The Little Knights
Page 5
that we watch the little patient all the time during the »session« on the screen and the parents can talk to him as well. Sometimes a child finds the whole thing an interesting »happening« which, at the very least, does not hurt.
Nevertheless, it may be a scary thing, especially the first time, alone, in a darkened room, beneath a monster machine and only half understanding what is going on. A very young child, a baby, is often being tied down or fixed in a hard, rigid, molded »bed« so that he cannot move, or even put to sleep. Whichever way, the child feels violated and helpless. It is very important that both the child and the parents should be well prepared for this.
Besides, radiation treatment is a long-drawn procedure, going on daily for several weeks. Younger patients often need quite a bit of persuasion to lie down under the machine. Lollypops and playthings do help, but most help must come from the parents. A rare child finds this a relatively positive experience.
This is how Ljubo spoke about his radiation treatment, after having gone through all kinds of hardship before his brain tumor was recognized, operated upon and put him on his feet again. He was 10 at that time. Radiation treatment on outpatient basis took 8 weeks, prone in a very uncomfortable plaster bed. «I was greatly relieved when I could leave the hospital. Perhaps this is what the veterans felt after the war? If nothing else, radiation at least did not hurt. The way they treated me made quite a difference. They talked to me, sometimes I was given a lollypop, and not« because I was good«. Unfortunately, there were consequences, my hair fell out. The whole thing was probably made easier because I had been used to trouble and also because I knew in advance what to expect. I was told that my hair might or might not fall out. But I don't know of anybody, who did not lose his and so had I. To know this forehand makes it easier, though. An added shock was the worsening of my eyesight so that I had to start wearing glasses« (This, however, was not due to radiation, even if Ljubo still thinks it was).
Chemotherapy,
meant a huge step forward in childhood cancer treatment. Children with cancer died during previous decades, in spite of sometimes »sucessful« surgery and/or radiation. This was because of metastas-implants of cancerous cell through the blood stream to vital organs and tissues. We usually don't see these at the time of diagnosis, but we know from experience that they exist. They often crop up in an organ and start growing, if no method was applied to destroy them, before they settle down. To cure leukemia or lymphoma, widely spread, when discovered, is not possible without chemotherapy, of course.
The very word chemotherapy somehow revolts the patients. Again, children are more tolerant than adults, but they don't like it either, especially if unprepared. They do not understand why it is necessary and good for them despite having to spend a long time in the hospital where the child feels lonely and abandoned. But, the anxiety and uncertainty experienced by his parents remain with the child. Therefore it is right that both the child and his parents be properly prepared to face the unpleasant aspects of chemotherapy. These can appear as damage to healthy organs and tissues, such as bone marrow, mucous membranes of the intestine, kidneys and nerves. Sometimes, though not often, these side effects can be life -threatening. Therefore, the course of chemotherapy has to be supervised by a doctor, preferably a pediatric oncologist. For the child, these unpleasant side effects take the form of fever, nausea, vomiting and pain. Most our former patients named chemotherapy as the most troublesome part of their treatment. It is mostly administered through a vein, but in about one third of the patients it is necessary to make a puncture with a long needle into the spine to deliver the medication properly into the spinal canal. The child does not see what is happening behind his back. This mode called a lumbar puncture is a particularly unpleasant memory for children.
Ljubo, (we shall meet him again) described it like this: «My most vivid memory is that of lumbar puncture. I should have been suspicious of the nurses insisting that this won´t hurt. I was really suspicious when three nurses held me strongly, so that I should not move during what should not hurt me anyway. But it did hurt, and very much so. As a price for good behaviour (I really coud not do otherwise, held down as I was), they gave me candy. I yelled: »You lied to me and that is not nice!« And threw the candy across the room. Such a moment remains in your memory. Who can you trust if not those who take care of you and treat you when ill? Ljubo was 10 at the time, he is now over 20. This was his only experience of the kind, but there are other children, who go through such procedures once a week or once a month during a whole year or more.
