Lola is really weak and listless today. I thought perhaps the blood would pick her up a bit, but she's just exhausted. The nurse explained that her bone marrow is taking longer each time to recover and it's really wiping her out. We bought seeds and plants yesterday on the way home from the hospital and Lola was desperate to sow some (indoors!) today. She has plans for a patch of her own in the garden and has chosen flowers and tomato plants! It was hard to see her sitting on the floor trying to muster the energy to spoon compost into a plant pot, and immediately she had done, she went back to the sofa to sleep.

Lola has cramps in her legs, most probably due to lack of water, but she is a reluctant drinker (unlike her mum!). 1500mls feels like a lot when your powers of persuasion are waning and I'm trying hard not to resort to the threat of a nose tube because I know she's trying. Greta wants me to mention that she has a lovely big verrucca on her foot and Nancy says she is excited that she will be starting her guitar lessons again on Friday.

We heard from a Macmillan Nurse in Birmingham tonight, who has kindly answered a number of our questions over the phone. It looks like we won't manage a consultation with the surgeon prior to the op as he only has next Tuesday free and we are in Ipswich having kidney filtration and heart tests.She explained that the incision will be on the front of Lola's arm, to the right of her muscle and stretching from shoulder to elbow. They may not stitch her, but use glue and staples instead, to reduce scarring. It's not clear if she will have a cast, but it is most likely she will have a back slab to protect the shoulder and a sling to support the arm. The operation takes from 2 to 4 hours and, if all goes well, she may be out after a week. Analgesics will be dripped directly to her shoulder and a plentiful supply of pain relief given. And clothes??.... Lola is going to need big zip front hoodies apparently!.... i feel a trip to H & M coming on....

The most striking thing the nurse said to us was to remember that, by the end of the week after next, Lola won't have the cancer in her body any more.

Lola's lips slowly turned from translucent to a rosy shade of pink this afternoon as the second bag of blood drained in and her cheeks began to tinge, just slightly. It's amazing how quickly her levels drop and the signs become apparent that she is anaemic. Though Lola, like her mum, is a pale faced specimen at this time of year, nothing quite compares to true colourlessness! I am eternally grateful to everyone who donates blood on a regular basis. This is Lola's sixth transfusion and, at two pints a time, that's a considerable amount. I'm frustrated that, having had a transfusion myself, I can't donate any more.

I spoke to Birmingham Royal orthopaedic hospital today and they have given provisional dates for Lola's surgery as the 8th, 11th or 12th of March, depending on Mr Abudu's list. That's incredibly close! Lola is philosophical about her operation but has several unanswered question, as I do. Where exactly do they make an incision? Will she be in a plaster cast afterwards? What clothes will she be able to wear? What does the prosthesis look like and how exactly do they attach it?.... The list is growing. I am waiting to hear if and when we can have a consultation but in the meantime, I've been looking at the ROH Ward 11 website, designed for children facing surgery but helpful for mums who need some answers too. There are some stories by children who have had surgery and a photo of a prosthetic femur and knee joint. I'm beginning to get the idea. Tomorrow the girls and I will look at it together.

Good luck Charlie and Max..... we are all waiting with baited breath to see if there's going to be another Chelmo 3-girl posse. I am breathing very deeply in solidarity and Lola is almost out of the door, arms at the ready!! Loads and loads of love xx

Hi it's Lola,writing my own blog tonight.Managed school all day today but i'm exhausted now!No school tomorrow as I'm in Ipswich all day for a blood transfusion not too bad as I'm doing a project about Zimbabwe and I can do work on that all day.

New nose tube came out again (thats twice in 7 days :-( ! )Trying to avoid having a new one in so thats lots of food!!!!

It's Tuesday and we're still in Addenbrooks, but freedom is in sight... 9.20pm to be precise. Then no more chemo for at least six weeks! Lola has had a rough ride with the chemo this time, feeling nauseous almost immediately and actually being sick quite spectacularly on Sunday night. She managed to eject her nose tube, which left me floundering to know which direction to pull it out! Luckily, a nurse was on hand and did a swift removal. Despite feeling sick, Lola 'needed' a Chinese for supper last night and I had to apologise to all the other families on the ward for filling it with the smell of food!

'Cool Beans' Jo, one of Lola's favourite nurses, kindly stayed on after her night shift to replace Lola's tube this morning. A horrible experience all round and best forgotten as quickly as possible. I can only imagine how disgusting it must feel having a tube pushed up your nose, down into your stomach and then moved around until in exactly the right place. Lola had the tightest cuddle, shut her eyes and it was in. Unfortunately, it sets off the gag reflex and made her quite sick again for a while afterwards. It felt mean to agree to a tube when she has managed to regain a bit of weight, but it means that the majority of medicines can be given through it and she doesn't have the stress and discomfort of swallowing them, or food, when she feels really poorly.

