Home for a vacation

The next day we returned to the second floor where we had left Natalia, but there was no sign of her anywhere. Already in a fragile state of mind I was crestfallen at the change and immediately began to suspect the worst. The doctor then appeared and started at once to allay my fears.
"She’s alive and in stable condition," he said. "We transferred her a little earlier to the ICU." He gave me a little smile and at that moment it seemed to me that the sun had come out and color had been restored to the world.
When we arrived in the ICU Natalia was in tears and seemed very agitated. The nurses were relieved to see me. "She has been calling for you all morning." Natalia had come out of a three-day coma disoriented. She had revived around 6 am and for the next four hours had been repeating "I want to see my mother" over and over again. Natalia was in no way a needy child. I attributed her behaviour to the fear she must be feeling. I stayed with for the whole day and late that night I told her that I would return in the morning, that I should sleep and so should she. Natalia insisted that I stay. "You can sleep the next time," she told me. I stayed with her all night.
The next day we were transferred to the Oncology ward. I speak in the second person plural now to highlight how I spoke throughout our time at the hospital. Natalia had even asked me once, why do you always say "we are getting our chemotherapy" when it’s just me that’s receiving the treatment? I had replied that I had in no way wanted to claim her position, rather to just share in her pain and feel part of her trial. While cancer is an individual diagnosis it hits at entire families in a collective sense when it is one of their own who is affected
Returning to the events of this story: I wish you could all see the expression of the doctor who had told me that Natalia would probably never revive from her coma a few days before. We ran into him in the elevator when we were on our way out on the way home for the rest period between chemotherapy treatments.
"For the love of god where are you headed?" he demanded.
"Home," we said, for "a holiday in good health."

shut up

I don't know where I found the strength to go on. Everything was chaotic on the first day but time seemed to move quickly. The second day was much the same. I sat on the bed beside Natalia. The doctor confirmed that her condition had not changed; she was still in a coma completely unresponsive to any stimuli. With great effort I forced myself to speak as clearly and as naturally as I could. I tried to take us back to a better time.
We were back on a family vacation in Otmuchow. The twins were five years old, Lukasz was eight. Natalia would remember this time well from all of the videos we had recorded. Those were good times. I had always encouraged my children to watch these videos to keep alive the memory of their father, Zbyszek, my late husband. They were so young when Zbyszek had died in a mining accident that I knew I would have to work to preserve their memories of him. I reminisced about these moments as I sat beside Natalia. I spoke about the things that Natalia loved, fishing, lying by a campfire till dawn, and going to see famous castles. I was losing myself in this narrative when suddenly I sensed Natalia's finger begin to tremble. I screamed out in delight. I had been praying for any kind of response like this. The doctor looked at me carefully, then he looked at my daughter. Calmly, without any emotion, he approached the bed and then began studying monitors.
"This is probably an unconditional reflex," he said.
Afterward he explained to me that sometimes the muscles will move without our volition and the readings on the monitor seem to confirm that. I refused to believe him. I told Natalia to prove this doctor wrong, to move her fingers again. The doctor stood behind me as I implored Natalia to give us another sign. Natalia did not move. The doctor went back into his place but after a minute Natalia responded again. The nurse called back the doctor. He seemed more open this time. He asked me to continue. I asked Natalia if she could open her eyes and then I saw an amazing sight. Natalia was attempting to open her eyes. She gave the impression that they were glued shut with Krazy Glue. She could not open them but the strain and the effort of her movement was clearly evident. I was so overwhelmed that I started to cry. I wanted to help her detach one lid from the other, to help her along.
After a while, the doctor decided that she could breathe on her own and decided to remove the intubation tube. I felt very anxious when I heard this. The nurse and doctor were on standby in case she stopped breathing. To return to normal after being so long on artificial respiration is not such a simple thing. The nurse suctioned away the saliva; it sounded terrible, I can still recall the sound to this day. After a while Natalia was able to breathe unassisted. I was so thrilled that I started babbling aimlessly. I must have been borderline hysterical, repeating the same sentence several times.
"You see, my girl it's not that difficult ... Do not worry, soon from here gonna ... How you feel? ... Mommy loves you"... I must have sounded mad. The nurse carried out her routine and still I babbled on, and then Natalia said something in a thick baritone which we could not completely understand. It was normal, I was told, after intubation.
"As you say, would you repeat that?" The nurse repeated, but again we could not understand. Then the nurse started to laugh.
"What did she say?" I asked.
"You really don't understand? It's funny, really funny," replied the woman.
"No, I do not understand, please repeat it to me," I said.
"Shut up," she said.
"SHUT UP?" I repeated, confused. Is it the nurse who is saying this to me, I thought. I looked at her curiously, and at this time I realized that Natalia was telling me to shut up. She had not spoken to me in this way since she was much smaller and was going through a defiant stage. Natalia has no recollection of what she said but I still can't believe that she could speak to me like that. I joke with her now at times about what she said, my beautiful, rude little girl.

