Léa’s father, Jacky’s story

It’s called primitive cell cancer; it develops while the child is in the womb. It could have been detected very early on. Her mother had her triple test done in difficult conditions; we were in Ireland at the time. They don’t try and detect birth defects there because a child is a gift from God. There’s no abortion.  
We did the triple test because it is what we would have done if we had been in France. They told us in Irish-English that there was a high alpha-fetoprotein level; we had no idea what that was and I admit to not having been either curious or worried. So we got a letter saying that something was wrong. We were recommended to have an amniocentesis done. We decided to go and have it done in Belgium, because she had lived for a year in Brussels. The result showed that it wasn’t spina bifida or Down’s syndrome, but on the other hand no-one came back about this abnormal alpha-fetoprotein level, not even my partner’s father who is a doctor.

She was a beautiful baby who was growing well and developing well. We never actually thought to tell the paediatrician about the pain in her bottom when she was sitting. We completely let that one slip by.
 
They pay a lot of attention to dislocated hips in Ireland because it’s a fairly common birth defect among the Irish. Also, the Anglo-American way is to go straight in and sue a doctor who might make a mistake. So we found ourselves with a baby girl wearing a hip abductor at three days old, which really distressed her mother, who had just had a baby that she couldn’t even bathe. The abductor got removed after two months. In France or Belgium, the first thing would have been to do an ultrasound scan, but in Ireland they go straight for strapping on an abductor. Being polite, I just accepted the Irish Faculty of Medicine’s diagnosis   My partner’s father said nothing about it. So these first two months of life were rough for both mother and child.
We had quite a distressed little girl. We saw it when we put her in her car seat or when we laid her on her back. In the baby buggy, she quickly became unbearable. Things weren’t right, but we just didn’t realize it.
 
"Well, Léa certainly has a temper on her, that’s why she’s difficult; she’s like you; that's just how you were when you were little".
 
A year after, we went back to see a doctor and she was quite normal, from outside appearances, anyway. She was a lovely baby growing and developing well.  
We never actually thought to tell the paediatrician about the pain in her bottom when she was sitting. We completely let that one slip by.  
Obviously, things started going downhill between us. The nights were rough with a crying baby, a mother who wasn’t very happy and who was also a bit lost because she was "in the middle of nowhere", alone and isolated.  
She also started wondering where I was, because with a screaming baby in the house, you don’t want to go home. So it was a terrible atmosphere, even as far as our sex life went; she’d lost self-confidence and I felt overlooked and rejected.
 
In October, when my daughter was a year old, I started thinking she had a funny way of sleeping - in the foetal position but on her tummy with her legs tucked under her body and her bottom up in the air.
 
I said about it to her mother. It might have been that we didn’t want to admit it. She called her parents. Her father’s a doctor, her sister’s a medical student and her mother had 6 children. All I got from her side of the family was, “Well, Léa certainly has a temper on her, that’s why she’s difficult; she’s like you, that's just how you were when you were little".  
So my partner gets it into her head that she was a difficult child, and so there’s nothing unusual if her daughter’s difficult. So they didn’t show any concerns on the medical front.  
We didn’t mention the alpha-fetoprotein levels.  
While all this was going on, we celebrated my daughter’s birthday, my father was developing cancer and my mother was suffering from depression. My father had pleurisy, his lungs were collapsing and filling up with fluid. He finally died in December.
 
We laid him to rest; my mother just vegetated; that meant having to learn how to take care of her, adapt her apartment; she was all the time in and out of hospital. All these problems, all at the same time. And then there was the estate to deal with, the solicitor, the insurance, etc.
 
So I said to her mother: "Look, can’t you see, that’s not right!" It was a purple chequered swelling that looked gangrenous; a vile thing.
 
At the start of February, things really weren’t right with our little girl. One morning, I noticed her leg was all swollen. So I said to her mother: "Look, can’t you see, that’s not right!" She screamed as if I was talking utter rubbish, but she had to face the facts.  
It was a purple chequered swelling that looked gangrenous; a vile thing.  
We went off to the hospital. I felt like a second-class citizen there in Ireland.  
You felt that you’d dropped into an overcrowded, understaffed hospital system. There were a lot of Pakistani doctors and assistants; you had no idea who was who. There was a ward manager who needed beds, who was a bit less concerned with health and a bit more with health economics.  
They didn’t know what it was. As it wasn’t a nice sight, they thought it might be a foreign body going through the system. They put her on antibiotics.  
In this ward, the beds are curtained off. My partner and I slept in a hotel alternately for two days because our house was 50 kilometres away. Thing were still bad between us. Also, I still had to work. She didn’t work, so someone had to bring the money in and I had high alimony payments to make.  
Eventually, the leg started getting better. They sent us back to where we lived in the countryside because we were in A&E and it was full of kids with broken legs - they needed the beds.
 
