Medical History

Chronicle of Leonora’s Illness, September 2000 – June 2001

Approximately one month after her nineteenth birthday, Leonora began experiencing pain in her legs when standing and walking. During the Easter holidays of 2000, she was completing a nursing placement on a surgical ward at Hall Hospital. In early May, a specialist in physical medicine diagnosed a mild sciatic nerve disorder and prescribed exercises and vitamin B. The pain improved and sometimes disappeared entirely, including during her stay in Ireland. Although her medical studies were demanding, she otherwise had few complaints. During the summer holidays in Portugal and Madeira she suffered occasional severe headaches. Nevertheless, after returning in early August, she began sitting through the night with patients at Natters Hospital, some terminally ill. Her headaches worsened, she became pale and thin, and the leg pain returned. She took strengthening remedies and painkillers but continued her normal life. During a visit to Vienna in late August, the headaches became unbearable. The migraine clinic at Vienna General Hospital diagnosed neuritis of the cranial nerves and prescribed Voltaren. By early September she could barely move without difficulty. The pain came and went, and she described disturbing dreams.

On 8 September 2000, following CT and ultrasound examinations and a differential blood count, an internist recorded a slightly raised erythrocyte sedimentation rate, evidence of earlier viral infections—cytomegalovirus, herpes and Epstein–Barr virus—and, above all, a suspected psychogenic pain disorder. She prescribed an antibiotic, strengthening medication and a muscle-relaxing anxiolytic. As both she and Leonora’s general practitioner were about to go on holiday, she recommended admission to the neurological department in Innsbruck if the pain persisted, possibly for a lumbar puncture. On 11 and 12 September, the symptoms intensified. On 13 September, Leonora, Marco Conci and I travelled to the hospital in Trento. At the initiative of Dr Pedrazzoli, preparations were made for a lumbar puncture and inpatient medical examination. Suddenly Leonora felt free of symptoms, so the procedure was cancelled: the clinical picture seemed too diffuse and inconspicuous. The next day, the pain returned in Innsbruck. I accused her of pretending to be ill. Believing herself to be neurotic, she baked a cake to apologise for what seemed an unnecessary drama.

On Saturday, 16 September, Leonora attended the neurological outpatient clinic in Innsbruck with severe leg pain but was turned away; the next appointment was on 2 October. That night an emergency doctor advised magnesium by telephone. On 17 September, a distinguished German psychoanalyst, hearing of her “case” in group supervision but never examining her, attributed it to an adolescent crisis caused by her mother’s new relationship. He recommended ignoring the matter as far as possible, considering a psychogenic gait disorder most likely. I had feared meningitis, from which her Portuguese aunt had died. On 18 September, her eagerly awaited Australian host family arrived. Despite severe pain, Leonora drove, cleaned the house with a friend, shopped, carried groceries upstairs and cooked for six. Because of the shortage of space, we shared a room for the first time in months. After a dreadful sleepless night, I recognised how seriously ill she was and resolved to act. Even her Australian host parents—the father a doctor—suspected psychogenic pain. But on 19 September Dr Kantner-Rumpelmaier of the Innsbruck pain clinic said that neurological inpatient investigation was essential before diagnosing somatisation. Dr Oberbauer offered a bed on his specialised psychiatric ward, where the necessary neurological investigations, especially the increasingly urgent lumbar puncture, could be performed. Leonora was admitted that day, accompanied by the Barnetts and me. On the afternoon of 20 September, after extensive examinations, we were told that the preliminary diagnosis was merely a lingering streptococcal throat infection. Despite terrible pain, Leonora was delighted and anticipated discharge. Fifteen minutes later, as I was leaving, Dr Oberbauer called me back. Soon afterwards, Leonora learned that she probably had leukaemia—blood cancer.

The following morning she was transferred to haematology and oncology. Bone marrow aspiration produced a dry tap (punctio sicca), indicating acute bone marrow leukaemia and virtually no remaining healthy marrow. On Friday, 22 September, she entered the isolation unit of Haematology I. Senior Consultant Dr Gunsilius explained that the initial suspicion of acute lymphoblastic leukaemia (ALL) had given way to acute myeloid leukaemia (AML-M1), with minimal cellular differentiation and a substantially poorer prognosis. Shocked and suffering, Leonora nevertheless wanted to understand the science: she had studied chromosomal translocations and genetic abnormalities that summer. After her lumbar puncture, she had mistakenly been made to stand upright for a chest X-ray, causing further excruciating headaches.

