Pyjama day today... no-one got dressed until 2pm! We played SIMS, tidied, moved furniture, washed clothes, made paper, baked cakes and did homework. Lola's neutrophils are dropping and despite a valiant effort to prove she was full of beans and "completely well", we both knew she was not going to make it to see 'Imagined Village' this evening. Having made the decision to stay at home and rest, she was clearly relieved... and so was I. I'm hoping against hope that we can keep infections at bay this time and stay out of hospital until the next chemo, so have decided we are going to be reclusive this week until her levels pick up. It's a difficult call, keeping Lola out of school, but seeing how low she gets when she needs to go in with a temperature, my judgement tells me it's worth it. We may end up with the tidiest house in the village by Friday...... but somehow, I suspect not!

Thanks Charlotte, for the link you posted to Ollie's Story. I was captivated and, obviously, enormously moved by her web diary. I think it will be hugely reassuring to Lola to see someone a little further down the line with the same diagnosis.

The girls and I are sending huge waves of love and strength to Alex and his family as he heads off to Bristol tonight. We'll be thinking of you and wishing and willing for the treatment to go smoothly and successfully. Elaine, don't worry, I will keep Costas at Addenbrooks in business in your absence... and Nat, if you ever feel daring enough to hang out in the company of THREE girls, you are so, so welcome!!

Just as predicted, Lola needed a few bags of blood yesterday to restore her strength. The chemotherapy has a definite pathway and I can feel my anxieties rise around this time, about a week after treatment. Despite the transfusion, she tires easily and is starting to feel uncomfortable in her throat. Her daily cocktail of drugs at the moment consists of 2 or 3 doses of ondansetron and/or domperidone ( anti-sickness drugs), 2 doses of septrin (a prophylactic antibiotic), 4 doses of nystatin (treatment for oral thrush caused by the chemotherapy), one dose of lanzoprazole (a gastric drug), up to 4 doses of codeine phosphate (to alleviate the pain in her throat) and if necessary, up to 3 doses of oramorph ( morphine is sometimes the only effective pain-killer). She also uses a chlorohexidrine mouthwash twice a day, aqueous cream on her dry legs and peeling feet and hypromellose eyedrops to help keep her eyes moist.

Some of the drugs can be pushed through her nasal gastric tube which helps if she is feeling sick or can't bear the taste of the medicine. Some are too thick though and have to be swallowed for maximum effect. That can involve quite a waiting game and several spoonfuls of sticky gloop have ended up on the bed/ over the sofa/ in my shoe. I spend quite a while trying to look nonchalant and like I have nothing I would rather do than just sit, waiting, with a loaded spoon, for when the moment is right. It's quite amazing when I think back just a few months though, as each dose was a tearful battle and required every persuasion tactic available. In contrast, Lola is now able to recognise if she needs anti-sickness medication and was proactive in suggesting she took some of the preventative drugs more quickly this time to try to stave off infection.

We've had a lovely Saturday together. Nancy managed to get a place again this term in the New Wolsey Youth theatre and is immensely proud, so she skipped off to drama this morning. Greta dressed as "half-cat half-girl" for Edie's birthday party and staunchly refused to come home for hours after it had finished and Lola was my partner in crime all day. Nancy managed to thrash us all at Cleudo tonight, guessing the cards on her FIRST go (and with no cheating!).... bit scary really!

Best Comment Award of the day definitely goes to Eva ..... she hates having her hair brushed and wants to know why she can't have hair like Lola's!

Lola did indeed make it home, full of energy and ravenous, on Sunday night. As she has a saline flush running for 12 hours following chemotherapy, it is usually late before she manages to escape Addenbrooks and often she gets in around 10pm. It seems that she needs to wind down before she can go to bed and this involves Wii challenges or episodes of 'Outnumbered'. Sometimes there's a danger that I'll have to go to bed and leave her chilling out.... I am so relieved to see her that I just relax and need to sleep, she on the other hand is completely wired!

