Christmas 2009

Merry Christmas......desperately overdue post... sorry!
We have been having a fantastic time and the 'C' word was banned until Boxing day when round 4 of the chemotherapy began... hence the silence. Lola has been incredibly well for 3 weeks now. Even when she had a line infection during the week before Christmas, and spent time in Ipswich hospital, she had energy, humour and even a small appetite. She responded well to the anti-biotics and thankfully didn't need anything more serious done. We were allowed to to and fro daily for treatment and ended up having an amazing adventure together in the snow when we got stuck on the Orwell Bridge! All was clear on the way to the hospital at 730pm but by the time we left at 9pm, in the midst of a blizzard, the roads were almost unrecognisable. A lorry jack-knived on the Bridge and all the cars behind it were stranded until 230am... including Lola and I. Luckily we had lots of fuel, blankets and a mobile. Lola hopped into the back seat and promptly fell asleep quite happily. Thanks to Manda and Paul for giving us a bed when we escaped from the bridge!!

I thought it was too much to hope for to have Lola home for Christmas Day, but we made it. We spent Christmas Eve singing carols at Pinmill Sailing Club... thank you for the VIP parking space... and later, three exhausted girls hung out their stockings and were asleep by 11pm. At 630 the next morning all three piled into bed with me and I watched through the one eye that would open as they tore through Santa's gifts and then sprinkled sherbert and chocolate over the sheets. I have honestly never enjoyed Christmas Morning so much... it's certainly true that you appreciate everything so much more at times like this. We ate chocolate for breakfast and played with Sylvanians and games until lunchtime. Thank you for all the presents we received... not sure if the bedroom doors will ever close again!

Lola has coped wonderfully with the chemotherapy this time. She is incredibly independent and knows an awful lot more than I do about the machinery she is constantly attached to. Her nasal gastric tube was replaced on Tuesday, something she was really afraid of, but she seems to have over-come her fear and can now adjust it herself.

We learnt about stem cell harvesting today from Amos, the Paediatric Oncologist. One of the treatment paths following surgery involves a particularly fierce, one-off dose of chemotherapy from which the body is unable to recover without cells regenerated from its own bone marrow. In order that Lola has the option of this treatment should she need it, Addenbrooks will be gathering stem cells from her blood at some point next week. Today she had a tiny canula fitted to her leg and every day for a week she will need to have an injection called GCSF which encourages the bone marrow to generate neutrophils and stem cells. On the 5th or 6th of January she will be rigged up to a machine which spins her blood and removes a collection of stem cells which are then stored for later use. Hopefully, they will be able to harvest enough that the procedure will not need repeating next month. I feel constantly amazed by the incredible things that can be done to help Lola recover.

One more night at Addenbrooks as everything is running late here. The poor nurses are looking flushed and a little bit harrassed as C2 is full to bursting, but they still make time for everyone...they are fantastic.
Home in the morning.... we can't wait!!

I have absolutely everything crossed that Lola's temperature remains below 38C long enough for her to take part in the school performance tomorrow night. If things are fine in the morning then the thermometer remains firmly on ice until 8pm! She says the dress rehearsal was terrible today - isn't that supposed to be a good sign?
She's had a fantastic week... a visit to Handford Hall with me yesterday where everyone made her so welcome - thanks, Chelmo school in the afternoon and a full day of school today. She gets such a warm reception from her class-mates at school that, despite getting really tired, I think her spirits soar. I even phoned at lunch-time offering to take her home to rest and was very firmly dismissed... not sure who struggled with a full day more!
Last night we watched Greta and Nancy perform in their Christmas Plays and, when I learn to upload photos, I will share pictures of a very cheeky King's Page who wriggled, grimaced and giggled all the way through the "Sleepy Shepherd" and a rosy-cheeked Nancy, fiercely crushing her best friend's hand in terror, whilst she sang a solo in "Button Box". I thought she sounded beautiful, but I am well aware that I have parental bias !!!
Tonight, Lola decided that she is going to have a dinner party and lay in bed with the lap top planning her menu. She assures me I only need to assist... it's HER thing! It's great to see her interested in food as only a few weeks ago she couldn't bear the mention of it.. now I have a shopping list with cream, smoked salmon, linguine and chocolate on! She's planned the seating and guest list too... must have inherited my organisational skills...oh, alright then, YOURS, mum!! It looks like the run up to Christmas may be busy.
It's Nancy's 9th birthday tomorrow and Lola has chosen and wrapped all the presents, written the cards and generally made sure her sister is going to have a good time. Nancy is desperately excited and has promised us a 6am wake-up call followed by a present-opening session in MY bed before school. We LOOOVE birthdays! We are making pizzas at Lucca in Manningtree as a birthday treat next Monday - another date to keep that temperature down for. I am running out of things to cross!