Room 7 of the isolation ward became a centre of activity while chemotherapy was prepared. Friends visited, and the administrative and medical directors showed their concern to Professors Gastl and Petzer. Photographs of a Himalayan expedition, other pictures and protective amulets filled the room. Family and friends at home and abroad telephoned and wrote; my own friends supported me like a loving family. Dr Defregger, recently returned from America, immediately became involved, as did Dr Villotti and Dr Lona from Trento and Professor Schmalzl from Hall. Professor Schmalzl explained the risks and probable outcome of chemotherapy to me while I was completing my final ten days as a psycho-oncology therapist. Given the severity of the illness, palliative treatment instead of aggressive chemotherapy would, he believed, mean certain death very soon. Other doctors and the literature we hurriedly consulted confirmed this judgement. Dr Barnett, returning from a gynaecology conference in Washington, discussed removing ovarian tissue to preserve fertility. Dr Waitz-Penz and Professor Mocayo discussed hormonal support with the haematologists, but surgery was ruled out. When the diagnosis was given on 22 September, the senior physician had bluntly said: “The ovaries are full of cancer cells anyway. And, let’s be honest, what good is a mother to a child if she dies after two years?”

On 25 September, we organised a rota of friends and relatives who wished to visit and support Leonora, inspired by the book Share the Care. She continued antibiotics and painkillers and wanted her long blonde hair cut to make a wig; a relative offered to pay. She remained composed, seldom crying in front of visitors for fear of upsetting them. Psycho-oncological and psychosocial assistance was arranged with Ms Oberhauser and Ms Schiessling. A Tibetan monk from a Vorarlberg monastery visited that Monday, followed by the hairdresser. On 26 September a central venous catheter was inserted under local anaesthetic. Further tests showed no significant abnormalities beyond the underlying disease. The planned standard protocol involved two induction courses with Alexan, etoposide and daunorubicin, consolidation with Alexan, and maintenance with high-dose cyclophosphamide and busulfan. Her white blood cells would fall to virtually zero, leaving her defenceless against potentially fatal viral, bacterial and fungal infections. With no full siblings, she would also need a worldwide search for a bone marrow donor.

Chemotherapy began on 27 September. For ten days Leonora lay in Room 7, and later other rooms, connected around the clock to an infusion stand delivering up to five substances through the catheter near her heart. Additional medicines included Ciproxin, Amphomoronal, amphotericin B, Paspertin, Navoban and Largactil. She measured her fluid output, maintained preventive oral and skin care, inhaled and performed breathing exercises. Constantly monitored and nursed, she remained extraordinarily brave and uncomplaining. She immediately discontinued the routinely prescribed Temesta and endured almost nine months of treatment without psychopharmacological support or sleeping tablets. During the night of 28–29 September she awoke with terrible back pain and at five in the morning was taken lying down for emergency imaging. She had suffered a prolapsed disc; doctors feared bladder paralysis and possible leukaemic infiltration of the spinal cord. Emergency surgery seemed likely—after just two days of chemotherapy. But on the afternoon of 29 September Professor Jaschke reassessed the scans and an MRI. At four o’clock came the relief: no operation, abscess or leukaemic infiltrate, “only” a complete disc prolapse that could be managed conservatively.

Further rectal complications brought constant pain, nearly uncontrollable bleeding and digestive problems. Her white cells fell and fever began, caused by staphylococcal infection; she also suffered extensive viral infection. Treatment included Fortum, vancomycin, Certomycin and intravenous Zovirax. The period of aplasia, with strict isolation and dietary precautions against fungal infection, lasted until 20 October. Everyone entering wore a mask, disinfected their hands and stayed away if infected. Leonora’s appearance changed: dry skin, a frightened and drawn expression. Exhausted by constant infusions and getting up every two hours at night to measure fluid output, she slept much of the time and could hardly read or watch television.

