First things first: the scrub nurse packages a sample of the tumour. I say to the junior, ‘Get this to pathology. Immediate turnaround. Any problems tell them to call me immediately.’
Off he runs. He has to get one of the pathologists in at this time of night, as they aren’t paid to be on call any more. Cost efficiency and all that. But in these rare times, we rely on their good will to haul themselves out of bed and come in. They have never refused – true professionals.
In the meantime, we have two alien bodies to contend with. The clot is already looking like a pale imitation of the beast that had arrived. The tumour itself, once the surprise has been dealt with, isn’t that intimidating. A brief pause, a quick pow-wow with the team and we are back in, only this time with different priorities.
What had been a straightforward clot removal became a tumour resection or ‘debulking’. It goes smoothly. We get as much as we can. There are no hiccoughs. None that make themselves known during the operation, anyway. As always, the proof of the pudding would only become apparent when Baby wakes up.
It’s a relief when she does. There’s a weakness down one side – to be expected from our rooting around under the bonnet in what we call the ‘motor strip’ – the part of the brain that controls the opposite side of the body – but otherwise she’s fine. If I had to put money on it, I’d guess she’ll be back to normal within a couple of months.
Despite the hour, Baby’s parents are wide awake when I find them. I don’t think either had sat down for the last two hours, both still in shock about the blood clot. When I reveal the presence of a tumour, it’s like I’d punched them in the stomach. Whatever adrenaline had been keeping them powered up disappears in a second.
‘A tumour?’ Mum says. ‘Has she got cancer? Is she going to die?’
I explain that we’ve sent a piece off for analysis and also cut out as much as we could find. The problem was, because the brain was so angry from the clot, it had been hard to discern the edges of the tumour.
‘We’ll run some tests, we’ll work out what we’re dealing with and, if necessary, we’ll go back in again when your daughter is strong enough,’ I explain.
The news from the lab wasn’t great. Baby had a glioblastoma, a very aggressive type of tumour. Even if you know it’s there, it’s a pretty hard one to treat. True to form, being a small child, Baby had enough about her to manage a solid recovery. Scans showed that we’d actually got rid of most of the tumour on the first sweep. Considering we hadn’t even known it was there when we began the op, that was a pretty good result. But not perfect. And on this occasion, with this patient, I thought we had a shot at that.
Once all the swelling and angriness goes down, you can generally go back in and do a more controlled operation to really hunt out all the bits of the tumour that might be hiding away and resect – remove – as much as you can. We did that and took away as much as wanted to be found, and Baby underwent chemotherapy to take care of the more devious parts. It was three months later when I saw her again.
When the parents arrived for clinic they were shadows of the healthy young pair who’d originally walked in. I was desperate to give them some good news. Luckily, I was able to. Scans showed that whatever was left of the tumour was negligible.
‘What does that mean?’ Dad asked.
‘It means you’ve got a period of quality family life ahead of you. Your daughter is a strong little girl. She’s not giving up. Let’s see how things go and get another scan.’
When they returned another three months later, there was a spring in their step. The scans had been good – no evidence of recurrence. Baby had continued to develop like any other toddler. It was great to see. She caused chaos wandering around my desk. Wouldn’t sit still for a minute. I could tell Mum was getting agitated with her, but I wouldn’t hear of it.
‘Trust me,’ I said, ‘this is the best outcome I could wish for. Treasure the moments, please.’
They took me at my word. A further three months went by and again, clear scan results. Each time I saw them they were all buzzing with life, full of stories about where they’d been, what they’d done. My patient – this tiny thing that had been a step away from death when I first met her – was growing into a brilliantly cheeky little thing. It was wonderful to witness the progress. As a family, they weren’t wasting a single minute.
Another three months passed and another. I began making plans to drop them back to a six-monthly schedule if the next meeting went as well. As much as I enjoyed their extremely upbeat visits, there was no point in letting them get worked up every quarter for no reason.
Unfortunately, we didn’t get the chance to put the plans into action. It was not even a year after her initial presentation when we had to break it to her parents.
‘I’m very sorry but the scans show the tumour is fighting back.’
‘Is she going to die?’ asked Mum. My little patient watched the conversation but was not involved in the decisions. She had grown up with these conversations all around her – the parents wanted it that way, but she didn’t realize the gravity of the question.
‘Not for a long time,’ I said. ‘Because we’re all going to help fight this.’
Which of course we did. But going in for a second time was trickier than the first. Scarring on the brain tissue, from where I’d resected the tumour before, made identification nigh on impossible in places. Even with all of our devices – sat nav, ultrasound – it was really difficult to pick out tumour from brain.
In the end I had to return to basics, the old suck-it-and-see. I took small samples of the areas I was confused by and swiftly had them run up to the lab with the basic note, ‘What do you think this is?’ Then I’d poke around a bit more, working on the stuff I was confident about, before word came back. Sometimes the reply was ‘We think this is a tumour’. Other times it was ‘This looks like scar tissue and brain. Maybe just be a bit careful there.’ There was a constant toing and froing between us and the laboratory, which of course adds to the pressure and really slows down progress. Thank goodness for the music keeping everyone focused. Good old Queen.
