The Trinity That’s Treating Kids with Cancer in Kosovo
Loran’s mother is young. Perhaps in her mid-twenties. Loran is also young. He is five. Loran has no hair, a head that looks too big for his body, and wide, slightly sunken eyes that look too big for his head. Into his arm goes a clear plastic tube – the shiny plastic catching the light in strange contrast to his soft sallow skin. A green and black bike, Loran-sized, rests against the wall.
Loran is receiving chemotherapy in the paediatric department of the University Clinical Center of Kosovo in Pristina, Kosovo’s capital. A couple of decades ago, this wouldn’t have been possible. Following the brutal war between the Republic of Yugoslavia and the Kosovo Liberation Army, which ended in 1999 and led to the establishment of Kosovo as a separate country, there was virtually no treatment available for children given a cancer diagnosis in Kosovo, only palliative care. Children had to leave the country for chemotherapy, radiotherapy and surgery. Over the last twenty years, through painstaking work, the team in Pristina are now able to treat some types of childhood cancer, and increasingly complex cases. Currently, they treat around 50 children each year.
Two organisations have been at the heart of supporting the medical team in Pristina: Care for Kosovo Kids and World Child Cancer. Together, the two support organisations and the University Clinical Center of Kosovo work in complementary, and highly effective, partnership. Care for Kosovo Kids provides the hardware: chemo drugs, reagents and equipment required to deliver chemo drugs. World Child Cancer provides the software: training and mentorship of doctors and nurses, diagnostic assistance and remote support on trickier cases. Together they have changed the landscape of paediatric oncology in Kosovo, so much so Loran receives an identical chemo regime to what he would get in any western European country.
Two years ago, I looked like a larger version of Loran. I have also experienced chemotherapy, but much older than Leon. Confidently, I walked up to his room; I had been in a similar position so, of course I would know exactly what to say. In fact, I would be the perfect visitor, with warm, helpful, perhaps inspiring comments for Loran and his Mum.
As I opened my mouth, this illusion shattered. “Err, hi!” I called out, raising my arm awkwardly in greeting. What do I say now? I realised everything I wanted to say, I couldn’t: I couldn’t say to Loran, “You’ll be ok.”; I couldn’t say to his mother, “Don’t worry about him, everything will be fine.”; I couldn’t say to myself, “You’ve got this covered.” I had no idea of what to say. I found this profoundly unsettling. Surely I, of all people, would know what to say? Apparently not. I stood there like a lemon, struggling to put together a sentence, my mouth opening and closing behind my mask in silence.
A few minutes prior, Dr Arbana, a kindly and bespectacled oncology paediatrician who sported a snot-green Halloween shirt with marauding ghosts, zombies and pumpkins, told me more about the Centre: “Right after the war we could only give palliative care. We were lacking a lot of medicines and technology.” However, “Day by day, year by year, we see improvement.” World Child Cancer supports a team of doctors, nurses and other specialists coming to the Pristina hospital from the Princess Máxima Center hospital in the Netherlands twice a year, to give advice and mentorship.
What impact has this had? Dr Arbana conferred with a colleague and shared a story: “We have a little baby, two months old, with a neuroblastoma on the upper kidney gland. The surgeons wanted to operate immediately however the team from Princess Máxima Center said to wait for a bit, and that it might not be necessary to operate. After a month it had shrunk in size and we will discuss the latest results today.”
Such advice only comes with experience and a deep knowledge of the field, something that the team in the Netherlands is looking to pass on – in person or by video link. I looked in on the video call and saw a familiar face. “Luke!” Martine cried with a smile, “How is the ride going?” I met Martine nine months ago at the Princess Máxima Center in Utrecht near the beginning of Leg 2 of the expedition. It was an unexpected delight to see her again and to witness first-hand the transfer of experience and advice from one side of Europe to the other.
Loran’s mother also wanted to know my story. Her face was a blend of concern, pain and hope. I told her about the chemotherapy, the surgery, the radiotherapy, and now… a position I never expected to be in, cycling round the world. It felt almost insensitive to talk of my own good fortune, when I knew that not everyone gets beyond their treatment – and whilst Loran’s mum could only watch her child endure the nauseating chemo drugs circulating his body. But perhaps it was helpful that I stood there as a living example that individuals do get through treatment, that after treatment life’s richness can be grasped with even greater intention. I didn’t feel like that at the time, though. I just wanted to hug her and tell her it would be ok.
Edona is Care for Kosovo Kids’ only full-time employee. She walks with purpose, black fringe framing her bright kindly eyes, blue mask hiding her mouth and chin. She is responsible for making things happen – sourcing equipment, soliciting donations, liaising with the “Dutch ladies,” several dynamic female entrepreneurs who set up Care for Kosovo Kids in 2013. Dr Arbana calls her “our star” and tells me the vital role she plays. Edona is unusual for a Kosovar in that she has spent four years abroad, some of that time studying in Greece. Edona explains to me that the going salary in Kosovo is 200-250 euros per month, which makes the cost of treatment unaffordable for many. In these situations, Care for Kosovo Kids steps in and pays for treatment.
Back with Loran and his mum, I say goodbye and make the most optimistic comment I feel able to muster: “Maybe in a few years time you’ll be cycling faster than me!” Pointing to the bike I smile at his mum and add, “Maybe you’ve got a future Tour de France cyclist on your hands.” She smiles, and I feel a bit better. But was this smile for her or me?
Afterwards, in a coffee shop ten minutes walk from the hospital, jiggling the pale brown liquid round and round, I reflect on the discomfort that I felt. I thought I would be able to actively help through what I said and did. Instead, I came to realise that despite going through a similar experience to Leon, there is nothing any bystander can say that will change the situation.
As humans, we become uncomfortable when intimately involved in situations that are unpleasant or distressing for another person – and even more so when we can’t change them. Our instinctive reaction is to try and make the situation better – partly for the other person, and partly for ourselves – so we don’t have to witness their discomfort, which makes us uncomfortable too. However, so often that isn’t possible. But does that mean we should limit ourselves to situations where we feel we can be comfortably useful? Far from it. Being there, accepting the discomfort, and just being a presence is enough, and can mean a lot. It means I value you. It means I care. It means I know I can’t change your situation but I’m here for you and you don’t need to say a word to make me stay.
During my time in hospital, the people I most appreciated were those who would come and sit, without needing to talk to me. They would read a book, scroll social media, get on with work. Their presence alone had value for me, made even more precious because I didn’t have to validate their presence through conversation. Even me lying semi-conscious on the bed was enough for them, and that tacit support was some of the most affirming I ever received.
It’s not just the patients who need support, although tragically this year even this is curtailed; it’s pretty difficult to sit beside anyone at all in hospital. There are other ways to help: the team of doctors in Pristina are already treating more complex cases of leukaemia, and Dr Arbana tells me that in the future they want to do “radiotherapy for the children and brain surgery”. With the effectiveness of the trinity of Pristina’s paediatric oncology team, World Child Cancer and Care for Kosovo Kids, it seems like these goals are eminently achievable, and an ever brighter future can be forged for Kosovo’s future.
Please consider helping these organisations continue their incredibly important work either by donating directly to World Child Cancer and Care for Kosovo Kids, or by donating to Bristol2Beijing, which is equally supporting five incredible charities, including World Child Cancer and its work in Kosovo as our regional charity partner during my trek across Europe.
N.B. Some names have been changed in order to protect the privacy of the individual.