What do I do?

I was afraid the next day but at the same time I felt strangely calm. I had the feeling that nothing worse could happen, or it may have been that I simply did not have any strength left and was just indifferent. I tried to convince myself it must be the former and allowed the optimism to push me forward as if I were on a race track with only a single lane to travel. On arriving at the hospital an unusual presentiment flooded over me. I saw all of the things in front of me with a new insight: a nice hall, a boutique for the patients, a gourmet restaurant, people busy with their mundane affairs. Like photographs, frame by frame — or more like a movie, I thought. Life so ordinary at times can surprise us, show a ruthless edge when we least expect it. For me, everything revolved around Natalia, but here in the hospital I could see people unaware of my concerns. Now in retrospect it's clear how Natalia's illness overshadowed everything else in my life. Writing this story I see myself at that time moving in slow motion, focused only what mattered, Natalia.
I stepped out of the elevator on the tenth floor to the intensive care unit. I felt glad that I was about to see Natalia. Going into the center I looked around. In the hall were a few incubators and three beds with older children, but I could not see Natalia. I panicked. The doctor saw my face and walked over to me and quickly pointed.
"That's your daughter," he said
"Impossible," I replied.
My Natalia was a finer, more slender, smaller. I looked at this stranger's face, and felt a new level of despair take hold. It could not be ... and yet. Her body was swollen, her skin an unnatural color. Her eyes were glazed over and dull, unresponsive to the doctor's words. He turned to me and I understood implicitly that she did not respond to any stimuli.
"We have to keep her in an induced coma. The medications she was given are too strong for her weakened state, so we had to slow everything down. Allow her body a chance to metabolize the drugs we have given her. To tell you the truth, I can't assure you that she will come out of the coma," he said.
"What can I do?" I asked.
"Let the lady trying to talk to her right now follow her response. That's all we can do at this time," he said.
I drew near Natalia and my hand stroked her hair. My daughter. How do I talk to her? How do I talk to this child? She can't hear me. What do I do?

Almost...

It was a rush but everything felt as if it were going in slow motion. It's not really happening, I thought, exiting the elevator and seeing people gathered in the corridor. I went to the room. Bedside there were two doctors and a nurse. The doctors ordered procedures that the nurse performed quickly and efficiently. They paid special attention to my daughter’s eyes — the incredible speed at which the pupils oscillated from right to left. Nystagmus was the name I heard them use for it. I watched Natalia. The tips of her fingers started to gently move and then her whole hand. In the blink of an eye Natalia was wracked by strong convulsions. She began to rise and fall from the bed. Almost immediately she started vomiting.
The resuscitation team sprang forward and I was told to stand back but I stood there like a pillar of salt, unable to move. I heard someone say "her heart's stopped. We have to get her back on track." I saw at once how they attached the paddle to the body of my child. I wanted so much to understand what was happening and then I was ushered out of the room. When I stood in a corridor I saw my mother-in-law crying and praying. She kept repeating, "It's already too late, it's already too late." I kicked the wall with all of the power that I could summon and released a shrill cry. Darek came up to me, hugged me tight. He said nothing; he could not. "She's really dying," I said softly, my voice emptied of all emotion.