We got through it. It was, we all agreed, a good operation. Yet three months later, Baby was showing signs of weakness. The strong bounce back that she’d demonstrated after her initial operation wasn’t there. Something was keeping her down. We repeated the scan. The tumour was reaching into new, deeper parts of the brain.
‘It’s by no means a foregone conclusion,’ I explained to the family, ‘I’m willing to have another look. I will try to get out as much as I can again.’
‘Will it harm our baby?’ Mum asked.
‘It’s a good question. I would never advocate surgery if it weren’t necessary. The risks are high. But I don’t think we have a choice here. Clearly the tumour’s going to continue growing till it threatens her life otherwise.’
‘If you’re sure,’ Dad said.
‘I am. But I think we should all be aware that this will be the last time.’
The room fell silent. We all knew what I was saying. We were all aware that if I hadn’t been able to get everything on the first and second pass, the chances of me getting lucky the following times were increasingly lower. But that wasn’t the only goal. I also wanted to make space for the brain, as some of the effects of the chemotherapy she was having would cause the brain to swell. We did what we could knowing that it probably wouldn’t be enough. Not in the long term. But that didn’t mean we were out of options.
The next stage was some serious radiation treatment. My oncologist colleague suggested a new form of proton beam therapy which was showing very positive results when dealing with such a rapacious enemy. The only problem was that the technology was very expensive – and as a result there was none available in the UK.
It’s one of the great things about the NHS that we, as practitioners, are encouraged to own our limitations. If we can’t do something, we look around for someone who can. And so it is with treatment. If
there’s something that we can’t provide because we don’t have the equipment but which the NHS, with the expertise available, has decided would be beneficial, then we can pay for that treatment to take place elsewhere. The key point is that NHS experts – i.e. people like me – have to concur that said treatment will be beneficial. Basically, it’s to stop us sending people to Germany for crystal therapy and the like.
And so it was that Baby and her parents jetted off to Florida. I think it went well. Certainly, as well as could be hoped. The tumour was kept in abeyance for a couple of years – and the family had a lovely time together.
Sadly, there’s a reason we continue clinic appointments long after successful operations. Something as virulent as glioblastoma doesn’t know when to quit. Nearly two years after the last sighting, scans showed a familiar scene. In truth, I suspected as much the moment I saw the family. That bright, bonny little bundle of energy wasn’t herself. She was smiling and chatting, but I could see it was an effort. I couldn’t gauge whether the parents were aware of the deterioration. When you’re too close to something, you don’t always notice the changes.
As only an occasional, albeit regular, viewer, I could tell something was off. She seemed listless when she wasn’t hyper. Quick to drowsiness if she wasn’t being spoken to directly. I wasn’t, therefore, surprised when new scans showed the tumour was back and putting pressure on her brain.
We really wanted to avoid leaping back into the surgery route. There were some very interesting chemotherapy trials going on that weren’t available when we first started our relationship some three or four years earlier.
‘If you want I can speak to our oncology team running the studies and try to get you on-board?’ said my oncology colleague.
The family never wavered. ‘Show us where to sign,’ Dad replied, positive as ever. ‘Whatever this new regime is, if it buys us more time we’ll do it.’
He hit the nail on the head there. As a parent he wanted nothing more than to share every possible moment with his young daughter. But he was clued up enough to know, after all this time, that length of survival wasn’t as important as quality. As long as these new chemo trials weren’t going to cause his daughter unnecessary or undue pain and discomfort, he and his wife wanted to try everything they could for their child. It’s perfectly reasonable to me. Which is how I came to my next decision.
‘In the meantime, while we’re getting all the paperwork and logistics sorted,’ I said, ‘I’d like to have another look at this new growth. If I can take out as much as possible it will leave the chemo with less work to do. But this really will be the last time I go in.’
The whole family laughed. ‘That’s what you said last time,’ Mum laughed. ‘We’ll see …’
She was right. I had said that and I’d meant it. I previously had seen no reason to subject her daughter to the repeated risk of surgery and the ordeal of recovery. What had changed? Well, my patient primarily. The difference between her normal bouncy self and the slightly deflated, listless version in front of me was distressing. I hoped if I could alleviate pressure on the brain then maybe she’d zip back to her usual self. On top of that, it made sense to have her as fit and strong as possible before embarking on chemo.
‘One more try,’ I said in conclusion. ‘This is definitely the last time.’
‘Yeah, yeah, yeah …’
My whole focus during the operation is on making things better. Getting back that quality of life that I’ve witnessed over the last few years. I’m lucky to have known my patient during some wonderful times for her and her family. It shows me what potential there is if we get it right. It gives me something to aim for.
Unfortunately, the second we get inside I realize what we’re up against. The new and improved tumour – tumour 2.0 – is stuck up against a large blood vessel in the middle of the brain. Debulking potential is going to be severely limited. The best I can do is to attack the centre mass of the malignancy. It’s quite crude, using blunt force to remove the carcass of the tumour while leaving the edges to continue their perfidious journey into the brain.