The following weekend there was a festival at a sort of "Chinatown" in Dublin. We went and it was fun. On Monday, I went back to work. My partner called me - my daughter had a temperature of 40°. The paediatrician didn’t think she was teething, it was too high. So back to hospital we go.  
The week before, I had told my ex-brother-in-law and he told me that if I had a problem we should go back to Paris straight away to the Hôpital Necker children’s hospital.
 
We’ll start with the musculoskeletal system, the surgeon said, and if we find nothing there, we’ll do an ultrasound then an MRI, etc.
 
We got to the hospital in Dublin in the midst of a bronchiolitis epidemic, a very bad time. The hospital was even more crowded, with kids fitted with oxygen face masks, etc. They stuck us and our baby girl with her sunken eyes just little slits in a corner. On top of that, my daughter who had been in pain the week before screamed whenever a nurse came near us. So obviously, nobody did. We waited from noon to 6:00 p.m.; nobody came to see about us. And then this smooth guy rolls up, a surgeon who had just ended his shift. I don’t know whether it was my hot-looking partner or my howling daughter that brought him over. He started off looking for symptoms, moving the leg around. My daughter was quiet. He said there was an infection somewhere, something developing, maybe an abscess or an infection in the joint. It seemed odd to him. "Starting tomorrow morning, we’ll do some tests", he said.  
No tests had been done the week Léa was in hospital.  
We’ll start with the musculoskeletal system, the surgeon said, and if we find nothing there, we’ll do an ultrasound then an MRI, etc.  
The next day, nothing found in the musculoskeletal system. In the abdominal organs, I understand medical English well enough to understand what the radiologist said: "She’s got an enlarged bladder".  
And yet it seemed to me that my daughter was passing water properly. I wasn’t happy to hear that.  
Her mother was already starting to be unable to cope, so I had to start taking charge of the child because she had to go for a scan. She had to be put into a light sleep so she could go through it calmly. Her mother was also starting to go round in a daze; she wasn’t well.
 
"I’m sorry, it isn’t a foreign body. It’s something that is growing inside her and developing. It’s a tumour, a type of cancer".
 
They put her in the tunnel for the first time; it took 45 minutes. Then they did it again. Afterwards, they said, take your daughter off and we’ll let you know what’s going on.  
Some hours later, they came.  
We didn’t know where we were, what we were doing. We couldn’t think what they might tell us. We had no idea what was going on. Then they came and they told us, "I’m sorry, it isn’t a foreign body. It’s something that is growing inside her and developing. It’s a tumour, a type of cancer".
 
So there we are. Petrified, stunned, completely gobsmacked. And unable to reach out to each other, either - just nothing. We’d already been growing apart right from the birth, so for a year. Things weren’t going well; the child coming didn’t necessarily make things easier, either for her or for me.
 
To tell us just like that. - bang! I think I remember seeing her mother’s gaze falling inwards. The shutters had come down.  
To keep the pain at bay, I went straight into organization mode. What do we do; how do we do it; do we stay there for treatment?  
I called up my ex-brother-in-law and told him it was much more complicated than we had thought.  
He said, "Leave now! I’ll make an appointment for you at the Curie Institute, they’re the best".  We talked about it with the Irish doctors. They could clearly see that we didn’t want to stay and they understood that.  
I went back to the house and started getting things ready. I transferred money to my bank account in France because I imagined that things wouldn’t be very straightforward. I sent €10 000 - fortunately, I had it. But I wouldn’t have it for very long, because after three days the Curie Institute demanded a cheque for that amount as security pending the health system picking up the costs.  
We got there and got a quick appointment. We were lucky enough to queue-jump, thanks to my ex-brother-in-law. In the first week, they very quickly sussed out the alpha-fetoprotein tracer.  
 
They were in the liver, the lungs, the ribs and the nodes around in the affected area but none on the spine or in the brain or spinal cord.
 
