Tag Archives: neuroblastoma

Saint’s parade

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“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

My car my confessional

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“Drop after drop falls on my cheek

is it rain or tears?

I will hide it in my small mystery

I will hide my big misery”

Night again. The stars entered the sky and the moon leisurely is making the scene. The breath of fresh air away from corridors filled with the smell of chemo penetrating my nostrils. At times, it’s making me feel like I am the one taking the meds by inhaling it. I exit the facility and head towards a parking lot. Each step away from that miserable place puts me at peace, at the same time each step away from them, knowing that I had to leave Szymon and Mag there, puts my heart at sorrow. This constant conflict tearing me internally apart.

Few more steps, parking lot, during the day fully filled with cars, now empty with only few cars left, and among those few awaits my best friend – my car. One who stands there patiently, no matter if it’s hot sunny day, which heats up its black paint to the temperatures making the car untouchable or frosty winter day covering the car with snow, so you can barely recognize it among the others. My companion on the way home…

 “If you would have had ears to listen, eyes to see, and mouth to tell me what to do… Well, maybe you do, but I can not hear you because it is me that is constantly talking.”

I heard once that some people believe that cars, as many other objects, have souls. They listen to us, react to our emotions, words, and if you will be mean, it will break on you in least expected, least favorable moment. I do not fully cope with this idea, but still there are times where I joke and talk to my car like it would have ears to listen and mind to decide. In current state, this is the best place for me to release all the tension. Let my emotions go. Allow those words laying deep inside of me to come out, and tiers to fall, well hidden behind the rainy windshield. This is one of those places where I felt save to show my weakness.

Door shut, engine started and the journey began. I said goodbye to the security guide on the way out of the parking lot, and left for home. There are nights when even he gives up and goes to sleep leaving the barrier open, so no one will wake him up when leaving so late. I love road back home, especially at night, when there are not many cars, and once you pass few streets, you enter quite long drive through the woods. Driving in the winter, when trees are covered with snow make this passage even more breathtaking. Or in the autumn when the road is hidden in the fog and I am passing by construction cars, working on the side. Mist make them looked like alien invasion seen on films.

“Dad, I know you can hear me although I can not hear you, see you. Please give me just one little sign that you are with us on this path. Please show me something, which will bring peace to my heart. Something, which will reassure me, that no matter what happens it is your will and nobody else’s. As I know you love us and want what is best for us, but please, I beg you, give me a sign making me certain, that it is not my delusion but your love spread to us.”

Those few minutes that I have in my car when traveling back home gives me a chance to pray, talk to God, ask this reoccurring question “WHY???”, or just say all those things I could not say in front of Szymon. It gives me a chance to cry out all the sadness as I don’t want to show him my powerlessness, which constantly hunted me. Those few minutes spend in the car gives me a chance to make all those little plans of what to do next, as I know that planning for more than a month would be just stupid. And sometimes I could just stay silent and listen to the music, just for couple of minutes, not to think of anything. Just look at the road and take my mind of all the problems I have, we have. I know that it was hardly possible to do but at least I try.

I love road back home, these are those few minutes where I can recharge my batteries for the next day, bring back smile on my face and pretend, or maybe believe, that all is and all will be good. That there is nothing to worry because all those horrifying stories, told about the others flying to heaven, doesn’t have to come true in our case.

“You will not hear me. You will not feel me, but you will know that I am close to you.”

Round Four – The Gang

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“Welcome back! We are about to start the second half of our football (soccer) championship game between Visitors and Home. For those who have missed the first half, the score is one to nothing for Home, with the ball hitting the net just before going to the locker rooms. The weather is nice, sunny and warm, making this a lovely day with a family, here at a national stadium. After few minutes rest players are now returning to the pitch. Coaches grouped the players to share some last-minute tactics before the referee will blow the whistle and the second half of the game will start. As all of you know, it’s a game of two halve, therefore still much can happen.

And there it is! The referee started the second half. The Visitors are not wasting any minutes, knowing they are playing not only against Home team but whole crowd who is screaming and cheering for their players. Everyone knows that with this kind of support you can move mountains. The Visitors can feel that pressure coming from tribunes hence they need to score a goal until they will not run out of motivation. As with each minute passing by this game will be more and more difficult for them.

