1 February 2017: the weight of years

Here’s Lennie on January 31, 2012, at 9 months.

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He’d been out of sorts for a few days. By this time we were worried, particularly about his sight – he didn’t seem to be responding to visual cues.

The next day we went to the nurse at Center Parcs. She shone a light in his eyes, and then was very calm, kind and firm – ‘I’m not getting any reaction, you need to go to hospital’. She phoned West Suffolk hospital and prepared the way for us. She was brilliant. In fact, she’s on the long list of people who have saved Lennie’s life – I only wish I remembered her name. Everything happened very quickly after that. We were surrounded by doctors, moved through the system very quickly, met a lovely paediatric consultant called Catherine (easier name to remember), he had a CT scan, they told us he had a tumour, Catherine spent the whole afternoon on the phone to GOSH begging them to take us, and that evening we went by ambulance to the high dependency unit in the neurology and neurosurgery ward. At that point we didn’t know what that meant. We just knew that he had a tumour, had temporarily lost his sight, and needed an MRI scan. We were scared by the machines and wires and beeping surrounding our tiny boy, and didn’t sleep.

We don’t have any photos of Lennie from 1 February 2012. Just a couple of Zoe at Center Parcs – Ed stayed there with her for a few extra hours, to give her the chance to enjoy the holiday before we had to cut it short. He didn’t say ‘Zoe, please could you stare into the middle distance wistfully so that we can share this photo in 5 years?’ But he may as well have done.

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Lennie was diagnosed with a rare bone cancer in his skull a few days later. Here he is on 4 February 2012.

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And here he is in December, back at home after a gruelling 10 months of treatment which battered his poor body nearly to breaking point – but it worked.

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Since then, we have all been adjusting to life post-2012. A great deal has changed.

Lennie has experienced a litany of side effects which will be with him for life – and of course his sight loss is permanent. We have all become very hospital-literate. We’re off for another MRI scan tomorrow morning at GOSH – we’ll saunter in and be greeted like long lost friends. It’s hard to remember how alien it seemed when we first arrived five years ago (and how easy it was to get lost in the corridor warren).

Ed and I have separated – or as Zoe puts it (ever the optimist) ‘I have two houses now’. It’s hard at times, but we’re making it work.

Zoe is a grown up, wise, funny 9 year old, who constantly amazes us – and still takes a good wistful photo.

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And Lennie is 5. He’s strong, healthy, independent, hilarious, and drives everyone up the wall on a daily basis. He can get himself about the house and school, use a cane, go to the toilet, run himself a bath, stack the dishwasher (badly), play the piano, recite entire episodes of Peppa Pig with the voices – and makes more noise and mess than the rest of us combined. We’re struggling with his behaviour and with supporting him to learn and develop – he’s got lots of complex needs and we don’t always get it right. But (and this is the thing that hasn’t changed) we have a world of support from family, friends and the countless professionals who have invested so much time and energy in his care.

It helps to mark February 1st. That day 5 years ago sits heavily in my mind, but I feel better for writing this – thanks for reading.

 

 

 

 

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Monday 19th September – Oh Happy Day

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This is Olga. She is Lennie’s Oncology consultant at Great Ormond Street. Every day she meets families like ours, at every stage along the uncertain, often cruel paths cancer will drag them down.

She was the one who told us, on February 5th 2012, that Lennie had been diagnosed with a Ewing’s Sarcoma growing out of his sphenoid bone, which had crushed both of his optic nerves.

In April that year, she gave us the news that the first six rounds of chemotherapy had not shrunk the tumour as much as they hoped – and that proton beam therapy was the best option, despite its potentially severe side-effects.

In January 2013, we celebrated with her as Lennie’s Hickman line – through which all of his chemo and other medicines had been delivered – was removed, marking the end of treatment.

In the following three years, she has met us a dozen times, each time to tell us scans have shown that the tumour had not grown.

And today – this truly wonderful lady told us that not only was last week’s scan ‘stable, no growth’, but also that this was his last one.

The bastard tumour has been officially pronounced dead.

We will still get to see her, once or twice a year, for a check-up, and for her help in coordinating the various appointments with other parts of the GOSH team – endocrinology, neurology, opthalmology – which Lennie will continue to visit. There is a long-term commitment to him that goes beyond this oncological line in the sand.

So while it’s not all done, and there’s more hard work ahead, Lennie, with the help of Olga and her colleagues, has beaten his cancer.

Well done, precious boy.

