas ( from scratch) and a fresh fruit salad. I’ve got to admit that most of the ‘doing’ was one sided, but Ella enjoyed watching and that’s the main thing.
Sally and I have been planning how we are going to down size all the treasures we have accumulated in here, over the last 4 months. Every one is precious, but we know that we have been very fortunate so far, in being allowed to keep so much in Ella’s room. It will be a very different set up in the new hospital, with only the bare minimum of possessions allowed in the cubicles. We’re not looking forward to that part of it….1 teddy, no snugglies, no towels etc and all the toys the children need being provided by the hospital....ummmmm! But back to the immediate problem of sorting out! Today we said goodbye to Annabel, her wardrobe and all the teddies, except Tiger and Geoffrey. They’ve gone on holiday to Ainsdale on Sea. Thanks Ian !! Of course it hasn’t made any difference to the clutter, but by next week we should be fashionably ‘minimalist’.
At the moment we are watching ‘Titanic’.( sorry all you football fans out there) and Ella is fast asleep. We are coming to the sad part at the end, so I think a cup of tea might be in order, to charge us up physically ready for the emotional trauma to follow! What do you think?
Nite nite to everyone, and as usual all our thanks for your prayers and support
Lots of love,
Ella, Sally and Annette.xxx
PS Who's blue spotty pj's are those?

2009-05-26T14:09:00.001-07:00

Day +110
Good morning and welcome to Manchester. We have had a great day which I hope the photos will show you.
We got off to a positive start with tomatoes on toast….homemade, not shop bought, followed by showers and bed baths! I was first to go and it was great, then Sally disappeared and whilst she was in the shower I got Ella sorted out. She succumbed slowly, but by the end of the session she had her feet in the ‘little blue bath’ and really enjoyed splashing about. Who should arrive in the middle of it? Yes, Dr Wynn and his entourage…..oops. (I was wondering how Sally was going to reappear from the shower but she managed it gracefully, in a puff of steam!) He didn’t back off this time though and stayed to talk about Ella and her progress. Little will be changing for the present time, but there are lots of discussions going on, between the teams here and also Drs around the country, about how to treat Ella’s tummy condition. It may involve surgery, but we will of course keep you up to date.
Whilst we were on a roll with Ella we encouraged her to get dressed today, and suggested that she should try the chariot out, for size. Mummy demonstrated how to do a wheely in it, then it was my turn to do a three point turn. We must have inspired her, because when Ella got into it she was off! We were out of the cubicle and up the corridor before we could turn round. Honestly, if she hadn’t have had the lines up she would have been unstoppable. The best part of it all was that Ella loved it too….she was really proud.
It didn’t stop there either. When we got back Ella sat out on the bed settee and took a real interest in ‘pink and fluffy’ girly things….like her hair( she gelled it up) and her nails etc. Great stuff!
One of the OT team came this morning( to discuss home facilities with Sally). She had heard about Ella’s trip and suggested another trip out to Muriel’s ‘treats’ cupboard….walking this time. To our great surprise Ella agreed, so off we set again and Ella walked there and back, with just a short sit down while Ella chose her treat. Fab!
Eventually we got around to the highlight of the day….the bath bombs. As you can see from the photos it was very technical, and as you can see from the finished product it was very worth while. We thought that if we produce one bomb a day for the next month we should have enough to give all the ladies in our lives a half each!
What else have we done? Oh yes…we’ve had a nail painting session. Ella and I now have matching nails and it’s Mummy’s turn tomorrow, we are looking forwards to that!
We are at the end of a very good day. Ella is flat out and Sally and I are watching ‘Britain’s got Talent’. We are looking forward to a repeat tomorrow!
Night night from us here, with lots of love and thanks, for your good wishes and prayers.
Ella,Sally and Annette.xxx

PS In case you're wondering...the bomb is blue!

2009-05-25T21:10:00.000-07:00

Days +108,109
Hope you all had a great long weekend…..with plenty of sunshine where ever you have spent it. I know locally the weather has been spot on.
Just a couple of days to catch up with, and both of them quiet and peaceful for Ella. She has had comfortable nights too, which is all better news. Ella is turning into the sleep fairy again…..she loves to just lie and drift in and out of snoozes during the morning. One good way of getting out of ‘the wash’ isn’t it? Mind you, it gives us a chance to take that extra nap too.
Tomorrow we are expecting Ann, the cookery teacher, to come and make quiche with Ella. I’m almost sure that we have the day right, although we don’t want to build any little hopes up, just in case. I managed to find some pizza base dough mix the other day, so if all else fails at least we have got that to fall back on!
When Sally took over from me ,yesterday, I headed straight back home to pick up Jack and Max. They came to stay with me for a sleepover. We decided on feeding the ducks first of all, then a quick visit to the beach. The boys wanted to ‘go to the water’, but you know how far out the tide is at Ainsdale sometimes, so we had to put up with digging down until we reached water! Anyway a good time was had by all. Thanks Reggie for taking us.
When I spoke to Sally this morning, Monday, the Dr had just been and he was pleased with Ella and was able to leave the medications as they are for now. Dr Wynn will be back tomorrow….stand by your beds.
We are going to finish now except to say BATH BOMBS!!!! Yes, the latest ‘to do’ thing scheduled in for tomorrow. The kit comes complete with goggles and safety helmet….
Night night and lots of love. Thanks as usual for all your prayers and well wishes.
Ella, Sally and Annette.xxx
PS Hi Martin....glad to hear you are hard at it! Love to all the family too.x

