'The day the sky fell in'
Susan Daly
July 25, 2009
The lavender plants lining the path to Lydia Roche's home in the south of France send up clouds of butterflies and fragrance as the visitor brushes past. From the shady terrace of her airy apartment, she takes in a view that sweeps down the rolling hillside to the town of Antibes and, beyond that, the sparkling azure sea where wealthy playboys anchor their yachts.
Even on this beautiful day, a cloud passes over Lydia's face as she describes the moment two years ago when "the sky fell in". Her youngest son, Florian, then just seven years old, was diagnosed with the most severe form of leukaemia.
He had complained of a tummy ache while on holiday in Ireland with his father Stephen Roche, the former cycling champion and Lydia's ex-husband. "When he came back I thought he was a bit skinny, very pale, but I think of the travelling -- I never think of leukaemia," says Lydia in heavily-accented English.
When he developed a blinding headache, doctors began to run tests. The diagnosis was shocking. Florian's white blood cell count was so high -- Lydia takes my pen and writes down the number 560,000, the number that is engraved on her mind from that day, September 2, 2007 -- that "his blood was not even red anymore".
Her first instinct was to ring Stephen, their daughter, Christel (23), and eldest son, Nicolas (25). "Within hours everyone was at the hospital, all shocked, all crying. It was terrible, terrible news," says Lydia. They were a family suddenly brought together by the worst nightmare imaginable.
Lydia married Stephen when she was 17-and-a-half. They have been divorced since 2003, after 23 years of marriage, a temporary split, a reconciliation and four children. A handsome young couple, they had brightened the gloom of the 1980s with his sporting success and her exotic French beauty. Early in 2007, the Irish public's fond memories were shattered by an interview in which Stephen suggested that the marriage had been marked by much unhappiness, particularly after he retired from cycling in 1993.
In a riposte, Lydia revealed her deep hurt that Stephen had spoken so negatively of their relationship. She was also upset by his suggestion that he had not been fully on board with the decision to have two more children, Alexis (11) and Florian (nine), after they moved to Ireland in 1998, not long after they had reconciled after a first attempt to divorce.
"Reading what Stephen said," Lydia said in April 2007, "I don't think it was like he says. Maybe I was wrong, but I thought things were great between us and, because he did not see so much our two first ones growing up, I thought if we had a baby, we could enjoy it together."
Neither had the remotest idea that just a few short months later, everything would recede in the enormity of Florian's illness. Lydia recalls one of the worst moments of her life, sitting in the ambulance with Florian as he was transferred to hospital in Nice. "I thought I should not cry, and there was a pain there," she says, pinching the bridge of her nose, "where I was holding back the tears. Florian was asking, 'What's wrong Mammy?'. And yet we still did not know how bad it was."
It was stage three leukaemia, and Florian's white blood cells were 98pc blast -- or cancer cells. Lydia would later be told that had she not brought Florian to the hospital that weekend, he might not have made it to Monday. That was just the beginning of a battle that would last two long years and, Lydia hopes, will end when Florian returns to school next month.
But back in September 2007, while his classmates embarked on another academic year, Florian was facing a fight for his life. "The initial treatment got [the cancer cells] down a bit, but it was out of control," says Lydia. The hospital in Nice contacted a special cancer advisory centre in Brussels, who offered to put Florian on a new trial treatment. "Stephen and I agreed. It was a trial, they were not sure, but for us the normal treatment was not working -- you would try anything at this stage."
Side by side with this severe treatment, doctors were readying Florian for a bone marrow transplant. All of the family were tested to see if they were suitable bone marrow donors. Only Alexis was a 100pc match; their first piece of luck, says Lydia.
"You have your child looking at you and you wonder, 'Why are we going through this?'. I know now what it is like to be with your child when he is only seven and it seems so unfair to him. You would like to take the sickness from him. Sometimes he would say to me, 'Save me, mammy' because he was in so much pain. I know he's not the only one, that others are going through that."
Florian and Alexis are playing quietly on a computer in the sitting room a few yards away from us inside the apartment, Alexis' fair head bowed in concentration over the dark one of his younger, paler brother. Florian cannot be in the summer sun because his skin is still photosensitive as a result of radiotherapy.
It is still difficult for Lydia to speak about how she watched her little boy in pain. But it is a story that must be told. When Florian got sick, Lydia found a shoulder to lean on in another mother whose daughter was on Florian's ward. "She had taught a lot to me because she was a few months ahead of what I was going through," says Lydia. "I had no clue, and she was my guide. We would cry on each other, we were there together every day."
Lydia hopes that by recounting Florian's battle, she might in some way give hope to other parents. "I think of her a lot," she says with gratitude to that unnamed mother, whose daughter's story unfortunately ended very sadly. On the day Florian had the catheter fitted to facilitate his bone marrow transplant, the girl died. She had received a transplant six months earlier. It was devastating for her family, but also for the Roches, who were steeling themselves for Florian's procedure. "I went to see her a few minutes before she went, and already that was too much for me," she says. Even now, her deep brown eyes swim with tears.
For weeks before the bone marrow transplant, Lydia took it on herself to keep Florian safe from infection. He had been on steroids to counteract the nauseous effect of the chemotherapy drugs. His body was struggling with the warring impulses of the hunger-inducing steroids and waves of vomiting. Lydia would feed him, morsel by morsel, as one would a baby bird.