Then I was surprised when, after a short time, the door opened and people exited into the hall pushing out the bed on which Natalia lay. She was unconscious, all the monitoring devices still attached, but alive. The doctor informed us that she would be transferred to the ICU on the tenth floor of the hospital. I was allowed a short time with Natalia. The doctor assured me that she was in a stable state and that the worst was over.
I felt an enormous weight fall from my shoulders. The doctor told me to go home and rest. He told me that I would need my energy. I thanked him from the bottom of my heart and I left for home to see my sons.
I felt a relief that I could not begin to describe, words would just be inadequate. I felt phantoms accompany me then inexplicably a severe headache set in and along with it a nameless sense of despair. At home my boys had waited to see me but I could not rid myself of the dark humor. I could not control myself. I cried out loud and my boys stared at me. I remember their frightened eyes — Igor, his dark eyes widened with fear and Lukac, his baby blues protectively watching his younger brother. I didn't have the strength to pretend to them. The anxiety flooded back with redoubled force. I regretted that I was not in the hospital. I don't know when but I eventually fell asleep. It was not for long, but it helped. Had I changed so much, at least I had mood swings, I thought. It's a good sign, far better than being numb. At least I could still feel.

Losing Hope

I glanced at Natalia every now and then while I sat beside her. This time when I looked I was faced with an image that haunts me to this day. I had been drifting in and out willing myself to stay awake. I had started to drift off and then had awoken with a start and looked her way. I could not believe my eyes. Very slowly I moved closer until I was face to face with her. The image would go away. Natalia’s face was covered in mold; she was starting to decompose.


In panic I ran out of the room, shouting for a nurse, outside the hallway was well lit and empty. I was frantic. No-one heard me and I became even more panicked. Then a nurse came running out a room down the corridor. She tried to calm me down,

“What’s the matter?” she asked me.

“Natalia — her face — it’s not normal. You have to save her.” I said.

She looked at me with a shocked expression for a moment and moved toward Natalia’s room. I grabbed her sleeve and crouched behind her. I felt like a child at that moment as I looked over her shoulder at Natalia. She turned on the light and saw her asleep. There was nothing there. She was asleep as before. I realized then I had had a hallucination. The nurse turned her attention to me.

“How long has it been since you last slept?” she said.

“Three days and three nights” I said.

“Ma’am, you need to rest.” She told me. “You need to conserve your energy or else you will not be able to help your daughter beat this.”

I waited that night. In the morning Darek arrived. I told him what had happened and we cried together. And then I called my mother in law to ask her if she could take my place at Natalia’s side while I was away and she agreed.

I felt strange at the thought of leaving Natalia. It would be the first time that I was away from her since she was diagnosed with cancer. I liked the idea that I could return home for a while and see my sons but at the same time I felt unease. I was not sure of what I could do.

I then recalled that I could take care of unfinished business. After my husband’s death I had been receiving financial assistance from the coal mining company for which he had worked. He had paid insurance all the years that he worked and this money had helped support us when I had left my job to take care of Natalia; however, it was contingent on filling out the necessary forms. This was work that had to be taken care of.

The office was on the way to our home so we went there first. The people in the office were aware of our situation so they spared us many of the bureaucratic hoops that were normal in these circumstances.

We were on the way to our home when the phone rang. It was my mother in law. She was crying. “You must come Natalia is dying.” she said.

I told her we were on our way. I was numb. I wanted it all to end. Hope had left me. A pall of despair hung in the air as we drove back to the hospital.

Silent tears

I have told this story to others so many times that now my recall of all the details is instantaneous.


We had traveled almost a 100 km to the nearest hospital in Katowice. Natalia’s blood tests had so alarmed the doctors in Warsaw that they had told us to make our way to a hospital immediately. We arrived and were taken aback by the sleek modern building. It was gorgeous unlike the hospitals I was accustomed to seeing. It inspired confidence.

Darek had called ahead and asked for the consultation. After he described the symptoms and gave the names of the two doctors that had recommended we take Natalia to a hospital we were given the green light to bring Natalia straight to their care. A place would be waiting for her.

When we arrived at the hematology clinic we were told that we would have to wait until a bed became available. While we waited Natalia had her blood work taken again. They had trouble find a vein. It was if all her veins had withdrawn in fear of what was to come. I watched her grimace and start to softly cry as the nurses poked her with needles in various places to find a place to draw blood. She cried but she remained calm. It was heartbreaking to see her eyes pleading for help and knowing that there was nothing I could do to take her pain away. All I could do was stay beside her hold her hand and let her know that she was not alone.