Her father arrived from Lisbon on 2 October and stayed until late November, spending many hours each day with her. Other visits were restricted to those closest to her. From early October, a Chinese-Tibetan doctor in Germany, a traditional Chinese medicine facility in Saarland, a Tibetan woman doctor in India and monks in Switzerland were consulted for supportive treatment. Hospital staff practised visualisation with Leonora. Her former Buddhist group, her teacher Professor Schromm, monks of Letzehof Monastery, a Munich psychoanalyst’s meditation group and many friends prayed and meditated for her. Chemotherapy-related liver changes required regular imaging; enlargement and treatment-resistant damage were found. On 24 October, after five weeks, she was discharged for the first time. Very weak, with some wasting of her leg muscles, she could at least eat normally again. She met friends, visited her aunt, accompanied her father to her boyfriend’s family and enjoyed nature and drives with me as much as possible.

On 2 November she returned to hospital. Bone marrow examination showed blasts reduced from 100 per cent to 8 per cent: partial remission, though the desired level was below 5 per cent. A liver biopsy on 6 November caused severe pain and a small internal haematoma. For days she could scarcely move, and until well into January she sometimes walked bent almost at a right angle, clinging to her infusion stand. The second chemotherapy, on which her prognosis depended, became torture. Liver damage accelerated, affecting spleen and kidneys as well. For the first time, she displayed pronounced changes in mental state, apparently an acute organic mental disturbance. In my presence she experienced several seizure-like episodes, which passed without lasting effects. A reddish rash was followed by severe jaundice; cortisone caused swelling, especially of the face. Bleeding returned, her skin dried out, and the strict diet and chemotherapy nausea destroyed her appetite. She repeatedly vomited dark fluid. Antifungal treatment for suspected invasive infection caused chills. Several times she fainted in the shower, striking her head and body. Her fever fluctuated, inflammatory markers were frighteningly high, and she grew weaker. She knew every moment how many ways she might die: leukaemia, chemotherapy, antifungal side effects, liver or multiple organ failure. She neither denied the danger nor complained. She remained polite and carried on, despite urinary infection, nausea and abdominal and head pain.

Then catastrophic mucosal damage, particularly to her mouth and oesophagus, overshadowed everything. Mucositis prevented her from eating or drinking for twenty days, though she was hungry and thirsty. The nurses, especially Sister Helene, tried tenderly to help, even offering tiny pieces of pineapple ice. For three weeks she needed continuous Vendal, a strong opioid, through a pain pump, while avoiding excessive sedation and respiratory suppression. She drifted in and out of sleep, interrupted by pain, with occasional memory and concentration difficulties. Her swollen legs barely supported her. A physiotherapist came daily to massage her and practise breathing. Oral and skin hygiene, breathing exercises and stimulation of her extremities became vital. Ward rounds with Professor Petzer, Dr Gunsilius, Dr Sudmeier and Dr Spizzo, and Professor Gastl’s Wednesday rounds, challenged the doctors scientifically and personally; they consulted colleagues abroad. Suspected pneumonia proved mistaken, though Leonora coughed and felt stabbing chest pain. Ascites and fluid retention caused weight fluctuations. Everything possible was done to ease her suffering, but the side effects of chemotherapy had to be endured if she was to have any chance.

After nearly two months, she was finally discharged for Christmas, with the third chemotherapy planned for 2 January. Her parents, half-siblings, aunt and two small cousins had all been tested as donors, without success. We hoped for an unrelated donor. Leonora wished to spend Christmas alone with me at Lake Achensee. She could eat and drink again but could not stand upright after another liver biopsy and painful examinations. She walked slowly in pain; medication added to her weakness. Friends, family and her own will, sometimes strengthened by youthful stubbornness, sustained her. On 22 December, the day of discharge, we visited the café at Ambras Castle where we had celebrated her nineteenth birthday nine months earlier. That evening we watched the José Carreras Gala and first heard of the foundation’s research and transplantation facilities. At night she repeatedly rose, vomited and doubled over in pain; she could barely lift her feet when walking. Yet she enjoyed contact with friends from university and school, relatives and supporters across Austria, Portugal, Italy, Germany, Australia, the United States and a Tibetan exile community in Kerala. Nature comforted her, although she regretted being forbidden contact with animals.

