The Little Knights
Page 10
to have periodical check-ups throughout their life was not a simple task. «After all, we have to tell them at some point that they are cured«. These attitudes continue to this day to some extent. Considerate and understanding parents were of great help here. The Dutch Society of Parents with Children with Cancer wrote and gave out a booklet, rich with illustrations and testimonials by the sick children: «Surviving Childhood Cancer – All is Well what Ends Well«. This booklet helps the children and their parents to be aware of the need for, and the benefits of medical follow-up even after the disease itself has been conquered. We have translated it to Slovenian, some good people helped to publish it and it is now available in Slovenia too.
Marjan was treated for leukemia when he was eight years old and was followed-up at the pediatric clinic until age of 19. He was then invited to our clinic at the Institute. One month before that was his last check-up at pediatrics. There he asked, for the first time, what was the disease he had been treated for eleven years ago. Naturally, our invitation to the Institute of Oncology made him think, he knew that cancer is being treated there. He did not convey any specific problems or complaints, everything was OK at home as well as in the school. His mother was with him. We couldn´t find much wrong with him either, the psychologist, however, made this report: «Agressively suppressed emotions with mild depression. Yearning for independence, probably frustrated by posessive mother – this could be linked to his inertia and his seeking dependency.«
We did warn his mother to »lay off« a bit and let Marjan grow up. As far as we know, all was well in the end, Marjan is married, has children, they both, he and his wife, have good jobs.
Miha was a baby of 5 months when treated for a malignant tumor in his spine, he was operated upon and irradiated. The disease as well as the treatment have left him with numerous problems and disabilities. He had to undergo repeated surgical procedures during following years for correction of his legs, still has an abnormal, difficult walk. He also is small, because his spine did not grow at the normal rate, due to radiation. He graduated from the university, is extraordinarily intelligent, gregarious, keen to help other survivors of cancer and has made many friends among them.
But how did his mother take it?
Miha was 16, when he accepted our invitation. He came with his mother, who clearly showed, at this first visit, that she has not yet recovered from all the adversity of her child's illness. She told us that the doctor who was to treat him with radiation, had told her that her son would die, which she did not accept and insisted on his treating the boy. She stresses the fact it was she, who saved the baby´s life. If she believed the doctors, Miha would not be here to-day. She followed and supervised all the procedures done to reduce Miha´s disability and is still mistrusting. The bond between mother and son is, of course, still very strong. I once made a mild reproach to that extent, but was at once corrected by Miha, «It is not as you say, my mother is not like that, she is giving me full freedom. «Very likely, I really did not correctly evaluate their true relationship, probably under the impression of their first visit, which had not been very kind on us doctors, justifiably so. In the 70's there were few doctors, if any, who believed that a baby with that kind of tumor could be cured.
Later on we became friends;we have met often at our charities as well, where the mother was of great help. Once she told us: «It all happened in one afternoon, when he was 5 months old. Within two hours, from one diaper change to the next, this baby was healthy and then severly ill. When, after his two-hours sleep I removed the diapers, his legs fell like two chunks of dead meat. I panicked. What to do? Where to turn to? My first thought was the pediatric clinic. The examinations went on and I was wandering along those hospital corridors like a lost soul, not knowing what to do with either myself or my baby. Those hours were as long as years. A (female) doctor made the diagnosis early, a certain malignant tumor in the spine. She was not believed; of course, at that time there were only some 5 cases like that reported. Surgery should give the final answer, and did«.
It is not easy to put into words what the parents of such a baby must go through, during the diagnostic process, after the diagnosis is made, through surgery and through the long time of reconvalescence. Other children have quite often been cruel toward Miha on account of his »Chaplinesque« walk. This shook off him like water from a sea-gull-He is a strong character, has always been a fighter. He posesses an inner strength, which he sometimes has transferred to me as well. He always came back from defeat, persisted, striving again and again, after each surgery.