A room became available. We were ushered into a room where there were two other small children with their parents. There was hardly any room to hold us all. Each bed had an adjacent night table but not much room for more. Overnight hospital rules permitted one parent to stay with their child. The addition of sleeping mattresses made the small room seem even more enclosed.

I recall in perfect detail to this day one of those children who shared the room with us. Her name was Basia. Her father slept under her bed on mattress. She was so pretty. I asked myself why I found her so arresting. It was not her individual features but more the sum of the parts and the way she absolutely glowed. She was in a great deal of pain but remained stoic. For some reason I wondered how there could be people in this word who took pleasure in other people’s pain. It was impossible for me to fathom as my heart melted for this little girl and for my daughter, the trials they had to endure at such a tender age. It did not seem right. However, I drew inspiration from her and her strength in the face of such adversity.

Natalia would suffer in a terrible away after each bout of chemotherapy. Despite the alarming levels of her blood work the doctor at the hospital wanted to hold off with the transfusion for a little longer.

Chemotherapy was a weapon that depended on margins. Though the drugs would ravage Natalia’s body they were designed to be harder on the cancer cells than normal cells. A transfusion to restore normal levels had to be delayed so that the maximum level of stress would be exerted on the cancer cells. Too soon with a transfusion and the fear would be that it would also restore the cancer cells. It was a terrible proposition to bear because it would mean holding off a transfusion for as long as Natalia could bear. Day by day her blood-work became worse. I quickly became familiar with the normal values for each of the values of her blood tests.

Natalia’s condition continued to deteriorate. In her present state she was vulnerable to infection so she was moved into the isolation ward. Overnight I lay beside her on a bed and watched her when a nurse came in and told us that she would be receiving a transfusion. She told me that it was imperative that I watch her temperature during the transfusion. If it went over 38 degrees Celsius the transfusion would have to be stopped. My heart jumped. I was so nervous. Later I would be able to manage the transfusions without any nerves, but this was my first time alone and I felt lost. The responsibility overwhelmed me. What if I made a mistake?

Chemotherapy: the war within

The parents of the children with cancer in the hospital shared living quarters in the Foundation building. They fell into different categories in my mind. Some refused to accept their child’s diagnosis even when the prognosis was excellent and the doctors’ assured them as much as was possible that there would an excellent chance of recovery after the treatment.


There would be people who would never stop complaining over the slightest inconvenience. It was all too much for them. I quickly grew weary of these people.

I knew I had to accept the reality of Natalia’s diagnosis. I needed to preserve all the energy I had to help my daughter. I felt then as I do now that wallowing in self pity is self- indulgent. I knew that I had to be stronger. Naturally I was drawn to others that shared my outlook, to those parents who were realistic but who never gave up hope. Helena was one such parent. She was the first person who prepared me for the trials that were to come in clear way.

She told me that the initial chemotherapy was deceptive. There would be little immediate effects at first but later it would be terrible and the true battle would begin. She steeled me for the after effects of that chemotherapy. In Polish we have a word for it, Spadki; it is used to describe all of the terrible after effects of chemotherapy as the medications lay ravage to the body to stop the cancer. It is a battle of margins. Ideally chemotherapy is harder on the cancer cells than the normal cells. Survival depends on the difference. Doctors must decide what are the highest dosages of these devastating drugs they can administer without irrevocably harming the patient. I took in all of this information and I thought I would be prepared for the worst. I realize now that no amount of warning could have prepared me for what came next.

Darek came to pick us up in the late afternoon. I felt for a moment a childish happiness at the prospect of returning home. I could return to my home again with Natalia and see my boys. I had worried about them. They had lost their father and now the situation must have been so difficult on them. With me away always it must have seemed that they had lost both their parents. Igor, Natalia’s twin brother was 9 and Lukach all of 12 years.

The arrangement for taking care of Natalia was extremely challenging. We had need of a nurse but the health care system in my town often lacked resources. It was difficult to find a nurse to come to our home.