We were told later on that if there’d been follow-up during pregnancy and after birth, there would have been a tumour but maybe not a cancerous one, because it turns from normal to a cancerous state.  
We also found out where this huge blasted thing was located. It was the size of an adult’s fist in the body of a 15-month-old baby. It was a massive thing located on her coccyx and the inferior sacral vertebrae. Chemotherapy was needed to reduce the thing and they’d check to see whether there were metastases elsewhere. Obviously, she already had them. That was probably what had caused the fever, the metastases developing.  
They were in the liver, the lungs, the ribs and the nodes around the affected area but none on the spine or in the brain or spinal cord.
It wasn’t great news! We were scared stiff.  
The first bout of chemo was that week. They realized there was no need for a biopsy, so they fitted a catheter. She was fully set up. She’d need morphine for the first chemo session because it was going to be painful. It was a cancer that was growing very quickly but would also shrink quickly. The cells were fairly non-differentiated; it still wasn’t clear where they were coming from; they had formed in the womb.
 
She could have died in our arms, just like that and we would have had no idea ….
 
I asked the doctor later if he thought my daughter had bits of ovaries missing, because it seems that that’s where this kind of cells bind - in the wrong place. So they get rejected and become cancerous tumours, apparently.  
It’s very rare, and where they’re located in her is also very rare for this type of cancer. Usually, they bind to the testes or ovaries, but much more infrequently on the coccyx and they grow by forming an external tumour. Here, no luck, it happened internally, which meant waiting until it grew.  
When it did, the swollen leg was from the tumour pressing down on her venous return veins. She also had a thrombus associated with this crushing phenomenon. So, the investigations done at the hospital stimulated a blood clot which went back into the circulatory system. So, she could have had an embolism, especially as we flew. She could have died in our arms, just like that and we would have had no idea.
 
"If it had happened to you, it wouldn’t be so bad because you’ve already got three children."
 
Chemo kills off all the cell lines, platelets and stuff. But, you have to get rid of the blood clot. So they gave her an anticoagulant. What an anticoagulant does to a baby with no platelets is no great fun either. So we had make sure to avoid her getting any knocks. She didn’t; also, she was a great kid to look after; the Curie staff said she babbled non-stop and that my partner was wonderful and a ray of sunshine for them. The care staff thought mother and daughter were adorable. Léa saw other children come in; one of them became one of her friends; unfortunately he was in relapse. It's really tough. When it came to operate on him, he had metastases so they opted for a new bout of chemotherapy. Unfortunately, the cancer had spread to his brain and was pushing his eye out - it was really horrific. My partner and daughter were very close to that child; they watched him getting worse; they saw the father going crazy. The mother was French, the father Egyptian. The kid was adorable, a fine-looking little chap, full of life. One day, sadly, he died. It was very hard on my partner. She said to me, ""If it had happened to you, it wouldn’t be so bad because you’ve already got three children". That was a slap in the face. It was a pretty monstrous slap in the face, but when you think about the pain a young mother’s going through, you take it on the chin.  
But at that time, I couldn’t take it. As far as I’m concerned, I had four children, all equal ... So what is she going to say when the kid dies, "But the mother’s still got two more, so it’s not all that bad."
 
There are times you say some really stupid stuff to cauterize the pain.
 
I also learned afterwards that she always thought our baby would die. She wanted to believe that so it would hurt less if it happened. Whereas I, right from day one and even before we left, I told myself, this is my daughter and she’s not going to die! That’s it, period.  
I wasn’t at all in the same frame of mind. Worse, I heard that her father and mother thought there was no hope for our girl. Her dad’s a doctor, so I understand that - he sees people who are sick, maybe he sees more medical failures than successes. But it was his first granddaughter, damn it! Some support for the mother!
 
When I saw how much my daughter was costing a week, roughly €10,000, I thought, is she really worth that? I had this thing, too, about economic health even though I am her father and I think I might have said that to the mother - which was pretty stupid.
 
She’s the one who’s going to have to live with it.  
Letting her down I might well be, but I'm out of it and pretty quickly.
 
There are times you say some really stupid stuff to cauterize the pain.  
Telling a mother that that’s pretty costly for a child ... I shouldn’t have said it. I don’t know if it was a joke or irony; it’s complicated when you're feeling down.  
So we lash out at each other, no holds barred.
My problem is that I have to find somewhere, an apartment to put the child in away from the hospital. They aren’t kept in a bubble any more, but sent to live outside. No question of going back to Ireland for the mother because the treatment will take six months.  
So the poor woman started living in a kind of purdah, surrounded by ill people and kids some of whom are even younger than Léa, and are in a pitiful state; dying children, parents out of their minds; horrendous.  
And she’s the one who’s going to have to live with it.  
Letting her down I might well be, but I'm out of it and pretty quickly. I think it’s a man thing. We don’t produce the children, so the pain’s never going to be the same.
 
