Busy.. busy...busy!

Long time, no post!

I think I can safely say that when I'm quiet (on the blog, before anyone comments!) then things are super busy and/or approaching a kind of slightly frantic normality. So much has happened since the last post, small but significant moments. Lola's chemo continues to run, by the skin of our teeth, to time. That's fantastic as it looks more and more likely that she will make it to some, if not all, of the Year 6 trip to York....something I never dreamed could happen 6 months ago. More importantly, she might be able to start High School, along with her peers, on time.

Lola and I met with the High School SENCO and talked about plans for ensuring that she doesn't miss out, as much as possible, on all that crucial friend-making, settling in time. I almost felt surplus to requirements as Lola confidently chatted away about her experience and hopes for the future. I was so proud of her positive spirit and enthusiasm and incredibly grateful to Chelmo school for keeping her so close to heart and involved, despite her infrequent attendance this year. I feel the same towards Handford Hall on my behalf.

I managed a trip to Orford castle with Greta's class as a parent helper, and LOVED it, despite the embarrassment of having to stop the coach for a child who needed a wee... and just happened to be my daughter. Sadly, we didn't make it to Hebden Bridge for Ben's Charity Walk.... just a little too far too close to chemo. He and pals did amazingly, the photos were fantastic and we felt so proud of them (especially Dot!) THANK YOU, THANK YOU, THANK YOU xxx We have however managed a night in Hertford with the gorgeous Aunties Sarah and Caroline, barbecuing on the island, picnicing in the sun and trawling the park in search of the elusive band we could hear but not see. Fun and ice cream all round.

We have also traded in the big silver number for a super-efficient and (at the moment) clean, black Scenic. Lola somehow managed to sort out a deal involving bluetooth phone and ipod player while I was nervously test-driving.... Junior Apprentice next year?... God, i hope not...

And..... I have been to WORK!! I loved it and felt so privileged to be back. Everyone made me so welcome and I am incredibly in awe of how Clare has managed to do her own job and mine at the same time. Did you ever go home? I am immersing myself gently and back in full force in a few weeks. I honestly didn't appreciate how important my job was to me until I couldn't do it any more. It's not something i will take for granted in future.

Half term has been crazy. Nancy has completed a 5 day sailing course and passed her Stage 2... go Nancy! She LOVED it and has informed she would like to do a course every holiday from now on... watch out Ellen McArthur. I'm hoping she will be able to get lots of practice at Alton Water with Mia and Ollie over the summer. She has even offered to teach me, having watched me hopelessly slide from one side of the dinghy to the other when I went out with Joe!

Greta spent a day at the stables with Eva on a Pony Day and more importantly, became 6 this week! We picnicked on Friday and then on Saturday had a Jungle Party. Thanks so much to Manda and Paul for bravely lending us your house to host the fun. The sun shone and Lola and Nancy were brilliant party organisers... i just watched, then filled bin bags afterwards. Cousin Lucy slept over and Sylvanians ruled the house this morning.

Last, but absolutely not least, we booked a holiday!! Yippeeeeeee.......
Joe, Maya and Luca are spending several weeks of August in England, and for three nights we are camping in a tipi on an eco-campsite in Norfolk! It was a spontaneous but completely unanimous decision. The girls and I were skipping round the kitchen while thumbs up were wiggling across the screen from Italy via Skype. Please, please cross everything for good health and low temperatures (in human beings, I mean!).... we can't wait!

at long last..... sorry!

This post is shockingly overdue.... sorry!
No real reason for such a long silence, except life.

Lola is making progress each day with her arm function. It's a long haul and physiotherapy is rarely met with squeals of glee - three lots of 20 minutes a day sounds so manageable, but relies on everything else in the day running smoothly and temperaments being conducive. We manage it most days and intersperse bowling games and throwing plastic frogs at one another to up the interest level.

The new chemotherapy regime has, so far, proved less harsh and Lola has recovered from each round well enough to spend several days a week in school, sit her SATs tests, go go-karting and occasionally spend a few hours with friends. It's fantastic to see more of the old Lola. She is able to enjoy the company of her sisters again and I hear far more laughter than I have in a long while. She has convinced me that she will be flying to Italy in the October half-term, and nothing will stop her. So.... we now all have flights booked!

Sadly, my incredibly special Grandad Ivan died a few weeks ago. He was on a mine-sweeper on the River Orwell during the war and loved this area with a passion. His Altzheimer's meant that for many years he was prone to repetition and he could never talk to us enough about Shotley and the HMS Ganges. The morning after he died, the girls made boats for their Great Grandad with their own special messages to him. After school we went down to the river, skimmed stones across the water and sailed the boats. I will try to attach some of the photos. It was a beautiful and comforting way to say goodbye.