Nurses were obliged to work in the public clinics during the day so we had to manage on our own till one became available. When a nurse was free to visit it was incumbent on us to provide the transportation for her to and from the clinics. I could not leave Natalia alone in her state so I had to constantly look around to make other arrangements.

There was so much to manage. The second day after the chemotherapy Natalia had a panel of blood work done. I called the doctors in Warsaw constantly to update them on her progress. When I told a doctor there of the initial findings he was alarmed by the numbers. He insisted that we take Natalia to a hospital where she could get the transfusions of blood and thrombocytes that she so badly needed. In town there was not a hospital that would take care of her in the way that she needed.

I had earlier visited a nearby hospital to inquire about the facilities there. At first I thought that it would be an ideal situation. It was very close to my home. I had made my way to the Oncology department. In the office a doctor was working to repair his printing and copying machine. I told him that I had come to see it was possible for my daughter to be allowed admission to his department.

He casually informed me that the scanner of his printer was not working without taking the time to look up at me. It felt a little surreal to see him smoking a cigarette all of his attention focused on his machine. He told me to take Natalia to the next closest hospital which was over 60 km away. It was a long way to go and considering how ill she felt after chemotherapy I worried about the distance. I told him I was afraid she could possibly die in transit to another hospital. He replied that it was a possibility without looking up from his work. I left slamming the door on the way out.

I called one of my friends and told them to call my the children’s grandparents to pick up the boys from school. I told her that I had to leave immediately for Warsaw

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.

My Life

I always think that it’s going to be a problem. Why would I recount my history when it always ends up in the same way. There is a need there I realize, some essential inner drive that makes me share my story with others.

When my husband died in an work accident in a Coal mine 10 years ago I was 29 years old left with 3 young children to raise on my own. Lukac my eldest was 9 and the twins Nathalia and Igor were 6.
How would I deal with the pain of losing my husband?


I learned over time to cope with the grief in a way that may seem strange. I would tell myself he is still alive and he has left me, is in fact living elsewhere. I believed this on some level so much that I was even able to think of him as a pig for abandoning his family.. It allowed me to express along with the grief, anger that I felt at his departure. This may seem bizarre, a narrative of denial but it helped when everything else did not. I was able to continue. I knew he was dead but I needed to believe he was still there. I felt the loss most intensely when I would visit a beautiful place, and would find myself sad to consider that he could not be there with me. The feeling would pass quickly when I felt that he was there. There was another side to the way I felt about him being far away at odds with what I believed but a paradox that I was able to sustain.. I felt that he was also there always,watching over me and our children in times of trouble, our own guardian angel.

Two years after his death in December of 2001 my daughter began to complain of pain in her hip. She was eight and had recently experienced a growth spurt so we thought that it was growing pains. She had a accompanying mild fever that could not be so easily explained; however, it was mild so at first it did not merit too much attention, Then the symptoms of pain and fever gradually became worse and we could not dismiss it as nothing, Though I was afraid I felt that my husband was there and he would watch over her.

I was in an examination room, the chief medical officer was standing in front of my daughter’s bed discussing her case to group of student interns. Sitting behind them was an older attending doctor listening to her along with the others. I was there watching and listening eagerly with the hope of finding out what was wrong with Nathalia. The chief doctor was distant . She did not address us personally and she left me with the impression that Nathalia and I were extraneous to the lesson she was giving to her students. She spoke at length of the possible differential diagnoses while she examined an x-ray of Nathalia’s leg and hip. The older doctor came forward and started to examine the x-ray himself, He was lost in thought while the chief continued to explain the case to her interns. The older doctor spoke up and suggested that there seemed to be an unusual finding which was not entirely clear on the x-ray. He wanted to do another x-ray closer to the source of the pain to remove any doubts. The chief doctor disagreed and told him it was not necessary. Fortunately for us the attending doctor was on call that night at the hospital. He went against the chief’s instructions and ordered another x-ray.

He called me for an appointment to discuss the case the following day. In his office I could tell immediately that something was wrong. His expression was serious like there was something he was building himself up to say. He told me he believed it was cancer and that he needed to take a biopsy and conduct other tests to confirm the diagnosis. I could not accept it. it almost did not seem real to me. I thought where is my husband He was supposing to be watching over me. Had he taken a vacation?