 

 

 

 

16 May 16: expect the best

Lennie’s tumour hasn’t grown; it’s still stable. That means he’s inching closer to remission, a word we’ve been looking forward to hearing. After five years, the risk of recurrence is much much lower. Even better news – Olga explained today that the clock starts at diagnosis, rather than at the end of treatment. That means that we can hope to start using the word ‘remission’ on 1 February 2017, five years after he was first diagnosed (not December 17, as we’d thought). For the first time, it feels within reach.

There is other news – Lennie’s scan showed ‘further vascular changes’. This may mean that the blood flow to his brain is not improving, despite the operation he had in December. But we don’t know any more about this yet – we need to see the neurology team as soon as possible to find out. We’ll keep everyone posted.

My mum said, at the very start of all of this (February 2012) ‘expect the best and take what comes’. I’ve almost certainly quoted this before, it has helped me lots on the many occasions we’ve been waiting for news. We’ve found that we don’t often get unqualified good news – I think that is probably true for everyone living with a long term medical condition. We’ll take the good news today – we’re very very happy that Lennie’s tumour hasn’t grown in four years and four months, and might never grow again. We’ll deal with the other news when we know more. *cracks open the prosecco*

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Wednesday 27th April -Slight delay

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It’s been five months since Lennie’s surgery, and the stroke which followed in its wake. The scar is now pretty much healed up, and he’s bounced back well. The daily injections of growth hormone he’s been having for 18 months seem to have kicked in – he’s gone up a couple of shoe sizes and we’ve been editing a lot of clothes out of his wardrobe which no longer fit him.

He continues to really enjoy school, with the help the fabulous team around him, although his progress has slowed a little. The extra effort he has to put in to process the world around him is a drain for him, and when he gets tired, he can become grouchy and prone to frustrated outbursts (yes, I know, not unlike his father…).

While he’s mostly bright, sparky and full of surprises (like deciding to ask Kath to teach him French, and learning to play Twinkle Twinkle on the piano completely off his own bat), his behaviour is challenging at times. It’s particularly hard to see him take his frustration out on himself: a quick change of activity, or him not getting his way, can prompt growls and hitting himself on the head, or scratching his hands and arms.  

With all of this in mind, it was really helpful to visit the Developmental Vision clinic at GOSH today. A specialist team, who have worked with him since he was two, assessed Lennie’s cognitive development: in practice this involved a series of games, questions and conversation, which he thoroughly enjoyed. They were pleased with his progress, but their tests indicated that the gap between him and his sighted peers is getting wider – he’s experiencing a ‘slight cognitive delay’.

This is probably due in part to the treatment he had back in 2012 – when we first agreed to his having proton beam therapy, we were told that the side effects could include a severe learning impairment, with memory and language likely to particularly affected. From that perspective, he’s doing brilliantly, and we’re so proud of how he puts himself out in the world with such gusto. At the same, it is hard not to feel daunted and anxious about the challenges he has to face every day, and worry about him being increasingly ‘left behind’ by his peer-group.

Tracking too far into the future can quickly feel precipitous and exhausting, with so many possible hurdles he may have to overcome, and the likelihood that there will be some he won’t be able to get over. But on good days, it is easier to stay focused on the present, enjoy his predominantly jovial company, and celebrate his steady progress.

 

 

Sunday 20th December -Inside Out

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It’s been a fair old week.

Lennie was admitted to Great Ormond Street last Sunday, in preparation for having EC-IC (Extracranial to Intracranial) surgery. This is done to increase blood flow to the brain – in Lennie’s case, it was needed as the growth of the arteries around his brain had been affected by the radiotherapy he received back in 2012. The procedure was done on Monday morning, and initially all proceeded smoothly. Aside from some swelling and bruising, he was recovering well: well enough to be discharged on Wednesday morning.

Sadly, the following day, Kath noticed that his speech had become slurred, the left side of his mouth was drooping, and he seemed a bit disorientated. We had been warned that a stroke was a risk – occurring in around 5% of cases following an EC-IC. So back into GOSH we went – a CT scan confirmed it was a stroke, and he’s been under close observation since then. His symptoms were thankfully relatively mild, and he’s improved day by day: all being well, we’ll be able to head home tomorrow.

This has been the most serious bump in the road we’ve had since his finishing his treatment for cancer. In many ways it’s taken us back to that intense time – being back amongst the familiar machines and routines on the ward, the juggling of shifts at home and hospital, the nagging, grinding worry. It’s opened old emotional wounds for Kath and I, and yes, that’s been really tough.

