Fynn was diagnosed with Juvenile Myelo Monocyctic Leukaemia (JMML) in August 2003, aged 20 months, after an initial tentative diagnosis of ‘pre-leukaemia’. A series of childhood infections – hospitalised twice for cellulitis – left his Paediatrician, Heather McKinnon, at the Whittington Hospital in North London uncomfortable: there could be something more serious. It is likely that her instinct saved Fynn’s life: she called him back repeatedly for blood tests until one came back with results that started to help explain what was going on. She handed us over to the children’s hospital at Great Ormond Street Hospital (GOSH), and the machine went into overdrive. Consultant Haematologist Phil Ancliff came back with a confirmed diagnosis of JMML in August, and explained the implications to mum and dad, with 4-year old sister realising that something was badly amiss as they failed to hold it together Dr Ancliff’s little office.
I’ve felt bad for the poor fella ever since: in his job he has to do that on a regular basis. He gave us odds of 40% survival if we could find a BMT donor and the transplant was successful. What a devastating day. And what a terrible parental decision: shall we take this child, currently presenting with no serious illness, and make him very ill, maybe kill him, to try to save him?
The usual donor searches identified no matches, but a late return from the family matching identified, very unusually, that mum and dad share a haplotype, and therefore Fynn was a very strong match to his mum. She therefore became his 11/12 bone marrow donor, much to needle-phobic, big sister’s relief.
Treatment kicked in quickly, with conditioning chemo on GOSH Fox Ward under Consultant Paediatric Oncologist, Paul Veys, and a great and very professional team. Isolation was quickly required, and the BMT occurred on 5th November. We celebrate BMT with Guy Fawkes to this day with ‘one of those cakes that everyone, likes: you know the ones, Dad – the ones with the white icing from Waitrose’.
From there the chemo impact kicked in and Fynn became very ill. It’s hard watching your child develop those serious side effects and the pain that has to be controlled with morphine. Mucositis is something I hope I never have to see again, nor Fynn experience.
We took it in turns – 1 day in 3 – to look after Fynn in hospital, split between parents and grandmother. It was tough: Fynn was room bound in isolation for weeks. At first he deteriorated badly and went to being a very sick little boy who couldn’t swallow and had to sleep sitting up, scrunched over a pillow. I found it devastating to be there with him. Then some weeks in, the daily bloods came back with a neutrophil count and this was preceded by Fynn beginning to feel a little better. The count was tiny. But it hadn’t been there the day before. Our emotions were dictated pretty directly by those daily counts thereafter. If they went up, we could see light at the end of the tunnel. If they went down, we could see another transplant ahead.
The meds were introduced to stimulate the new graft, and to stimulate and control a level of graft versus host disease which combats the disease and is helpful in preventing relapse.
In due course, Fynn’s neutrophils had grown to a point where well people could come and visit. We had a deeply emotional visit (for Mum and Dad) from big sister one month exactly after his BMT. They immediately picked a fight. Great. Life as normal then. So much was still wrong with Fynn though, not least his lack of appetite which was eventually helped with a big diet of steroids. His hair was really falling out properly by now: we hadn’t appreciated that the effects of the chemo would carry on for a long time after the graft had taken.
We were given a release date from hospital of Christmas day, and while he was clearly not exactly the life and soul of the party, it was a great sense of achievement to be taking him home. Routine daily bloods were taken as we left, and we set off to home in North London. Pictures of Fynn on the day show him to be thin and frail. He sat under a blanket much of the day overwhelmed and not in the slightest bit interested in the unbelievable pile of presents he’d been given. He played with a bubble gun…but looked fragile and sick.
And of course, he was inundated. Lots of friends had followed his story feeling helpless while wanting to do something. And so they piled in big time for Christmas for him and his sister.
We took a call late on in the day from the hospital though: those departure bloods were a disaster. Could we get him back in straight away in the morning? He needed a platelet transfusion soon.
And so back we went, to be stuck there for several weeks further while Fynn’s bloods went up and down, and a complication of veno-occlusive disease was horrible and required a big set of new meds. He got better from that – and then a routine scan identified an issue with Fynn’s right kidney.
At the time I was pretty grumpy about this. There was no suggestion the kidney was causing any trouble – and a reduced function on one side was shown to be compensated for by an enhanced function on the other side. So – really? In the current situation could they stop finding stuff like that? It was agreed to hold off with the pyeloplasty surgery until he was materially better – and when eventually it was performed it wasn’t successful anyway.
The frustration was hard to deal with of nearly having had him home only to go backwards. We ran out of cash too as Dad’s employer kindly fired him, not having a policy for dealing with someone who needed that amount of unpaid leave. We were very generously funded by parents for several months but eventually Dad had to go contracting to clear debts, pay the bills and get off the in-law ticket. Thankfully that coincided with a decided up turn for Fynn, so he was then allowed to go home, at first with daily visits back to GOS, but in due course, served mostly at home by the community nurses.
We didn’t really notice at first, being so absorbed in it, but our tiny kitchen became an apothecary, and we became adept at crushing and mixing pills and pushing them through Fynn’s NG tube. We were giving him 28 separate doses a day at the beginning – all of which required some kind of preparation and a very clean working environment. His blond hair grew back – dark this time. And the major work of keeping Fynn away from infection continued.
As we started to dare to go out more we were alert to any kid who looked sickly and the stupid selfishness of the anti-vax movement sweeping posh North London became a real threat. There were a few knocks along the way: Fynn had chickenpox and shingles which required in-patient treatment. But his Graft Versus Host disease continued to be stimulated and controlled at a good level, to combat any chance of the JMML returning. And it worked.
Fynn carried on getting better and at 5 years was declared cancer free. He has continued to be under Great Ormond Street Hospital.
As a teen Fynn finally refused to carry on taking daily Penicillin – and his bad breath cleared up almost instantly. Treatment with daily testosterone through puberty was catastrophic as he started to produce his own, unknown, and suffered a very nearly fatal mental health episode, which again resolved quickly when the medication was stopped. Through this as parents we have been Fynn’s advocates talking to the doctors and challenging where we thought necessary: stopping the testosterone supplement was at our strong request for eg. And that’s as it should be. The doctors have been tolerant of the amateurs, knowing that we just want what is best for Fynn.
Fynn didn’t grow normally – as a result of his steroids. It remains a serious question for us, that we did not push harder to get him treated with growth hormone. At the time he was on the 25th percentile and considered nowhere near small enough to warrant the intervention. He has ended on the 9th percentile – and would quite like to be taller.
Still, Fynn is now a confident 17-year-old, with a 50 cc monkey bike and a car licence too. He is an actor and studies the sciences. He has made his cancer history an important part of who he is, with associated dark humour a regular part of our daily life.
And so what next? Fynn has been cancer free for years but continues to experience some health issues, we think unrelated. A scoliosis diagnosis last summer was the latest in a seemingly unending catalogue of health issues. We temper a feeling of “can’t he just catch a break?” with gratitude to the docs and “at least he’s still with us”.
Thankfully, if you meet Fynn today you’d encounter an articulate, thoughtful young man and would have no idea of his medical history. The NHS is at the heart of that and the professionalism of his carers. 30 years ago, he would have died – unquestionably: they all did. Today he has a full life ahead of him – and has already made a pretty good start at living it.
JMML Parents Group UK 