Nice cross by the one visitors trying to reach Tymek. The ball slightly misses him and he needs to catch the pass. Oh no! Quick slide done by Boldy and the Home is back in control. Long pass to Szymon, what nice tackle, he passes one player, two more, and there is only him and the goal keeper left! Will he manage to score? What a suspense. Crowd is getting louder while Szymon stopped for a split of a second, looked into goal keeper’s eyes, twisted his lips into adorable, disarming smile and shoots! Gooooalll!!!! Did you see it?!?! He puts the ball in the net! The goalkeeper just stood there and could not do anything about it! The game barely started and Home managed to score another goal!

2-0 may for some may look like the game is over, but let’s not lose hope. There is still time for at least one goal for the Visitors. One that will raise them from their knees and put back into the game. Visitor’s goalkeeper kicked the ball. Cross went to midfielder, he started his run, passing two defenders. Oh, I think we will have a chance to see a goal for Visitors. The midfielder passed the ball to the attacker. He allowed the ball to pass him. He followed the ball with his eyes while turning around and when the ball was in the perfect position, he hit it with full strength. “Yes?!?…Yeess?!??…Oh nooo!!! What a save!!! Have you seen it?!?! The goalkeeper jumped to the ball, that was heading toward upper right corner and with just a split of the finger he managed to push it away from the goal. The referee whistled and we are going to have a corner. Both teams are battling in the Home’s penalty area trying to win best spot to score or defend the goal. The whistle blown by the referee and the ball is heading straight to the center of the penalty area. All the players are in the air trying to reach the ball with their heads. Yes?!?Yeees?!?! The ball is heading towards the net, kicked by one of the players from the Visitor’s team. Oh no!! how much bad luck you can have in one game?! Everyone saw this ball heading straight to the net, but it took this strange turn just at the end and hit the woodwork! The crossbar is what they need to satisfy with! “

“Don’t stop… never stop…” Voice whispered in my head. ” Please, if this is how our life will look from now on, let it be, but make it last. Last as long as it can be… I want to see him running, laughing, having fun with other children… There is nothing more pleasing to my heart than his happiness… It spreads warmth into my whole body and puts huge smile on my face. I know it may mean that he will not have a chance to live a normal life, like any other kid, but please at least give me those kind of moments… They help me to forget, forget where we are…”

The Gang – bunch of kids, different age, from 2 to 14 years old running around in small groups. They were making lots of noise but no one dare to reprimand them, silence them, as this was what kept this place alive. This was breath of fresh air, which this place gained each time The Gang met. And you could see that for some kids, like Szymon, not having a chance to play with peers, as it was too risky to go to kindergarten or school where you could get deadly infections, the gang was the reason why they smiled on to the way to the facility. The smile, which was healing our bruised hearts from consciousness that we need to bring him back there. To the last place on earth you would like to drive your child too.

The Gang did not have a leader, but Boldy being the oldest was having the highest authority in the team. Szymon, who was treated like his younger brother, were given much more attention and sympathy. This gave me peace in my heart that even if I lose sight of him Boldy will take care of Szymek. Even corporals when they saw those kinds playing, showed sparks of joy in their eyes. They were sometimes yelling to slow down, walk, don’t run, but it was only to keep them safe. They knew that some kinds should not force their heart so much, due recent chemo injection, which still might be weakening their body. “…I beg You! Don’t take this away from me…. don’t take him away from me…”

 “10 minutes to the end of the match. The Home team is in possession of the ball. There is not much time left, there is always not much time. Let’s see what they can do! Short pass and the ball is going to Kacper, who passes to Maks. Just look how he sprints with the ball! He is running towards the goal, slows down trying to catch a breath, looks around and sees Szymon running on his right. One tackle, and two more defenders ahead of him. “Here! Here!!!” He could hear Szymon screaming on his right. One more tackle and Maks and Szymon are left with the goalkeeper. Maks looked at Szymon and though, “He is younger, I will give him this satisfaction to score another goal.” He passed the ball to Szymon, who did a quick slide to reach it, stood up and shoots… Goooallll!!! GOAAAALL!!!! Everybody screams, everybody smiles. “What a day!” Stated the commentator. “3-0 to Home. With only five minutes till the end of the game nothing will take away their victory, nothing will take away this joy of winning the game. They are almost there!”

