Chronicle of Leonora's illness September 2000 - June 2001

Approximately one month after Leonora's 19th birthday she felt the first symptoms: pain in the legs when standing and walking. Leonora had just graduated at Easter 2000, as a nursing practitioner on a surgical ward at the Hall hospital. In early May, after the restart of the summer term, a specialist in physical medicine noted a slight disorder of the sciatic nerve and prescribed exercises and a vitamin B complex. The pain got better, temporarily, z. B. during Ireland-stay, it disappears completely. And, although Leonora completed a demanding course with flying colours, she had no other major complaints. During the summer holidays in July in Portugal and Madeira Leonora intermittently suffered from headaches, but will start running after her return in early August with nightly watch of terminally ill patients in the Natters hospital. The headaches became more frequent, Leonora becomes increasingly paler and thinner, the leg pain comes back. She also takes tonics and painkillers, but otherwise leads a normal life. During a stay in Vienna in late August, the headaches get unbearable so she went to the migraine clinic at Vienna General Hospital, neuritis of the cranial nerves is diagnosed and Voltaren prescribed. Upon her return in early September Leonora can only move freely with difficulty, head and leg pains come and go. She reported disturbing dreams.
 
On 8 September 2000, a preliminary finding raises concerns from the Internal medicine by CT, ultrasound and differential blood count: Slightly elevated erythrocyte sedimentation rate, several previous viral infections (cytomegalovirus, herpes, Barr Eppstein virus) plus psychogenic pain disorder... They will prescribe an antibiotic, tonic and muscle relaxant anxiolytic and because they, as well as the practitioner, are soon to go on holiday, she recommends that if the pain persists after taking antibiotics an appointment at the Neurological Outpatient Clinic of Innsbruck, for the implementation of a possible spinal puncture.
On 11 and 12 September Leonora complaints increase, on September 13 we (Leonora, Marco Conci and Leonora’s mother) drive to hospital of Trento on the initiative of Mr. Prim. Dr. Pedrazzoli prepares for a spinal puncture with subsequent stationary investigation, but as Leonora suddenly feels better the intervention is not carried out. The clinical picture is too diffuse and unobtrusive for internists and neurologist. The next day in Innsbruck Leonora pain is back and she is thought of, by her mother, as a malingerer. She thinks of herself as neurotic, she bakes a cake to make up for the unnecessary Drama - as it seems.
On Saturday, 16 September Leonora with intense leg pain goes to the Neurological Outpatient Clinic of Innsbruck and is not seen, the next available date was the 2nd October. During the following night, she calls the emergency doctor, who over the phone recommends taking magnesium. A well-known German psychoanalyst, the Leonora "case" will be carried forward in group supervision, which is done on 17. 9 by remote diagnosis on adolescent crisis due to a new partnership of the mother. He recommends ignoring the matter as far as possible, a psychogenic pain disorder is the most likely diagnosis - I feared in particular meningitis, of which her Portuguese aunt had died. On 18 9. Leonora’s long awaited former host family comes from Australia. Leonora travels by car, dressing at a girlfriend's house, buys some things, takes them up the steps and cooks a meal for six people under severe leg pain. Thanks to the space shortage Leonora and her mother are for the first time in months in the same room: After a horrible, sleepless night I realize that Leonora is seriously ill and decide to act. Although the Australian host family - the father is a doctor himself - query the suspected psychogenic pain disorder- and talking on 19. 9. after a telephone consultation with Dr. Kantner-Rumpel Maier of the Pain Outpatient Clinic Innsbruck was a relief: hospitalisation at the Neurological Department is inevitable before a presumptive diagnosis on Somatisation disorder could be provided. OA Dr. Oberbauer, leading psychiatrist special station, offered to help: all the necessary neurological examinations could be carried out at this station, especially the now urgent spinal puncture. On the same day, the 19th Sept 2000, Leonora is taken to the psychiatric special station, accompanied by the Australian host Dr. Barnett and her mother. She had to complete a series of elaborate investigations until 20 9. afternoon when a provisional Bagatell diagnostic - protracted summer angina, caused by hemolytic streptococci - is decided. Leonora, delighted despite a worse headache and body aches, prepares for an early release.
Then a quarter of an hour later I wanted to leave the hospital, Dr. Oberbauer is calling me back. Some minutes later Leonora learns that she probably has leukemia, blood cancer.
The next morning, she will be transferred to the Haematological outpatient clinic, the bone marrow results in a punctio sicca that she is suffering from acute myeloid leukemia, and de facto no healthy bone marrow is any longer present. On Friday, September 22 she is taken to the isolation ward of hematology I at the hospital in Innsbruck. OA Dr. Gunsilius assumes the accurate diagnosis, originally ALL - acute lymphoblastic leukemia – but now there is suspicion of AML - M1, acute myeloid leukemia with mild cell differentiation, which has a significantly poorer prognosis. Leonora, although shocked and plagued by severe pain after spinal puncture was made in error to have an erect the chest X-ray, which resulted in further terrible headache - is interested in the scientific side of her probelm, she had recently during the summer semester 2000 learnt about translocations and genetic aberrations.
