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