“Boldy! Boldy!” familiar voice yelled from the crowd. “Come on, your meds are ready! I need to hook you up.” It was one of the corporals ending the game. “Ehh” Boldy turned around and headed towards the corporal knowing that there is nothing else but just to end the game 5 minutes before. “Just 5 minutes?” He asked with high hopes in his heart. “Ok, I am waiting for you in your room. But just 5 minutes, as I will be late with the others!” Corporal responded with a smile on her face. She also knew that nothing bad will happen if she will delay the meds by 5 minutes but lots of good will come out from them playing a little longer.

Those corridors have magical power of changing to whatever those kids have in their minds, could imagine. One day they are football pitch, the other racing tracks. Those little bold heads running, screaming, laughing made this place much sunnier, less gloomy. And seeing Szymek playing with them, sharing the joy of being among other kids, made my heart swell with happiness.

“Please stay tuned, as next week we will host for you last race of the season. Find out who will go home with the World Champion title and who will just have to settle for a second place!”

Competition

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Life teaches you to have distance to situations you come across. Poor are those, who were given such a lesson and they did not draw conclusion from it, meaning did not change their attitude. For me, one of the key findings in those days was that, drama can take on different faces, and that point of view depends on where you sit. What will look like an end of the world for one will be just a minor issue for the other. Your childhood crisis looks funny to grownups, love related issues would be blessing for those who don’t have money to buy food, and stress at work would be nice break from constant pain suffered by oncological or neurological patients. Strangely those who suffer less are often much louder from those who are really in pain.

“How are you?” I asked the person calling me.

“My world just ended, he left me, there is no point of living anymore…he was everything to me…” The tears started to fall on the other side.

“Cheer up, I know you were seeing each other only 3 months, but I can expect that it can be real drama for you.” I tried to put her heart into peace.

“I will try…but you know… I need time…and how is your life?”

 “I am fine. No change, my son is still fighting with this deadly anomaly in his body, but I am sure we will manage. We will beat it and have our life back.” I replied trying not to sound like her problems were nothing compared to ours, but more showing that even if this kind of situation you should not lose hope.

“…I know my problems are nothing compared to yours…” her voice started to be much calmer.

“Yes. You’re right” I smiled trying to bring better mood into the conversation.” Remember this next time you will start to cry because of some jerk leaving you”. She smiled back to me.

Those were times when knowing that not many people can help me, understand me, I can at least show them how lucky they are not to have worse problems.

Most of those who lived the same and understood me well were very supportive, compassionate, and in most cases their story was no better from ours. But there were also people who for some strange reason still needed to compete. Still trying to show whose life was hit more significantly and whose was just dabbed by real life tragedy. Let’s leave them aside for a moment and come back to the facility.

 “Tell me, which door would you like to choose? One where you come here for a week, they do few quick tests, sometimes performed a surgery, and at the end of that week you know if your child either flew to heaven or is disqualified. Or maybe the second one where you wait. You wait weeks, months, sometimes even years. Each day can be the one where they will say – “Now it’s time!”.  Each day is one more day stolen from them. One more day given to you to spend more time with your loved one. Each day which may bring another chance to sabotage the flight. Tell me, do you prefer to know it quickly or wait and just use that time as best as you can. Knowing that the day will come but you just don’t know when…”

There are ten floors at CSD, each one carries different training courses. Key ones are – floor number six, heart uniqueness, most of cadets come here for short period of time. Captains run few stress tests, perform a surgery and at the end parents are told if their child is qualified, which in many cases it means flying to heaven within that time spent in CSD. If not, as the anomaly was fixed by accident and cadet no longer qualifies, they send the child home. Floor number three, sight anomalies. Most of the cadets who are send to this floor will not be qualified for the flight. Reason why they train them is to find something, more unique anomaly, which would allow them to move the cadet to our, seventh floor. My dilemma is fifth and tenth floor – neurological uniqueness. Cadets here showed high brain potentials. They could envision things non-other could. Problem is that in most cases their brain had to disable other functions to perform those tasks. Here you could see, what parents called, disable children, with cerebral palsy or epilepsy, which often is down to either no contact with their child or having a ticking bomb in their head. One that could explode any moment without giving any warning. Each time I saw them pressing button with either 5 or 10 I felt compassion, seeing in their eye despair caused by conscious constantly remaining them that their child will not survive without sever consequences. And all they have is just waiting for the flight while taking care of their beloved, not really knowing what he/she is like. The only thing that they can be sure of is that from time to time he/she suffers lots of pain, as those visions came with a price.