One toxic effect of chemotherapy, not dangerous but especially noted by the children is the loss of hair. It may cause anxiety and depression. Naturally, the experience is different for children of different age. A small child will probably suffer more because of pain or the abscence of his parents, an adolescent more because of hair loss.
Marjan, born 1964, was first seen at the Institute when he was 10. He was treated for a sarcoma on his left ear, spreading to the lymph glands of his neck. He was operated upon, irradiated and received chemotherapy for a year. In 1986 he acceped our invitation to visit the Institute. He was now 22 and had not seen a doctor for several years. He was still living with his parents and younger brother in good harmony. He is lively and talkative. About his memory of treatment: «All of a sudden I noticed I am losing my hair. On the way home, in the train, I touched it and it remained in my fist. This scared the hell out of me - nobody told me that such a thing could occur. And I thought, if this could happen without warning, something much worse also could.
At about 14, he began to think about the events connected with his illnes. He found out, that he had a malignant tumor and for the first time it occurred to him that he might have died. He also uderstood why nobody ever talked to him about it: because he was expected to die. During his adolescence and up until recently he had »quite a spleen«. He has had no problems during grammar and high school, but later on he did. He was mostly alone at home and did not socialize much. If he did, though, everybody seemed to stare at the left side of his face, where his skin was scarred by radiation. After graduating from high school, he studied agronomics successfully, but stopped half-way. He could not continue in spite of studying hard, parents pressing and his nerves on the end. It was just getting worse. He took a job as a chemical technician, perhaps to continue with studies after calming down. He does not have much company; he lost it when he discontinued his studies. It is, however, no problem, he is rather sociable now. His psychologist wrote at that time: This boy´s intellectual capacity are extremely high, but of no use to him due to the simultaneous emotional disturbance. In the emotional sphere I note a suppressed aggression with infantile emotions and mainly defective adaptation as well as a certain mistrust. At the same time there is a pronounced inner insecurity together with an obvious need of warm human contact. And the opinion of another psychologist, a few years ago: «His mental capacity is very high. But more pronounced are emotional disturbances with feelings of deprivation on account of his previous illness. Thus, his self-image is ruined. This represents a serious obstacle for his daily functioning.«
Marjan remains single at 37, lives with his parents, has not graduated from university. He manages a small private firm but cannot live on his salary. He came for advice, and help. He is well-known to our team, has many friends, has taken part in many meetings and charities. Still has long hair, covering the left side of his face. His business activities remain poor.
Sandi survived a similar tumor, with mostly similar treatment but his story is much different. True, he escaped radiation, so that a surgical scar on his knee is the only visible mark left. Sandi is his true name, since he gave an interview for a newspaper.
When Sandi was 5, a painful lump appeared on his right knee. It was found to be malignant and was surgically removed in its entirety. Sandi received chemotherapy for 10 months after that.
Ten years later, at his first visit at the Institute of Oncology, at age 16, he said that he
had had no fear of surgery. It was far worse to cope with chemotherapy; to this day he loathes all kinds of medication. It bothered him most, plus the fact that he had to stay at home for such a long time. He could not understand why he had to lose his hair and why he had to undergo such severe, prolonged treatment, when, after all, he had had no painful disease. What kind of disease he had, he didn´t know and doesn´t know to this day, doesn´t want to think about it.
He is in first year of high school, feels totally equal to his peers, equal in all activities. Left with no complications of his treatments or his illness, he indulges in riding. He has liked riding ever since he spent a vacation with his grandmother, who had horses. He has had no doubt about what he would like to do and what he would do. He was average in grammar school, this year he is doing worse, because »I don´t study enough«. Concentrating on something for a longer time gives him headaches.
We discovered no evidence of disease and the psychologist wrote: «I find no psycho-pathologic signs in this intellectually average youngster«.
Sandi visits us yearly. Naturally, he