In Room 7 of Isolation at the Hematology now a lot of activity is unfolding, in addition to the chemotherapy preparatory measures. Many friends come and show their support, the Executive Director and also the medical director would regularly come and the attending professor Gastl would sneak over so show their interest in the new patient. The room fills with pictures of a Himalayan expedition, with other images and supporting objects or amulets. Many family members and friends from home and abroad call in by phone and in writing on their own, or with her mother, right from the first days the friends were like a good family.
Returned from America, internist Dr. Defregger is immediately fully committed, Italian physicians, Dr. Villotti and Dr. Lona from Trento assist, as does Prof. Schmalzl from Hall hospital. Her mother, with the last 10 days of activity as psychooncological therapist at the hospital completed, learns about the risks and expected prognosis of a chemotherapeutic treatment. In the light of the severity of the disease a palliative treatment is put in place of the highly aggressive chemotherapy, a possible death sentence within a short time. Other consulted doctors and the hastely studying literature confirm the verdict. Dr. Barnett, who had just returned from the Washington Gynecologists Congress in September 2000, discussed the possibility of surgically removing ovarian tissue prior to chemotherapy treatment to allow possible future fertility, Dr. Waitz-Penz and Prof. Mocayo consult with hematologists prior to the chemotherapy about supportive hormonal measures, surgery is ruled out at this stage. On 22. 9. 2000 the senior doctor explained succinctly to Leonora and her mother: "The ovaries are full of cancer cells, and, let us be honest, what about a child of a mother who died after two years? "

On 25 9. We create a list of friends and family members who wish to attend on certain days and support Leonora, for the duration of her illness, from a prototype book "Share the Care", which came from the cancer of a former friend from New York. Leonora continues to receive antibiotics and painkillers, she wants to let her hair be cut so that it can be made into a wig, a relative pays the costs. She is completely in focus and cries, if at all, but hardly ever in the presence of their visitors in order to conserve their feelings. A psycho-oncological and psychosocial complementary measure is organized (Ms. Oberhauser and Mrs. Schiessling). Monday, 25 September for the first time a Tibetan monk from a monastery Vorarlberg appears, then comes the hairdresser, and Leonora's long blonde hair cut.

On 26 9. A central venous catheter is placed under local anesthesia, many studies will follow, apart from the underlying disease which show no particular pathological values. The chemotherapy is to be performed by the so-called Standard procedures. Two induction therapies with Alexan, etoposide and daunorubicin, a consolidation therapy with Alexan and maintenance treatment with high-dose cyclophosphamide and busulfan. The chemotherapy will destroy the cancer cells in the blood, the white blood cells will decline during the therapies respectively to zero and Leonora will thus have no natural immune system any more. Viruses, bacteria and fungi can overwhelm her organism, she could die from accompanying infections. Since she has no siblings, a worldwide search for a bone marrow donor is carried out also.
On 27 9. chemotherapy begins. Leonora is in room 7, later in other rooms, 24 hours a day attached to an IV drip with up to five different substances which lead to her heart, her first chemo lasts for 10 days. She will also receive Ciproxin, Amphomoronal, amphotericin B, and Paspertin, Navoban and Largactil. She must measure the liquid loss, operate prophylactic oral hygiene, inhale, use creams, make breathing exercises. She is fed around the clock, infused, maintained, monitored. She is incredibly brave and does not complain. She is routinely prescribed Temesta which settles her immediately, she goes through the entire nearly nine-month treatment without any psychopharmacological complementary therapy, also no sleeping aids. In the night from 28. 9. to 29. 9., approximately one week after diagnosis, she wakes up with terrible back pain and is lying for emergency X-ray and CT at 5am: she has had a herniated disc in her sleep, there is suspected paralysis of the bladder and possibly a leukemia caused by the infiltration of the spinal cord. Everything points to an emergency operation - after 2 days of chemotherapy and in a state of high acute illness!
On 29 9. Afternoon Prof. Jaschke, CEO of Radiology I, diagnosed the newly additional collected MR film: By 4 o’clock the redeeming message is: Operation not necessary, nor are there any abscesses or leukaemic cells visible. "Only" a complete prolapse, which can be stabilized with physical and pharmacological measures! As a result, this time renewed proctologist complication with constant pain, almost insatiable bleeding and indigestion, sink of her leukocytes, it starts a fever caused by a staph infection. Moreover, Leonora is suffering from a virus flood. She will receive a broad antibiotic therapy with Fortum, vancomycin and Certomycin, also Zovirax infusions. The so-called "aplasia" - to avoid the phase of complete isolation with strict dietary regimen to another fungal infection that lasts until October 20: Every incoming visitor, whether personal or individual needs facemask, to disinfect their hands to keep away infections.
Slowly Leonora’s appearance changed, her skin becomes dry, her expression loses its normal softness, acts scared and looks drawn. Since it is infused 24 hours a day and also at night has to get up every two hours in order to measure the liquid export, she is often very tired and sleeps a lot. She can not read nor watch TV.