On 27 December, after a singing-bowl massage, Leonora suffered another crisis and vomited bile. Professor Schmalzl admitted her to Hall Hospital and consulted Innsbruck. Gallbladder inflammation and fluid beneath the liver were suspected. She stabilised, and at last the bone marrow results arrived: the dreadful second chemotherapy had achieved complete remission. For the time being, the leukaemia was defeated. She was discharged before New Year’s Eve and celebrated at her friend Christine’s home. Christine, like her cousin Lisa and friend Lilli, had often shared a bed with her to give her a sense of belonging.

On 2 January 2001, returning to haematology under the direct care of Dr Spizzo from Luxembourg, Leonora received another devastating message: her liver was too badly damaged for the third, liver-toxic consolidation chemotherapy. No donor had been found, and the leukaemia could return within weeks or months. A relapse before further chemotherapy would leave very little chance of recovery. Leonora’s life, and the efforts of all fighting for it, had become a race against time. At home she was taken daily for antifungal infusions, potassium, antibiotics and blood tests. Her arm veins were badly damaged after removal of the subclavian line. Ultrasound and CT repeatedly showed enormous, spreading lesions in liver and spleen, resistant to treatment. Repeated outpatient biopsies through the abdominal wall, which Leonora dreaded, yielded no diagnosis despite clear CT findings. The powerful antifungal therapy might have been causing harm without benefit. Admission dates were repeatedly announced and withdrawn because her liver could not tolerate chemotherapy. Reports recorded AML-M1, CD19/CD22 positive, normal karyotype, partial remission after first induction, complete remission after second; current complete remission with liver and spleen lesions suspected to be aspergillosis, urinary infection, previous renal retention and toxic liver damage.

During January and early February, we performed organisational acrobatics to manage everything. After her daily clinic appointment, Leonora accompanied me to my practice in Hall and the university in South Tyrol. She travelled by taxi or with fellow students who kept her informed about her course. Our Tarock group resumed. She stayed with friends, sometimes overnight. We spent a short weekend at Lake Garda and in Trento for sunshine and warmth. Having received an email address in hospital in October, she wrote to friends worldwide, especially in Australia, and communicated frequently with her siblings in Portugal and Tibetan foster brother in India. Her father called twice daily from Lisbon. A vast support network formed. Her hair began to grow, and she increasingly went out without a wig.

Despite her daily exhausting pilgrimages to hospital, Leonora’s zest for life returned. She wanted to go out, dance and be a young woman. On 20 January she attended a première at the Tyrolean State Theatre with her medical student friend Clemens and us. On 9 February she appeared at her former school’s graduation ball in an evening dress with short purple hair. On 11 February she saw a vigorous production of Schnitzler’s Reigen in Hall. Yet the liver findings remained disastrous, with no third chemotherapy in sight. Surgery was being considered, so we sought a second opinion. On 21 February, carrying laboratory results, medical reports and CT scans—including one from 19 February showing extensive lesions—we visited the José Carreras Centre at Großhadern University Hospital in Munich. Leonora toured the research facilities. Dr Dr Haferlach, internationally recognised for leukaemia research, confirmed the Innsbruck provisional diagnosis and treatment approach. He called her risk “intermediate”, assuming the lesions were fungal. Leonora was fascinated by the laboratory and hoped to become a haematology researcher herself. She discussed science with him almost as an equal, and he showed us the facilities and explained embryonic stem-cell research. Exhausted but uplifted, we returned the same day: on 22 February Leonora was admitted to the Innsbruck surgical transplantation unit for an open liver biopsy, following a consultation between Professors Gastl and Vogel and an external German colleague. Professor Petzer also recommended a Hickman catheter to spare her further needle punctures.

On 23 February, barely thirty-six hours after Munich, Professor Margreiter operated. Leonora was calm and chatted with staff beforehand. After three hours he emerged agitated: “Everything was thrombosed, everything! I could hardly get the Hickman in!” He explained the extreme difficulty of inserting the line into the subclavian vein. When I asked about the liver, he replied briefly: “There’s nothing wrong with the liver.” A doctor from the Institute of Hygiene had collected the biopsy during surgery, but Margreiter believed the naked-eye appearance already reassuring. Leonora spent much of the day in recovery. Her battered body now had a ten-centimetre wound in her right side and catheter entry and exit sites, with three tubes running beneath the skin. The anaesthetic had lasted three times longer than planned because of the thromboses, but she recovered well. On 24 February we discovered that no histological examination had been arranged: the entire sample had gone to Hygiene, and Margreiter had not been told it should also be checked for leukaemic infiltration. It was uncertain whether any suitable tissue remained for Pathology. Doctor friends were contacted, and our anxiety began anew.