2009-05-23T15:22:00.000-07:00

Days + 105,106,107
Phew, what a lot to catch up on guys! Where have we all been since Thursday?
Well, firstly of course, news of Ella. Ella has been more comfortable these last few days. Dr Wynn and the pain team decided that she should go back to I.V. morphine….which at first thought seems to be a backwards step, but at the moment, for Ella, is giving a better background relief. However, it means that for the time being she doesn’t have any time off her lines.
The last few days have seen a lot of coming and going, with lots of trips to and from Southport. We had a visit from Reg on Thursday, and then Sam came up with Daddy on Friday. Damian was staying and Sam came home with Mummy for the night.
Where was Nanna some may ask? Well I had an appointment at the dentist on Friday….which I couldn’t put off. My tooth broke whilst I was really enjoying a ginger biscuit, so I had to take myself, and it, to see Mt Stournton. I’m sure you’ll all be relieved to know that it’s been stuck back together….his words, not mine!
What else? Oh yes….we have two new additions to the family here in Manchester. First of all there’s Elizabeth and secondly there is Ella’s new chariot, as yet unnamed. Elizabeth arrived on Thursday in rather a large box. She is soft, smooth, just the right colour and has got her own stand. Have you guessed? Yes, Ella’s new hair. We decided that the name Elizabeth suits her ( if you know what I mean). She doesn’t look the type you would ‘rag’ round the bed and wash in the ‘little blue bath’. Seriously though, this beautiful wig has been given by a charity called the ‘Little Princess’ who devote their funds to providing tailor made hair for children in Ella’s position. Lizzie still has pride of place actually in bed though….which will take some beating.
The ‘chariot’ is fab too. It’s not pink….yet…..but rather a fetching turquoise,bluish sort of colour. Very cute though. It’s just a miniature grown up one, with the big wheels and all! Ella hasn’t sat in it yet, so we are still holding our breath as to whether it will be the right size. All it needs is customizing…..so thinking caps on guys!
I haven’t got any photos to put on today….having been missing for a couple of days…..but when Mummy gets back tomorrow we’ll take a few.
As you may have realised it is Saturday night and Ella and I are here watching a bit of TV. Well I’m watching TV( Pearl Harbour) and Ella is fast asleep. I’m going to finish now and give the film ‘a chance’.
We send our love and best wishes to Ian and Lincoln, on their birthdays, and also to Josh and Megan, Ella’s cousins. Hope you all had a great day today.
Night night, lots of love and all our thanks for your prayers and loving support.
Ella and Annette.xx
P.S. A big hello to Libby and all her lovely family. What have you got planned for the holiday?Enjoy!!!!x
P.S. Ooops Debs. Lemon is the new white, in sports wear, didn’t you know?
PPS Hi to the Waites….hope you all have a super weekend and are looking forwards to that lonnnnnnnnnnnnnng holiday?x

2009-05-20T16:27:00.000-07:00

Day +104
Hi there again. Hope you have all had a good day and enjoyed what little good weather you may have had? Ours here has been a real mixture of wetness and dryness…in all combinations!
We have had an ‘in’ day today, with Ella not feeling up to much at all. We started off very well, Ella gave us our breakfast,(cereal) and then she wanted to walk over to the bedsettee, which was fine too. However tummy ache kicked in and the rest of the day was a mixture of medicines and ‘tummy rubs’.
Sally and I filled the day in with housework….the never ending washing and the never ending washing up!
Oh, in between we did manage to watch the Ben Stiller film about the museum ( the 1st one, don’t panic ) and then whilst Ella snoozed this afternoon we watched ‘Step Up’. A very young and handsome leading man caught Sally’s eye…..not as hunky as Patrick S in ‘Dirty Dancing’ though. We watched that yesterday, and we still can’t get the footwork right in the final dance. You know the bit, girls, they all came dancing down the aisle towards the stage? I think Ella must have thought Mummy and Nanna had really lost the plot as we padded up and down the cubicle in our slippers.
Daddy arrived just about tea time, so that was good to cheer Ella up, but she really wasn’t in the mood at all. After the Dr had been to check her out it was decided to give her tummy an Xray. Dr Wynn was just on his way home when all this was going on and of course he came up straight away, when the Reg called him. He agreed an Xray was a good idea for tonight.
We thought at first it would be a ‘procession’,but no, the machine came to us! It’s a comical looking thing….it’s painted like a giraffe, with the crane part the giraffes neck! Sally put the apron on and stayed by Ella’s bed, and the radiographer suggested I should retire to the bathroom….charming!
Things have settled down since then and Ella is more comfortable at the moment. Sally has gone to the cave ,for the early part of the night, and will take over at 4.00am, and Ella and I are burning the mid night oil. She snoozing right now and I am able to write and keep you up to date.
There has been a lot of activity around the hospital again today….with removal firms packing and taking away lotsssssssss of paper work and files. We have noticed other things going missing too….a ‘bust’ of a Victorian gent is missing from the main corridor! Goodness only knows where he has gone to!
We are going to say night night now, and send you lots of love and all our thanks for your prayers and support.
Ella, Sally and Annette.xxx