On October 2, Leonora's father arrived from Lisbon and will remain until the end of November in Innsbruck and spends many hours a day with her. The number of other visitors had to be limited, Leonora wants to see her inner circle only. After the first week of October a Sino-Tibetan doctor in Germany, a TCM device in a Saarland RHA clinic, a Tibetan doctor in India and Tibetan monks in Switzerland became involved, they will be a supportive complementary therapy. The internal medicine and psycho-oncology clinic practice visualization techniques are used on Leonora to strengthen her weak immune system. Leonora’s former Buddhist religious group and her Matura teacher, Prof. Schromm, pray and meditate for her, even monks of Letzehof, as well as a meditation group, a Munich psychoanalyst and many friends from near and far. Then there is a pathological change to the liver as a side effect of chemotherapy, it is regularly monitored radiologically. An enlargement and liver injury is determined.
On October 24, she was released from Hospital for the first time after five weeks. Leonora is very weak and moves with difficulty, her leg muscles are slightly atrophied. But she can eat normally again, which means much. She meets her friends, goes to her aunt, visited with her father's family and her friend, enjoys the countryside, can be driven around by her mother a lot and enjoy, as much as possible, nature and freedom.
On November 2, she should return to the clinic. Your first bone marrow after chemotherapy results in a reduction of 100% blasts at 8%, with a partial remission. The values below the 5% threshold deemed tolerable.
On November 6, a liver biopsy is performed, which Leonora must suffer with severe pain and a small inner hematoma, even days later, she can hardly move, from then on until well into the month of January in she can not completely straighten, partially she moved, hanging on to her IV pole, bent over to a right angle. The second chemotherapy, whose success depends now on overall survival prognosis turns out to be torture: on the one hand, the liver damage is racing on, also spleen and kidney are damaged, on the other hand now for the first time there is a personality change in Leonora, she seems shaken by a severe endopsychic passage syndrome. In the presence of her mother, she experienced several times pseudo-epileptoid seizures, but the consequences pass and she stabilizes again. Leonora's skin is then drawn by a reddish rash, then comes an acute jaundice and Leonora is completely yellow, partly because of the cortisone effect, all over the body and especially on the face. The bleeding starts again, her skin dries out, the strict dietary restrictions and the disgust of chemotherapy lead to a permanent loss of appetite, Leonora is constantly vomiting dark liquids. The antifungal treatment - presumably in the liver and spleen damage exists an invasive fungal infection - is accompanied by chills, Leonora falls during the morning toilet several times and in the shower fainted, from hands to her head and body becomes increasingly weaker. The fever rises and falls, the inflammatory markers are staggering. In addition to suffering terribly, every minute she is becoming aware of the life-threatening condition she is in. Neither denying nor trivializing the danger, she still complains and whines. She can die of leukemia, of the chemotherapy, the side effects of anti-fungal therapy, of liver or to multiple organ failure. She simply continues, remains friendly and polite. A urinary tract infection, nausea, abdominal pain and headache torment her. But then three weeks all is put into the shade by catastrophic damage to the internal mucous membranes, in particular the oral and esophageal mucosa: her mucositis means she can not eat or drink for 20 days, although she would be hungry and thirsty.
The entire nursing staff, led by Sister Helene, striving hard for her, try the impossible to get her to suck at least some pineapple ice cubes. Leonora takes for three weeks Vendal, a strong opiate, for the persistent pain however at the same time it must not be too high a dose. Although the risk of dependence does not matter, but an excessive sedation with a Morphine preparation plus the constantly inactive lifestyle would increase the risk of breathing supression and thus pneumonia. So Leonora is repeatedly interrupted by attacks of pain, she suffers temporary amnesia and also concentration problems. Her legs are swollen; she can barely stand. The physiotherapist comes daily, massaging them and breathing exercises with her. Compliance with the oral and skin hygiene is just as vital as breathing exercises and stimulating the body's periphery to counteract the loss of body awareness.
The daily visit from Prof. Petzer, OA Dr. Gunsilius, the assistant doctors Dr. Sudmeier and Dr. Spizzo, especially the visit of Prof. Gastl on Wednesday proves to be a scientific and human challenge to the treating physicians that deal with colleagues’ advise from home and abroad. A temporary diagnosed pneumonia proves incorrect, but Leonora coughs a lot and feels stitches in the chest. Ascites (fluid retention in the abdominal cavity) increases her body weight which fluctuates constantly due to the additional water in the tissue, everything is tried and done that can alleviate Leonora suffering, yet the prospect of improvement seems small, the side effects of chemotherapy must be taken into account, otherwise it has no chance ...