None of it looks good. Not the tumour nor the probable outcome. The tumour is taking hold in the limbic system, the bit of the brain that deals with your personality and emotion. The part that makes you a person rather than a generic human and that makes this child her own unique self. There is nothing I can do to get to the parts already enmeshed inside her brain. I’m not going to risk overreaching. There’s too much at stake. Even so, it will only be a matter of time before her memory and personality begins to alter and the little girl the family know and love starts to disappear.
Still, I’m not going to give up on her or her family. I get as much as I can out before calling it a day. ‘Definitely the last time …’
Except, of course, it wasn’t. Six months into chemo, I saw another deterioration in the girl’s personality, so I chatted with the family to ask if they wanted me to try once again to wrangle a few more good quality months.
They did. With the caveat, ‘As long as you keep making her better, you keep going.’ My thoughts exactly.
Unfortunately, while she did snap back into healthy mode as usual after the op, it was for a much shorter period of time. The tumour was just too embedded in the brain. To combat the effects of chemo, she was also on a ton of steroids so her weight had shot up. Combined with the personality changes at the next clinic visit, I barely recognized her physically or mentally.
When you get to the stage that a patient spends more time recovering from treatment than actually enjoying a decent standard of life, then it’s time to ask who is really your priority? Because it’s not the patient anymore.
I could see the way the wind was blowing. I spoke to my oncology colleague. The chemo hadn’t been able to halt the onslaught in the brain, he said. The little girl was due for a second course imminently.
‘Do you think she’s up to it?’ I asked.
The image of the lethargic, laggard, lifeless child waiting in my clinic filled our thoughts.
‘Honestly,’ he said, ‘I’m not sure she is.’
We were both on the same page, although we’d taken different routes to reach it. I’m not sure how long I would have continued having ‘one more try’ with that little girl. When you saw how much difference each operation made, how buoyant and full of joie de vivre it made her for another six months or year, it was so tempting to keep plugging away. Like an addict: one more hit, one more hit. The harsh reality was that I was no longer buying a year’s good health. It was a month, possibly a few weeks more if we were lucky. And even then, there were side effects. The radiant little tomboy I’d grown so proud of probably wasn’t, in all likelihood, ever coming back.
When I broke the news to the family, I told them that, in our opinion, it would actually be unethical to continue operating.
I wasn’t sure how the parents would react, as they had been previously so gung-ho about pursuing every avenue, chasing down every medical possibility. Interestingly, though, they agreed with my assessment.
‘We can see she’s not getting better,’ Dad said. ‘We don’t want to cause her any pain or discomfort for the sake of it.’
‘We’ve had a good run,’ Mum added. ‘Now I think we need to accept it’s coming to an end.’
It was exceptionally brave of them, incredibly mature. The way they adapted from being all-out pioneers to accepting the difficult situation and saying, ‘Okay, our time’s up’ was impressive. But for them, as for me, it wasn’t about the amount of time or the amount of life, it was all about the quality. They’d had seven wonderful years with a little girl who should, by rights, have never seen her second birthday. They knew that and they were grateful. As, I have to say, was the patient herself.
‘If I don’t need any more operations, will I see you again?’ she said.
‘Probably not,’ I replied. ‘Not unless I get an invite to your next birthday party.’
‘Oh no, Doctor Jay, you’re
too old!’
The family returned to their local hospital, who were brilliant with supporting treatments. Then, when the time came, they took hospice care at home.
Of course it’s sad that a little girl died. But, as the parents pointed out again and again, she should have gone nearly six years earlier. The blood clot in itself, if unchecked, would have been enough to do that. The fact that it took a second condition to kill her shows how strong – and lucky – she actually was. The way the little girl and her parents viewed it, every day was a bonus and they did their best to make the most of it.
So yes, although this child eventually died, we gave her five times the potential lifespan that was expected when she first arrived. We enabled her and her family to enjoy years of good memories, experiences and adventures together. Seven years might not be regarded as a particularly long life, but they made it all count and packed loads into their time together, squeezing out every last drop.
That’s huge, isn’t it? To be able to do that? To be able to play a part in it? To witness first-hand everything that makes us human at its very best?
I think so. I’m a very lucky man.
ACKNOWLEDGEMENTS
I love my job. I look forward to every day at work. I am in the rare position that there have only been two days in my consultant career where I have not wanted to go to work – those followed unexpected deaths of patients in the operating room, and so perhaps could be forgiven.
I have been privileged to have been let into the lives of so many extraordinary patients and their families, to help where I can. I am also afforded the chance to teach and train the next generation of doctors – all the time encouraging them to see the whole patient, not just the disease.
My thanks for this chance in life go to my parents and my big brother, who loved, protected me and moulded a rather wayward child. Also to my friends, medics and civilians, who keep me sane.
Everything That Makes Us Human Page 24