2009-05-19T16:31:00.000-07:00

Day +103
Here we are again, at the end of another happy and successful day in Manchester. The weather ,of course, has tried to put a damper on everything, with many heavy outbursts and even the odd roll of thunder. However, indoors it has been a different story.
Ella had a good night again, in spite of different treatments going on throughout the night. We certainly keep the night staff on their toes in here, but we have to say that they are so gentle and considerate, always, and it makes us all feel secure and well looked after, under difficult circumstances.
We began again early…with Sally and I attempting to shower up here, but it has given up again. It was stone cold. Soooooooo it was back to the ‘cave’ shower. At least it is lovely and warm even if you do have to hold it!
Auntie Rachael arrived, much to Ella’s delight, and then the cookery teacher came too and reminded us that Ella was making chocolate cakes today. We agreed on 15mins to get washed and dressed, which we stuck to, and then the cake making began. Dr Rasheed arrived in the middle of it licking his lips…we did promise him one though!
Ella sat out of bed on the bed/settee today and helped Auntie Rachael make some peg dolls.(if you look really closely on the photo you can just about see them) and later of course she made our tea. Honestly, it was like Master Chef in the kitchen tonight, with all the parents up here needing the oven for something out of the ordinary! We had started early though and got the first ‘go’.
We didn’t get to out today…Ella ‘s lines have been up all day, with one thing and another going through, but we have enjoyed being in. Actually Sally and I had a short trip into Swinton, to pick up the ingredients for tea. We drove back in a cloudburst and had to sit in the car for 10mins until it had gone off. When we got back Ella and Auntie Rachael had made us some lovely jewellery. It was great to find Ella able to join in and have some fun today. She did have a big snooze as well…..but mostly she has been awake.
Well it’s just turned midnight here. Sally and Ella are fast asleep and I’m going to join them soon, I hope.
So, we will say night night to everyone and thank you for all your prayers and support.
Ella, Sally and Annette xxx

2009-05-18T13:45:00.000-07:00

Day + 102
Hi and welcome to Manchester. The weather has been ‘orrid….but inside here it has been sunny and warm. We have had a super day, following a good night! In fact the night was so good that I overslept and only woke up when Sally rang ‘the cave’ phone at 6.00am to see if I was OK! I hot tailed it back up here I can tell you!
We got going properly with Ella asking if I would make Mummy breakfast ‘in bed’, she wanted me to make something to do with eggs. So off I went, and decided to make boiled eggs and toast. So far so good…but then I realised we didn’t have any egg cups. Never mind, we made do and Ella was delighted to help us to eat it.
By now Ella was bright and breezy and we were drawing a picture for Dr Wynn at 9.00am. ( a motorbike). When he arrived, plus entourage, he had a good chat with us about Ella’s possible further treatment and she gave him her picture. She didn’t speak of course…but that didn’t matter....they were on the same wave length. As a matter of fact he did a drawing for us too. As you can clearly see it is an anatomically correct drawing of Ella’s digestive system! No wonder she has tummy ache sometimes! When Janet came later and we looked at it again, we just had to laugh.
Our day went from good to great when Simon arrived, to show us his medal and give us a cheque for some of the funds pledged. We were expecting him and after the ‘photo shoot’ Ella’s first question was
“Do you like chips?”
Of course, when Simon said he loves chips off I was sent to get some from the restaurant for him, which Ella prepared by ‘vinegaring and saucing’. Guess which pudding beginning with ‘N’ had to finish them off?
It was time for a quick snooze after Simon had left. We should have gone to physio, but Ella slept through her appointment. She didn’t really wake up when her lines came down either. We made up for it a little later though, when she had a walk up her room with nurse Alison to the window at the end, and back again. Then she had a cuddle with Ali, while Jane and I changed her bed etc. Real Princess treatment!!
Ella has earned another ‘Star’ prize….because she has had her naso/gastric tube fitted again. She chose a tiny ‘magic’ fish tank, where the fish grow when water is added. Sally was wandering if we had room for real fish in here…….Only battered and then fried crispy.
We are now watching ‘Gavin and Stacy’. ( memories of AMC ) Sally is in hoots and Ella is fast asleep, snuggled down, in amongst 8 pillows. We seem to be breeding pillows in here, but she deserves to be cosy and that’s the end of it.
Oh, we need to wish a very happy birthday to Colette today, Simon’s wife, hope you had a lovely day!
We are finishing now and then we can all settle down to get an early night. We send you all our love and as usual our thanks for all your prayers and loving thoughts.
Ella, Sally and Annette.xxx

2009-05-17T23:27:00.000-07:00

Day +100, and +101
Hi to everyone and I must begin by singing……
‘CONGRATULATIONS AND JUBILATIONS’ to Simon, who completed the Manchester 10k run for the bone marrow unit yesterday. His time?,,,,a fantastic
1hr 02mins 43secs. Thank you soooooooo much Simon, for running for us all here, I know that all the money you raised will be put to great use here on the unit, and at the new hospital too. I can’t give you an exact total but it is well over his target of £500.
Ella had a quiet day on Saturday, after a buy Friday night. We didn’t do very much at all except snooze, but we did enjoy a lovely visit from Uncle John and Debra. We were able to catch up on news but best of all for Ella, they brought along a present from their holiday …a singing camel! (No, not a real one Rachael) It sings ‘Any Dream Will Do’….very cute. Where did they go on holiday? …..Devon…..Ummmm. Any ideas for names?
Ella had a good day on Sunday, following a much more peaceful night. I know that she was busy, in between snoozes, decorating some of the gingerbreads with Daddy, to share out. Only 68 left to go! They had a little walk along the corridors too, much too rainy to chance it outside.
Sally brought a game back called ‘Piggy Bank’, so teatime Sunday we three had a game. Needless to say Ella beat us, hands down, and then insisted that Sally and I carry on, to find 2nd and 3rd place. Well, 45mins later we were still throwing the dice! We finished………. eventually…….zzzzzzzzz
I’m going to get this posted off as soon as I can now. It’s early morning, Monday, and I know there are some early rises among you. There is more news to add on, but we can tell you that next time.
Oh, one of the night staff, Marie, went to visit the new hospital over the weekend and she has been describing it to us. She says it is absolutely fab, with every piece of the latest equipment you could wish for! I hope prospective parents and families get a chance to look around too….maybe we should suggest it?
So, lots of love to everyone and all our thanks for your loving support and prayers.
Ella, Sally and Annette.xxx
PS Hi to everyone at AMC, hope you managed to find us Janette.x
PPS Hi to Val and Kevin, my neighbours, so glad to hear you are still blogging.
PPPS Hi to OLOL and St John’s….hope you are over your SATS 6N/E and enjoying some serious relaxation.
PPPPS Finally hi to Auntie Margaret who is blogging in Spain and still struggling to leave comments! Good job we know how to use our mobiles eh?