She is needing fewer doses of anti-sickness this week which is great, and has managed school for half a day yesterday and until 230pm today. I can see her tiring as the week progresses though. Her haemoglobin levels will be falling sharply by now and she is begin to take on her 'Bride of Dracula' pallor which inevitably leads to a transfusion... I'd place a bet on Friday. Thanks to a great deal of dogged determination on the part of Miss Heyward, Lola has finally been asssigned a home tutor who will face the challenge next Tuesday afternoon. I thought perhaps Lola might show reluctance at being pursued into her home, but so far she has expressed tentative curiosity. Not sure she'd ever admit it, but i'm sure she misses the challenge of learning enormously. Good luck Miss Smart

I made loads of phone calls today, hopelessly optimistic that Birmingham may have set a date for surgery. Apparently, we are unlikely to know for sure until the week before as, despite being top of the list as a child, anyone needing a biopsy takes priority. The surgeon needs to see the MRI and CT images and a radiographer at the Royal Orthopaedic prepares a report on these. Then the measurement x-rays taken back in October are sent away so that the prosthetic arm can be made... takes about a week. I hope we get to see the prosthesis before surgery. I think it might help Lola to know what will replace her humerus... and I think it will help me too!

The CT results were back today too. Another moment of confused positive/negative information which was difficult to make sense of! The scan shows 'no change' and the team are pleased with this result. It seems that the pulmonary nodules on her lungs remain visible but have not changed in any way. My understanding is that, were they to be metastases of the cancer then there would most likely have been a change in their presentation, due to the chemotherapy. As there is no change it is possible they are just normal clusters of cells and not cancer at all. As the largest is 0.2cm.... absolutely tiny... they do not qualify as metastases anyway in the Ewing's Sarcoma protocol... confusing stuff! However, the hospital cannot ascertain for sure what the nodules are as they are too tiny to find in a biopsy. Instead they will just be monitored for change. All this information is, I think, quite good!! Amos returns from his holiday on Feb 1st and things will all be much clearer i'm sure...

On a completely different note, sometimes I feel that not working, in fact not leaving the village that frequently, my mind is beginning to shrink and, apart from a whole repertoire of medical terms and procedures, I have less and less to talk about (doesn't stop me trying, obviously!!). Not today though... today, just for one brief 6am moment, I was the bringer of (potentially calamitous) up to the minute information. I witnessed, at first hand, the fire at the Suffolk Food Hall... impressed?!

I promise I wasn't just driving around in the early hours looking for something to talk about.... I was returning from dropping Joe at Stansted Airport at 5am (how devoted?), and loving the empty roads, when I was stopped on the Strand by the enormous water hose which lay across the road and down into the river. Have to admit, i didn't actually see the flames... just a lot of smoke and fire engines! Still, I like to think I saved a lot of people wasted journey time to their mid-morning cappuccino and croissant by my timely Facebook posting........!!

It's late... i didn't realise the time! Just back from my 2 day stint at Addenbrooks with Lola, collected Nancy and Greta from Michelle and Guy next door, loaded the washing machine and taken a gigantic Tesco delivery.... suddenly it's 1130pm! Lola will be home, all being well, on Sunday night, but tomorrow I am off to Sadler's Wells with Sarah to watch Swan Lake... the all male version...can't wait!

Hard to believe Lola will only have one more round of chemotherapy before surgery. Having been so well since Christmas, it felt hard to take Lola back to Cambridge this time. Everything was thrown a little askew as the hospital realised on Monday afternoon that she needed several crucial tests done before chemo could take place. Having been all psyched up for a Tuesday start, we were told that things would be delayed until at least Thursday. Lola deals with the treatment incredibly bravely, and is very philosophical about all the poking and prodding she experiences, but what she finds really challenging is last minute change. She never, ever complains about going in for treatment but obviously prepares mentally, and any deviations from the plan upset her.