Since then, Greta has recovered from a horrendous bout of chicken pox and looks almost healthy again, Nancy has been braver than I could ever be and stood in front of the school in assembly to sing 'Imagine' unaccompanied and Lola has taken part in an inter-schools Spelling Bee Competition.... life is never dull! Oh... and I managed another far too short but fantastic weekend in Italy. It rained... and rained... but I had the loveliest time. Thanks Laura and Alvise for delicious lunch in Orvieto, to Davide and Helene for crazy ping-pong mania and to Joe for birthday presents, walks, encouraging me to eat my body weight in gelato and helping me to relax. xxx

My on-going mission continues to be the consumption of calories by Lola. She was given special dispensation by the dietician to remain NG free until next chemo on the understanding that her weight rises above 30kilos. It's a hard, frustrating battle and it's not going well. i think she has tried, and rejected, almost every supplement going whilst desperately wanting to achieve the goal. It's heart-rending to see because she is eating quite well, especially in comparison to the few months before her op. Unfortunately, it's not enough to gain weight and the dreaded tube is looming. Sometimes she rages and last week said it was my fault she wasn't gaining as I was encouraging her to enjoy life and so she wasn't sitting around on the sofa enough to gain weight!! Great words of wisdom.....

Our grandpa

Tonight we are all thinking about you Grandpa Peter. We want you to feel better and to tell us to stop banging down the stairs.
love and kisses,
Lola, Nancy and Greta
xxxxxxxxxxxxxxxxx

Good bloods today and no transfusion needed .... Lola even has neutrophils! End of term civvies day and she's made it in for lunch and hopefully, the afternoon. Next blood test is Monday morning, so fingers crossed we all get to enjoy the Easter holidays, eat copious amounts of chocolate and put on some serious kilos!

AAAGGGGHHH...............!! Food frustration. You can mix as many teaspoons of Maxijul carbohydrate powder into spaghetti bolognese, white sauce, pesto, custard, apple pie etc etc as you like, but unless they are actually eaten they do not help weight gain! I am losing track of the times I am emptying the bin which fills up with rejected food. Poor Lola, she is sick to death of me 'accidentally' leaving chocolate buttons around, cutting sandwiches into cartoon characters and sneaking Polycal into a glass of ribena. Whilst Nancy, Greta and I plough our way through all butter pastry, custard made with cream and super rich pancakes with chocolate spread, Lola manages a few nibbles, feels sick and has to lie down. She's down another 0.6kg ... basically 2kg to gain in 2 weeks if she is to avoid an ng tube.

She is vehemently against the idea and I don't blame her. It makes her look poorly, feels disgusting and has a tendancy to reappear if she is being sick. BUT, for lola it did work. She has managed to remain around 30kg throughout the treatment so far and the feeds are completely balanced so her diet was complete, despite being limited, while she was on night feeds. It was also a quick and easy way of administering nasty-tasting medication. Things may turn around over Easter I suppose ... if not, I'm not sure I envy the poor nurse who gets the job of popping one down during our next in-stay...

I spoke to Amos a few days ago and he confirmed that the histology results did indeed indicate a 'brilliant response'. In terms of treatment, it means no high dosage chemo/stem cell replacement and no radiation. Lola will continue to have 7 more doses of VAI chemotherapy at the same 3 week intervals. If all goes according to time, beds are available and infections stay away, then Lola would be due to complete her treatment programme towards the end of August. Amos would not be drawn into a discussion on the implications of the histology on a longer term prognosis, but did say that it obviously places lola in a much more favourable group. I think I knew that answer but had to ask anyway!

Bloods tomorrow and with my untrained eye and Lola's self-awareness, I think she is not yet anaemic enough for a transfusion. Could be wishful thinking, but I'm sure I see colour in her cheeks and lips!

histology

Last night, after a few days in Addenbrookes with Lola on her first chemo since surgery, I arrived home to a letter from the Royal Orthopaedic Hospital in Birmingham.
It reads,

"I am pleased to inform you that the tumour has been completely resected from Dolores right humerus and there was indeed 100% necrosis. This is obviously very good news and we have informed the oncologist that she may resume her post-operative chemotherapy."

Nancy and I read and reread the letter, then struggled to reach Lola and Martin by phone. My heart was exploding with happiness that the chemotherapy that had been so gruelling for Lola appeared to have killed all the Ewing's cells in the tumour... ALL of them. The best possible news we could wish for at this point in the treatment. Lola's reaction was, typically, understated... "Great...".. and back to the film!