Nancy and Greta are having a lovely time at Granny B's, spreading Polly Pocket and Animal Rescue all over the floor, and I can't wait to spend the rest of half term with them. According to Lola, it's pancakes for breakfast tomorrow as we've missed Pancake Day today, and we've got boxes of toys and books from storage to unpack. Friday is party day. Mathilde is back from France to celebrate her birthday and, all being well, we will all be there.

Meanwhile, I really could do with some crossword help -
'Quality of outweighing other factors etc' (13) - - - - o - d - r - g - e
'Extreme members of group' (7,6) L - n - t - - / - - - - - -

Bed... no bed....bed....chemo...no chemo...... maybe tomorrow Lola will start round 6! Ward C2 was full to capacity yesterday... no room for Lola. Today she was a priority, they offered a bed at 8am and she was there by 10am. After check ups and consultants review she was ready to roll. Unfortunately, Addenbrooks had forgotten to organise the chemo drugs, there are no chemo staff on overnight on a Friday night and so Lola came out again! Tonight she's visiting Lucy and Eddie in London and tomorrow morning, back to C2. I will go on Sunday night to take over until Tuesday night.

Nancy, Greta and I now have an unexpected weekend together so I'm desperately searching for something exciting to do tomorrow afternoon. Chilling out at home is a less than appealing prospect as we have the whole of half term to do that! We had planned a trip to Brighton from Wednesday to Friday to hang out with cousins, but will need to cancel as there is no way Lola will be up for travelling so soon after coming out of hospital. We do have shelves to build and more boxes of toys to collect from storage.... or we could just jump on the train and visit friends! .... Who knows?

Sitting down to write this I can hardly believe that the last posting was only a week ago. I remember feeling on tenterhooks every time I took Lola's temperature... just hoping against hope that it wouldn't start the inevitable climb. I had booked to visit Joe in Italy from Friday until Sunday, a fleeting visit, but really important for me to just briefly be a part of the world I share virtually through Skype. I'd carefully timed the flights for the weekend immediately preceding chemotherapy, knowing through experience (already!) that Lola was most likely to be at her very best at that point.

The girls were due to be at Martin's all weekend and Amazing Aunty Sarah came from Hertford for the day on Friday to look after Lola and collect Nancy and Greta from school. She truly was a star, hospital for blood tests in the morning, going off to assembly in the afternoon. Having had the most immense headache for two days, it miraculously lifted when I saw how pleased the girls were to see Sarah and how they could hardly wait to pack me out of the door so that the fun could begin. Sarah, you are truly a star.... thank you!

Despite experiencing far too many emotions in one go... anxiety, guilt, nervousness and excitement, to name just a few!!...I had a really fantastic time. I'm not sure I could have been more pampered ....delicious food, especially mozzarella di buffalo, the infamous aubergine pasta and pistachio ice cream (mmmm!!), lots of good red wine and coffee, walks, waterfalls, new friends and sleep .... ooohh, ummm, hang on... there WAS a rugby match..!! Actually, I am humble enough to admit I even enjoyed that, but perhaps it was the wine? Thank you , Joe xx

Last weekend, though over far too quickly, has restored my energy, my patience and my optimism for the future. I couldn't wait to see the girls on Sunday night. I can see, having stepped away just for a moment, that I had become almost automaton in the way I approached each day. Although, coming home, everything feels very raw and real again, I am really glad I had that chance to reflect. It is all too easy to live everyday determined by the cancer and treatment. I really want to concentrate on the girls and I continuing to grow, to keep on experiencing and living, in spite of the cancer not through it. We are making plans, talking about the future and trying to enjoy every day.

I'm loitering in the background, pretending to concentrate on this and actually eaves-dropping on Lola and the home tutor! She is sounding full of interest and enthusiasm so far and I'm beginning to think this could go well.... a full two hours of adult attention twice a week...if the dynamic works and Lola feels ok, she's going to love it.

Temperature remains down, day feed is replacing the need to eat, morphine is keeping the pain at bay... and we are still at home - every day is a bonus!

Episodes of TRIBE are doing it for Lola right now and she is fast becoming fascinated by history and anthropology. We spent most of this evening cuddled up on the sofa, peeking through our fingers at the women of the Suri tribe tucking lip plates into their detached lower lips and hooking their flesh with thorns before cutting it with razor blades as permanent skin decoration to attract men. The men, meanwhile, were purging themselves with tree bark and river water and drinking the fresh blood of cows and goats in readiness for stick-fighting with another tribe; it was captivating. Tomorrow afternoon we will be watching the Kombai, hunter-gatherers of the West Papua jungle. We may not leave Chestnut House very often, and rarely venture past the Orwell Bridge, but our imaginations are going so much further!