2009-05-16T03:01:00.000-07:00

Days+98,+99
Well the weather has taken a nose dive hasn’t it? It’s now Friday night and the wind is howling, the rain is beating down…..dear me…..lets hope it picks up for Simon and all the runners on Sunday.
The last couple of days here have been following the highs and lows pattern again. Thursday began well after a settled night. We found out quite early that Auntie Rachael wasn’t coming up after all so we needed to find something interesting to do! Ella did ….she went back to sleep until dinner time. Sally and I pottered about…did the washing etc and tried not to eat anything naughty. We even ate some fruit!!!!!!!!!!!!
I left for home after tea, and I know from talking to Sally later that Ella settled down eventually.
As you know Rachael is on a dress making course on Fridays and this week I’ve had the honour of looking after Sophie. I decided to go home Thursday night to have a good nights’ sleep, before she arrived. We had a lovely day together, and we even picked Max up from nursery so that he could join in the day too. ( it was the yellow peril at FHS Martin. Rachael and I swapped for the day.)
Today Ella has been for more investigations on her tummy, so she has needed another gastric tube, that went a bit deeper, before the dye was introduced. No results as yet though. She is such a good girl and so brave it makes you feel very humble.
I got back up here at tea time….just in time to hit the restaurant again. Chicken curry this time, and then Ella and I settled down to a quiet evening watching telly. Mummy has gone home to ‘Mummy’ Sam for a couple of days.
Oh, thank you Sally Ann for Ella’s lovely new top and book. It’s beautiful and we are looking forward to seeing it on….
We are going to finish now and get this posted. I’ve ‘had a bit bother’ trying to log on tonight, so I may have to wait until tomorrow morning to actually post it.
Night night to everyone and lots of love and thanks for all your good wishes and prayers.
Ella and Annette.xxx
PS Congratulations to Atsoi and Ian on the arrival of their new baby girl….Sophia…..and love to Chris as he becomes a Grandad for the first time.xxx
PPS I spoke to Simon today and he is looking forward to Sunday’s challenge. He is wearing his Everton shirt to run in, so if you catch the race you may be able to spot him on TV. I guess there won’t be that many Everton shirts around!

2009-05-13T23:15:00.001-07:00

Day +97
Where is everyone? Have you all gone on holiday? We are feeling rather cut off over here from all your news…..
Anyway, back to ours. We had a super night, with Ella having a good sleep for quite a lot of it. We needed to be ready for Ella going back to Xray about 8.30, so Sally was up and showered etc. We got the call, off they went, only to be turned back….the Dr wasn’t there. We waited and waited, with Ella sat in her buggy, propped up with pillows, for ages. In the end we gave up and put her back to bed. Of course the inevitable happened! A Dr arrived in the here and another arrived at Xray…all at the same time. We did go to Xray, but there has not been any feed back yet. Dr Wynn has been a missing link for a couple of days. We are hoping to see him today. We know he oversees everything, but it’s not the same somehow is it?
Physio came along to make an appointment for 3.00pm and to say that the chariot will be ready in a couple of days! We didn’t get to the gym actually….Ella had a tummy moment…but we did keep going by making and baking! Actually we ‘maked and baked’ 105 ginger bread ‘thingies’.
Why 105? Because we had the good idea that if we doubled up the ingredients we would have enough to share around….we do….around the whole hospital!!!
Why ‘thingies’? Because they range from thin and very crispy(burnt) to thick and not crispy.
As you can see from the photos Ella was saving her nails whilst Sally glued herself to the mixture. They taste very nice anyway…only another 87 to go!
What else did we do? Oh yes we watched Mamma Mia, and did some housework. The dish washer on the unit has conked out now. Any washing up needs to go into the dishwasher to be sterilized, but of course that can’t happen now, so we have to just dry our pots and put them away. I’m thinking of becoming a professional pot washer…..everytime I go into the kitchen there is a stack of dishes in there already, to wash. (We have got some new parents up here and I don’t think they have got the hang of it yet.)
To round our day off Daddy came along for a couple of hours at teatime. He brought all the bits and pieces for meaty wraps and salad baps etc, so Ella had a last making session before settling down for the evening.
The ‘Soap Awards’ are on at the moment and Ella is beginning to settle more. The new lamp is on and changing colour beautifully, and all is well. We are expecting Auntie Rachael tomorrow, so we need to be organised early again. I wonder if the sewing machine will arrive once more?
We send everyone lots of love and as usual our thanks for all your support and prayers.
Night night,
Ella, Sally and Annette.xxx
PS Simon is running on Sunday, I need to find out the route etc. There maybe an opportunity for Ella to go down and watch him….who knows?