Finally, after almost two months, she can be discharged for the Christmas holidays, the commncement for the third chemotherapy is scheduled for 2 January. Meanwhile her parents, her half-siblings, her aunt and her two little cousins were tested for the possibility of a bone marrow donation: Without success, we continue to hope for a donor from abroad. Leonora spent Christmas alone with her mother at Achensee, which was her wish. Although she can eat and drink again, but after a second liver biopsy, and many other painful tests, she has difficulty standing up and walks slowly, tortured with pain. Also the many drugs that have to be taken harm her general condition. Relief is brought by her friends, her family and especially her own strong will, sometimes supported by an old typical nonchalance and stubbornness. On the first day of her release, December 22, we visited the cafeteria at Ambras Castle, where we had celebrated her 19th birthday nine months before, then in the evening we watch the José Carreras Gala on TV and hear for the first time together about his Foundation-funded research and transplant facilities. Leonora has to get up every night several times, vomits, writhes in pain, can barely lift her feet off the ground when walking. In between it would be about visiting her friends from her studies, from the term time, about her relatives and her personal or electronic contact with other people from business and the home of friends in Austria, Portugal, Italy, Germany, Australia, the USA, to India for the Tibetan exile community in Kerala. Also the contact with nature is doing her good, but she regretted that there were no animals near.
On December 27, a sound-bowl massage causes another crisis, Leonora vomiting a lot of bile, Prof. Schmalzl takes it to the internistic special unit of the hospital Hall and confers with colleagues from the clinic. There is additionally a suspicion of cholecystitis, there is a subhepatish effusion. Her condition stabilizes again but we do not know the result of the last bone marrow spunction, finally it comes: The second and so horrible chemotherapy has caused a complete remission of the leukemia, the leukemia is - for the time being - defeated. On New Year's Eve she is released, celebrating with others at her friend Christine’s place, who has touchingly looked after her since the beginning of the disease, the same with her cousin Lisa and her friend Lilli, always sharing the bed with her to give her a feeling of belonging.
On January 2, 2001, Leonora again comes to the Hematology - the now attending physician is Dr. Spizzo from Luxembourg - she gets a new piece of bad news: the liver disease is so far advanced that a third chemotherapy - this would be a further hepatotoxic consolidation therapy - can not be risked. A bone marrow donor is not in sight, the leukemia can come back at any time, in the next few weeks or months. If a relapse occurs in the interval between the 2nd and 3rd chemotherapy, Leonora healing chances are extremely low.
Leonora's life and all those who are struggling for her are in a race against time.
Leonora is now at home and is taken daily to the Hematologic clinic for antifungal infusion therapy, she also obtained potassium and an antibiotic. Daily blood count is raised; the arm veins are already completely bitten because the subclavian had been removed. Ultrasound and CT result shows always the same image, huge sprawling herd on the liver and spleen, which apparently defy any treatment even long after the end of the 2nd chemotherapy.
Several more outpatient liver biopsies are performed - the examining physician, under local anesthesia, takes tissue directly through the abdominal wall from the liver, which made Leonora very afraid – produces no result: Although the initial unspecified markings in the CT images are clear, their texture in biopsy is not recognizable, whereby the dangerous strong antifungal therapy may only produce side effects, but don’t. Again and again, Leonora is notified of a new admission date, prepares it herself for the next Tour de Force, and again she will be sent home because her liver is too damaged so the new chemotherapy is postponed. What follows are the medical reports that are created regularly after one to two days stay at the Hematology: diagnosis: c AML-M1, CD 19 / CD 22 (+), unauff. Karyotype, ED 10/00, Z.n. Ind I (DCE), - PR; Ind II (DCE) - CR. Current: CR, liver / spleen unspecified marking with suspected aspergillosis HWI 2.) status post renal retention 3) Z. n tox... liver dystrophy
Now as we approach the end of the winter semester - January to mid-February, we undertake an organizational Acrobats Act to bring everything together: Leonora accompanied by her mother goes to her daily clinic appointment at Hall and the University of South Tyrol. She drives a lot by taxi, is driven around by her classmates and kept her studying up to date. The Tarot group is reactivated. Leonora is often taken to her girlfriends, sometimes spends the night with them. We spend a short weekend on Lake Garda and Trento, to soak up the sun and heat. As Leonora has been located at the hospital since October, she has a separate e-mail address, she writes to her e-mailing partners throughout the world, especially her Australian friends and her host families. She writes and telephones a lot with her siblings in Portugal and with her Tibetan Godbrother in India. Her father calls twice daily from Lisbon, many acquaintances and friends from home and abroad login repeatedly via email and phone. A large support network has formed. Your hair begins to grow again; Leonora goes out increasingly without wig.
Despite the daily Canossa programmes at the clinic her spirits awaken again, she wants to go out, dance and be a young woman. On 20 January she visited, for the first time, with Clemens, a medical friend, a premiere at the Tyrolean State Theatre, on February 9, she appeared in evening dress and purple colored short hair for the Maturaball at her former school, and on February 11 she sees Schnitzler's "Reigen" in a hefty staging at the Haller Lobkowitzgebäude. The liver findings are still devastating, the beginning of the 3rd chemotherapy session is not in sight, Leonora should have an operational diagnostic procedure on the liver but we decide on obtaining a second opinion: On 21 February, shortly after the completion the last infusion we drive with the laboratory results, medical reports and many CT images - the last CT image, which also shows extensive liver and spleen unspecified marking, from 19. 2. - since disease onset, to the José Carreras Centre at Klinikum Grosshadern in Munich. There Leonora has the opportunity to inspect the various research institutions, PD Doz. Dr. Dr. Haferlach (he is a medical doctor and an internationally renowned German Leukemia Researcher) confirmed the Innsbruck suspected diagnosis due to his presented materials and also the previously conducted procedures. He described Leonora risk as "intermediate", if, as he also believes, the liver spots were actually caused by a fungus. The research lab really fires Leonora’s interest in a big way, she wants to be a hematological basic researcher in the future. She discussed "on an equal footing" with the man there, who talked shop with her and showed us the impressive facilities of the center, particularly about his knowledge of the field of embryonic.
