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.