An unexpected question

One day in the hospital we watched a film. Natalia was riveted by the story. Myself not so much. All the time my thoughts were occupied with how I would tell what could be possibly be in store for her in the future.


My thoughts drifted back to the film. It was the story of a young boy, an adolescent whose life is turned upside down by an automobile accident.

The doctors manage to save his life but they are forced to amputate one of his legs. The boy had been an outstanding athlete harboring the hope of one day becoming a professional athlete. I cannot not recall the details but I do remember how this boy was shown undergoing an internal struggle. It was a virtuous coincidence which would make it easier to broach the subject I had in mind – or so I thought.

The subject of amputated limbs was an ever present one in this hospital. There were children who were going through the various stages of grief at the loss of a hand or a leg. Some would find it easier to accept the loss, others fared worse. I spoke with some of those children and their parents and they told me that it felt like losing a vital part of themselves.

Anna a young girl who had all but 20 cm of her leg amputated would complain of the itching in her leg. Seeing no limb there I looked in bewilderment until I came to understand the concept of ” phantom limb pain”. The nerves in what remained of her leg projected and carried the signals of the lost leg so that it felt it was always there.

In Natalia’s case, though she was to be fitted with an endoprosthesis there remained a significant chance that it would not hold and that she would have to have her leg amputated. The young boy in the film had struggled with his loss. Perhaps this would resonate with Natalia on some level. Like the boy in the film she had been a gifted athlete and lived for sport. I wondered how she would deal with it.

The boy’s story was inspirational. Though he would lose a leg he would continue to achieve athletic excellence. It was something that I believed, in my own heart, that if you wanted something bad enough nothing would stand in your way.

When the film finished it was quiet and Natalia was basking in the afterglow of its inspirational message. I told her that there was a possibility that she would lose her leg. Natalia was silent. I could see her considering what I had said to her. Then she asked me,

” what will the doctors do with my leg after they amputate it”


I paused for a moment, then I started to laugh and she smiled. I had prepared for every possible question she might pose, at least I thought. I told her that I would speak to the doctors and ask them what they did with the amputated limbs and return with an answer.

A train to parts unknown

I recall the precise moment when my daughter received her first dose of chemotherapy. I could hardly hold back my tears. I felt despair take hold of me when the reality of the situation flooded in; however, after it was all over and Natalia sat on the bed recovering I was surprised how little had appeared to change. There were no immediate bad side effects and what’s more her pain had stopped immediately.


Natalia had a smile on her face. She was happy because the pain had vanished. She still had her hair and she did not feel any urge to throw up. All of the feared symptoms of chemotherapy had not materialised and instead there was just a sense of relief that the pain had finally stopped.

My mother called me and I stepped out into the hallway to take the call. When I returned the Natalia noticed that something was not right and she asked me what was the matter. I didn’t want to give the impression that what she had endured was just a minor inconvenience and that it would soon be over but I didn’t know where to begin. How would I tell her that this first treatment was the first in a long arduous process, that she would have to endure many more sessions of chemotherapy, followed by surgeries, that from now on her life would be completely turned upside down.

I sat on the side of the bed as I did always . The room was small, it’s walls painted a uniform white. A huge set of windows overlooked an outdoor balcony. Inside there was an unoccupied bed beside Natalia’s. Except for the one television everything was furnished in pairs. There were two identical wooden cupboards, two matching stools and two adjoining bathrooms. From the outside the door to the entrance to this room resembled the door of a train carriage. When I looked at this door I imagined that it was a train. Natalia and I had boarded this train and we were now on a journey to an unknown destination I thought. In the front was the nurses’ room, the engine room. It was there that the dosages of chemotherapy were prepared. To its right was the supply room. In the rear were the doctors offices, the elevator, a kitchen, a large public bathroom and the O.R.

I found the plain white walls of the hospital depressing. Unfortunately the chief nurse, Madame Anna never permitted decorations. It was a shame really. The children would produce such beautiful and colorful artwork but there was no opportunity to see it all displayed. Those walls would have come to life had Madame Anna allowed it but they stayed anemic and plain all the time that we were there.

