A grieving GP: How one doctor and her brave son fought leukaemia

This is not how the story was supposed to go.
 
Dr Emily Isham grew up in what is now the Democratic Republic of the Congo. A ‘missionary kid’, she lived through the genocide in neighbouring Rwanda.
 
She vividly remembers her parents helping feed and house terrified refugees who had fled the killings on foot, crossing the border to arrive in her town of Bukavu.
 
‘Seeing the dire healthcare available and the state these refugees were in – that triggered my desire to help,’ she told newsGP.
 
Her family left in 1996, due to the growing civil war, but Emily struggled with guilt, feeling she had deserted her Congolese friends. She vowed to return, this time as a doctor.
 
In Australia, Emily graduated from high school and plunged into medicine. But the Congo was always on her mind.
 
‘I feel like I belonged somewhere, in my home country of the Congo. I feel such an affinity when I go back there,’ she said.
 
Emily would later start the Mafunzo Project to sponsor Congolese students to become doctors and nurses, with 28 students currently sponsored.
 
Emily met her husband to be, Seth, on holiday in Tasmania.
 
Both were drawn to the idea of returning to the Congo, where Emily wanted to use her Master’s degree in International Public Health and language skills in French and Swahili, while Seth planned to teach.
 
The couple had their first child in 2009, with three more to follow.
 
But Emily and her family have not yet moved to the Congo.
 
This is what happened instead.
 
When her second child, Ned, turned two, Emily was ready for a break.
 
Ned had been the ‘worst sleeper ever’ and the first year of his life had been hard. Emily had been juggling general practice training – as a way to better skill herself for the broad demands of international work – with a child who didn’t sleep, all while studying for her RACGP Fellowship exams.
 
But after Ned turned two, he started getting sick more often. He then started having unusually long naps and waking up puffy and swollen. One weekend, he abruptly stopped being able to stand.
 
Ned’s worried mother investigated over the next month and a half. Eventually, she referred him to a paediatrician who ordered a battery of tests.
 
Emily vividly remembers the date the results came back – 25 July 2014.
 
She was 11 weeks’ pregnant, and it was a mere two weeks before she was scheduled to sit her written exam.
 
And her beloved son had acute lymphoblastic leukaemia.
 
Ned started chemotherapy. He didn’t respond as well as doctors hoped, so he was upgraded to a high-risk protocol. After nine months of treatment, he went into remission. But he would need maintenance chemo for another three years.
 
Emily’s third child was born in 2015 and the family tried to find a new equilibrium.
 
Ned was often neutropenic, which dragged out the treatment time.
 
‘Where someone else might take a week to recover, he’d take three or four,’ Emily said.
 
‘Everything was prolonged. We had to live in isolation. We were juggling two jobs, the kids, and a new baby in amongst that. It was quite challenging.’ 
 
Emily and Seth would tag team at hospital, with one sleeping the night next to their exhausted son and going to work the next day, while the other came in for that day and the next night.
 
This went on for three years. Life didn’t stop. Emily and Seth sold a house and bought another. Emily fell pregnant with their fourth child. She re-sat her three Fellowship exams.
 
It seemed as if the worst was behind them.
 
But in June 2017, as the family was still unpacking boxes in their new house, things were again turned upside down.
 
During a routine visit for blood tests with Ned, Emily was summoned to a private room. There had been a major relapse.
 
‘We were told we’d need to fly to Melbourne for up to 10 months for a bone marrow transplant,’ Emily said.
 
‘The house wasn’t unpacked, but I had to call work, cancel all my patients for the foreseeable future, organise a transfer to the Royal Women’s Hospital for my 29-week pregnancy, and fly with Ned to the Royal Children’s Hospital in Melbourne the next morning.’
 
Their nightmare had begun again. The family crammed into a two-bedroom unit in Melbourne while Ned underwent heavy chemo to wipe out his bone marrow ahead of the transplant.
 
Luckily, Emily and Seth’s two-year-old daughter, Eleanor, was a bone marrow match for Ned.
 
That meant a major work up for her while Ned lived in an isolation room on the transplant ward.
 
After many months of chemo to reduce the disease load, Ned was finally clear enough for the transplant. Doctors took the bone marrow from Eleanor in theatre one November morning and infused it into her brother that afternoon.
 
It was Day Zero of a Day +100 protocol.
 
‘We were very, very weary by this point. Exams, house move, interstate move, a newborn who wasn’t sleeping, sick kids and solo parenting. It was an awful period,’ Emily said.
 
But the bone marrow transplant took. The evidence was that Ned seemed to be getting worse.
 
‘They have to get worse before they improve – so much in their bodies disintegrates from the pre-chemo and irradiation, before the bone marrow engrafts and starts to regenerate,’ Emily said.

Emily and Seth’s family when Ned was still with them. (Image: Lisa Kuilenburg)
 
Six weeks after he entered the unit, Ned was discharged to continue home isolation at their Melbourne flat for another few months, his hopeful family by his side.
 