I went off hunting for a pad. What did surprise me, I didn’t think estate agents could feel sympathy. They all knew someone with cancer. When they heard how a child could be sick at 15 months, and when I told them that there were even younger ones there, they said it was horrible, unacceptable and they would find us an apartment.  
A six month lease is no easy thing to find though. Everyone was very nice and very soon we found a nice little place with sympathetic owners who understood about the pain. My daughter being cute and her mother beautiful also helped.  
Then it was the organizational stuff. Who stays? Who knows what to do?  
Was the decision forced or accepted - I don’t know.  
I work so I had to go. I went back to Ireland. The mother told me, "I don’t actually need you to be there while I'm in Curie, because I'm inside, so you come the week after".
 
I never thought of love-making as messing around, but whatever, it isn’t easy at times like that.
 
The next week, we thought things would be on the up because we were coming out the other side. But as it went, things weren’t on the up. First, she started gradually losing her hair; so we had a child who wasn’t "normal". It didn’t bother me personally, but her mother found it hard to go out with a little girl with no hair - no eyelashes or eyebrows. The treatment also required a daily injection to dissolve the clot. Then we’d discover the hassles of chemotherapy - the needs for blood and platelet transfusions, etc., and the fears about hepatitis, AIDS, the contaminated blood affair in France.  
We had to go to hospital. Hospitals are not made for kids having chemotherapy, they are general hospitals. So you can catch a whole range of things there and Léa did catch some things.  
The week after, they came out of Curie. It was the weekend and I came back. It had been a while since I had seen my partner, and she’s pretty hot. Obviously, I had certain urges.  
Later, she said to me: "How do you expect to mess around next to a little child with cancer?"  
I never thought of love-making as messing around, but whatever, it isn’t easy at times like that.
 
The big problem with this Institute as well is that there is no psychological support for parents. There is for children, and teenagers in particular have a huge need for it. It's beyond belief - when we went for my daughter’s check-ups, I saw some teenagers who were getting straightened out; they were having awful stuff done to them, and reconstructive surgery wasn’t scheduled for straight away. Considering that teens already have self-image issues, it really is the wrong time to get landed with a thing like that. You get the feeling that a baby doesn’t care. But a teenager, it's terrible to hear those groaning, breaking voices ... God it’s diabolical!  
Afterwards, I wondered if my partner had heard and seen it.
 
She was blue and grey. I was holding her and she was trembling. They were putting cold compresses on her. They had to clean the catheter; I thought she was going to die.
 
To top it all, at that time everyone was dying: my brother died of AIDS in 2000, my father had recently died of cancer, my mother was in a pitiful state ...  
In the week I was there, she started running a fever on the Thursday.  
So off we go, back into the fray. Bundle the little thing up - middle of the night, obviously - and off to hospital, where they’ll put her on antibiotics. It almost worked every time except once; we were coming to the end of chemo and looking at the operation.  
Didn’t happen. The catheter got blocked. The day after she was taken in, the antibiotics were still not doing their job. The infection was pumping out toxins; her fever went up to 41 then 42°. She was blue and grey. I was holding her and she was trembling. They were putting cold compresses on her. They had to clean the catheter; I thought she was going to die. She wanted her mummy. I was supposed to be looking after her that week, but I had to give it up and her mother got even more worn out.
 
She was shut away in the hospital for a week and then afterwards shut away again in her apartment with her “not normal” daughter.
 
They treated the cancer; they were going to kill her because they messed up with a catheter. Really not good.  
I find it hard to blame them, because I’m a vet and I’ve dropped some clangers too. I know how it is. Also, the night shift is tiring and it's not an easy job; they don’t know how many people they’ll have to treat; they’re not fully equipped for paediatrics. It is a paediatric department, but for treating children like that, they could maybe do with something a bit more sterile? Epidemiologically-speaking, a hospital is a mix of ghastly stuff, there are germs everywhere. When my daughter is outside, she catches germs, too, but she isn’t in contact with so many kids. Particularly as her mum didn’t want her to mix with others.
 