Madame Anna was uncompromising. She would never let anyone forget that she was the chief nurse. Cold and imperious Madame Anna found a likely ally in the chief of the dietary staff, another woman who considered herself like Madame Anna infallible. Deviations from rules were not tolerated. It made the atmosphere difficult at times. This was a place that demanded understanding. Parents here with their children facing a diagnosis of cancer could not have been more vulnerable. Any tender mercies would have been appreciated. From Monday to Fridays there were surgeries taking place in the O.R. It was chaotic at times, like when the nurses could not find a vein to attach an I.V line. Or, on the second day we were there and a patient swore out loud from the pain of rehabilitation exercises. Or, when people whooped out a cry of joy upon received positive result. When people wanted to someone to step out to buy a treat for their child from nearby store. No, always Madame Anna and her companion in arms would frown and disapprove of all these expressions of humanity. Really if one has no tolerance for passion in such circumstances perhaps they should find another profession. I thought this as I considered the first stages of our journey on this train and I searched for words explain to Natalia our new voyage.

My child needs me

In the short time we had spent in the hospital we never spoke to Natalia about cancer. Why were there so many children in the hospital? Why did they cry from the pain? Why were they always throwing up? There were signs all around us and yet it was so difficult to broach the subject. Natalia never asked me and I never discussed the topic. We shared what became a mutual comfortable silence on the subject.


If anything Natalia came to love the hospital. I realized it was because she was with me all day long and had my undivided attention. We could talk about anything and passed the day playing all kinds of board games and cards together. I had never had much time to play these games with Natalia before. Work and domestic chores seemed to take up most of my time but in the hospital there was a new awareness of the precious quality of our time together.

The pain in Natalia’s leg had become much worse than when she had been first diagnosed. Walking became too painful forcing her into a wheelchair. Strong daily pain medications became a necessity. The preliminary tests showed that immediate chemotherapy was the only option. I initially took the news very calmly which surprised me. Natalia was blissfully unaware. The doctors presented all of the possible scenarios as well as the fact that she could lose her leg to amputation.

The doctor in charge of the treatment, Dr Wojceiech was wonderful. Though the treatment would be arduous with no guarantee of success I felt buoyed by his optimism. He had a plan and he was determined and I felt energized by him as I am sure did many of the parents whose children he treated. He radiated assurance like the good father all of us needed, children and parents alike.

When the nurse notified that the chemotherapy was about to begin my pulse raced and I felt suddenly overwhelmed. I remained in this state of anxious arousal throughout the night, even after Natalia had received her first course of chemo. I would wake up in starts, the realization jarring me to consciousness through a fitful night of sleep. I struggled against myself in this way until the idea settled into my consciousness, the thought that gave me strength and settled me down: ” My child needs me”.

A coming of age

The day that Natalia would have her surgery had finally arrived. I had made a mistake. I told her that it would be an “interwencja“, a word that in Polish at that time almost a decade ago was used to suggest something minor. Today in Poland “interwencja” is used much like its English translation” intervention”, as an euphemism for an operation among other things. Natalia had understood the word as I had intended but in reality it would be a far more serious affair, an actual surgery where she would be put under general anesthetic. I had wanted to protect her and I tried to shield her from the truth.


The procedure would require that a small piece of bone be removed from the leg for examination by the pathologist. Natalia had no fear. The image remains to this day, she wore a slight smile, a brave little soldier ready for anything, speaking without what seemed a care in the world to the anesthesiologist. That image rests with me as she embarked on what would the first of the 19 operations that she has endured to this day, with more planned for a future date.

While she was in the operating room I felt a flood of anxiety. I was nervous about the outcome of the biopsy. The suspense was hard to bear. Perhaps I was also worried because I had kept my emotions in check when I was in front of her but now that she was not there the veneer slipped away. Everyone must have these feelings when the circumstances are so raw, when it is your child that is put in such a vulnerable position.

When Natalia emerged from the operating room, it was very difficult for her to speak but the doctors encouraged us to talk to facilitate her revival from the anesthetic. Though she struggled I could understand her words. She was aware of her surroundings. She asked me immediately why I had told her it was only going to be an intervention when it was actually an operation. This is a question that she still asks me to this day. I had thought that I would protect her and not disturb her by minimizing what she was going to undergo, but she was shocked at the last moment when she had learned that that she was about to undergo more than she had expected.

It was a turning point in my view of her. Before the diagnosis she had been such a gentle child that I worried about her constantly. It had seemed to me that she was too vulnerable and too forgiving. A skirmish with some of her friends where it had been clear to me that she had been the object of bullying saw her trying to explain and defend those who had mistreated her. A child psychologist had told me that she needs to understand that the world can be cruel and hostile place and that she must learn to defend herself when the time arises. After the surgery when she asked me why I had hidden the truth from her. I saw her then as far stronger than I could have imagined. I saw her as an adult, someone who understood the implications of what was happening to her and able to endure. It was a coming of age, I realized, even in someone so young.