2009-05-12T22:19:00.001-07:00

Day +96
Hi there. Just a quick update for you on today. We all had a fairly peaceful night and 8.00am saw Sally and I drinking tea and eating egg on toast. Mind you, we knew that Auntie Rachael and Little brother were on their way and we wanted to be ready.
Rachael brought her latest prize possession….her sewing machine. She has embarked on a dress making course at College, and so had brought all her ‘stuff’ for us to see, including a dress she is already making for Sophie. It wasn’t long before all the other dress makers on the unit were sharing notes, including Muriel, who is very experienced and gave a lot of good advice.
Sam brought his usual cheery self, and after a quick kiss and cuddle he was going up and down on the electric bed, with Ella at the controls of course, and then he went off to make a sequinned picture with Mummy, while Ella had her wash etc. When she was ready she sat out on the ‘throne’ (big brown chair), propped up with squishy pillows, looking very comfortable.
Ella got a special bravery award today……..a fibre optic lamp. When the Dr arrived late morning, he told us that Dr Wynn and all the other teams had met to discuss Ella and it had been decided to fit Ella with naso- gastric tube for two reasons. Firstly, so that she could be given a barium meal in order to Xray her tummy, and secondly to try her tummy out with a tiny amount of feed, 1ml an hour, to see if she can tolerate it. Sam and I went to see how the birds are getting on whilst it was fitted and when we got back it was all done. It meant quite a few processions, to be Xrayed, as you can imagine and we are going again first thing tomorrow to track the progress. As for the feed…..well her IV feed is still going of course, and this milk feed is to try her healing tummy out.
The new lamp is great, by the way, and has been glowing all night
I think I’ve told you all the news now. Unfortunately we had to miss physio because of the Xrays. Sam was looking forwards to going to the gym, but never mind , we can try again tomorrow. As for Ella’s cooking today….well she ‘constructed’ our pizzas for tea tonight. She had run out of steam by tea time and just didn’t feel like chopping or grating. But they were beautifully arranged instead!!!!
Oh! When the physio came up to see Ella she said that her new ‘chariot’ may be ready in a couple of days……so we had better get started on our designer armrests I think.
We are going to finish now and get this news posted off! As usual we send everyone our love and thanks, for all your prayers and support.
Ella, Sally and Annette.xxx
PS This shouldn’t really be a PS because it’s very important. Simon has broken through his target amount. We are delighted here, as I’m sure you are too. He still hasn’t let me know if Lizzie is coming along?

2009-05-11T15:54:00.000-07:00

ALERT ALERT ALERT
I have given you the wrong address for Simon. It should read
www.justgiving.com/simonblackburn2
sorry about that
A.x

2009-05-11T15:43:00.000-07:00

Day +95
Hello and welcome back to Manchester. It is lovely and sunny here….well not right now because it’s 10.00pm….but it has been, today, Monday.
I think the last three days have been what could be described as ‘turbulent’ for Ella. Highs and lows ….but I think we should talk about the highs don’t you?
We began Saturday well, with a visit from Dr Wynn who has been on duty for the weekend. Again he told us how pleased he is with Ella, and especially to Ella herself, which is great to boost her confidence.
Ella and I got her ready and dressed…pretty in pink…for Sam’s arrival. I hope you like the photo of Ella and Sam shortly after he arrived. They were full of hugs for each other. Naturally it didn’t last long. You know what little brothers can be like….they don’t like kissing too much in public. Sam brought a new remote control car, which kept us busy for a while, then he played another ‘shooting arrows’ game, with Daddy. In fact he was very busy, until it came time to leave for home with Sally and I.
As for Sunday, well I know that making biscuits with Daddy was high on the agenda because there are some left here, and very beautiful they are too. I think the day was an ‘in bed’ day after a busy night.
Today, Monday, I came along to join Sally at lunch time. The two of them had had a busy night again, so I was fully expecting Ella to be snoozing all afternoon. However, she wanted to go to physio, so Sister Andrea rang to see if there was a slot for us…and along we went. In the photo you can see Ella patiently waiting to play balloon tennis, with one vital piece of equipment missing…the balloon. None could be found, and truthfully Ella was ready for home by now, so we came back and guess what? Ella, and Mummy, did fall asleep for the rest of the afternoon!!!!!!!!!! ( peace at last to get on with my painting).
Right now both of them are asleep…I’m on early duty….and it is quite peaceful.
Machines are behaving, TV is off and all is well. We’ve got to wake Ella up later though, to take her medicines. Sometimes we feel like taking them ourselves and leaving her to sleep! ( if any Drs or nurses are reading this I’m kidding…OK?)
Well, it’s not long to go now until Simon competes in the 10k run. I spoke to him today, and I know he is training hard every minute of his spare time. ( that’s right isn’t it Si?) But seriously, we really do appreciate you doing this, with all your sponsorship going to the Bone Marrow Unit. You only need to spend half a day in this hospital to realise just how much help can be given to these children, in non clinical ‘extras’. When I checked out the website Simon only needs a few £’s more to reach his target. That’s great news, well done Simon! If you want to join in the ‘sponsorshipping’ without going on line just let me or Sally know, if not Simon’s Web address is
www.justgiving/simonblackburn2
Anyway, we are going to say night night to everyone, and as usual pass on our love and thanks for all your prayers and loving support.
Ella, Sally and Annette.xxx
PS When I got back today Ella had been busy baking with Ann. She had made carrot cakes. The photo shows just how delicious they were……

