Celebrities are also humans

“You are all equal in my eyes, you are all special in my heart, as each one of you is unique in its shape and form and I will treat you all the same. Giving and taking back what is the most precious to you, life, and no one can change that.”

„Did you see it?” One of the mothers stopped me on the corridor and whispered, not to be heard by others.

 “What?” I asked with slight disorientation in my voice.

 “In one of the rooms lays an actor’s child”. She continues with discretion in her voice.

“Who?” Now I have asked with a bit of curiosity.

“Not sure if you know them, they played in one of the TV series. Nevertheless, they have their own private room, not like the others. And he is always walking with a cap on, not to be recognized. Like people would not know that it is him.”

I went back to our room and started to get course, nervous and at the end even jealous. After a while I was not proud off all those emotion but they were too strong for me to battle from the start. Questions roaming in my mind. “Who are they? Can I spot them? Can I touch them? Can I? Can I?” Or even worse. “So, there are equal and more equal people… we need to be in the room with two or three other children, while they have their own room.”

Luckily, I shook off from all those feelings and realized, that being here is no blessing.  No matter how famous you are, how rich, it will not save your child. May give you a bit more chances and comfort going through this nightmare, but that is it.

I watched them for few days, just to see how they cope with the whole situation. And it was then, when I started to feel sorry for them. It was then, when I realized, that they are not really in better situation from us. Fact, that they were constantly being watched was giving them one more stress to battle with. Stress which already you have too much to deal with. I saw people looking at her, when she was walking to the kitchen, to make a meal for her son. I saw how people gaze at her, when she was asking for new bedsheets as her son, same as any other child, vomited and she needed to change them. Just by herself, with no help from any servants. I saw him walking on the corridor with cap on, hoping that nobody will spot him, take a picture to sell to the newspaper. Or be harassed by paparazzi trying hunting for cheap sensation. I saw desperation in their eyes, knowing what is at the end of this path. And it was then, when I felt good to be anonymous. Where I can have a dreadful day, even cry and nobody cares, nobody judges me, nobody outside my close family notice it. I can hide in the shadows and no one will come and hunt me with the light. While each of their steps, actions, moments were at the spotlight. I can not image what additional pressure they felt, what burden they needed to carry, and all just because they were famous. I no longer felt bad for having to share a room with others, and thanks to that, we met wonderful people, had a chance to talk to each other, cheer each other up. While they were left just for themselves, alone in that room, as no one dared to talk to them.

Later in the week I tried to make an eye contact with them, just to share a smile. Just to show them that people here are swimming on the same boat. Wish them well, but they avoided any type of interaction besides, please and thank you. And still, there was no situation, where you could feel, that they think of themselves as someone better.

After a while, I was told what it means to have a single room, just for yourself. It is not that you are famous, but a bit more special. Special like everybody else might be some day. Special due to your child soon flight to heaven. And they give you a comfort of spending those few days, that you have left, alone. Give you slight feeling of intimacy, they can provide. Without anybody looking at you, anybody talking to you. Just the closest family, loved ones. This was the day I said to myself that I never want to be that special parent. To have a room just for my family. And it was the time when I prayed for them, so God will give them strength to pass through this miserable moment.

Round Five – Routine

Rapid Coject – cisplatin [C], vincristine [O], carboplatin [J], etoposide [E], and cyclophosphamide [C] – code name we heard constantly for past 5 rounds. While the intention is to quickly attack the enemy, I sometimes wonder if it’s not just a lame joke, which somebody played on us. Hiding under complicated acronym the real meaning, which is nothing more than just – “You will get rapidly bold to impersonate, Lieutenant Theo Kojak. Our role model from the 80s TV series”.  All delivered in eight short, 10 days, but exhausting rounds – A, B, C, B, A, B, C, B.  At the beginning we had our fears, but also high hopes that it will get easier further down the line, while the truth is quite opposite.

Round five, back again to dose A. We knew more less what to expect, since we already went through all the stages and side effects of all those chemo injections. This help us to calm down a bit and slowly get used to our new home, new life. To things, which were terrifying at the beginning, now seen from a bit of a distance as they were becoming our daily routines.

“Hello Mrs. W, how was the night?” Mag wake up to a pleasant voice of the corporal. “Can I have last night fluid balance?”

Mag half-conscious picked up a notebook from the windowsill. It was 5:45 in the morning. “400ml drank and 200ml peed. And he wet the bed in the night.”

“Thank you” Corporal replied and left the room.