Coming back to the competition visible on our floor. You could hear parents talking from time to time, on whose child is more special. “70 percent chance for a flight?” Asked one of the mothers ensuring she heard it right. “I would love to have that much. My son has only 90 percent. You know what that means? There is only 10 percent chance, he will not make it. That I will be able to take him home with me…” You could see tears appearing on her eyes, when she was saying that. My key take from life is that many times it acts very ironically on us. Especially in those kinds of cases. Later, it was him with only 10 percent of chance to be disqualified, who left for home, while the one with 30 percent made the flight.

Luckily there are also people who have distance to all of that, knowing that those emotions are not really helping, changing anything…just making your life worse…like it would really need to be.

 “What you worry about?” She asked with a bit of surprise. “I forgot to give her Lugol’s iodine before the test!” Mark replied nervously. “So what? Worst case scenario this will just give her thyroid cancer. They will take it out and she will be fine. Not like what she is having now.”. She replied with a bit of irony in her voice, as in those kinds of moments you just don’t know if you should cry or laugh.

Life can be a great teacher. What is huge tragedy for one, for you is just another road block, which you overcome quickly and do not spend much time on it.

Tarantino’s Chapel

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“The path of the righteous man is beset on all sides by the iniquities of the selfish and the tyranny of evil men. Blessed is he, who in the name of charity and good will, shepherds the weak through the valley of darkness, for he is truly his brother’s keeper and the finder of lost children. And I will strike down upon thee with great vengeance and furious anger those who would attempt to poison and destroy my brothers. And you will know my name is the Lord when I lay my vengeance upon thee.”

Once you pass the main entrance of Center of Space Diagnostics, little to the side, there is a room adopted from an office space into a little chapel. During the day, it is open for everyone, and in the evening you can pray through the metal bars, allowing you to see what is inside.  I saw quite often people going there to have their one to one session with God. Praying, begging, promising, arguing, thanking or just sitting there in silence, waiting for some kind of sing of His presence. You may assume, that this is typical Roman Catholic chapel. Modest in its decoration, giving the sensation of peacefulness and calmness. Once you walk inside, you are up for quite a surprise, as I was, when I saw it for the first time.

“Come in stranger to my little boutique! You can find here all you need. Just tell me what’s your worry and I am sure I can find a remedy for it.”

It was at the beginning of our stay in CSD when I found this room. I looked for a bit of peace, for a place where I can reset my mind. I hoped to find there seclusion, as this is what you would expect from place like this. Little that I have knew I was going to have a bit of surprise, for sure this was not the place I expected to find. When I crossed the doorstep I was hit, overwhelmed by all the things, that I have encountered inside.  I sat on the bench and looked around, everywhere my eyes went I saw icons, paintings, figures, drawings or small statues. You name it, you got it!

“Today we have a special offer, say two Holy Mary’s in front of Lady of Fatima, and you can be sure she will listen only to you!”

There are few different paintings of Jesus – big cross hanging right above the alter, Jesus from Manopello or St. Faustina’s Jesus, couple of versions St. Mary – of Fatima, of Czestochowa, bunch of Saints, and even pictures of holy places. And if those were not enough I saw children’s drawings, either thanking or asking for blessing, rosaries and all size of medallions hanging on the walls, relics of saints standing in couple of places. And all brought just one question to my mind. “Where the hack am I? I wanted to have some peace and here is noisier than on bazaar”

“Skip the line to the Jesus, I trust you for only 10$. Please go the left from the main alter and there you will find him. Tell him you are coming from me and for sure He will help you.”