He provided us with Stem cell research. Dead tired, but with clearly superior animal spirits we return on the same day as Leonora is to be the next morning, 22. 2. 2001, at the transplant department at Innsbruck for surgery. An open liver biopsy sould be performed, this was the result of internal medicine-hepatology conference between the professors Gastl, Vogel and externally close German colleagues. Following preliminary investigations, Prof. Petzer has stimulated the surgical implantation of a Hickman catheter so that Leonora is not additionally worn down by the constant needle stinging.
On February 23 in the morning, barely 36 hours after our Munich break Leonora is operated on by Prof. Margreiter. She was calm and collected, chatting with the nurses and orderlies. It took three hours to complete the operation: Margreiter comes snorting from the OP, walks up to mother waiting outside and scolds: "Because everything was so thrombosed, thrombosed all the Hickman, I hardly some introduced ..." and then explained to me how complicated and almost hopeless the intended implantation of the catheter was in the subclavian vein, as he had "bumped off" to place the line. After a while, waiting tensely I inquire about the liver and he says merely succinctly, "the liver has nothing". A doctor from the Institute of Hygiene has picked up the biopsy during the procedure and transported it to the laboratory for further investigation, but he, Margreiter, was sure to macroscopically would make a relieving diagnosis. Leonora remains almost the whole day in the recovery room, a short visit is allowed. Her battered body now carries a 10 cm large wound on the right side, and an inlet and exit for the Hickman catheter from the shoulder to the "fat" on the left upper abdomen, with three tubes be ready for receiving the next infusions. She has the anesthetic that was three times as long as originally due to the venous thrombosis, survived and has not too much pain. The next day, Saturday 24 2 it turns out during a conversation with Prof. Margreiter that no histological examination of the removed Liver biopsy was provided, everything had gone to the Institute of Hygiene, it is of an intended investigation, if it is the liver unspecified markings could not be a leukemic Metastatic, nothing known has been found. The entire biopsy was at the Institute of Hygiene; he did not know if at all the tissue sample would be useful for studying at the Institute of Pathology. The doctors from our circle of friends were contacted beforehand in order to speed up the investigation on the pathology - it was finally the weekend - were informed, the tremors began again.
On 24. 2 the International AML Conference at the Grosshadern Clinic began and on 25. 2 evening I returned to Munich. For three days, during the Munich carnival, I tried to understand the most recent research approaches in the field of acute myeloid leukemia while Leonora continued at the Innsbruck surgery, remaining stationary and had to tremble with nerves awaiting the outcome of her surgery. From the presentations and discussions, I gathered as much hope for curing the AML. The psycho-oncology of the bone marrow transplant center, an Austrian internist and psychologist, advised that the catastrophic medical history of Leonora should be just a mere palliative therapy with blood transfusions, she has perhaps a good year to live. She herself would never undergo such an ordeal (chemotherapy plus transplantation), most patients would die anyway, my longtime supervisor, Edmund Frühmann, 1. 10. 2014, worked for many years at a Salzburg hematology department, said the same himself. Meanwhile a biopsy from Leonora’s liver was in the pathology depertment of the Innsbruck clinic - the findings were taking a long time presumably on the personal initiative of Dr. Spizzo.
On March 1, Leonora is released, she calls the catheter "Hicky", supplies for her fresh wounds and keeps its three tubes under her sweater. There are still no histological findings, no mushrooms have grown, it also appears that after the operation nothing has changed.
On March 5, Leonora has her bone marrow tested again, the race against time is - still – being won, the leukemia has not returned despite the now more than two months of the therapeutic forced interval. Then on Tuesday, March 6 comes the miracle: The liver marks "of unknown origin", which were still huge on February 19, and were not seen intraoperatively on 23 February by Professor Margreiter, were on ultrasound and CT very significantly reduced. All suspicions privately expressed -. It could not, for example, be taken from the right places of the liver unspecified marking etc. - turned out to be wrong. Prof. Margreiter was right when he carried out diagnosis with the naked eye.
The miracle, which we had all hoped for, occurred:  on Monday, despite months of Ambisome therapy, the liver and spleen unspecified markings were still "extensive and progressive". Dr Haferlach from the Grosshadern Clinic had on Wednesday the CT images, still the same diagnosis of fungal infection of the liver and so were the same unspecified marking that had existed since November 2000 had largely disappeared on Friday of the same week for no apparent reason: spontaneous remission.
While we desperately sat at the AML congress in Munich with researchers from Germany, Holland, Italy, the US and Israel trying to get information for a rescue-therapy, Leonora's liver and spleen recovered by itself, the third chemotherapy was now available for her.
