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".....