 Mag closed her eyes again. Those were these few more minutes of sleep everybody tried to grasp to have a little more rest.

Balance of fluids

From day one, with first dose of chemo injected to your child’s body, you need to keep track of all the fluid that are going in and out. In our case, as Szymek was still a baby that was using diapers, we need to bring from home small kitchen weight and each time he drank anything or peed into the diaper, write down the amount in the notebook. Keep the books like a good accountant. Additionally, any vomiting and diarrhea, which happen often during the injections, were noted down. All to control Szymek’s kidneys and digestive system. Every 6 hours we have a visit from a corporal, who takes down our balance and later reports to our leading captain. In case of any anomalies, which sometimes happened to Szymek too, certain meds are implemented.

“Szymek just vomited again and I did not manage to catch all of it.” Mag welcomed me with words I always hated to hear. “Can you please bring new bed sheets?”

It was devastating, seeing his ghostly pale skin and lack of strength to keep his eyes open. Without saying much, I turned around and went to the small storage room located in the middle of the corridor for fresh bed sheets. Turned the key, left in the lock to allow parents pick fresh bed sheets once the Sergeants are done with their shifts, and looked for fresh covers.  Pillow covers top shelf, children size, quilt and bed sheet in the middle laying right next to each other. There were days when children size was all out and I had to take adult size just to have clean one. Parents knew this room very well, I would say too well.

“Here, I will change it.” I said to Mag coming back to the room. “I will give you Szymek, so to make it quick”. I have picked him up from the bed and placed on Mag’s chest. She was sitting next to his bed on her camp-bed, exhausted to the limits one can take.

“I could not sleep at night, worried that while turning he will wrap the cord around him causing the needle to come out.” Mag read at the beginning of our training program, that it rarely happens causing chemo burns, which are very painful for a child. She tried to minimize Szymon’s suffering as much as possible therefore each time the injections were happening she was in the standby mode ensuring that in case something happens she will intervene immediately.

Those were times when I had to do best not to make any eye contact, especially with Szymek, so they will not see me crying.  I bit my lips, to cause some pain in me, just to take my mind off it.

 “I need to fall asleep for a while, can you please take care of him?” Mag asked when I was putting Szymek back to bed.

“Yes. Rest, I will keep quiet. “

 „BREEEEAAAAKKFAAAST!!!!” Sergeant’s scream spread out thought the corridor walls informing everyone that breakfast awaits in the common kitchen for cadets to pick up.

Art of feeding

From early days, when we slowly started to introduce other foods into Szymon’s diet beside breast milk, we made sure what he eats is healthy. We knew how much food can have impact on your well-being. We were buying ecological vegetables and fruits, straight from the village, and try to avoid anything that had too much of preservatives. Water instead of sweet drinks. In general, tried to protect him as much as we could to ensure we support his healthy growth.

When we entered the 7th floor for the first time, and went to the dining area, we were genuinely shocked. We knew how important is to properly nourish your kinds during the training to give him all the necessary vitamins, so that he can fight back himself the cancer. We knew that low fat diets and no sugar is a key to sabotage the mission. Instead when you looked around most of the plates had French fries, hot dogs, sandwiches with Nutella, sweet yogurt and desert on it. All full of nasty preservatives.

“What ta hack is happening here?” Mag whispered to me. „Do they know how much they are harming those kids by giving them this type of food?”

“Maybe this is what they need to eat during the flight and they are trying to adopt them as early as they could?” I was also confused by what I was seeing.

Soon we realized it’s not their will but reality, which forces those parents to give their loved ones this kind of food. Seeing how dramatically cadets are losing weight, to be as light as possible for the flight, you don’t even think about healthy anymore. You just give them whatever they willing to put in their mouth, just to have something in, hoping he will digest at least part of it, before it will come back. Even Captains were telling parents. “Your child has high potential, soon he will finish the program and fly away. It would be barbaric to take away from him the pleasure of eating junk food, or with all the other suffering he takes forcing him to eat healthy.” And soon we began our battle too. 

Coming back to the routine. When you enter the program, Sergeant, responsible for the nourishment, conducts a survey with you. It is to know if your child needs any special diet, is allergic to anything. She emphasizes the importance of proper feeding, giving you an impression that food here is top level. Soon you realize that this was just a good marketing.