On March 7, we were ordered to a great conference meeting of all participating physicians: Prof. Petzer, Prof. Nachbauer, OA Dr. Gunsilius told us that no bone marrow donor has been found, but due to Leonora’s consolidated internal situation the way is free for two more chemotherapy followed by autologous stem cell transplantation. Spontaneously we invited for Sunday, March 11 Leonora’s 20th birthday, friends and family to a birthday celebration at Achensee, to give her strength and support for the coming therapies. There were 35 people present.
On March 13, she was taken back to hematology, on 14. 03 she began a Alexan-high-dose chemotherapy, which lasted 6 days until 19. 3.
On 16/17. 03 a meeting was held at the Hospital, a conference on cancer aftercare, the planned rehabilitation center TILAK in Natters is presented, domestic and foreign experts, including Prof. Gastl and Prof. Söllner discuss various rehabilitation models, also the administrative Director Laimböck, owes much to Leonora, is present. Leonora takes part on the first day, although 3 days into chemotherapy, from 18 3. she is isolated, the aplasia lasts from 19.3 until 6. 4. 2001. This time, the side effects of the chemo are significantly lower than in the first two series: Leonora indeed gets bad sinusitis, an infection of the upper respiratory tract with bronchitis and a drug eruption, resulting in a change of antibiotic therapy (Fortum, Vanco, Vibromycin), but her pain is not as bad as the first time, eating and drinking is much better. She can eat regularly the food, cooked by the book, brought from outside, does the supporting prophylactic accompanying measures such as oral and respiratory hygiene and can be massaged. Her feet and hands turn red and painful to the touch, but after ten days the skin returns to normal. Above all, the liver and spleen appear to tolerate the new poison. Why? no one knows. She is given Ambisome also, an expensive antifungal drug. Treatment costs would have gone through the roof if we did not have a good social security system in Austria and if we were not insured. This time she gave her mother, who had hitherto defied all infection risks since the onset in September, a contagious cold and must stop her visits during the aplasia days. Leonora is suffering from stomach discomfort and abdominal pain, 29. 3 starts a fever.
On Sunday, April 1, Leonora has returned to frequently vomiting, like a torrent, the fever rises, I decide to visit, despite the risk of infection. One day later, the fever has dropped, the leukocytes rise again, mobilized by Neuprogen injections twice a day, "leuco Party" is called for there on the Hematological station.
Leonora is well again. She leaves the station on April 7 for the first time.

On Monday, April 9 a sensational blood count is found at the blood bank of the hospital: promoted by the previous injections Leonora leukocytes have increased to over 25,000, and probably enough stem cells can be collected. After the Munich AML Congress and the rapid study of the accompanying literature we were familiar with the term "harvest" with respect to the stem cell derivation and actually was for us, especially of course Leonora after all the suffering, a "harvest" feeling. The German term "stem cell derivation" or "gathering" of stem cells did not match the feeling of "harvesting" - harvest. On 9 and 10 April Leonora spends almost five hours each on a machine at the blood bank, where all her blood is withdrawn via the Hickman catheter above her heart, by a centrifugal machine, which filters out the stem cells and then via a second line is replaced. She survives the procedure without any particular problems, converses with the friendly staff who are especially fond of her. In the medical report, this procedure is succinctly formulated with the words:
SZ-apheresis on 9 and 10. 4: sufficiently CD 34 and Z. collected, the stem cells are frozen immediately, they should remain frozen until the end of the 4th chemotherapy.
On April 11, one day after she is released, we drive to the wholeness Medical Center in Igls to arrange a rehabilitation stay after the end of chemotherapy. When we go home, Leonora tells me that she would like to go on April 14, the day of my birthday, to Tuscany and alone by train to Florence - Holy Saturday - to meet a friend and with him and his family would spend Montecatini – the Easter holiday in Florence - Siena - Pisa – Lucca area. For me she has given as a gift a spa break in Burgenland. And so it happened. We spent Easter spread around as follows: Leonora in Pisa, the place where her father and I had chosen her name, Manuel in Lisbon and I in Bad Tatzmannsdorf given by Leonora. After returning from Tuscany Leonora begins again to try out "normal" life: She will sometimes be alone in her apartment, goes shopping, cooking, visiting friends and colleagues in the area, taking care of bills, repairs, and banking. Daily life and its specific requirements are all a precious treasure for us. Everyday life is a fixed frame for Leonora. She goes out to the restaurant, the cafe, to the shops, strolling through the area, is always on the go, she is full of optimism and the joy of life, can eat anything she fancies, demands her favorite food, wallows in an atmosphere of comfort. She drives herself by car, making visits, shopping and doing errands. At the same time her interests in the outside world awakens again, she reads political articles, thinks again about the scientific logic of her therapy. Dr. Spizzo remains her spiritual interlocutor outside the clinic. She has the idea to organize a small party at the end of the entire treatment at Ambras Castle.