Despite obviously feeling elated at the result, in contrast, I am all over the place! Having passed the half way mark, with good, no, great response under our belts, for some unknown reason I seemed to realise last night that Lola has, or had, cancer. All the way through the treatment so far, I have tried really hard to remain pragmatic, take each day and value it as it comes, remain aware of all the possible outcomes. I have never sought out statistics, preferring to look at my child as an individual. I have certainly come to believe in the strength of united positivity, hope and love ... it's helping Lola, all of us, through some tough times.

I can't explain the emotions that surfaced with the letter except that, when I acknowledged good news and real hope, perhaps I allowed myself to think a little more about what's happening. Until we have a consultation with Amos, I'm not clear what the histology results mean for Lola. I want to hear that the cancer is gone, forever, and that Lola is better. I know that no one can tell us that, only time. I know too that she still has to complete the next series of treatment, I think 7 more sessions of chemotherapy over the next 6 months or so, so the risks of neutropenia, temperatures, fungal infections etc are still there, and weight loss. The difference is, I suppose, that we now have proof that the chemotherapy works for Lola, that it did kill the tumour, and that she isn't going through the discomfort in vain.

and now....

... the final stage of treatment begins, we hope! We are back at Addenbrooks for chemotherapy, five weeks since our last visit here and it's strangely like being back with an old friend. The nurses were all pleased to see Lola looking so well. She currently has over 300 platelets, a neutrophil count of 3 instead of 0.1 and rosy cheeks. She's proudly shown them that she can still write and can even support her arm without a sling, though I think that's strictly forbidden, and two-handed DS playing is NO problem!

Lots of the children are the same too, but at different stages in their treatment. One little fellow is charging around the ward, full of energy and life and singing away, but due for isolation tomorrow as he's started the mega-chemo. Eventually he will need stem cell treatment to recover. Next to us, a teenage girl, diagnosed with osteosarcoma the week before Lola, has had her leg amputated and is learning, incredibly bravely, to walk on a false limb. Another lad is responding well to his leukaemia treatment but has developed diabetes and pancreatitis as a result.

We still haven't had the histology results yet, though word from experienced fellow parents on the ward is that they should be here somewhere. I will be trying to seek out the elusive Amos over the next few days. Lola's treatment path is determined by the percentage necrosis of the tumour cells. This weekend's treatment is the same regardless - VAI. That's one less drug and one different drug. Apparently, the next seven sessions after this are different again, depending on her response path, but again, hopefully, less aggressive than before.

Sorry to all the people who have called, and I haven't got back to. My new home phone is great for skype but doesnt have an answer machine... a fatal flaw! Despite being at home a great deal, the opportunity to ring people is quite limited. I'm really keen to share my attention equally, and balancing physio, washing and dressing help with stories and pick up sticks before school means the chaos (and washing!) tends to hang around til after the girls have gone to bed.

It's been fantastic this week to feel that life is a little like normality. All the girls have had friends for tea on different nights, I've managed to go along to both Nancy and Greta's swimming lessons and I sewed Nancy's cubs badge on in time (Tracey did it last week!). The herb garden is looking great too mum, although I still haven't planted those shrubs...

my bionic girl

Phew............... it's in there!

On Wednesday morning we bundled everything we could find in our house, or so it seemed, into the car and set off for Cadbury World. Never mind surgery, chocolate was definately the number one priority. Met Nanny Dyllis in time for lunch and spent the next four hours finding out about the history of chocolate, production, packaging, marketing and, best of all, eating! Nancy and Greta were bursting with excitement to be missing school for a few days and Lola was just happy to feel well enough to run, jump and climb with her sisters, something I haven't seen her do for 5months. We spent the night in Gloucester with Nanny and Grandpa, celebrating Grandpa's birthday and Mother's Day early while we were all together.

Lola and I left for Birmingham at 7am the next morning. Nancy really sweetly got up at 630 to sit with Lola while she ate breakfast and wave her off at the window. We were looking forward to the glitzy new children's ward at the Royal Orthopedic and charged into Ward 6, eyes wide, only to discover it was just the same! ... oh well, there's something reassuring about familiar spaces I suppose. We unpacked and went off for Lola's MRI scan. By 10am we were back on the ward and thought we could escape for the day. That wasn't to be. Mr Abudu the surgeon, wanted to see Lola and asked us to hang around until he got a break in surgery.