I brought her back a car, taking the ferry from Dublin to Cherbourg - an 18 hour journey. I got to Paris, and found a parking spot. I thought having a car would give my partner more reassurance. I could well imagine she felt imprisoned. But that was a complete write-off because she didn’t want to go out. She was shut away in the hospital for a week and then afterwards shut away again in her apartment with her “not normal” daughter.
 
I asked: "So how can I prove that I love you?"  
And she replied:" Do the dishes".
 
It wasn’t at all the way I saw it. I was happy to take her out it. I didn’t care that she had a bandana on her head. I didn’t see the problem. I couldn’t give a stuff if people look at me. We just weren’t at all the same any more. I want a woman to be a woman, even if for the moment she’s more of a mother and a nursemaid, to put it bluntly.  
I asked: "So how can I prove that I love you?" And she replied:" Do the dishes". That's the answer you get thrown at you. There’s a lot unsaid there. It’s saying I’m focused on Léa, anything other than Léa costs time. And since the child was born, time has also become something crazy, a life ticking away.
 
So the care staff put the wrong drip bag on. They fitted Léa’s bag to the other child and vice versa.
 
As regards my partner’s parents, I didn’t get the impression that they were there for their daughter or their granddaughter. Family relationships are complicated; maybe that explains them being in denial about the illness? Maybe they were scared of finding out that it wasn’t treatable? There’s no escaping death. But death by treatment, that’s ghastly. Léa’s grandfather is a blasted medical doctor while one of my partner’s sisters did her doctoral thesis on alternative medicine. So anything to do with psychology is looked on as daft in that family. And we were living in the countryside. So it was what was tangible, feasible, acceptable. It's like when you talk to Africans about people with depression; they say there’s no such thing.
 
There were a lot of mess-ups. One night in Curie, my daughter and her mother were in a room with another child with cancer whose parent should have been in the "parent house".   
So the care staff put the wrong drip bag on. They fitted Léa’s bag to the other child and vice versa. My partner noticed it - I don’t know how - and got it changed over. It’s horrific what she’s gone  through, but my partner also didn’t want to get the sack for someone who might be dead on their feet.  
My partner was bearing the brunt. I was detached in her view. Maybe I was out having a good time. Friends would invite me now and again. But I couldn’t do it. I remember a barbecue. I didn’t stay more than two hours. I saw people having fun with their children; my mind was on Paris.
 
We were arguing all the time during that period.
 
I often wonder if I should have called her every day to find out. It’s not my way. I’m a vet and a bit old school. Phones are for emergencies. No news is good news. And also, as a man, you learn not to cry, not to react. I'm strong, I’m not expected to cave in.  
Afterwards, you get flak for it. They think that you’re broad-shouldered so everything bounces off. If the other person’s down, and you are too, the other one won’t like it. So, nobody is down. You bottle It up; it’s ghastly. That’s how we lived all the time.  
We were arguing all the time during that period. I love my partner; I need to unwind, but I can’t cheat on her. It's awful, because I think to myself that at times like that, I should look around elsewhere. But she mustn’t find out. And yet I didn’t want to cheat or do anything. I should also have done some sport.
 
We also felt lost. My partner had no-one to lean on, no girlfriend; and nor did I. We were living hidden away in Ireland, like a couple of outcasts; me - not yet divorced and living with a woman twenty years younger. No-one liked us, quote-unquote, or at least I think not.  
My partner was quiet and introspective; I’m more loud and out-going.  
Our relationship problems got worse during the cancer. My partner hid herself away even more when the kid was sick. She told me later that if she’d had psychological support, she wouldn’t have been able to cope. She needed to be self-contained to focus solely on the kid.  
We had planned on having a second child, but we never did have another. All this was more than enough by way of problems.  
She also told me later that she wanted to have a second to show her family and the world that she was capable of having a "normal" child. The worst thing is that my other three children are "normal". I told her it was just the luck of the draw, a "bad break".  
Another really bad thing for her was when she was in Paris, in the Latin Quarter where the Curie Institute is, was that she saw people sitting at the pavement cafes in May in the sunshine when she was shut in with a kid to watch over. There were five bouts of chemo between February and July. We went through hell and back - well not quite, because she survived. We very quickly knew that this treatment would work. The drugs have an almost 98% success rate; afterwards there are the secondary risks from them.
 
When you see that people are paying €10,000 to treat our daughter, when you look at this great solidarity system, you feel good about people.
 