On April 25, Leonora's father will come back. On 23 April Leonora is to resume the 4th chemotherapy but there is no bed free. Again initial investigations, again an hour long wait at the station, sober, lying in bed or sitting in a wheelchair. Thereafter, wheeled through the underground passages of the hospital, waiting in the doctor’s rooms in various hospital departments. Leonora knows nearly all departments and diagnostic facilities of the Innsbruck University Hospital. "I'm at home here," she says. When she is brought by car to outpatient examinations or treatments, we are often simply waved through by the gatekeeper who know us. The planned treatment to support the chemotherapy is initiated at the holistic Center Igls, Leonora designs and sends out the invitations to the party. Now comes the last stay: After the 4th chemotherapy Leonora is injected with autologous stem cells - "transplanted" - if they grow, Leonora has a great chance of a cure, if not, Leonora would be up to half a year in isolation rooms in Aplasia, her bone marrow would perhaps never be able to replicate on its own. As Leonora must spend the night from 23 to 24 April at the Achensee, she is suddenly afraid of the hospital stay, fear of failure. On 24 she goes bravely to the clinic, 25 4. her father comes.

On 26.4 we’re informed of the possibility of allogeneic bone marrow transplantation, a re-examination revealed that a young woman as a donor has emerged. A fourth chemotherapy is therefore superfluous, Leonora should now adjust to an early release with a subsequent preparation for full body irradiation and subsequent bone marrow transplantation. I call Gabi Schiessling to get help. Leonora is in despair, she at first does not accept the proposed changes to the treatment, after many meetings and phone calls she agrees. She's told from all sides that she would have a much greater chance of cure through a bone marrow transplant, the immune system of the donor will defeat the leukemia forever. The usual term for this is "chimera", after the Etruscan landmarks of Florence: a mythical creature that is composed of several beings. From her direct questions, she learns for the first time that she has probable become barren, the whole body irradiation would change that much too. The 4th chemotherapy would anyway cause infertility. Again the hormone expert Prof. Mocayo is contacted, the possibility of subsequent implantation of a fertilized egg emerges, in the US or the UK this could be done. We will also discuss the possibility of adoption. Leonora is now fully focused on the issue of motherhood, talks a lot with her fellow patient who is also intended for transplantation. The invitation for the party is null and void, all summer and curricula need to be changed, we have to study information brochures about the aftercare in transplantation.

On 27 4, the day after, there is a new problem: the donor is CMV negative (cytomegalovirus, the pathogen of Pfeiffer's disease), Leonora in contrast is CMV positive, she fell ill with mononucleosis in her 2nd year. There is the risk of flooding with the activated CMV virus, which would be caused by the  immunosuppressive drugs needed in bone marrow transplantation. Leonora's blood is tested again. On 28 4 the perspective is: The donor is not an option, because in order to avoid the expected rejection of the body, strong immunosuppressant regimens would be needed, there would be a danger to life after transplantation and the likelihood of lifelong graft-versus-host-reaction with an AIDS patient’s quality of life.

On April 30, she tells with her mother by telephone that she has just come back from the Medical Office of the Dean, where she has registered for the Biology final exam on 18 June. There will be the first planned procedure performed on May 2, she will be at the hematology, the maintenance chemotherapy with cyclophosphamide and busulfan is to begin, the preparatory studies are carried out, the last cycle. Her father is leaving again. Leonora right now tolerates the chemotherapy, she can eat and behave freely in her room, read and watch TV, make phone calls and talk as usual. She is in high spirits, jokes with visitors, her good humor lasts 2 to 3 days, almost manic, then shows a slight personality change again. While Leonora is still full of energy, but sometimes loud and demanding with the nursing staff, and with her mother especially. This behavior is due to an anti-epileptic drug, which is given for the prevention of possible epileptic seizures under chemotherapy. Leonora was not prepared for this side effect and was not warned, she has now floods of waves of alienation feelings. She began to complain about fever and severe mouth pain, on Saturday, May 5, she showed a whole picture of the misery of the second chemotherapy, suddenly within a few minutes her scalp turned dark red. The psychoactive drugs caused a mobilization of body memory, the torments of the awful time in May were a further factor to evoke the memory of the torture of Winter 2000/2001. On Saturday, May 5, there’s a weekend doctor, who did not know Leonora, and gives her the pain pump with Vendal - the opiate of the 2nd chemotherapy - as an infusion, it depends again at potassium perfusor, the pipes leading to her heart, the poison damages the kidney, her feet swell. The doctor can not be convinced to stop the anti-epileptic instead changed to morphine, which he prescribed too quickly, Leonora personality changes even more, she loses contact with it, everything seems to repeat itself, as alyways the morning collected blood findings confirm this fear.