We were at Addenbrooks for 8am on Tuesday and her kidneys and heart were put through their paces. Thankfully, she's a tough cookie and despite the hammering her organs are taking from the drugs, everything is functioning just as it should. She also had an MRI scan of her tumour. On Wednesday, they told us that these results showed the tumour was 'stable'. Basically, it hasn't grown. All the anxieties I'd felt at diagnosis came flooding back. I realised that, despite taking her along for the scan, I was completely unsure of what they were really looking for; what was good and what was not so good. 'Stable' didn't sound great.

The first Doctor explained over the phone that, in an ideal world, the tumour would have shrunk, but that they were satisfied with no increase. The second doctor, admitting Lola for chemo on Thursday, said that they were happy with the results which showed the tumour to be 'at worst' stable. I finally spoke to Amos, Lola's oncologist, today, who told me in no uncertain terms that they would not expect the bone to shrink and that what they saw confirmed that she was 'responding well' to chemotherapy. I can't really explain the relief at hearing what appears to me to be positive information from the person who really counts!

The results have been forwarded to Birmingham and surgery will be booked for around 6 weeks time, pending the outcome of the CT scan of Lola's chest, taken today. They are hoping that the two tiny spots in her lungs, which may or may not have been metastases, will have either disappeared with the chemo or remain and show that they are in fact clusters of cells and nothing to do with the cancer. Lola said today that she is 'sort of looking forward' to her surgery. I suppose we have been talking about it for a while and it's a milestone she wants to pass now.

Never, ever make a plan..... Tomorrow's chemo is no longer tomorrow but Thursday, maybe.... Seems Addenbrooks forgot Lola needed another tumour check, kidney test and heart ultrasound prior to any more medication - a Christmas blip, I think. Tomorrow morning, Lola and I will be up bright and early to be at Addenbrooks for 8am. They will cram the tests into one day - MRI, GFR and echocardiogram - and then we'll zoom home again for another day of school, before we head back up there on Thursday morning for Round 5! More unpacking and packing of bags...

The girls have been super-brave tonight and giggled their way through second doses of flu and swine flu jabs. Lola hopped on the scales in the nurse's room too and discovered she'd hit a grand weight of 31.5kg - just wondering what nanny put in her cooking. We celebrated with BIG plates of fish and chips, healthy eating is absolutely a thing of the past! Just hoping they don't ask me to step on for a weigh in at Addenbrooks tomorrow!

Oh, and heard from the oncologist that they managed to collect a really good stem cell harvest last week - 4.4 units when they needed to take at least 2. Not sure what units stem cells are measured in, but double sounds fantastic to me. They are now frozen and ready for use post-surgery, should they be necessary.

I am becoming accustomed to not going to work.... just for now! Sadly, my house is messier, the washing pile taller than ever and the bare christmas tree still hiding in the corner (can't believe I have confessed to that!). Being at home for a week hasn't changed me into a domestic goddess...The difference is, I don't really mind! I have however, taken and collected the girls from school, had Lola home for lunch and taken her for appointments and spent fewer evenings on the phone making arrangements for childcare which inevitably need to be changed again the next day. And I know, next week post-chemo, when school is not an option, I will be able to devote my time properly to looking after them all without feeling torn or guilty and maybe even with fainter grey shadows under my eyes! Thanks Sara, for the nudge...

The girls and I are officially on holiday! We drove to Gloucester on Thursday night through fog and miserable greyness, courtesy car over-flowing with wellies, woolly hats and medical supplies, to visit Nanny Dyllis and Grandpa Peter. Lola needed a hospital check up during the afternoon to get the all-clear to travel. Everything was fine, the Paediatrician was pleased to see her looking so energetic and well and the scales tipped in at 30.9kg, so she has a mission to hit 31kg before Addenbrooks on Tuesday!

Thanks Sally for the DVD player.. it almost made the journey bearable.The only down-side was that they had to sit next to one another in the back in order to see the screens... it means your legs and arms touch!! My favourite part of the journey had to be the impromptu renditions of 'any songs we know'. Greta does a mean Taylor Swift, Lola and Nancy knew exactly where the swear words were in Lily Allen, but the piece de resistance must have been "Wiggly Woo" en famille and recorded on answer-machine for the benefit of Joe's children... not sure they'll come back to England in a hurry!