"They can feed you by drip but we didn't want that. I had to try. We were eating bit by bit, for hours. Everything he liked I ran to the shop [for], everything had to be very fresh," she says.
"Sometimes he was depressed and crying -- when he was having the steroids and the chemiotherapy together. You learn on the way, you are not prepared."
Although she recounts these horrors in a calm and soft voice, it is clear that Lydia is haunted. The lowest ebb for Florian came shortly after the bone marrow transplant. He had been undergoing six hours of radiotherapy in preparation: a seven-year-old boy forced to lie perfectly still while the laser was inched painfully across his body.
"We had to kill Florian's own marrow, so slowly; you could almost say he was dying," says Lydia. He was so weak that he did not speak for a week. On three of those days after the transplant, waiting for Alexis's cells to show up in his body, he was suffering badly. His jaw area collapsed as his body disintegrated, and the morphine dosage was increased to the highest level possible.
When words fail her, Lydia lays a folder carefully on the table. There are pages and pages of foolscap covered in her writing, each day of Florian's illness charted in columns of figures, descriptions of treatments and remarks on his wellbeing. One day, March 9, 2008, has a stark entry. "Souffre beaucoup." Suffers a lot. The folder helped Lydia to understand what was happening to her son, to not miss a beat. And, one suspects, to keep a small sense of control in a situation that was almost entirely out of her hands.
"I prayed a lot," she admits. "It's strange -- you could be cleaning his little table, but your brain is working, 'Please God it will be fine, please God it will be fine'."
The whole family has been deeply affected, Alexis in particular. He was afraid of needles, says Lydia, but never once complained about the transplant procedure he had to undergo to save his brother. "He did it like a big man, he was very brave," says Lydia proudly. "Alexis had to speak to a psychiatrist and they explained that Florian could die, and that it would not be his fault. Imagine being 10 -- that was heavy to hear."
Christel returned to help from Canada, where she had been studying for a masters in marketing. Lydia shows me a photograph that Christel took of Lydia, Alexis and Florian as they celebrated a belated Christmas when Florian was spared a few days at home from the hospital. "I keep it in my purse," says Lydia with a small smile.
In it, she is wearing a smart shirt and hugging her boys tightly, but the strain is etched on her face. Florian's head is shaven and his fragile body bloated from the steroids. His parents simply told him that his hair was too long and needed a cut. "At seven years, you have to go about it a funny way. We said, 'Oh it's nice, it suits you'. There is enough shock; you have to protect him." The dark curls he inherited from his dad have now grown back in abundance.
Nicolas, a professional cyclist like his father, had to spend much time away from home, although he was with Alexis for his marrow donation when Stephen caught a flu virus. Lydia recounts how Nicolas developed ulcers from stress. "In May last year, he had 10 ulcers in his stomach, three were bleeding. He was so upset about his brother, but still he had to do his job."
Everyone's lives have regained a semblance of normality. Christel is on a work placement in Dublin, and Nicolas, winner of the Irish National Road Race Championship this June, has been riding spiritedly in the Tour de France for AG2R-La Mondiale. That must have its own particular stress, considering his father's previous success? "Nicolas, I think this year his brain is better because he is happy." Lydia beams as she speaks of travelling to Monaco for the opening stage of the Tour this year, but won't see him again until it finishes, which it does tomorrow in her native Paris. "But Stephen has gone to the Tour."
She mentions her ex-husband's name without hesitation, where two years ago she found herself shaken by a newspaper clipping put through her letterbox by a friend. It contained the interview Stephen had given alongside his then-girlfriend Sophie on a trip to Dublin. "Everything was a fight and when there's no love it's very hard," he had said of the dying days of his marriage to Lydia.
At that time, Stephen was moving between Sophie's home town of Paris and the seafront hotel near Nice which he and Lydia had bought in 1999 on their return to France from Ireland. He moved into the hotel permanently when Florian got sick. "He's not with his girlfriend anymore," says Lydia, referring to Sophie. "He has a new girlfriend since last year who seems to be very nice. Apparently, she lost her mother to a kind of leukaemia, so she was very sensitive to the fact that Florian was so sick."
It is clear that, even if they have separate lives now, Lydia and Stephen will always be bound by their children. "When something happens like that, in the family, everybody gets the pain. You have to change your priorities, it makes you think," she says. "Sometimes you have a small problem and you cry or fight over it, but here you have the biggest problem in the world and you deal with it."
They bought a cake together for Alexis and Florian on the first year anniversary of Florian's transplant. "We celebrated this year, Stephen and I, with a little cake. We celebrated the two of them. We are so proud of them," she says.
The future is not the fixed entity it was before the Earth-shattering trauma of Florian's illness. Lydia can only think to the next month, when Florian returns to school after a two-year absence. Perhaps later she will start to think as far as a year ahead, tentatively hoping for no return of cancer cells.
She has spent two years practically living inside hospital walls. When I ask what Lydia feels now about getting her life back, she looks blank at first, then a smile grows slowly across her face. "The little bit I go out, it's like Christmas!" she laughs. "When I came out of the hospital, you would not have recognised me. I was really thin, I looked 50, I was really marked."
Today, Lydia Roche is slim, in a pretty sun dress with freshly-washed blonde hair and a fresh, unlined face that could belong to a woman in her 30s. She is 45 this year.
"We went through the divorce then the sickness. We have not had many happy times in the past few years here, so now I really want the blue sky and the sun, and the finish!" she says. "We have to be happy, please God. We went through the wars."
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