I met a little girl and her dad on our very first visit to Addenbrooks, before the biopsy, just the day after Lola was diagnosed with cancer. The little girl had a sarcoma in her arm too but was a little further down the line and had just had surgery to remove the tumour. She was confident and happy and he was positive and kind. So kind that he recognised my shell-shocked, frightened look, took my number and that night he called me. He talked to me about the treatment, about feelings and about practical stuff too. He was really incredible. Something I held on to at that time, and has a real resonance now, is that he assured me that I would be surprised by the good things that came out of our experience. That is proving to be so true.
Having finished chemo on Friday, Lola was reluctant to attempt school today. I trust her instincts. She loves to be there, but knows her limits. We spent the day together wrapping presents, visiting the hospital for blood tests and (unsuccessfully) searching for a new coat for her ... and she is happy, tolerant and so open at the moment. October and November were spent treading on egg-shells sometimes. It was difficult to see her feel so wretched after treatment and accept that she needed to express her anxieties and frustrations, whilst still maintaining boundaries. The shock of seeing her looking so fragile and exhausted sometimes made it hard to step back and let her be, and equally hard to step in and draw the line.
Something has changed in the way she is responding to the chemotherapy this time. Perhaps her body is tolerating it more effectively, maybe the anti-sickness medication is well-matched to her needs, I suspect that the night-time feed increases her resilience... who knows? But she is coping so incredibly well and developing a calm understanding and self-awareness that is just lovely to be around. At the moment, life feels a little like 'normality' but with a constant awareness of how precious each of the 'normal' moments are. It's strange but good... for today.

We are back in Addenbrooks for the third round of chemotherapy today and feeling GOOD! We weren't sure until the last minute whether they had space for Lola and her school uniform went on... just in case. Now we are sitting by an 'invisible' bed hoping one will materialise before bedtime but enjoying the space in the meantime! It feels a bit like visiting family each time we come to Ward C2. You see familiar faces and get a really warm reception... it's truly lovelier than you would expect. Lola has put Mick to work immediately, requesting pie, mash and gravy almost as soon as she walked through the door. The Play Specialist has provided us with piles of colourful and shiny paper, glitter and stickers so the characters in Lola's nativity will be well dressed by Friday evening.

The Doctor assessing Lola today was pleased with her progress. As the therapy protocol she is following is a particularly gruelling one, she explained that they would not have been surprised had Lola developed more serious infections between rounds of chemo. They are also pleased that her blood count has recovered well both times, meaning that chemo is running to time so far and that they don't need to tweak the dosage. If her counts recover as well this time then she will have the next round slightly early and come out of hospital on Christmas Eve. Fingers crossed!

No MRI results yet but, as her tumour has visibly shrunk, they are pleased that the chemotherapy appears to be doing it's job and said they would be very surprised if the scan didn't confirm this.

I spoke to the Specialist at the Royal Orthopaedic in Birmingham about surgery yesterday. She was so helpful and reassured us that 'shoulder and upper arm replacement' means removing the ball from the ball and socket joint and the rest of the humerus to just above the elbow and replacing it with a metal one which will 'grow' with Lola. It still sounds dramatic but I wondered whether 'shoulder' included the socket and beyond... and I am hugely relieved. We are most likely to be in for surgery in March and, if all goes according to plan, would be in Birmingham for 7 to 10 days.

Stop press...Just found out that Lola has a fracture which showed up on the MRI scan taken last Monday! Apparently it's really common at the site of tumours, due to weakness, and is called a pathological fracture. We are waiting for someone from orthopaedics to come and tell us more, but nothing to be alarmed about, we're told.

Back to hospital TV and "Carry on Doctor".....

We are having the loveliest weekend!

Lola is really on form.... Christmas shopping at the Suffolk Food Hall with Uncle Paddy (and lunch- Lola's idea!), more Christmas cards, X Factor and baby-sitter fun last night. DIY, bedroom reorganisation, even MORE cards and a roast lunch at the Red Lion today ( Lola's idea round 2!). Nancy was proud to take her new hair-style public and Greta and Eva had some serious catching-up to do.... all definately deserving of a sleep on the sofa in front of The Secret Garden this afternoon.
It's so good to have my girl back!