But also familiar has been the outpouring of love and support we’ve received from family and friends, and the grace, kindness and patience with which big sister Zoe has borne yet another disruption to our family life. The image below – a ‘star award’ given to her at a school assembly last week – perfectly captures the wonderful human being she is, and reminds me that, whatever else life ends up throwing at Lennie, he will always be lucky to have his big sis.

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Saturday 3rd October – Good as Gold

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Lennie has just finished his first month at school, and so far he’s doing brilliantly. Yesterday morning, in assembly, he was presented with a sticker for getting to ‘Gold’ on his class reward chart: and as he walked up to receive it, the other children started cheering for him.

Clearly, Lennie has worked really hard, and we’re incredibly proud of him: but everyone at the school, from the Headteacher through to those children and their tear-inducingly lovely cheers, deserve our praise and gratitude too. To say the school have been supportive is an understatement: his class teacher, one-to-one support assistants, classmates and parents – everyone has been behind him, and us, all the way. A special mention from me for the staff in the office – their kindness when I landed on them earlier this week in a bit of an emotional state was amazing.

As a mainstream primary taking on their first ever blind child, we would have understood if there had been some trepidation about whether it would all work out. Yet from the first conversations, through all the preparation meetings with Sharon (Lennie’s specialist teacher of the visually impaired, AKA our hero), and through these first few weeks, it has felt like everyone is genuinely excited about making this a success.

For me, it makes me reflect on Lennie’s seemingly effortless ability to bring out the best in those around him: as much as he needs extra support and care, he gives back with his energy, good-humour and enthusiasm.

So while Kath and I would do anything, give anything, for Lennie not to have had to go through what he has endured, we cannot fail to recognise and celebrate all of the compassion, generosity and love he has inspired in others.

That, in all its forms, is the gold that keeps us going.

Friday 12th – Monday 14th September – Scanxious

I write this on Friday night, waiting for the result of the scan Lennie had yesterday.

The balance of probabilities, nearly 3 years post treatment, is that it will tell us that the tumour hasn’t grown – and is therefore presumed to be dead. This will be the 10th or 11th scan since Lennie finished treatment at the beginning of 2013 – so far, all of them have come back “stable, no growth”. So we await those words once more.

Scanxiety is a well-established phenomenon for cancer patients and their families – a sporadic rhythm of distressing inspection played out over five years from the end of treatment.

That takes us to January 2018 – a clear scan in late December behind us, we’ve travelled back to Florida, to ring these chimes –

That’s the plan. I believe it to be a fine one.

But for the moment, here’s the space between right now, and when this season’s news comes in….

Monday, 18.00 – we’re all home, and we’ve (pretty much) got the result we wanted – the official report’s not in yet, but Kath met with Lennie’s wonderful consultant this afternoon, and she can’t see any changes.  So it’s “stable, no growth”, or as good as.
One step closer to the chimes: well done Lennie – X

Tuesday 1 September 2015: Painfully aware

Warning – this might not be my most upbeat blog post – sorry… I haven’t written anything for a while, but with the arrival of September I have been thinking again about Lennie’s illness (it’s childhood cancer awareness month) and about the impact it has had on him and everyone around him, especially as we prepare for him to start primary school in a week.

The start of school is a big thing. Three years ago we went to a ‘new parents’ evening for Zoe, she visited her new school with nursery, we bought and tried on uniform, we talked positively about school, we did a morning of settling in – and off she went. She was a bit nervous, but mostly it was exciting, fun and new. It has been a bit different this time. We (and many fantastic education and health professionals) have waded through mountains of paperwork and attended several ‘Education Health Care Plan’ meetings, just to get the funding for Lennie to be able to go to mainstream school. We’ve had several transition meetings with the senior team and SENCO, and a whole transition day at school. The school have identified two teaching assistants who will work one-to-one with Lennie every day – they both visited his nursery numerous times during the summer term, to work with him and learn about his needs. The school staff have been on training at the RNIB, and Lennie will be supported by a Qualified Teacher for the Visually Impaired (Sharon, whose virtues we have extolled many times in this blog) in addition to the one-to-one support and class teacher. He will also have OT and speech and language support at school, in addition to all the medical appointments he has under 7 different departments at Great Ormond Street.