Every morning, round 8 a.m. breakfast is distributed. Plates are nicely laid on the shelf right next to the entrance. Each containing 2-3 slices of bread and cheaply looking sausages, accompanied with small dice of butter. Honestly, I often thought prisoners get better meals then cadets in the facility. For sure tastier and much healthier. And biggest irony of it are candy bars as part of dessert, full of sugar, and given to trainees with cancer. So, when Sergeant called, for most parents it’s just a sign, reminder, that it is time to go to the kitchen and from plastic containers, their brought from home, pick up something eatable for their children. It is common practice for parents to bring their own food to the facility, prepared either by them or grandparents. Once you enter the common kitchen/dining room area right next to it there is a small room, full of those storage containers, where parents prepare these meals.

Once the meal is ready, sandwiches for the breakfast, something more exquisite for lunch, art of feeding begins. Almost all the cadets, during the training, suffer from lack of appetite. Chemo make the food taste like cardboard, plus constant nausea and vomiting is not really helping. Limited resources, you have in CSD, is not helping also to feed your kid properly. From time to time you can see a parent running around the whole facility, asking others if they have certain food, for which their child asked, knowing that if he will manage to get it, there is a chance his kid will eat it.

„Did he eat anything?” I asked Mag when she woke up after a while.

“I tried. No chance. You know, that we need to wait for the injections to finish and antiemetics to start to work.” Mag replied. “He asked for a soup couple of times, but when I came back after heating it up, he just turned his head and said no.”

We tried our best but as we were moving further into the program his appetite was diminishing, slightly coming back once the injections were over, but still far from what he could eat before the program.

Captain’s audit

Round 10 a.m. everyday there was a small Captains checkup round where cadets, or in case of small children, parents were asked how was the night and what is general cadet’s state. Twice a week there was a general round lead by Major, who was having an eye on all the cadets to ensure nothing is happening without her approval. After a while we just waited for it to be over as we finally could start the day. In case of any questions we just went afterwards to our leading captain.

“As we agreed, not matter what are the results you will be able to go home to celebrate properly you 2nd birthday.” Captain Blind welcomed us two days after the chemo injection was done.

“Blood results are stable and not showing any signs of Szymek being ready for the flight anytime soon, so we don’t need you here. Just remember, same as last time, to come each day here for Neupogen shot, we will try again to stimulate those cancer cells to growth faster. Side effects as you know, growth of leucocytes, but let’s hope this will not happen this time”. Relief came, as we knew home is where Szymek feels much better, starts to eat and to rally. For Szymek, as he was already feeling much better, this was a cue to eagerly start packing. “I’m going home!” he stated with confidence and passion in his voice.

“Yes, take care Szymek, and happy birthday!” Captain responded with a smile and left the room. Soon after, with Szymek’s adorable “Bye!” shouted to corporals siting in the central counter, we were heading back home.

Injections

Next day, when most people were starting their lunch, I packed my family into the car and drove to CSD for the shot. Szymek after few corners knew where he was going, and became gloomy.

“We are just going for a short while and coming back home.” Mag tried to cheer him up. “Will you choose a price afterwards?”

Each corporal, to easy up the suffering, had a box with small prizes. After each procedure, child could choose one to cheer him up. Szymek also liked that and after a while he was saying. “Prize! Prize!” There was no claim in his voice, more of reassurance, that since he took the shot without crying much, he can take the prize now.

We put analgesic ointment 15 minutes before on his port to ensure needle will no causes any pain. And head to the room where the corporal from daily center were doing all the procedures. Once the shot was done smile on Szymek’s face was back.

“It did not hurt! It did not hurt! Mommy, it’s over!” He was laughing through tears and I just couldn’t help it, I needed to bite my lips again. The pain was helping me withhold from crying. On the way back, he was full of joy, as we kept our promise, that it will just be a minute and we are going back home. Szymek is unbelievably peaceful through all time. I often cried seeing, what he needs to go though, and I knew well, that he shows me how the real man should take it. This two-year-old boy showed me, grown man, that you may have a bad moment, vomit, etc. but once that is over, smile should be back on your face. No reason to cry, no reason to feel blue. Life is beautiful, life is full of love and why should we not be happy in it.

Routine

Vomiting, dizziness, weakness and powerlessness. Counting all the fluid, ensuring meds are fine, ensuring needle will not pop out, changing the bed sheets, changing diapers, changing the wet and dirty clothes, heat the food, force to drink, force to eat and Neupogen shots for desert. Another test, another needle into his body, sedation, nerve racking waiting for the him to be back, waking up from it and smile is back on his face. This child is blessing from God. His happiness and love is the only reason why we are still alive…please let it last.