Gilly, thanks for a lovely evening, your curries were delicious and it was great to see everyone too. Needless to say, the girls loved the fact that I wasn't there policing bedtime and my separation anxiety was completely unnecessary.

Ben, ooops... Flash, I LOVE your idea and so does Lola.... you made us smile sooo much this morning, thanks. I won't say any more just now... x

Nancy and Greta weren't quite convinced about having their heads shaved today at the hair-dressers... even by a super-persuasive big sister... I was NEARLY tempted! Nancy is now straight and bobbed (and mirror-fixated!) and Greta looks like Nancy used to. It's all very confusing...
Paddy has been "Uncle from Heaven", hanging bathroom shelves, coat racks and even fixing our broken loo seat - Nancy blames the 'boys' that come to our house!!? Door bell tomorrow. oh, and maybe the extractor.... don't want to push my luck...
Lola has been 'organising' the making of Christmas cards so we all have glittery faces and inky fingers. She has elected to write them during next weeks' chemo session - sounds good to me. We also emptied the lock up a little bit more so visitors are only welcome now if they shuffle sideways down the hall, very close to the wall. I'm sure we didn't used to have this much stuff....
All three girls are highly excited at the prospect of a Sylvanian-loving, X-factor-watching babysitter tonight. I'm feeling a little more anxious. It's a bit like leaving a new baby for the first time.... and I'm only going across the road! I will try very hard not to phone every five minutes as I KNOW I am in grave danger of being told to "Get a Life" by a pixie with attitude...

We are stii in isolation.... Addenbrooks room F is truly the 'naughty step' of Ward C2... I wonder what we did? No windows, no signal... except, for some strange reason, right now, and no heat. There is a strange air conditioning system which blasts out cold air day and night and there's no turning it on or off! Thank you to everyone who rang us on the extortionately expensive hospital phone.... I know you were secretly worried for my sanity! We have everything crossed that Lola's temperature will be below 37.5C at 7pm because we will then be out of that door, night feeds and medication in hand and heading for home. Lola is desperate to sleep in her own bed!
As she is still suffering from pain in her oesophagus, Lola is really reluctant to eat anything at all. Even Mick, the C2 Wonder Chef, is finding it impossible to tantalise her with soft, mushy treats from the kitchen. The night feeds drips in over 12 hours but only provides half of the nutrition she needs so it's really important that she starts to develop an appetite again. Not sure my cooking will do the trick.... Longer term, it's most likely that they will fit a 'peg' which means that she can have a direct stomach feed and do away with the horrible nasal tube. Talking to other parents here, it seems that it's really common for the children in oncology to need them and at least gives me the peace of mind that she's not wasting away (will also reduce the verbal abuse I get when I so much as whisper the word 'food'!!)
We are due back here on Tuesday for MRI scan results and round 3 of the chemo... halfway before surgery. Lola is more curious about that now and I am hoping to speak to the Specialist Oncology Nurse in Birmingham Orthopaedic tomorrow. The surgeon explained to us, the night of her biopsy, that he would be repacing her upper arm and shoulder with metal ones and that they would have screws inside to enable them to 'grow' with her. At the time, that was about all we could take in. Lola is now beginning to be curious about movement, and 'how' and 'how long'. I suppose I am too.

Feels like a long silence! Where to begin... After a few lovely days in school and a tiny bit of normality, Lola developed chest pains on Thursday evening. Eventually they became so uncomfortable that she was admitted to Ipswich hospital for an ECG and chest xray. Thankfully, they appeared fine, but it seems that she has developed gastritis and mucusitis - inflammation and ulceration in her oesophagus and stomach lining. She has been in a lot of discomfort and unable to eat as a result and now has a nasal gastric tube to allow her to regain some nutrition through over-night feeds. It was truly awful to see her so upset and uncomfortable when the tube was fitted. It must have hurt so much because of the ulcers inside and it was the first time I have heard her say "Why me?" She has been so philosophical so far... but I was asking it too.
Since Friday she has had a temperature and undiagnosed infection, so more IV antibiotics and splendid isolation in Ipswich hospital. Yesterday, she was transferred to Addenbrooks for assessments and an update MRI scan of her tumour. We should get some results tomorrow, though no-one really explained what they would be looking for... I suppose evidence that the tumour is shrinking in response to the chemo. I'm missing her like crazy, I think because she looked so poorly when I left the hospital on Sunday night. Martin says she is eating bread and jam, which is fantastic, and her temperature has fallen, so perhaps she will be home again by tomorrow night? Unfortunately, I'm not allowed onto the ward until tomorrow because I was sick yesterday.... self-inflicted maple syrup poisoning!