After the blocked catheter business, there was yet another thing. When it came to the operation, scheduled for early June, no luck, she had a fever. She had Clostridium difficile, a hospital-acquired infection. The operation had to be put off. Her mother thought this was the same as happened to another little child in the ward, a little Egyptian boy whose treatment didn’t work. She was convinced the cancer had come back and her daughter was going to die. At that point, I didn’t know, she didn’t say anything.  
We have a view that medicine and science can do everything. We no longer accept death.
 
What I think is important is to tell politicians, "Hands off!" When you see that people are paying €10,000 to treat our daughter, when you look at this great solidarity system, you feel good about people. Pay-as-you-go systems - be it for pensions or health care - are fundamental to keep society working.
 
Looking at him, I can see everything he is thinking. He’s thinking it's because of this crappy system that wants people to make money, keep the economy turning.
 
She was operated on in July, perfectly successfully. The tumour was in a bad position, not far from the rectum and anus. The surgeon had to scrape some of the rectal muscle so we were afraid that our little baby might have difficulties with contraction and expulsion. In September, we went back to Ireland. My daughter was aplastic, so we went to the hospital for her platelets and cells to be topped-up. So we were forever in the hospital because she was forever catching something. We settled into a protocol drawn up by the Curie Institute, which is also a research institute. We obviously accepted the protocol because these researchers were saviours for us.  The follow-up was to be done part-time at the Curie Institute in Paris and the Irish hospital. There we saw they had a network of oncologists in Ireland, especially in the hospital we first took her to, including the clinical director who hadn’t seen the tumour. He had to do a digital rectal examination to see if it was painful, as required by the protocol, following the operation. When he saw my daughter, he clearly remembered everything that had happened. He carried out the digital rectal examination as gently as he could; it hurt her. The doctor was on his knees to perform it and said to her, "Forgive me". And I could see in his eyes that he wasn’t asking forgiveness for the pain caused by the examination, but for all the rest: he was a member of the cancer network and had missed it all ...  
Looking at him, I can see everything he is thinking. He’s thinking it's because of this crappy system that wants people to make money, keep the economy turning. I’ve got rubbish doctors working for me; all I saw was getting a bed freed-up; I didn’t try to find out what was wrong with her; no examinations were done for a week. If we’d been more proactive, she might not have had her metastases.
I saw all that going on in his apology. When we left the hospital, he again asked her forgiveness, quietly.  
This guy was humiliated. I forgave him because I know what kind of world we live in and I understand him. But you can’t help thinking. In Africa, a 15-month-old child dying is commonplace ... It's hard afterwards. I love my daughter, my youngest. I am really happy and relieved that she’s still alive. But at the same time, I say to myself that I live in a world of luxury. How can we have relationship problems when we eat, live well, have more than we need even, and are healthy? After an illness, you start to question everything.
 
Then, her mother went off to work in Belgium. I was about to turn fifty-one.
 
I think I was cowardly during that period. One day, a woman said to me: "You should have taken out a bank loan and stopped working; you could have repaid it afterwards." It never occurred to me. I wasn’t there enough. I find it very hard to take days off or even sick days. I didn’t take enough; if I had, we could have alternated staying in. It was a big mistake because she thought I was having a good time and she was worn out by it.
 
I had to get confrontational with someone. I needed sparring partners.
 
Since then, I’ve also understood that my partner said some harsh things because she was hurting so much. She had to find a reason for her daughter’s illness. The God of the Africans is always kind even when taking life very quickly. But we Westerners don’t work like that. It can’t be that God wants to take a child’s life, so you’re obviously paying for doing something wrong. Guilt settles in on illness.  
It’s been eight years since she was treated. It doesn’t mean she’s cured; she never will be. The fear will always be there.
 
Now, I’m the one who arranges the check-ups with the paediatric oncologist at Curie. When I go there, I feel bad because you see teenagers with horrible things. I didn’t experience all that when Léa was sick. She, on the other hand, likes going back to see the nurses and play where she used to play.  
But, while I may not have been there, I had a bad time too. I fell out with colleagues or my boss because I needed to. I had to get confrontational with someone. I needed sparring partners.  
My boss understood. One of his sons died.  
But I felt like a coward because I didn’t want to stay in that world that reeked of death, even though I was convinced she wouldn’t die. When I was alone, I prayed and cried. I don’t know if it did much good.
 
The couple are no longer together, but Léa is a sweet girl, 10 years old and in perfect health.
 
June 2012
 
Interview by Emmanuelle Vanbesien - Thanks to Veronica Van Derstraeten and Daniel Aronovitch for their careful desk editing.