Saint’s parade

“I saw him sometimes at night standing right next to Szymon’s bed. He often stroked his head spreading comfort and easing the pain. He never looked at me, as I was not the one for whom he came, but I was always glad that he cares for him, giving the warms and relief, which I could not give…”

First you seek help among the living, from captains to anybody who, without extorting money, is willing to support you. Soon you realize, that nothing what you encounter on your path to full recovery goes without permission from He, who is not bonded by our reality. Bonded by rules, you are restricted with, to have an illusion of stable, predictable nearby future. In short, superpowers, which people don’t have not to cause even more chaos in this world. You start to read about miracles, which are happening all over the world, people who should be long dead in accordance to our medical knowledge, but are still alive. And it gets you thinking. “What can I do, how can I help myself in experiencing God’s mercy on my soul? To whom should I pray to get proper intercession of saints? To be heard.”

You start to look through those stories and try to find which of those saints had the most of those miracles happening, which had the biggest God’s grace and cured people from dread diseases. You look for patterns, which link all those miracles, and hope that if you do the same God’s mercy will come down on you. Quickly you know, on the path of being called saint, you need to be first proclaimed blessed by church. And the whole beatification process needs prove of miracles. This got me thinking, I admit it could be seen as naive thinking, but you will try everything, so I thought maybe if I pray to one of them, he will have the proof of being saint by performing a miracle on my son.

„Alright! This is my final offer! I know you need this as much as I need it. I know you need this for a different reason to mine, but I know it lays in our mutual interests to make sure it happens.” He paused for a second and then rose his finger to the air. “One miracle! One small, or maybe for some of you big, miracle, and we are good. I need it for Szymon to stay on earth and you need proof of your holiness. We all know that without it nobody will believe that you are saint, and we know only saints gets the best seats there. This is my final offer, take it or leave it. Calling once! Calling Twice! Sold! “

Act I

Blessed Martyrs of Peru

Curtains

They were one of those we decided to turn into. It was one of those situation, one could call coincidence, but those who believe would see God’s finger pushing certain people on your path. Soon after we were listed, to our room in the facility, entered a couple with little girl. And with only few words exchanged, we realized that they came from the same city as my wife, and know same people from one of the prayers group my in-laws were going to.  And we did not need to wait long, when one of those people, from that pray group, said that there is no coincidence in life. And since we are both on the same path we should pray to two Polish Franciscan priests who were killed in Peru in recent times. They were proclaimed blessed by Pope Francis, and if God’s will is to make them saints, they need more miracles. I personally was not too convinced about this idea, so soon has forgotten of their existence.

Time passed and we started to have more and more opportunities to go outside the facility. We used those breaks in the training to travel a bit, close to our home, to escape from the city and sight-see close by towns. We also started to visit nearby sanctuaries to pray for God’s mercy. There was one not far from our home, that for some reason we preferred most. We heard about couple of strange stories that happen there, people got cured from disease when praying to Holy Mary for Her intercession. Church was beautifully, with huge figure of Mary in the center, right behind the altar. You could sense that there is something special there. It was the same place where saint Maximilian Kolbe was living before he was sent to Nazi camps and died giving his life for other man, who was sentenced to death. We thought that it will be an excellent idea if we ask those monks to conduct a mass to cure Szymon. Place where you could order a mass was just next to the church. There was a small booth with priest siting inside.

“Wouldn’t you like to have a yearly mass?” He asked.

“I am not sure if we have enough money for that.” We replied we a bit of hesitation in our voice.

 “Money is the last thing you should worry about.” He replied and asked. “What is your child’s name?”

„Szymon. Please pray for his health, and help in sabotaging his training.”

 Priest stopped writing for a second, looked up and ask us. “What is he training for?”

„He has a large tumor on his adrenal gland, making him unique and qualifying for a space program where they trained children to fly to heaven.”

Priest paused again for a second and grabbed from his pocketed small, foiled picture and handed to us. Out of the whole pantheon of saints he gave as picture with relics of Blessed Martyrs of Peru and said. “Please take it, these are third degree relics of two blessed Polish priests who were killed in Peru. You have huge drama in your family therefore please pray to them and maybe they can help you on your way.”

Tears came to our eyes, from shock and emotions. It was unexpected, very touching gesture, and clear sign from God that we should, at least, try to pray for his mercy with intercession of those two priests.

All we could say was “Thank you.” We turn around and started to cry like little children.

End of Act I

Curtains