A full day of school today AND a huge appetite... go, Lola! She must be feeling good today as I got lots of cheekiness earlier...Great excitement at a part in the school play which involves numerous hat changes, apparently.
Seems I gave birth to a 'mover and shaker'... Lola has persuaded school that the funds raised on Friday for non-uniform day (and Children In Need day) should go to the Make A Wish Foundation instead. She volunteered to stand in front of the school and tell the children what it's all about and the vote was unanimous! Didn't inherit that influential streak from me!!

I left to take Nancy and Greta to school this morning, leaving Lola in Nanny's kind and capable care, but feeling really teary that my big girl was lying on the sofa with tummy ache, looking pale and tired. She'd been lively and super-hungry the night before and we were all hoping she'd make it to school, at least for a little while. When I phoned home to see how she was feeling a little later, there was no reply. My imagination went into over-drive and I had temperature anxiety for a little while... then I received a text..."On a school trip with Nanny".... !!
It seems the tummy ache passed quite quickly with the help of a bowl of cocoa pops and a magic tablet and Lola went into school all ready for literacy, only to discover that her class had gone off to Capel St Mary for a lesson in playing Gamelan. Not to be defeated, Lola hopped on the coach with Nancy's class, Nanny in tow, and spent 2 hours creating curious sounds with Year 4! It was fantastic to hear her excitement at being able to join in.... and Geography is on the agenda for tomorrow afternoon.
Having mum here has been sooo good and I'm sure there will be a sit-in protest when I start cooking dinner again tomorrow night! My house is tidy, my iron has started to beg for mercy, there are home-made cakes AND I have been to work for 2 out of my 3 days so far this week. We even made it to the cinema tonight too! In fact, I am seriously considering locking her in tomorrow to prevent escape .... she is a complete STAR! x

Lola wanted to share the piece of music she created with the music therapist at Addenbrooks last week. She's feeling perkier by the day!!
CLICK HERE TO DOWNLOAD IT

Lola left Addenbrooks last night after a day of feeling sleepy and sick, and is now having a lovely lie-in at Martin's. For her four days of treatment she is constantly attached to a drip which feeds in fluids and medication through a Hickman line. The line avoids the need for repeated injections and canulas and was fitted under anaesthetic just before the chemo began. It runs under her skin to the vein in her neck and she has a small bunch of tubes which hang outside her body at her chest.... known as a wiggly! Addenbrooks run a sophisticated line in 'wiggly bags' which hang around the neck and keep the small connectors clean and safe when not in use.
Between treatments, the oncology nurses visit at home twice weekly to take blood samples from the line and flush it to keep it sterile. We record the blood results which helps us to see when Lola is anaemic, has reduced/no immunity ( called neutropenia) and when she might need a platelet transfusion. Her spell in hospital coincided with neutropenia last time and a combination of IV antibiotics and a blood transfusion increased her counts which enabled her to fight it and come home again.
All being well, Lola now has two and a half weeks at home before round 3. For the next few days she will probably feel nauseous and exhausted, then her blood counts will be at their lowest while the chemo does its work for a week. She may feel ok but her resistance will be very low. For the final week, her blood begins to recover, her levels rise again (hopefully!) and then she'll be ready for the next spell at Addenbrooks.
It's a harsh regime, but the families we have met so far are reassuring that you fall into a pattern and take each day as it comes. The Doctors advise life to be as normal as it can possibly be.. school when Lola is up for it, friends as long as they are not ill and the occasional visits to friends and family as long as the local hospital know we are nearby! Sadly, no trips abroad until Lola is better, but be assured that we will be increasing our carbon footprint just as soon as Lola is well again.... USA, France, Italy, Poland and Qatar in round one! xx

sisters

hi this is nancy .talked to lola she sounds tierd but she is sounding a bit better to me .she is having dinner.i think she will like the jokes.
this is greta. nock nock hoos there p p hoo er!!. love greta xxxxxxxxxxxxxxxxxxxxxxxxxxx