The struggle against despair

Time in the waiting room seemed to drag on interminably. Finally we were called into the doctor’s room where we were met by a young doctor who proceeded to explain the procedure that Natalia would undergo.


He told us that a biopsy would have to be done but he believed that the initial diagnosis of Ewing’s Sarcoma was the most likely one. I started to cry and he told me to hold myself together and stay calm. “It’s not finished.” he said. “Here we will fight. We are very good, though Natalia has little chance of survival. Her X-rays show that the cancer has metastasized throughout the lungs. There are 5 to 6 very large mets and many small ones that have almost almost coalesced into another large metastases.” I was stunned into silence by his indifference as he casually assessed her chances of survival at no better than one in a hundred. I was angry and detested him with all my heart. How could he be so cold?

I would learn later that this young doctor would die of an illness less than two years later. Perhaps he knew of his own prognosis at the time and that was why he was seemingly so indifferent to our situation, a cold rationality to keep his own emotions under check. Or maybe he was just callous by nature. It’s not something I would ever learn and it would be nothing more than speculation to say more since I would not hear the true story of his passing nor would I try to pry into his affairs. Though I was hurt by his insensitivity to my daughter I was saddened when I heard he had died. My immediate reaction to him had been to his pessimism not to him. My anger toward him, I realize, had been a reaction against his rejection of the hope I struggled to keep alive in my own heart.

I had dealt with tragedy in my life but this was completely different. There is nothing more difficult to endure than the suffering of a child except that is when the child is your own.

I suddenly developed a phobia about talking to doctors. Had it not been for my partner Darek I would not have been able to manage. Darek would be first line of defense. He would talk to the doctors who treated Natalia and then convey the news to me. On one occasion when I was alone in the hospital and the chief of staff tried to talk to me I found myself running away with my hands over my ears. I did not want her to tell me that Natalia had no chance to survive again. The doctor would have to wait for Darek to return before we learned what she had to say.

Natalia was admitted into the oncology ward and Darek returned to our home. I would stay in Warsaw at the living quarters provided by a Foundation associated with hospital for relatives of sick children.

All of us were housed on the third floor of the building. I was thrown in with a group who quickly proceeded to drive me crazy. They chose to dwell and recount in lurid detail the history of tragedy at this hospital, of children who had died. The most vocal were those whose own children were not threatened, who were well on the road to recovery.

I was already struggling against the pessimism of the doctors and here I was thrown in with a group who seemed to want to throw me headlong into despair again.The worst was a woman whose daughter I would learn had recovered from a relatively minor ailment but continued to linger in the hospital for undetermined reasons. She seemed to revel in telling me terrible stories.


Like I had with the doctors I withdrew from the pessimism of these people and I learned to look people in the eye and listen to see if they would help me, aid me in my battle to keep hope alive. These people garnered my unadorned affection and I would help them in any way I could to keep their spirits high.

The Hospital: Our second home

When I first saw the facade of the hospital I was overcome with fear. I tried to calm myself by repeating the mantra that everything would eventually return to normal. Natalia was scheduled to have a biopsy to confirm the provisional diagnosis of Ewing’s sarcoma. It was something she did not want to have done. I hoped that it would be negative, that the doctors were wrong and there was some other explanation of Natalia’s symptoms but I had a bad feeling that I would not leave me.



My recollection of this time is shrouded in a haze, everything touched by the fear and uncertainty I felt at that time. The hospital was very old. As we entered we were dwarfed by the immense rooms crowned by what seemed impossibly high ceilings. I felt small, lost. Inside I felt even smaller, a little girl. I wanted to hide in a corner of one of those grand rooms and surrender to the impulse to cry. I wanted to hide in a hidden recess and disappear from view. Like a 6 year playing in a sand pit, I wanted to bury myself in the sand and imagine that I was elsewhere, far from my present reality. But much as I wanted to escape, I knew that this was not an option. I was a mother here with her sick child and I would have to be strong for the sake of my daughter. I had already learned to put on a strong front for my daughter and I knew that I would continue to play the role for her sake.

We met a nurse who explained what would take place over the course of the treatment. She was warm and friendly. I recall her face, her compassionate smile and welcoming eyes. She gave me real hope because what she said seemed sincere and grounded in true experience. So many people upon hearing the news of my daughter’s diagnosis had told me that it was going to be OK but to me they seemed like they wanted to brush over the subject, something that made them uncomfortable, the subject of cancer and the possibility of death. The nurse we met offered no such false consolation. She spoke in concrete terms of the treatment and how other children undergoing similar procedures had fared well. She told us that we had to be strong and be prepared to constantly fight against the illness What she said was important to me, something that I draw strength from to this day.