But at the Day +100 mark, it became apparent the transplant had not worked.
 
‘He was too battle-weary to do another transplant. Our only option, as suggested by his oncologists, was to try the new CAR-T therapy,’ Emily said.
 
CAR-T therapy – a type of treatment in which a patient’s T cells are changed in a laboratory so they will attack cancer cells – has now been approved for use in Australia.
 
In 2018, the only option was to fly to Seattle. Ned was conditionally approved for treatment, but the therapy would cost an eye-watering $600,000 AUD.
 
The difficult decision rested with Emily and Seth.
 
‘It was massive. No one had done this before, but when we were presented with the option we thought, “We have to”,’ Emily said.
 
So, at the suggestion of our medical team, and with the support of Rare Cancers Australia, we started a crowdfunding campaign.’
 
Donations flooded in, including a large anonymous donor from overseas. The family soon had enough to try once more to save their son’s life.
 
When the family arrived in Seattle, more hard news was waiting. Ned’s blood cancer had been growing at a staggering rate – shooting from 0.01% of his bone marrow to 43%.
 
The fortnight break from chemo they had planned in order to give Ned a well-earned rest before T-cell infusion was now impossible.
 
‘We were straight into heavy chemo, to reduce this heavy disease burden,’ Emily recalled. 
 
Soon, Ned’s T-cells were being re-jigged to hunt and kill his leukemic B-cells with the CD19 and CD22 molecules.
 
But worse was to come. Ned’s cancer mutated during the waiting period. And there was now a third biomarker – CD24.
 
The US oncologists told Emily and Seth that the mutation made a significant difference.
 
‘They said, we haven’t seen this before, but it’s unlikely that the new T cells will now work and it’s likely that the toxicity from their infusion might overwhelm his body. He might not make it home,’ Emily said.
 
Another near-impossible choice faced his parents.
 
Take their son home for palliative care or try the CAR-T treatment, knowing it might well kill him.
 
‘It was an awful three days when we had to make that decision,’ Emily said. ‘We are Christians so we were prayerful about it.
 
‘We always valued quality of life over quantity, and would be devastated if he never made it back to his beloved home. But we also thought, we’ve been able to come here thanks to some miracles and many people’s generosity, so we’d never forgive ourselves if we didn’t take the small chance that the T cells would work.
 
‘His three beloved siblings and parents were with him, we were all there. So we accepted the cells.
 
‘And the miracle was that it worked – more than they thought. The cells reduced his leukaemia bone marrow burden back down to 0.01%, and eradicated his [central nervous system] disease.’
 
There was now a brief window of renewed hope, if the family could get back to Melbourne in time for a recommended second transplant. Ned’s team of doctors had found matching marrow from an unrelated donor.
 
So they did it. On the plane, back to Melbourne, straight from the airport to the Royal Children’s Hospital, and Ned was immediately plunged back into the medical world as an oncology ward inpatient.
 
Emily and Seth had tried absolutely everything. Their plucky, smiling son had been worn down by the treatments and the disease. This, they knew, was their last shot.
 
The second transplant was, in his mother’s words, ‘horrific.’
 
‘Any memories of that time are of things going wrong, from serious bacterial and viral infections, to severe nausea, vomiting and diarrhoea, to cardiac complications requiring emergency team calls, to medication toxicity, to fungal infection, to serious graft versus host disease, to impaired liver function,’ Emily said. 
 
‘He was in the ICU.’
 
But her tough little son got through, and on 28 November last year, he was discharged. 
 
Now, the family had to wait and hope, while Ned endured immunosuppressive medications, steroids, nasogastric feeds and isolation precautions.
 
A week before Christmas, Ned and his family headed home to Tasmania, 18 months after first leaving.
 
‘We were enormously relieved. We had got back with all four children,’ Emily said.
 
The house was still full of boxes and Emily – who had been forced to give up work – was on Centrelink to help make ends meet.
 
For two months, the family stayed put, hoping against hope. Slowly, they tried to regain a sense of normality in their lives. Seth went back to work. The kids went back to school – even Ned, who was starting Grade 1.
 
And then, in February this year, Ned’s check-up in Melbourne came back with devastating news.

His cancer was back once again, shocking the seasoned oncologists with its aggression. It was Ned’s fourth relapse. There was, the oncologists said, nothing left they could do.
 
And so, Emily flew back to Tasmania with Ned and her baby son Gilbert to her distraught husband and their daughters.
 
Now, there was only comfort left to offer. Emily had to learn palliative care intimately, though it went against everything she had learned about preserving long-term health during cancer treatment.
 
They took their family up the coast for a couple of days. And Ned got to ride in a helicopter.

Then he worsened. All he wanted, his mum said, was to be home.
 
In mid-March, he was just well enough to be a pageboy in a friend’s wedding.
 