He is incredibly lucky to be able to access all this support, to be able to go to mainstream school, to be alive. He is incredibly unlucky to have been diagnosed with one of the rarest forms of bone cancer at the age of 9 months, and to have been left with no sight at all, a brain injury, reduced blood supply to the brain, stunted bone growth, hormone deficiency, digestive problems, ear/nose/throat problems, rickets, behaviour problems (ok, that may just be because he’s 4) and an increased risk of secondary cancer later in life. Some of this – in particular the destruction of his optic nerve – was caused by the cancer itself, but a great deal of it was caused by the treatment. We are enormously grateful for the treatment and care Lennie has received, without which he would not be alive. But there are some hard truths about children’s cancer too – research into the causes and cures is sadly under-funded, and whilst survival rates are (wonderfully) improving for many of the more common cancers in both adults and children, survival rates for children with most types of brain tumour and sarcoma (Lennie has Ewing’s sarcoma) have remained the same. For some children and families, the outlook can be very bleak.

Most of the time I am able to see the positive side. Lennie is very lucky to be with us, and is a happy, growing boy (well, he is now that he has daily growth hormone injections). He was funded by the NHS to have proton beam therapy in Florida – a ground-breaking treatment which has been approved for paediatric use. He has two years of stable scans under his belt, which means the risk of his cancer returning has reduced (although it could still come back). He is looking forward to going to school, and I’m sure he will manage really well, especially with the huge amount of work the staff have put in to help with his transition. But sometimes it’s hard not to imagine what might have been. Zoe sometimes says to us – “I wish Lennie could see”. I’ve learned to respond honestly when she says that – “So do I”. And I wish he hadn’t had to go through a year of intensive chemotherapy and proton beam therapy, and I wish he wasn’t struggling with numerous health problems as a result, and I wish I could be feeling as happy about him going to school as I was three years ago when Zoe bounced in through the classroom door. This time next week I’m sure I will – some days it’s just harder to be cheerful.

And now to redress the balance with some smiley photos of our happy family summer (and I’ve just been handed a glass of wine and told dinner is ready – it’s not all bad)…

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Fields (and hammocks) of joy

Those three precious words again – stable, no growth.

Lennie had another scan last Thursday (requiring his 56th general anaesthetic, by Kath’s calculations), and not only has the tumour not grown, his blood vessels aren’t showing any sign of getting thicker (so the daily mini-doses of aspirin he now has with breakfast appear to be helping).

This time around we’ve felt the ‘scanxiety’ pretty intensely – when I got the email with the news this morning, I had a thoroughly unabashed weep in the middle of Paddington station.  I think it’s mostly because Lennie has been making such brilliant progress this year, really building up momentum for starting school in September.  All the funding and arrangements are in place – last week we met with his teacher, and the two teaching assistants who will work with him one-to-one (one morning, one afternoon). All of them, along with the ever-fabulous Sharon, his specialist visual impairment teacher, absolutely filled us with confidence that he will thrive at this school, which his big sister Zoe has enjoyed so much for the past three years.

What has also brought home to me how much he’s come on over the past year was our annual May bank holiday camping trip. We blogged last year about the fun he had on that trip, and it was so satisfying to see how much more independent and adventurous he has become. He spent the weekend chatting away to children and adults alike, getting himself up and about around the campfire, and above all demanding to be taken to his beloved hammock in the woods nearby. As you can see below, his walking is really coming on, particularly when he’s highly motivated to reach his destination…

So – with this result behind us, we can go back to focusing on helping him to continue to show us all what a determined, personable and talented young man he is: Superdude, we salute you once more.

Five metres, five hundred miles

Before I begin, a quick update:
Lennie’s just had his latest scan, and the tumour is still stable, no growth, which is great news. It also picked up some ‘vascular changes’, possible thickening of blood vessels which can be a side-effect of radiotherapy – more tests on their way, a bit of a worry, but in the meantime we’ll be trying to keep focussed on how well he’s progressing.

For example – it was October 2013 that Lennie took his first steps unaided, but he then clearly decided this was all a bit ahead of schedule, and he needed a bit more time to reflect on the whole business. About a year, in fact – because in the past couple of weeks, he’s started up again with alacrity, taking it upon himself to launch away from the security of the wall, and step confidently into open space….


We’re working towards Lennie starting school in September, and it’s sometimes a struggle for Kath and I to imagine he’ll be “ready”. But with these first few metres conquered, covering the many miles he has ahead of him feels so much more possible: here’s to five hundred (and five hundred more).