After a game of everything we could find, a cast of Lola's right hand, a film and Grandad John as entertainment, Mr Abudu finally appeared at 730pm. He talked to us about the operation, explaining where the prosthesis would go in, how it would be attached and how long the might take. He was honest with Lola, telling her that she should regain good movement but was unlikely to ever raise her arm beyond a 90' angle due to the muscles he needed to cut and remove in her shoulder. She was remarkably stoical about it, claiming that she never had any intention of being an athlete but would still be learning to ski! That night, the prosthesis was couriered in from Stanmore and I breathed a sigh of relief, having been fully prepared to drive there and collect it myself if it hadn't arrived. It was unpacked with great ceremony in front of a large audience on the ward and we held it, measured it, photographed it and compared it to Lola's arm (pictures to follow once I'm back to my Mac!).

The nurses woke Lola at 6am on Friday morning with toast and water, which she desperately tried to force down, knowing it was the last thing she'd eat for a while. After a couple of bites and a scowl, she lay down, pulled the blanket up around her ears and went back to sleep until 8! She shed a few tears on waking, feeling scared about the day ahead, but after a cuddle and with the distractions of the bustle and noise on the ward, she was soon up and ready for entertainment. The wait for surgery seemed interminable. Nanny Dyllis came up to be with us, which was fantastic, and we took turns playing games, watching films and trying to distract a desperately hungry child.

At 230pm, Lola went down to surgery. I will be forever grateful that she said 'no thank you' when the porters suggested I ride down on the bed with her! Despite a few minutes of absolute terror and tears when she realised it was really happening, Lola took a huge breath, gave me a squeeze and then chatted and joked until the moment she was asleep. With a rabbit under one arm, a monkey under the other and a box for her wobbly tooth on her chest, we kissed her and she was wheeled into theatre.

The next few hours dragged by and I can remember every single thing we did as if it happened in slow motion... including mum's accidental attempt at theft from Tesco, unpacking the shopping from the basket directly into her shopping bag! Just after 5pm, the nurses told us that Lola was in recovery and that we could go down to her. The route was impossible, neither of us had taken in any of the directions and I could feel myself really starting to panic as we turned wrong corners, struggling to find the right place. It felt like forever, but then there she was, lying peacefully on her right side, a tiny oxygen tube on the pillow, pink cheeks and a beaming smile when she saw us. The first thing she showed us was her gap where the wobbly tooth had been, then said "Look mummy, I can still write", and wriggled the fingers on her right hand. There aren't any words to explain how I felt.

We spent the night in the High Dependency Unit and Lola quickly established a reputation for being a girl who knows what she wants! After a dozy few hours, she lifted her head, grinned at Nanny and said, "I'm feeling loads better now!",wolfed down a sandwich and demanded some TV time. I'm ashamed to say I flagged first and, after mum left for Gloucester, folded out my camp bed and persuaded Lola it was time to sleep. The night passed peacefully until 430am. Lola's nerve block had worn off and she woke in excruciating pain. The diazepam didn't work immediately and the nurses set up a morphine drip so that I could administer a dose every 5 minutes until she was comfortable enough to settle. By 530am she was sleeping again, but it was a harrowing hour and I was astounded by her strength of mind, controlling her panic by breathing with me and asking me to hold her head really tightly.

By 7am we were watching 'Annie'and lola was hassling me to phone Aunty Sarah and Caro to bring Nancy and Greta up to visit. They kicked us out of HDU at 10am as a pair of frauds who were taking up a bed unnecessariy! Back on ward 6, the bed pans proved a disaster and a series of bed changes were needed. Harsh as it seems, this forced Lola to move and although terrified of the pain, Lola gritted her teeth and pulled herself up to sitting with the help of a monkey bar. By the afternoon, she was wearing a sling, clothes and had ditched the bedpan for a commode! Nancy brought home-made sushi for lunch (mmmm!) and Greta, a big basket of buns, which she shared with the nurses and then picked all the sweets off.

Martin took over at tea-time and the girls and I went back to Gloucester for Grandpa's birthday dinner. They were glued to my hip all evening. I must have been running on adrenaline because, putting Greta to bed at 830, I realised I couldn't stay awake a moment longer, crawled in next to her and didn't wake for 12 hours.

We've been to see the new-born lambs and a foal today, shared Mother's Day lunch with Great-Nanny Bessie, Nanny Dyllis and two brilliant Aunties, and Lola rang to say she has walked across the ward to the bathroom and is off the morphine drip. She now has a titanium shoulder ball and humerus, a large but beautifully stitched wound and, from somewhere unfathomable, a whole new burst of strength and determination. I am incredibly proud of her courage in facing the frightening prospect of surgery, and bravery in dealing with severe pain and discomfort. For now, and hopefully forever, the cancer is out of her body.

oops... forgot to add...

