WHAT FOR?

Ol’ga Ivanova,

Crimean Repablic children’s clinical hospital,
doctor-hematologist

Another phone call in the reception room... Another sick child comes to the hospital. We look at one another - four pairs of female eyes and the tired eyes of Valentin: it's starting again. Another suffering child accompanied by the unasked questions of broken-hearted parents: "Why? For what sins? How?" Why, why, why ...

Valentin is the Head of Hematological department of the Crimean Republic Pediatric hospital. Children stay here for a long time - eight, nine months, a year or even more. According to statistics, annually in Crimea, 20-25 children fall ill with leukemia, 10 with cancer of the lymph nodes, 10-12 with lymphoma. This is within European levels. Statistics show them as numbers, but for us they are Vika, Sergei, Lenur, Nastya...

When a child is brought to the hospital you try to hide your feelings as the child's mother stands near you and you need to encourage and comfort her somehow. Parents will have to face a very difficult and painful fact, that is to accept the reality(a terrible diagnosis. This implies that the mother will have to go in to the hospital with her child in order to be near during the whole period of treatment and the father will have to bring food and other necessary things daily and stand by the ward's window, not having much opportunity to communicate, continually preserving the hope. They will need a lot of strength because the disease has displayed itself late, after it had already destroyed much in the system.

Then the precise work of the nurses starts - the catheter is already in the vein, transferring blood - beginning the treatment. The treatment itself can be either life-taking or life-saving. Death is near for one, two, seven days... The first smile of the child is a very fragile beam of hope and only one thought comes to mind: "O my God, keep him, help us, if you can, help us to save another life, help..."

So many lives we were not able to save. Almost 10 years ago nearly all the patients died. A terrible monster this cancer of the blood(leukemia(taking little patients in the same way it took my father 30 years ago. Now at night I see them together - my father and Alyosha, who died of leukemia almost eight years ago when he was four years old. Someone said: you shouldn't "cling" to your patients, nor let them in your heart. But what can I do when first I hear them laughing and then crying: "Save me, mummy. Help me. I do not want to die! I want to live!" And I see blood flowing from the nose, from the gums, from the mouth, the growing pallor and large eyes full of terror - I want to live...

Mother is near, you can hardly call her a person, she is only a shadow with lifeless eyes: he is her only child, and she will not have children any more. It ruins everything - purpose in life, hope. Actually, the matter is not in hope at all; it is in him who is still alive - flesh of her flesh dying as a candle...

I am closing his eyes, leaving the ward. I have no strength to say anything Death won ... I am going along the corridor. It seems to be very long though it is only a couple meters. In moments such as these, our department is especially quiet, there is dead silence, oppressing, consuming like fog... Then, the phone rings and everything starts all over again.

Until 1990 if would happen this way every time: 97 of 100 children would die and there was no possibility of helping them. Like in the story about a Japanese girl who did not have enough time to make one hundred paper cranes. But, nine years ago we were lucky to meet - by God's will or by the lucky chance? - doctors from Germany, very nice people. They were traveling throughout the Soviet Union with the purpose of starting experimental clinics which would treat leukemia victims using new methods. These methods were difficult, expensive and very dangerous, but they gave real chances for life. In-patient treatment lasts for 8-9 months, then 16 months of out-patient treatment (supporting chemotherapy). A patient is considered to be healthy if the cancer does not reoccur within five years after the beginning of his treatment.

That summer, for the first time, I saw how the eyes of my colleagues were shining because we were able to do something. I felt that I could work forgetting about time, food and home, even my children and all my problems and trials. At that time, we became a team. We visited Minsk hospital where they had been administering BFM, the treatment program for leukemia, for a year and it helped snatch children from the clutches of death. I remember the first ampoules smuggled in for a dying child, and initiative of the parents who barely scraped together enough money to provide for the chief doctor to go to Germany "to seek the knowledge;" and the first treatment procedures that were brought from abroad and the difficult, sleepless nights which were full of hope yet.

The first acknowledgment came in a year - not from our country but in the face of a leading hematologist in the US, Professor Pinkel, prominent German hematologists, Professor Shellong and Dr. Raiter. They believed into the possibility of working with an unknown hospital, preferring it to hospitals in the capital, and accepted us to the Leukemia group of Ukraine. Our colleagues gave us new equipment and medications, Professor Shellong decided to supervise the work and to support the clinic.

Finally, on warm summer day of June 1st, we had the first "release," the first happy faces, tears of joy and the first children were released from the hospital.

Eight years have passed since that time. Our former ideas about leukemia have gone. We are not a department of terminal patients any more. People come here determined to fight for life, hoping to win. Today about 70% of children who come our department with acute leukemia survive the five-year period after which we consider them recovered. 70 instead of 3 as it was before. But every summer, when we celebrate a "release party" and invite sponsors, media people and also clowns and a puppet-show and all those who have recovered, we can't help thinking: "They are happy and healthy but what will happen with those 30 lives lying in clinic's beds right now? How many of them will survive? Who will die? Who will die because the medicine runs out before the patient has finished the entire course of treatment?" Again, death will stay at the bed-side and neither tears nor entreaties will help because we are short of medicine, equipment, donors and nurses. That is because our country is not able to provide proper treatment for them as well as work for their parents. Who will be the next to become another statistic?