Over the following week, he deteriorated rapidly with pneumonia and overwhelming leukaemia. Soon, he stopped eating.
 
And at 7.30 am on 29 March, his breathing, too, stopped. He died just before his 7th birthday, at home in his mum’s arms, after fighting the disease for nearly five years.
 
In the aftermath, Emily has struggled with many things.
 
The grief, of course, is foremost.
 
But life will not stop.
 
‘I’ve struggled with how to convey the hole we found ourselves in emotionally,’ she said.
 
‘It’s not only hard to lose a son and to grieve that, after fighting for his life for so long, but it’s also so hard to parent children through that process. They’re grieving too and their behaviour is reflecting that.’
 
Her four-year-old daughter Eleanor – who was Ned’s first bone marrow donor – misses her best friend.
 
‘The kids need the normal ordinary things – playtime, socialising, reading books. So you can’t just stay in bed all day and wallow,’ Emily said.
 
‘That’s been one of the hardest things.’
 
The financial cost of Ned’s treatment and travel meant Emily had to go back to work. She now works at Rare Cancers Australia, an organisation that had helped her family significantly, with a day a week at a skin cancer clinic. 
 
The regularity of work and their church community’s support has helped her from caving in to the depths of depression.
 
But she and her husband are suffering from severe post-traumatic stress disorder (PTSD). So, for now, returning to mainstream general practice feels impossible for Emily.
 
‘The emotional load would be too much. We’ve just had no time to recover along the way,’ she said.
 
‘I feel emotionally depleted. You imagine crashing in a heap, but the kids need our attention. 
 
‘I felt like I was an ordinary GP obstetrician who wanted to go overseas. Now I’m someone who has been through the awfulness of the oncology world as a parent, and advocating for others.
 
‘I have been able to start giving what I’d learned back, finding a way to funnel all the stuff I’ve learned, all that experience, into being able to guide other patients. But it hasn’t been easy.’


His parents want to remember Ned as he was. (Image: Lisa Kuilenburg)
 
Regular exercise, specifically running, has helped keep Emily together throughout the whole ordeal.
 
‘I need to do something where I’m being really challenged, but outside cancer,’ she said. ‘I feel so much better when I run, and when I spend time with God. That’s how I manage to get up each day.
​
‘I’m re-training for another full marathon, because I need to achieve something gruelling, outside of oncology.’
 
Emily compares each of her three surviving children to a bachelor’s degree, in terms of the time and effort required raising them.
 
Ned was a PhD.
 
‘We don’t love any of them less than we loved Ned, but it was really intense work with him,’ she said.
 
‘He was mostly incontinent and had to be helped to walk, to eat, like a toddler, requiring so many constant daily medications and appointments. Not that we ever resented that.
 
‘But I went from being a full time carer – that big, huge, constant weight – to having three healthy children in the non-cancer ward world. It was a stark difference.’

Emily describes a specific kind of loneliness that comes from the fight against her child’s cancer.
 
‘In the outside world, people have their own agendas, choices they’ve made, holidays, careers. But you sit in the transplant ward and any sense of control you have over your life has been snatched away,’ she explained.
 
‘You feel so lonely. Your identity is now completely in service of a child who is sick. You lose that part of yourself.
 
‘You can create a network that gives you a little bit more community. But it’s such a unique thing – and not in a good way. None of our friends had had anything like this. No one knew what to do or say.
 
‘People feel they can’t relate – and they can’t, other than showing grace and empathy.
 
‘When I walk down the street, I look like a normal person with a normal life. Two kids in the pram, the older one walking. So it’s very easy to assume everything is normal.’
 
When Emily talks to people about her experience, she tries to convey one thing: Go easy on people, because you don’t know what they’re going through.
 
‘That ordinary woman might have just lost a husband. That man might have lost a brother,’ she said.
 
‘When I was a type A personality, I’d plan far ahead. But we got through by simply living moment by moment.
 
‘There were times during the transplant process, when I was solo parenting with two screaming children and an argumentative child, heading to a full day of caring for Ned and discussing his care and medication regimen with so many doctors, where I thought, “I don’t know if I can do this today”.
 
‘But you just go back to that moment – right here in this moment, comfort that child. Don’t think ahead.’
 
‘Sometimes, I’d think, if I go for a run, I’ll miss time with Ned. But in that moment, I couldn’t have kept going unless I went for a run. So that’s how we got through.’
 
In the wake of her loss, Emily has turned to writing.
 
Our grief and immense loss feel like a boulder – a heavy, unrelenting weight tied around our necks with a rope of sharp, spiky bristles, from which we can’t ever escape or seek reprieve other than temporary, shallow distraction.

And this is a bittersweet burden that we, and others bereaved, carry; for to wish away this burden would diminish the tremendousness of their existence and our love.’
 
In Ned’s absence, I wouldn’t want to be without the wound, or eventually the scar.

cancer grief leukaemia mental health