The International AML Congress had begun in Munich on 24 February. I returned on the evening of the 25th and spent three days during Carnival trying to understand the latest research while Leonora waited in Innsbruck for the results. The lectures showed how limited prospects for curing AML remained. A psycho-oncologist at the transplantation centre, herself an Austrian internist and psychologist, advised palliative blood transfusions, suggesting Leonora might then have another good year. She said she would never undergo chemotherapy and transplantation herself; most patients would die anyway. My long-standing supervisor Edmund Frühmann, who had worked in Salzburg haematology, expressed a similar view. Eventually a sample was examined in Innsbruck Pathology, probably through Dr Spizzo’s initiative, but the report was delayed.

Leonora was discharged on 1 March. She called her catheter “Hicky”, tended her wounds herself and cheekily let the tubes show beneath her jumper. There was still no histological result and no fungi had been cultured. On 5 March another marrow examination showed that, despite over two months without chemotherapy, the leukaemia had not returned. Then, on Tuesday 6 March, came a miracle: the liver lesions that had been enormous on 19 February, but not visible to Margreiter during surgery on 23 February, had markedly diminished on ultrasound and CT. The suspicion that the biopsy had simply missed the affected areas was unfounded. Margreiter’s visual judgement had been right. Lesions described as extensive and progressive despite months of Ambisome, and still judged fungal on the Munich scans, had largely vanished within days without an apparent explanation: spontaneous remission. While I had desperately sought rescue therapies from researchers in Germany, the Netherlands, Italy, America and Israel, Leonora’s liver and spleen had recovered. The way was clear for chemotherapy.

On 7 March, Professors Petzer and Nachbauer and Dr Gunsilius explained that no donor had been found, but Leonora was now sufficiently stable for two further chemotherapy courses followed by autologous stem-cell transplantation. We spontaneously invited family and friends to Lake Achensee for her twentieth birthday on Sunday, 11 March. Thirty-five people came to give her strength. She returned to haematology on 13 March, beginning six days of high-dose Alexan on 14 March. On 16–17 March a conference on cancer aftercare presented the planned TILAK rehabilitation centre in Natters. Experts including Professors Gastl and Söllner discussed rehabilitation, and administrative director Laimböck attended. Although on her third day of chemotherapy, Leonora joined the first day. She was isolated from 18 March; aplasia lasted from 19 March to 6 April. This time side effects were milder. She suffered sinusitis, bronchitis, an upper respiratory infection and a drug rash requiring changes in antibiotics (Fortum, vancomycin, Vibromycin), but less pain and far better eating and drinking. Meals prepared according to her restrictions were brought in, and she continued oral care, breathing exercises and massage. Her hands and feet reddened and hurt but recovered after ten days. Most importantly, her liver and spleen tolerated the drugs for reasons no one understood. Expensive Ambisome continued; without Austrian social insurance, treatment costs would have been astronomical. Leonora passed a severe cold to me, forcing me to suspend visits during aplasia. She suffered abdominal complaints and developed fever on 29 March.

On Sunday, 1 April, she again vomited violently and her fever rose. I visited despite the infection risk. The next day the fever fell and white cells began rising, stimulated by twice-daily Neupogen injections—the “leukocyte party”, as the ward called it. She improved and first left the ward on 7 April. On Monday, 9 April, blood tests showed white cells above 25,000, making collection of sufficient stem cells likely. From the Munich congress and our reading, we knew the English word harvest. After such suffering, especially for Leonora, “harvest” expressed far more than the German words for collection. On 9 and 10 April she spent almost five hours each day attached to the blood-bank machine, which drew blood through the Hickman line, centrifuged it, separated the stem cells and returned the remaining blood. She tolerated it well and chatted with the exceptionally kind staff. The report stated simply: “Stem-cell apheresis on 9 and 10 April: sufficient CD34-positive cells collected.” They were frozen until after the fourth chemotherapy.