2009-05-08T16:48:00.000-07:00

Day +92
Hello and welcome to Manchester. At the moment I think we are in the middle of a cloud burst. It is about 11.30pm and Ella’s tree is really being whipped up by terrific winds, not to mention the torrential rain battering on the windows. Good job we are all snug and protected in here.
Well, we have had a great day. Ella had a comfortable night….she is always awake many times throughout the night, but the last few have been pain free and she has gone straight back to sleep again.
We started off by planning our menus for the day, and as Martin was coming along for a visit we wanted to include him too. As you can see from the photos Ella soon roped him in as her second in command. They were making wraps….and I must say they were very delicious, with every filling inside them that could be squeezed in! I think we have converted Martin to garlic mayo!
In the middle of all this Grandma and Grandad arrived. Of course they were delighted to see Ella joining in and looking so much better. By now we had quite a roomful, but it didn’t stop there….Janet arrived next! Poor Janet valiantly read to Ella and did some Maths, with all this food and stuff and people around. I think at one point there were 7 of us in the room, not including Ella. After Martin had left for home Ella then went on to make a jigsaw with Grandma and Grandad, so she had a really full afternoon. She deserved the big sleep she had.
Whilst Ella was asleep Dr Wynn arrived and had a chat with Sally and I. He is very, very pleased with Ella’s scope results, they show a definite improvement in the gut, and the virus levels have fallen too. We are going in the right direction, slow and steady. We know that he measures his words carefully and this news is very encouraging indeed. We asked him about whether or not we would be moving into the new hospital with them and he said yes. This unit closes here in the middle of June….so at least we have got time to hire the low loader, which we will need to move us in.
Our ‘ home economics department’ was out later on, because Ella woke up remembering that she was making stuffed peppers for our tea. So all the organising began again with Ella lovingly layering courgettes, mushrooms, cous cous and cheese, and by 6.00pm they were in the oven looking gorgeous. They tasted gorgeous too…..a real treat while we were watching Corrie.
Tonight we have really just been watching TV. We tried to have a bit of a tidy round, but we have got so much in the room now, it doesn’t look much different to be honest. Still, it is an extension of our home at the moment soooooooo it is homely!
The unit is quite empty at the moment…just 4 transplant patients in, so the children have almost got a nurse each. Sometimes if they are short of beds on another ward they may send the patient here. At the moment the cubicles are empty though.
Right now it is my turn to sit up. Sally has gone down to the cave to have a proper sleep and I am going to settle down on our ‘big brown chair’. Ella has taken the last of her oral medicines and is fast asleep, so it seems really quiet and still. Just me and the fairies awake. We only have one set of fairies up at the moment. The white ones fluttered down last week and wrapped themselves around nurse Rachel’s neck as she was coming in during the night. We have been promising to fix them back up, so that will be a job for tomorrow. Maybe Damian will fix them when he comes. He is bringing Sam to see Ella and then Sally and I are taking him back home for some ‘Mummy’ time.
We will say night night now, and send you lots of love. As always our thanks for your prayers and loving support.
Ella, Sally and Annette.xxx

2009-05-07T23:09:00.000-07:00

The concentration says it all!

2009-05-07T22:52:00.000-07:00

Day +91
Good morning….just been for my jog and limber up….have you? The weather here is quite bright and sunny right now. It’s about 6.00am, Sally and I have just changed over and ‘Superstar’ is just about to have a ‘lolly’.
I say Superstar, because, as you can see from the photos, Ella really shone in the gym yesterday. The physios were delighted with her….she showed real determination. I know that Ella’s ‘best bit’ was playing balloon badminton. The effort to stand up, let alone swing a racquet is fab!!!! ( and yes, she did actually make it up and down those steps ) More today!!!!
Two more exciting things have happened to us! We are now the proud owners of a ‘big BROWN chair’ and Ella has got a new ELECTRIC bed….. It’s great, not only can she make it go up and down, she can also fold herself in half on it too!
Ella has had 2 settled nights, with plenty of sleep, and they have made such a difference to her days. Hopefully she will be awake when Janet comes today. Ella has missed a couple of her morning lessons, but I know that she enjoyed a story yesterday afternoon, before physio. I hope Ella hasn’t got a case of ‘sixtimestableitis’!!
Hello to everyone at St John’s today, if you log on. I went along there yesterday afternoon, to see everyone and look around the new school. It is absolutely gorgeous and you all look so happy and settled. I couldn’t believe it’s only been a few weeks since the move. Good luck with SATS Yr6 and see you again soon.
We are going to finish now and get this posted. It’s coming up to 7.00am, Ella is just having her bloods done and I’m glad to say that her white line is working…..so no IV visitors today.
Hope you all have a great day and as usual we send you our thanks, for your much needed continued support and prayers.
Lots of love from Ella, Sally and Annette.xx
PS Hope you enjoy the photos today.

PPS Jane, how lucky are you going to see Enrique? I'm definitely, positively sure that he will take your mind off your loss! Enjoy your trip to Kingswood too!!!!!!!!