Another busy day so far. Hospital School this morning researching Norwich and Chelmondiston... Lola said she would have been more inspired by Paris and New York, Mr Lewis! Music Therapy this afternoon :-) and a composition on Garageband which I am under strict instructions to attach to the blog.... ummm, technician... sorry, Creative Director, support required once again!
Lola seems to be coping really well with Chemo round 2 so far. The anti-sickness drugs are doing their job at the moment and she has been able to demolish egg sandwiches easily. As a naturally 'petite' girl, Lola is right on the edge of being too light, so the dietician has given her some mega-calorie milkshakes to try to halt the weight loss... fingers crossed.
Message to Uncle Phil.... "get that 'tache picture on my blog! love Lola xx"
Message to Izzy and family... " the dog is officially called Douglas! love Lola xx"
Message to Ellie..."get better soon. love Lola xx"

Bed G4 on Ward C2 in Addenbrooks was a lively place to be this afternoon! Lola had a surprise visit from Charlotte, Elsie and little Innes who happily sang, danced and drew funny pictures, distracting us all from the first bag of chemo which dripped away unnoticed. Thanks Charlotte, for taking me to the cash-point and saving me from 2 days of toast, toast and more toast.... I left my purse on the kitchen table!!
Jamie and Carrie came over later after Carrie's radiotherapy session and the girls shared hats and swapped hospital stories.... more giggling...
Lola shared the cakes she made for the nurses (I only ate ONE Tracey!) and Mick the Ward Chef has tempted Lola into a huge dinner while things are still appetising. I suspect I am about to be completely thrashed at Crosstrack... it requires strategic thinking Sara!
Thanks again for more lovely messages...can't wait for the hats, Louise... might have to try and initiate a Happy Hat Day at Chelmo when they arrive... you're a star. Nancy went to school in a bandana today in solidarity :-)
I understand it's tricky to become a follower of the Blog and post comments... the 'technician' is on the case and I will share his words of wisdom (!?) soon as! Lola and I LOVE reading your posts so please keep trying xxx

Lola asked me to deal with the remaining hair tonight and the clippers came out... thanks Sally!! She looks beautiful... big eyes and a wide, cheeky grin. Greta wants her hair cut at the weekend now! Hats have been sorted into 'itchy' and 'non-itchy' (Nancy took possession of the 'itchy' pile!) and there's a strange sort of relief all round.
We baked cakes this afternoon but we're not allowed to eat them. Apparently they are coming to ward C2 tomorrow to share with friends and nurses. I think she's trying to instigate Chelmo School Bun Day at Addenbrooks!
Thanks from us all for all the lovely messages and we will add some piccies soon (just as soon as I learn how!!)

Hot dogs, sparklers and very smiley girls last night! Niamh saved Lola from boredom by adult and gave her the thumbs up on her new hats and bandanas. Temperature has remained safely below 37C :-) so she kicked the infection.
As round 2 of the chemo begins on Tuesday we shopped for a very funky suitcase on wheels today - black with big yellow spots and used by Greta to knee-cap several people in TK Maxx! Also some new board games - don't know about Lola but I can't quite face another game of monopoly just yet... any suggestions welcome!
And... we love Skype!!

Lola is so much better today... perky and cheeky... sitting in a chair doing school work set by the hospital teacher! No real idea what caused her temperature to spike but a combination of 5 different intravenous antibiotics and antifungal medications seems to have done the trick. Freedom from hospital after 10pm tonight, which probably means tomorrow, just as long as there are no more nasty 38C surprises.

Her hair is coming out rapidly now but she is fast gathering a collection of funky hats and is being very matter-of-fact about it. Her biggest fear is that it will grow back curly like mine!!

Next chemo starts on Tuesday at Addenbrooks so we might even be home for the weekend.

Lola has had her first chemotherapy session at Addenbrooks and managed a week at home before catching an infection... She's now in Ipswich hospital and keeping all the nurses on their toes... bored and fed up in isolation and REALLY hoping to make it home for some fireworks!

What is Ewing's Sarcoma?

In 1921, James Ewing, MD, described a bone tumor that, unlike the common bone tumor, osteosarcoma, could be treated with radiation. This newly identified tumor became known as Ewing’s tumor. At first, this tumor was only seen in bones. Soon, the same type of tumor was detected in the soft tissues and named extraosseous Ewing’s.

It can occur at any age but are most common in the early teen-age years. Most occur in the middle of long bones of the legs or arms, unlike osteosarcoma, which usually occurs at the ends of the bones. Tumors can also occur in the pelvic bones or in the chest near the ribs.