Thanks, Charlie for this link.... I wanted to share it with others.......http://www.bechildcanceraware.org/2010/02/jazmine-lewis-by-jadi-lewis/

AND... belated congratulations to you ALL on the arrival of Bobby.... the minute we're back from Brum...!!

surgery date...

Long, long overdue I know.... where to begin.. Lola spiked a temperature the weekend before last and ended up with a short spell in Ipswich hospital. One bag of platelets, two bags of blood and 48 hours of IV anti-biotics later and she was ready to roll, BUT she needed a kidney filtration test and echocardiogram first, so she was contained for another day and almost clawing the walls. Freedom beckoned at 230pm on Tuesday and Lola had a fantastic week, going from strength to strength as her bone marrow recovered from the chemo. Its amazing to see her with colour and energy, skipping around the kitchen and helping herself to snacks from the cupboard. Despite being ng - free for almost a month, her weight has remained a stable 30kg and she is eating more than I have seen for 5 months. She's been at school almost every day for a week and is even staying for school lunch!

Surgery.... that's been a little more complicated and probably the reason I haven't updated for a while. Several weeks ago we were given the 8th, 11th or 12th March as surgery dates but told confirmation would not be given of the exact date until Weds or Thurs of last week. I spoke to the Macmillan Nurse and Lola was all revved up and ready to face the surgeon. Wednesday came and went... no news. Patient as I am (??) I managed to wait until 10am on Thurs before calling Birmingham, only to be told that the order for Lola's prosthetic arm was still sitting on the surgeon's desk waiting to be signed. This meant that surgery wouldn't take place this week as the limb takes 7 to 10 days to make. I persistently phoned for updates but was not able to speak to the surgeon or Lola's oncologist. Eventually, Amos Burke, her Addenbrookes oncologist, called me back and was hugely upset about the delay but unable to offer a solution.

By yesterday morning I was turning cart-wheels with frustration, called Birmingham for an update and was told, to my horror, that the form was still unsigned and the prosthesis remained unordered. Worse still, when Amos called me back, he was clearly very upset and reluctantly broke the news to me that Lola would not have surgery for another 3 weeks as the surgeon was going on holiday, that she would require an additional 4 day stint of chemo to cover the delay period and that, having had extra chemo, she would have to be withdrawn from the Euro-Ewing 99 research programme she has been a part of. In short, despite having had stem cells harvested in preparation for a mega-chemo if the histology is not good, she would no longer be eligible for the treatment!

I can't begin to explain how I felt about this information. So far, despite the harrowing nature of the treatment and the sadness of seeing my child in discomfort, distress, lose weight, hair and confidence, I have always felt reassured that she is getting the best possible treatment available to her and therefore, has the best possible chance of a full recovery. To know that, through someone's carelessness, she would need to go through an unnecessary dose of toxic medicine which her body is finding it increasingly hard to recover from and then face the possibility that her chance to receive potentially life-saving treatment was now denied to her, was heart-breaking, frightening and infuriating in equal measure.

Having cried, stomped and turned in circles of ever-increasing frustration, I knew I needed to persist until we had an outcome. I wasn't prepared to accept that Lola was going to be removed from the research trial. The hardest thing was knowing who to contact and where to find them. Leaving messages and waiting for the phone to ring can be the most agonising time. I will never know whether a bit of family string-pulling influenced the situation, or my mention of 'medical negligence', but I received a phone call yesterday afternoon to say that engineers were building the prosthesis in Stanmore at that very moment, that it was due to be couriered to Birmingham and that Lola would be added to Mr Abudu's list on Friday afternoon! I think I ran the full range of emotions yesterday afternoon... thanks Joe for putting up with a wet shoulder, for forcing me to write it all down and for just sitting it out with an inexhaustible supply of love and patience xx

So.....I speedily shopped for hoodies and books this morning, packed 4 bags and put the contents of my fridge into the bin! The girls (excitedly!) told their teachers and collected some homework. Tomorrow, bright and early, Lola, Nancy, Greta and I head off to Cadbury World (thanks Elaine for that genius idea 5 months ago!). We meet Nanny and Grandpa, eat too much chocolate and then throw up in the car on the way back to Gloucester for the night. On Thursday morning, Lola and I will be in Birmingham Royal Orthopaedic for 830am, book in, get MRI scanned (again!) and meet the surgeon. We'll explore Ward 6, unpack our ENORMOUS bags and bide our time until she's taken to theatre sometime on Friday afternoon. My heart is beating hard but she is so ready........

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!

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!