2009-05-06T17:22:00.000-07:00

Day +90
Hi and welcome to showery and very windy Manchester. We are well into the evening, in fact it is just turned midnight. Ella and Sally are both fast asleep, so I am going to use this quiet time to keep you up to date with all our news.
When Dr Wynn came this morning we had a long talk about Ella’s progress….he is pleased with her results. They do show improvement.We know there is still a very long way to go yet, but we are heading in the right direction! His main concern is still the pain control, which has to be right, in order for Ella to make progress in any daily routines….socializing, school work, physio….not to mention having fun, relaxing and being confident herself that she is getting better! Soooo, there has been a ‘rejiggle’ of how and when the morphine is given ( now in tablet form) and a rethink about how all the other drugs are given too, and Ella is now using the ‘lollies’ again when she needs them. Also the physio team have started in earnest.
One of the physio team came along to see Ella and she ‘invited’ Ella to go along to the department to have a look….this was met with a little frown, as you can imagine, after so long in bed. Anyway, we all built ourselves up to it and at 2.00pm sharp we were ready to go! Ella in her new tracky top and shorts( thanks June) and in her buggy. The department is very nice, with all the facilities, and the staff are lovely.We went into the gym to ‘have a look’ where Ella glumly, and I mean glumly, had a go at throwing and catching, and then knocking skittles over. She very reluctantly got out of her buggy for a short stand, but did show some interest when she saw a three wheeler…which she can have a go on when it has been adjusted for her. A glimmer of a smile even! Poor little Ella, it must seem like torture at the moment, but with lots of encouragement and support we know she will get there. She needs her trainers for tomorrows session, so she knows that ‘they’
mean business…which is good motivation in itself. Oh, more news. She has been measured up for a wheel chair….her buggy is not only getting too small for her, but she can’t manage to get in and out of it herself at the moment. Those bambi legs! I don’t think that they do a pink model….but we will soon customize it in the ‘making department’. Pink fluffy arm rests, maybe, with a built on tray at the back for handbag and Lizzie? After such an exciting afternoon what else could we do but watch a DVD, ‘Bedtime Stories’ and have a snooze!
Sally and I have filled our day in a very calorific way, having munched our way through sweet ‘n sour, rice, beef stew ‘n dumplings and baked potato with beans and cheese. The most exercise we have done is to walk backwards and forwards to the restaurant, and to take the washing to the other ward! I think it will be a race to the gym tomorrow!
Ella looks so comfortable at the moment. She is completely relaxed….lying on her side, with Geoffrery to keep her tummy warm. It seems as if the new routine is working very well!
We’ll say night night to everyone now, and send you lots of love and thanks for all your prayers and good wishes.
Ella, Sally and Annette.xxx
PS The biscuit making is definitely on the agenda for tomorrow and we are looking forward to Janet coming as well. We missed our session today…too many zzzzzzzz’s!
PPS I’m just about to look on ‘justgiving’ to see how Simon is going on! Have we got to limber up Lizzie or not?
PPPS Hi to the Sotherns...lots of lovexx

2009-05-06T00:21:00.000-07:00

Day +89
Good morning everyone. It’s around 6.00am here and the weather looks ‘wettish’ out there, although it feels a little warmer….in here anyway.
Yesterday was a mixture of highs and lows, as usual. Ella and I began the day tired, after a ‘busy’ night. The bleepers had a mind of their own all night and I seemed to wear a pathway between the bed/settee and Ella. ( When we sit by the bed now we have to use the hard chair again, since the demise of the ‘big blue chair’). However, we began with an early wash for both of us and we even gave Lizzie a shampoo and set. Dr Wynn came along and is going to change things around again…..the pain control still needs sorting, so I think that is a priority once more. Results wise, he is waiting for the full histrology from last week.
We were expecting Mummy back later in the day and Ella was really looking forward to it. She has missed Sally…there’s nobody quite like Mummy is there?
We had a lovely visit from Auntie Dianne, who came along with a fab new teddy, complete with birth certificate etc, then low and behold Auntie Rachael appeared too. A real girlie morning! Ella was not really up to joining in though. She was very sleepy…but couldn’t quite get there…..too many interruptions. We did get ready to make biscuits (thanks Reg for the kit) but were missing some vital things…..2 eggs, butter and flour!!! That idea fell flat so we compromised with chatting instead.
Looking around our room I can definitely see signs of ‘market stall’ cropping into mind. It’s tidy , if not homely. The added little ‘extra’ doesn’t help. What is it, you may ask? A second huge TV, on a stand! Why is it in here, along with the first huge TV on a stand, you may ask? Simple….it has an integral video player. When Peter and I celebrated our 25th anniversary we went on a Nile cruise, as you do. We videoed for 2 whole weeks, as you do, and Sally asked me if I would root it out to show Ella, ( Egyptian topic in mind) along with any others tapes I could find. I came back armed with birthdays, nativities, holidays….it’s surprising what you find in the loft isn’t it? So, after battling to get the huge TV in, we sat and watched Sally’s 18th. Quite a trip down memory lane for us, in lots of ways, as you can imagine. Not the least of which were how we all looked in those days. Lots of oohs, ohs and plenty of ahhs! (We didn’t get round to the Egyptian extravaganza….saving that one for today)
We asked Sally to bring back the much needed ingredients with her, stressing a small bag of flour would be tons, as it was only for dusting the surface. The smallest bag was a kilo…….umm! So we may be making more biscuits than we thought today.
Ella is sleeping soundly at the moment, so that may be a good sign that she will have lots of energy to join in today. She really, really deserves to have some days of fun and true relaxation.
I’m going to finish now and get this posted. I could ramble on for longer but I need to get started in here, if we are going to be organised for Dr Wynn’s visit. Sally is catching up on zzzzzzzzzzzzzzz’s too, so I think I’ll make her a cuppa, and me too, to get us going.
As usual we send you lots of love and thanks for all your prayers and well wishes. We love reading your comments too. Love to everyone at OLOL and at St John’s, who are following us, I know. Hope we can link up soon and special love to Simon, who I know is limbering up as we speak……stretching, bending, jogging to work….in readiness for the 10k. Your pledges are flooding in, we are really grateful. Simon has officially refused to wear Sally’s tights….so maybe he could wear Lizzie instead?xx
Bye for now,
Ella, Sally and Annette.xxx
PS I promise some photos tommorow
PPS Simon's web site is
www.justgiving.com/simonblackburn2

