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

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

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

Day +38

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

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

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

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

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