Sometimes I am asked: "Is it worth trying to start treatment? Maybe it is better to take him home and let it be, since the tumor is fatal anyway, the child will die a day earlier or a day later. Why inflict extra suffering on him and oneself?.. My soul always protests against this. It is more than a mere protest. I just "explode" inside. In despair, this solution may seem to be easier. We are not God. It is not ours to decide who will live and die. We have no right to shorten the patient's life on this earth. It may be terribly difficult. It may be painful, but hours turn into days, days into months sometimes even years. A day of life - can it be counted? I do not know where this assurance comes from, but working here as a doctor I have learned that even a minute of life has its meaning. While a person is alive, his faith in deliverance, his love and hope are alive.

Recently I had a painful talk with the parents of 12-year old Genya. I saw a grief-stricken man, almost gray and woman with penetrating blue eyes - overfilled with grief. Their son was brought in late at night after two months of wandering from one hospital to another. When they brought him in it was clear that the process had affected his nervous system and recovery was practically impossible. Even with modern methods the prognosis is grim. We have slight hope for success which will lead only to short-term improvement. And, hope for a miracle. What can we do? Take him home and watch him die? Or should we fight for a minute, for an hour, for a day of life? Forbidding oneself to look into the future? Should we fight when there is no strength to fight?... Zhenya's parents have chosen the second – their cross to bear.

Then there were terrible convulsions at night, and, in the daytime, more and more, then he was transferred to the resuscitation ward, then intensive care. We celebrated New Year near Zhenya's bed, new tests, new procedures, more tests and more procedures... And he went into remission. The boy regained some strength, then his eye-sight. He is continuing his treatment and I even let him go home for a short break. He lives.

Our children usually know their diagnosis and its severity. Every person, regardless of his age, should consciously fight the disease and know how dangerous his enemy is. We give them the book "What is leukemia?" - it is translated from German and has funny drawings of children who had to go through this terrible course of treatment. Parents, together with their children, read this amazing (paradox?!...) and detailed account of how the disease begins and how it will be treated. Nobody dares to ask these children (from one to fifteen-year olds) why it is necessary to fight for their lives. But they know the answer. You begin to understand much more when you look at them. People are shocked when they hear about our children: where do they get such strength to endure?... IVs – for weeks. 10-12 cerebrospinal punctures within half a year. And mostly without tears and complaints. And how they care for their mothers! Natasha (an 11-year old) with acute leukemia, after overcoming another crisis, would put her mother to bed and after making sure that she was asleep Natasha would begin to clean the room.

Natasha wrote these verses in the hospital, not very skillful, as children's verses rarely are, though usually children do not write THIS at the age of 11.

The night is dark, I am alone
Dead silence only at my right
Children are sleeping, the doctors do so
Birds are asleep
only I'm awake in this night

Bones are aching, hurting the back
My hand is swollen, gnawing is its fate
Hair is shaking off more and more each day
Strengths to fight it though I lack.

Leukemia, leukemia
You affected all my blood
I will fight you, little witch,
And will go to the beach!

This story does not have a happy ending. Natasha died. Myeloblastic leukemia is resistent to treatment. She needed the most severe form (even by our standards) of chemotherapy. In the long run the disease went into remission but her lungs gave out.

This year we also lost Seryozha Sokolov. He was 13 years old and understood everything ... We managed to prolong his life for a year. And it was an agonizing year for him. Maybe we really should not have prolonged his suffering?.. But if you could have seen the desire to live that was shining in his eyes! Over time, more and more anguish appeared there. But each time somebody visited him, his eyes thanked them for not leaving him alone, for not abandoning him, for sharing his struggle. As he lie dying, he regained consciousness for the last time and tried to comfort his crying mother, telling her that he did not feel any pain ...

WHY? Probably, it is better to drive this cruel question from your mind and do not seek the answer. I am not even sure if I have strength to seek the answer. What if this search will take the strength that I can give to my children? After all, we all are sentenced to death. So let's die?... In medicine there cannot be efforts spent in vain. Nothing can be in vain because everything has its value.

As a popular song goes: "to treat - then let's treat." I was trained to be a doctor and I am put here to treat people for their diseases. Put by whom? So far I have more questions than answers. The trivial post-Soviet answer like "of course, there must be Something..."does not satisfy me any more. As the father of one of my patients said: "In our department everything that we did not want to think or to know or doubted, becomes so real, so clear, so evident here that we do not need any words to formulate or prove..."

Well, we have no time to speculate. I wish we could only focus on the treatment but we also need SOMETHING to treat our children with; and what can we do when we hardly have anything? That is why as we take off our doctor's robes and get out of our ward, and we begin to seek the money and medicine (and there is a trick in getting them after you found them!) and any possible help... This is how we enter the third millenium.

Another phone call ...What's next?