I never experienced the question that sometimes people ask when they are faced with the diagnosis of cancer. I never asked “Why my daughter? What had she done to deserve this? “I have never thought this way. It had hardly been two years since my husband’s death and my outlook remained the same. I never questioned my misfortune. I was too caught up in my life and responsibilities to dwell on questions that offered no resolution. I suffered the grief and I looked toward the future. I accepted the reality of life. I had no choice. Great challenges had been thrust in my path. I had to be equal to the task.

I recall the smell of the hospital distinctly. It was a stringent chemical smell that hung in the air. I thought of it as the smell of chemotherapy. I saw children walking by pushing their IV drips. Many were missing their eyebrows and eyelashes, lost as a side effect of the chemotherapy. When they looked my way their eyes were brought into dramatic relief unadorned by the softening effect of hair. It was the normality of the situation that stunned me. There were children who looked at us with inquisitive stares. It was no different I realize from when a child arrives at a new school in midterm and is greeted everywhere by curiosity from his or her peers.

I saw a doctor speaking with a colleague and breaking into laughter. It struck me that life in this hospital was normal. It was a realization that would deepen as time went by. My initial perceptions were colored by preconceived notions I had of hospitals. I saw a woman waiting in the hall with her daughter and she was engaged in a conversation with another. She spoke, I recall, like a woman in a shopping mall. Her speech was engrossed in domestic details that seemed superficial and out of context in a hospital where children were being treated for cancer. I felt a flush of resentment. She had no heart. How could she be so shallow I thought to not realize the gravity of the situation? I would later learn that this woman was caring and dedicated to her daughter. She had spent the greater part of each day for over a year in that hospital. This hospital was her second home and over time life had become normal and I learned that my initial perceptions were made by a jaundiced eye of a newcomer.

The Road to Warsaw

When the doctor said cancer, the first thought that entered my head was that Natalia was going to die. There’s an impulse to resist using the word cancer because, I suspect, that people think it an insurmountable obstacle, something from which you cannot recover. I told myself not to think in those terms. In the hospital, doctors in the radiology department had reassured me that once they amputated her limb Natalia would be OK. Don’t worry yourself too much she will be OK. It was reassuring on a certain level but I was in shock at the thought of Natalia having to endure an amputation of her leg. The doctors were casual in stating the prognosis but to me it was alarming. My daughter would have to have her leg amputated.
I made calls to everyone I knew, family and friends to find out anything I could about the illness. I quickly learned how commonplace such crises are. Everyone I spoke to me had been touched by cancer either first hand or through close ones. It’s a terrible illness and yet I realized then there are so many that are completely unaware of it like I had been before my daughter’s diagnosis.
I searched anywhere and everywhere I could for any information I could about the particular form of cancer that the doctor suspected Natalia of having, Ewing’s Sarcoma. It’s a relatively rare form of cancer, and even though Poland has the highest prevalence of the disease in Europe, even there it still occurs at the infrequent rate of 1.5 cases per 10,00 people in the population . Despite this, I would discover that my babysitter’s cousin had had the illness and was now in remission.She told me of the Institute of Mothers and Children, the hospital where she had recieved her treatment and which had an excellent reputation in Poland for providing care to people with cancer. She explained that the doctors there had a reputation as miracle workers, able to solve the most intractable problems. This hospital was the only one in Poland that received money from the government for creating very specific endoprotheses for children whose limbs had to be partially amputated due to cancer. Their success rates were excellent the young woman had told me. I was ecstatic. We had an appointment there the following day.
The hospital was located in Warsaw, the capitol of Poland. We were so fortunate to have the appointment. In Poland health care is administered on a regional level. Under normal circumstances people were not allowed to seek medical care outside their regional centers, but this Hospital was the exception to the rule. Since it specialized in the care of cancer patients it was allowed to adminster care to anyone in the country .
We prepared to leave. As we headed out to Warsaw we had no idea that for the next 4 years this journey would become habit, that the hospital would become our second home during the course of my daughter’s treatment there. I was so full of hope as I have continued to be always. There is nothing more important than hope. It sustains you in the darkest moments. I believe that we must always be positive when we face the future.. I believed that everything was going to work out. Then I realized that I had not given much thought to my two sons. In my visits to the doctor they had been in the care of relatives and friends. They were in good hands, I knew and that reassured me as we traveled to Warsaw.