We shopped yesterday afternoon with the girls' christmas money... an H & M frenzy of trying on hats, bags and sparkly boots which began to feel like a trolley-dash. Mum and I didn't get a look in... nothing larger than age 11! Nancy spent the next few hours at home posing for imaginary paparazzi and Greta put all her 'accessories' on at once... gloves, clips, hairband, belt and water bottle...

Lola is really interested in tracing her family tree at the moment and we spent some really precious time listening to Great Nanny Bessie tell us about her childhood and life in the war in Ipswich. The girls could relate to the places she described and knew exactly where she lived as a little girl, and where she met Great Grandad Ivan as a young sailor. They could imagine how the river and docks used to be and were fascinated to hear about Nanny's jobs as a young woman, working in an underwear factory at the top of LLoyds Avenue and making tents and sails in a factory near the football ground.

This afternoon we went to watch 'The Witches' at Malvern Theatre, which has fed Nancy's hunger to tread the boards! Greta kept reassuring me that the Witches were actors and wearing make-up, and really did have toes, didn't they? and Lola spent most of the time on the edge of her seat, grinning. More normality... things we used to do, without a thought, before October.

We even caught up on homework, piles of it, before supper. I truly appreciate things now like I never did before.

Time to update... somehow since the run-up to Christmas I have found it really hard to write. I think perhaps I don't want to reflect too much on what is happening - just deal with the tricky bits and really appreciate the good times.

Lola had a challenging time last week. The GCSF injections to boost the stem cell production took a little longer than expected to work their magic and everyday became a cycle of temperature-watching, blood-testing and drug-taking. Her count didn't rise as expected and we were on tenter-hooks just hoping that she didn't end up in Ipswich hospital with an infection. Throat ulcers and anaemia meant that she needed a transfusion and 4 hourly shots of morphine and anti-sickness drugs, alongside the other four or five medications she already takes. She staunchly refused food for five days and even water was painful to swallow, so she had a day-time nasal gastric feed and additional fluids as well as the night one to keep up energy levels. Although the snow was beautiful, sometimes at night I felt really anxious that we might need to go in and just might end up stuck (again!!). There were a few close shaves with the thermometer and the dreaded 38C, but through sheer will and determination I'm sure, we managed to stay at home.

Still, you can only watch so much Tracey Beaker! All the Christmas present art activities got started but required just a little too much concentration and energy. Wii tennis was just too energetic and company was thin on the ground when Nancy and Greta went back to school. By Thursday, Lola had had enough and I wasn't far behind her. After her blood checks that morning we had all resigned ourselves to the fact that the stem cell harvest wasn't going to happen that week after all.... 10 minutes after arriving back, Addenbrooks called to say that they wanted her in later that day for a harvest the next morning!! Fantastic news, but hard for Lola to cope with such a sudden change in plan. Anyway, it all happened and, as far as we know, was a success.

Chemo round 5 begins on Tuesday and Lola has been into school this week. It's wonderful to see her with energy and a smile for her friends. She is so warmly welcomed whenever she makes it in and was even enthusing about the reading and spelling tests she had to take yesterday. Nancy and Greta have been able to have friends to play after school this week and life feels a little bit normal. I have reluctantly accepted that I can't make it into work for a little while and have been signed off for four months. It feels all wrong to me that I have to be 'sick' myself, and a bit like failing at something, but I know it's absolutely the right thing at the moment. Handford Hall are brilliant and completely supportive.... I'm just trying to think of it as a sort of 'alternative' maternity leave... I'll be back!!

Just to add to Lola's 'snow adventures', we slid on the ice yesterday and I managed to wrap my car around a 30mph sign 5 minutes from our house! We were all fine. The girls thought it was hilarious and I am just suffering humiliation... once again! Looks like our trip to Gloucester this weekend will be in a courtesy car.... oh well!