 
 The final crisis will take 48 hours with two bad nights, the first fever and pain when swallowing, but when on Monday, May 7, the regular station operation is resumed, the antiepileptic drug is discontinued, Vendal pump and Perfusor® stopped, Leonora recovered within hours. On 8 May at 14hr the autologous stem cell transplant is then performed: Leonora is connected to the monitor for monitoring the heart rate, oxygen is available, students and nurses are present when Prof. Petzer re-injected the two syringes with Leonora’s thawed stem cells directly into the Hickam-venous catheter. The two syringes look like enemas, the lifesaving liquid contained therein is rosy. Leonora felt a tingling sensation like a contrast examination, after a short time it is over, her body has tolerated it well, an actual rejection reaction was of course to be expected. The ASCT - autologous stem cell transplantation - was carried out, now we have to see if the cells find their way and form new bone marrow. In the evening, I write via e-mail a letter to a former leukemia patient, Sebastian, aged 19, who had been treated in Germany and later at an American Cancer Clinic in Minnesota and its seemingly an encouraging fate I had told Leonora. The next day Sebastian’s father responds and tells me that his son had died several months ago, but gives an account of his wife over the course of Sebastian's disease and lists the names of several research institutions in the United States, Israel and Italy, which had been represented at the AML -Congress in Munich. When I contact the clinic in Roseville on May 9, I see the picture of the Dalai Lama on the Internet and notice that he will give a talk at this particular time. Leonora gets absorbed on her laptop in the clinic and makes contact with these and other research bodies, in particular with the Weizmann Institute in Israel, and prepares a subsequent semester in the Israeli desert after completion of the preclinical. Financial questions were raised. Now, however, leukocytes fall to zero, all her hair has fallen out again, there is again high risk of infection. Leonora is again in Room 7, the single room, where she had started her ordeal. She begins with studying biology, but suffers from poor concentration, she gets discouraged. Visitors now come not as often as before, there has been many changes to the timetable so that not all the people could be informed in time. Proud Leonora has a strong desire for contact, she wont admit her neediness to her girlfriends. She looks away but learns anyway. As at the beginning, the circle of visitors was again limited to a few faithful ones. It is not support now, especially because of the behavior of the injected stem cells on which Leonora’s future depends.... She has a good friend in Dr. Spizzo, with whom she talks for a long time over all possible perspectives of life and learning, he has been a tower of strength over the weeks between May 8 and 25. May. In between Leonora is feverish to almost 40 degrees: Activation of the CMV virus had now triggered during the first and second chemotherapy so to the dreaded pneumonia at the end. Leonora is suffering from pneumonia, she has somewhat neglected her prophylactic breathing gymnastics, the antiepileptic drug and premature morphine administration from the past weekend, had undermined along with the lack of contact, her mental toughness.

On Monday, May 21 the saving message: the white blood cells increase again, first to 400, then the next day they jump on 2400, on the next already on 8000. On Wednesday, 23 May, Prof. Gastl tells us that with the result: "The stem cells have grown fantastically", Leonora must prepare for her early release. At Ascension, May 24th, we make a first trip with Leonora: She's in a radiant mood, her mother falls into a  middle sized "postpartum" -Depression that dampens Leonora mood again: in the evening she makes a short announcement and informs us that she now intends to take her life in her own hands, the time of the second symbiosis was over. I accept. 24. to 25. May, she spent the last night in the hospital. On Friday, May 25, she will be released, thanks to the marvelous result in stem cell transplantation a daily check on the Haematology clinic's is not planned. Leonora can lead a normal life, she should avoid large gatherings of people for three months nor be in contact with animals, especially with cats. She has to do without a planned trip to Tibet, and her guinea pigs in Innsbruck and her horse in Sintra have to wait. From now on Leonora can do well, she plans to buy a car, enjoying life. She goes back to the theater, sitting in the cafe, meets acquaintances, learning with friends and dancing at the disco. She leads an intense life after the long hospitalization, trying to make up for lost time. Summer has begun, she wants to go batheing and swimming, can now be seen in the dress without the 3 tubes: she wants to remove the implanted Hickman catheter again despite the faint warnings of doctors.  On Friday, June 1, she’s back at the Department of Paediatric Surgery Prof. Hager, and although ex-plantation of such a catheter is usually carried out under general anesthesia, she opts for a local anesthesia: she wants, that evening, to go dancing again and is not confident she can after a general anesthesia. Again she is very calm, speaks with the ward sister, asks about everything. She need not wait for long, I'm back in the lock as before the OP on 23 February. When she is released after an hour, everything went well, she has her "Hicky" curled up in a jar with her. At the subsequent visit of Prof. Hager, in her room, he explains the course of the operation and the - now past - possible risks of Hickman implantation: Prof. Margreiter had, due to the complications caused by thrombosed vessels, to introduce the tip of the catheter very close to the heart at the beginning of the course, although the risk of slippage of the catheter was less, but because of the nearness to the heart there was a greater risk of injury. When he is told that Leonora had gone dancing frequently, he can not believe it.

Towards evening Leonora slips out of her surgery nightgown clothes and begins preparations for Friday night. She spent the Whitsun weekend alone in her flat studying, cleaning and cooking. Your new life has now started. She absorbed with her planned rehabilitation at the center in Igls, wants to give up the car purchase and the benefit of a subsequent sabbatical in Israel, is learning for the biology exam and looking forward to visiting their Australian friend with whom she was with in September before the outbreak of the disease. The first feedback from relatives, friends, older and younger friends and assistants come on 22 June, the future is becoming apparent. The nightmare is over for now.

On 27 July 2001, a recurrence is detected, she travels alone to Portugal to her siblings, they had never visited before, to see them again before her death. After an unsuccessful KM transplant she dies, accompanied at her death by her mother, on 27 September 2001 at 18:27.