Discharged on 11 April, Leonora accompanied me to the Centre for Holistic Medicine in Igls to arrange rehabilitation. On our way home she announced that on 14 April, my birthday, she would travel alone by train to Tuscany, meet a friend in Florence on Holy Saturday and spend Easter with him and his family around Florence, Siena, Pisa, Lucca and Montecatini. Her gift to me was a therapeutic stay in Burgenland. So we spent Easter apart: Leonora in Pisa, where Manuel and I had chosen her name; Manuel in Lisbon; and I in Bad Tatzmannsdorf. Returning from Tuscany, she rediscovered ordinary life: staying alone in her flat, shopping, cooking, visiting friends, paying bills, arranging repairs and managing the bank. Everyday practicalities became precious. She visited restaurants, cafés and shops, wandered about, drove, ate favourite foods and delighted in comfort and freedom. She read political articles and reflected on the scientific logic of her treatment. Dr Spizzo remained an intellectual companion outside hospital. We considered a celebration at Ambras Castle when treatment ended.

Leonora’s father was due back on 25 April. Her readmission for fourth chemotherapy had been planned for 23 April, but no bed was available. Again came fasting, examinations, hours of waiting in beds or wheelchairs, journeys through underground hospital corridors and more waiting. She knew nearly every department. “I’m at home here,” she said. Gatekeepers recognised us and waved our car through. Supportive treatment began in Igls, and Leonora designed and posted party invitations. After the fourth chemotherapy, her frozen stem cells would be reinfused. If they engrafted, she had a good chance; if not, she might spend six months in isolation with aplasia, and her marrow might never recover. On the night of 23–24 April at Achensee, she suddenly feared the hospital and possible failure. Nevertheless she entered bravely on 24 April, and her father arrived the next day.

On 26 April, they were told that a young woman might now be available for an allogeneic bone marrow transplant. Fourth chemotherapy would be unnecessary; instead, discharge, total-body irradiation and transplantation were proposed. I contacted Gabi Schiessling for help. Leonora was devastated and initially refused the change. After many conversations she agreed, having been assured that the donor’s immune system could defeat the leukaemia permanently. The resulting state was described as a chimera, after the mythical composite creature. When she asked directly, she learned that she was probably already infertile; irradiation would make little difference, and the fourth chemotherapy would also cause infertility. Professor Mocayo was contacted again. We discussed the possibility of later implantation of a fertilised egg in America or Britain, and adoption. Leonora became preoccupied with motherhood, discussing it with a fellow patient awaiting transplantation. The party invitation and summer and study plans had to be abandoned; we read transplantation aftercare brochures.

On 27 April a new problem emerged: the donor was CMV-negative, whereas Leonora was CMV-positive, having suffered mononucleosis as a small child. The necessary immunosuppressants could reactivate the virus. Her blood was retested. By 28 April, the donor was ruled out because of life-threatening infection risks and the feared possibility of lifelong graft-versus-host disease, with severely impaired quality of life. On 30 April, Leonora telephoned to say she had registered at the medical dean’s office for her biology examination on 18 June. The original plan resumed. She was admitted on 2 May for cyclophosphamide and busulfan; her father left again. At first she tolerated treatment wonderfully, eating, reading, watching television and joking. Within days, however, her mood became almost manic and she was sometimes loud and demanding, especially with me. An antiepileptic drug prescribed to prevent seizures was blamed. No one had warned her of this side effect. Feelings of estrangement overwhelmed her; fever and severe mouth pain followed. On Saturday, 5 May, her scalp turned dark red and within minutes she seemed to relive the horrors of her second chemotherapy. The psychoactive medication appeared to awaken bodily memories of the terrible winter. A weekend doctor unfamiliar with her prescribed a Vendal opioid pump and potassium infusion. Her kidneys suffered, her feet swelled, and the doctor refused to stop the antiepileptic. Morphine further altered her state, although daily blood tests did not support fears of a medical repetition.