2009-05-04T13:45:00.000-07:00

Day +88
Hello and welcome back. Hope you all had a great weekend break and that you managed to get out somewhere in spite of the rotten weather today, Monday.
I need to pick up on a couple of missing days, don’t I? So briefly. Ella has spent a comfortable weekend with Daddy, who came on Saturday afternoon. Nothing to report about Saturday….Ella was well and up and dressed in her new frock, looking as pretty as a picture, when Daddy got here. Soooooooo, Sally and I were all set to leave and I put the laundry etc in the boot and came back in to say bye to Ella. Then the thunderbolt hit…..where were my car keys? In the boot , of course. To cut a long story short, after Amy’s dad had tried to get into it using a coat hanger, I phoned the RAC. When the chap turned up about 75mins later he had to jack it up, to get the ignition, then climbed through the window to get to the boot! ( by now I was praying that the keys really were in the boot!). They were….and we set off home. We got back home about 7.00pm!
Never mind though….we all had a nice evening, and I know that when we spoke to Ella and Damian their night had gone quite smoothly too, and that the Dr was happy with Ella yesterday.
I think Sunday was a quiet day for everyone, with Mummy and Sam spending a lovely day together, ( I know they met up with Auntie Rachael, Uncle John and the boys). Reg and I went for a drive, as us ‘oldies’ do, but we did have a very nice lunch out too, followed by cheese and wine for supper. Great! It was lovely to catch up with friends at church in the morning, so hi to everyone at AMC. Sorry to miss you Martin.
That just about brings us to now. It is 7.25pm on Monday, and Corrie is just about to start. I’m debating whether or not to wake Ella…she hasn’t been asleep for long, but I did promise to wake her up in time.
We have had a good day together. I came along to relieve Damian about midday, which has left Ella and I an afternoon of chatting, popping out to the canteen ( twice), finishing off some ‘crafty’ things we started last week and me managing to demolish almost 1000 calories worth of cheese salad!!!! I know from Damian that Ella had an unsettled night last night, and so did Damian……the front of the ‘big blue chair’ has collapsed….so we are back to the hard one again!!!!!!! The Dr today was quite happy with Ella, so we are just carrying on and trusting that she will have a more settled night tonight.
Well, Ella’s lines are back up for the night, Corrie has just started and two little eyes have opened at the sound of the theme tune….
Night night to everyone, lots of love and thanks for all your prayers and well wishes,as usual.
Ella and Annette.xx

2009-05-02T00:15:00.001-07:00

Day +85
Well,it’s not first thing tomorrow…..it’s last thing today….just to confuse you, or keep you on your toes.
We have had a successful day, so most of the day has been built around that, as you can imagine. here again. As you know Ella has been down to have another ‘scope to see how things are progressing
We began really early with a visit from Janet, before 9.30am actually. We decided on a ‘chat’ today, rather than a lesson. I think we had other things on our mind. Anyway, the session ended with Janet taking our hospital school computer to the ICT technician, who couldn’t get it working either. Later she came landing back with a newer one, so now we are back in business again! No sooner had Janet left than Uncle Gav and Auntie Dianne arrived. It was very nice to see them and we all had a good chat.
Ella has been really tired all day, but as soon as she had a chance to close her eyes either the bleepers would ‘go’ or someone would walk in. This carried on until, finally, the trolly arrived to take her to theatre, about 2.15pm.
She was gone for about an hour in total…just enough time to change the bed and have a quick drink, before going down to meet her out. One of Ella’s main anxieties is that Mummy has to be there when she wakes up, so Sally always makes sure that she is there….spot on time….or should I say half an hour early. Ella isn’t the only anxious one!
As we waited in the corridor Sven went in , and when he came out later he gave us a hint that the surgeons were pleased with what they found. Later on, when the Dr came to see how Ella was, he told us that the condition in the gut had improved. Wonderful news for us all!!!!!!!!
We have been settling Ella down all evening. She can’t get to sleep yet, but we keep trying…..lots of cuddles and tummy rubs seem to do the job.
Hope you like our new room mate?
Lots of love to everyone, and our thanks for all your prayers and support.
Night night Ella, Sally and Annette.xxx
PS Simon is nearly half way to his target already…..thankyou….

www.justgiving.com/simonblackburn2

2009-04-30T23:00:00.000-07:00

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

2009-04-29T23:03:00.000-07:00

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?

2009-04-27T13:06:00.001-07:00

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

2009-04-26T12:20:00.001-07:00

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….

2009-04-25T13:04:00.001-07:00

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

2009-04-24T13:35:00.000-07:00

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!

2009-04-24T00:28:00.001-07:00

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

2009-04-21T11:50:00.001-07:00

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.

2009-04-20T12:17:00.001-07:00

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.

2009-04-17T15:06:00.001-07:00

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

2009-04-16T00:14:00.001-07:00

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

2009-04-14T23:50:00.000-07:00

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!!!!

2009-04-13T12:22:00.001-07:00

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

2009-04-12T13:16:00.001-07:00

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.

2009-04-10T12:48:00.000-07:00

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!!!

2009-04-09T12:45:00.000-07:00

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.

2009-04-09T00:04:00.000-07:00

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!!!!!!!

2009-04-07T15:20:00.000-07:00

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?

2009-04-06T13:07:00.001-07:00

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?