Miha has a brother who has never been seriously ill, but who also, in his own way, went through all the twists and turns of his brother´s illness. Even today he feels neglected within his family. Now, as an adult, he understands, while at that time, as a child himself, he did not have an easy time. Their mother says that Miha, being a sunny kid by nature, has always been a joy to have around, while this was not always true about his brother, who was 3, when Miha fell ill. Miha himself says, that his brother at home never enjoyed the true love and care, since mother was preoccupied with him, his sick baby brother. Miha is quite aware of that, especially since his brother still reproaches him at every opportunity: «You always receive more than I do« although this not so.
»The worst thing is when your child is seriously ill and this happened in our family«
Thus begins a letter by a mother, who, even after her child´s completed cure, was not out of trouble.
»When my son Branko was 9, he often complained of pain in his leg. I took him to a doctor, who told me these are growing pains, many children have them, the bones are growing bigger. I had a different foreboding and therefore persevered until, finally, the diagnosis was established. Horror! A veritable calvary began: radiation treatment, chemotherapy, and when in trouble, you look around for help. After several years of treatment I asked our social worker for some financial help for the child. She refused, also refused his admission to school, since a child this sick cannot attend school and since it is my duty to take care of my own child. Finally we had to go to court, which ruled that the boy is mentally fit and should to go to school, with the governement's help. He graduated from high school, with a lot of moral support from his schoolmates as well as his teachers. There were many difficulties, but with success after all.«
Later on, Branko´s tumor recurred and spread. His leg and a half of his lung had to be surgically removed. He is thus handicapped now, but bright and diligent, works with computers, capable of taking care of himself and earns his living. It is now 10 years since the last evidence of disease was removed.
Oncology for children in Slovenia.
It would not be right if I didn´t dedicate a few words to my colleagues, older and younger, that they so richly deserve. Therefore, a little about the development of pediatric oncology in Slovenia. It is about two institutions which had to co-operate from the very beginning – sporadicaly at first, but closer and mor systematic with time leading to eventuel success.
The hospital for children in Ljubljana started in 1865 and became part of University Hospital in 1945. Sub-specialty wards were being formed and in 1950 a young assistant professor, Dr. Majda Benedik, focussed on treatment and research of childhood cancer and hemophilia. A department of pediatric hemato-oncology was formed in the early 60' with her colleages Dr. Nasta Mihevc, a pediatrician and Dr. M. Žemva, a biochemist. The Slovenian Center for hemophilia grew from this in 1967, with a central registry of all patients with congenital blood-clotting disorders. Slovenia being a small country (pop. 2million), there is close co-operation between pediatricians of all sub-specialties. The pediatrician-hematologist, who treats cancer, often leukemia, is also involved in other blood disorders. The department of pediatric hematology also closely co-operates with related specialists like radiation oncologists, pathologists, cytologists, surgeons. These latter are mainly working at the Institute of Oncology.
The Institute of Oncology is the central, and only, cancer hospital
in Slovenia, providing treatment, teaching and research. It was established in 1938 by Prof. Cholewa and had 28 beds at that time. Since 1945 the scope of surgical interventions has been widening and a separate surgical ward was created with surgeons dealing exclusively with cancer. In 1955 radiation therapy separated from surgery and with the first board-certified radiation oncologists (my late colleague Dr. Danica Žitnik and myself), this specialty was established. At about the same time Dr. Božena Ravnihar initiated the Central Cancer Registry for Slovenia. Reporting and follo-up of every cancer patient in Slovenia was obligatory. From the very beginning, the mode of work at the institute was multi-disciplinary, which formed a basis for future research and teaching. From these beginnings, the Institute was established in a 200 year old barracks (now Building A). It has grown into a 300 bed facility with surgical, medical and radiation treatment teams, own specialized pathology, cytology, radiophysics, isotope, imaging and data processing departments. The Center for Pediatric Hemato-Oncology was officially founded in 1971. The children are being treated both at the pediatric hospital