The crisis lasted forty-eight hours and two dreadful nights. On Monday, 7 May, the regular team stopped the antiepileptic, removed the Vendal pump and set aside the infusion equipment. Leonora recovered within hours. At 2 p.m. on 8 May, her autologous stem-cell transplantation took place. Monitors observed her heart, oxygen was ready, and students and nurses watched as Professor Petzer injected two syringes of thawed, pink stem-cell suspension into her Hickman catheter. The syringes resembled enema syringes. Leonora felt a tingling sensation like that caused by contrast medium. It was quickly over; rejection was not expected with her own cells. Now we had to wait to see whether they would find their way to the marrow and begin forming new blood cells.

That evening I emailed Sebastian, a former leukaemia patient who had fallen ill at nineteen and been treated in Germany and at an American cancer clinic in Minnesota. I had told Leonora his seemingly hopeful story. His father replied the next day: Sebastian had died months earlier. He sent his wife’s account of the illness and named research centres in America, Israel and Italy not represented at Munich. When I contacted the Roseville clinic on 9 May, I saw online that the Dalai Lama was lecturing there. From her hospital laptop, Leonora contacted these institutions, particularly the Weizmann Institute in Israel, and dreamed of a research semester in the Israeli desert after her preclinical studies. Money would need to be found.

Meanwhile, her white cells fell towards zero and her hair fell out again. Infection risk was high. She was back in Room 7, where her ordeal had begun. She tried to study biology but was discouraged by poor concentration. Visitors came less often, partly because the changing schedule had not been communicated to everyone. Too proud to admit how much she needed company, she watched television and studied when she could. A few loyal visitors remained. Dr Spizzo was an especially valuable friend, discussing life and learning with her through the weeks from 8 to 25 May. Her fever sometimes approached 40°C. CMV reactivation finally brought the pneumonia feared during earlier chemotherapy. She had somewhat neglected breathing exercises; medication and loneliness had also weakened her psychological resilience.

On Monday, 21 May, came the long-awaited news: white cells rose to 400, then 2,400, then 8,000. On Wednesday, 23 May, Professor Gastl announced: “The stem cells have engrafted fantastically well.” Leonora could prepare for discharge. On Ascension Day, 24 May, we took her on an outing. She was radiant, while I promptly sank into a moderate “postpartum” depression, dampening her spirits. That evening she gave me a short lecture: she intended to take charge of her own life again; our second symbiosis was over. I accepted this. She spent her last hospital night on 24–25 May and was discharged on Friday. Given the excellent engraftment, daily haematology checks were not planned. She could live normally, though avoiding crowds and animals—especially cats—for three months. A planned Tibet journey was impossible; her guinea pigs in Innsbruck and horse in Sintra would have to wait.

Leonora now enjoyed life: planning a car purchase, attending the theatre, sitting in cafés, seeing friends, studying and dancing at discos. She wanted to recover all the time she had lost. Summer had begun. She wanted to swim and wear a dress without three tubes emerging from her body. Despite cautious medical warnings, she insisted on having “Hicky” removed. On Friday, 1 June, she was admitted under Professor Hager in paediatric surgery. Although such removal was generally done under general anaesthetic, she chose local anaesthetic because she wanted to dance that evening. Calm and curious, she chatted with the nurse. I waited outside the theatre as I had on 23 February. After just over an hour she emerged safely, her coiled catheter in a glass container. Professor Hager explained that thrombosed vessels had forced Margreiter to position its tip near the heart, at the entrance to the atrium, reducing displacement but increasing the danger of injury. He could scarcely believe she had so often gone dancing with it.

That evening Leonora changed out of her hospital nightdress and prepared for Friday night. She spent the Whitsun weekend alone in her flat, studying, cleaning and cooking. Her new life had truly begun. She started rehabilitation in Igls, decided to forgo the car to finance a research semester in Israel, studied for biology and looked forward to her Australian friend’s visit. Replies began arriving from relatives, friends and helpers invited for 22 June. The future was taking shape. For the time being, the nightmare was over.

On 27 July 2001, a relapse was diagnosed. Leonora travelled alone to Portugal to see her siblings, who had never visited during her illness, once more before her death. Following an unsuccessful bone marrow transplant, she died on 27 September 2001 at 6:27 p.m., with her mother beside her.