If you feel that you are not worthy of praying directly to Jesus or Mary, you can choose one of the many Saints, whose either relics, painting or pictures are present in the chapel. St. Padre Pio relics are on the right just next to his painting hanging on the wall. If you prefer more recent Saint, one who will better understand problems of the modern world – no problem! John Paul II relics are on the left, accompanied by his portrait and pictures of him. Just ask and he will pray on your behalf. If you prefer more figures over the crosses, or painting over the drawings there are couple of standing here and there. One would ask, “So, what is the issue?” For me, personally, is space. If I would be sitting in large cathedral, I would not even have noticed the amount, but in this small room, where you can hardly fit 50 people, you just don’t have air to breath. And instead of having a spiritual experience, you feel, a bit like you are in the middle of some cheesy Tarantino movie. With more focusing on human rather than God’s aspect of prayer.

“Bring on the actors!”

Leading role is held by priest, close to his 60s, not too tall not too fat, I would say nothing unusual. Until…. until he starts to speak. He has a deep, calm voice, likes to pause from time to time and emphasize words, which are being spoken. At first when I heard him I wasn’t sure if he is serious or not. If this is real Mass or just theatrical play. I saw and heard many priests but this one was too much for me. The culmination of his acting skills can be seen during the Eucharist. “Take this, all of You, and drink from it,“ he paused for a second, then rose his voice ”for this is the chalice of my blood, the blood of new and eternal covenant,” lowered his voiced and started to heavy breathe ”which will be poured out for you and for many for the forgiveness of sins”. He rose the chalice above his head, and it looked like he would dip the bottom of the cross hanging high before him it in and started to speak loud again. “Do this in memory of Me.” Exhaled and lower the chalice. And for couple of more minutes my mind instead of being focus on the pray was wondering, “Did he really dip the cross in the wine or it only looked like that.”

When he kneeled, and bowed his head – people responded, “We proclaim your death, O Lord, and profess your Resurrection until you come again…” And in that response, you could hear our second actor. Mid-age lady, sitting to the right. After participating in couple of masses I saw that this is her spot. She helps to clean the chapel daily and takes care of the decorations. You can see that this means a lot to her, and without judging, you can read from her face, that she had different turns in life, not all good, but now she found salvation in God, and puts exceptional care in being as best as she can in her relation with Him. So what so special about her? First time when I heard people responding to priest her voice stood out. This was the moment when I stated to look through people and try to find out who speaks so loudly, slowly and articulates all the words so much, like she wanted to make sure God understand her very well. And this was far from normal pronunciation. Like your English teacher speaking to you loudly and slowly to make sure you understand every word he is saying to you. From time to time there was also a stand in that help her. Old lady who was singing so loudly and so out of tune you wondered how much more you can get out of this place.

Time for third actor, 30 plus man – The organist. Normally he would not have been even spotted by me, but since he sits behind his organs located on the left side of the altar, you can see him from the start. What so special about him? He has this nervous smiling grimace, that doesn’t fit to the moments in the mass, you starting to feel a bit puzzled. Is he smiling because, he also can not stand priest’s poor acting skills, or he is just nervous, that everybody looks at him when he is playing the organs and sings. I know I am picky here, but in combination with the rest this is just another little relish that just makes this place unreal.

I have tried many times to ignore all of that and just focus on the reason why I am in that place, but I just can’t. It is too much for me. Maybe I saw too many Tarantino movies and still think, that if he would come here, and say “Action!” nothing more needs to be done. No directing, no extra scenography, just “Action!” and he has another good take to his movie. Maybe I am looking for some answers and all those statues, pictures, paintings, people and priest are drowning God’s voice and I just can not hear Him talking.

“Dad.”

“Yes, son?”

“Why you allow all of that?”

“World would be dull, if it wasn’t for those people. And at the end, I loved them as much as I love you.”

Round Three – Is it really working?

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 “Drop after drop it wanders into his veins. Is it a cure or a poison, will it stop or initiate the pain…”

 Szymon was in much better shape, he was walking, running, playing with other kids and what most important – he was eating. Looking at him, you would still see lots of hair on his head, and it would raise a question “Is this really working?”. Is the chemo helping him or just, “making sure he will make the cut”. I still have in mind words spoken by one of the generals, from different center, which I visited few week back to get more perspective on my Son’s uniqueness.

 “You see, we don’t really understand this tumor, how he gives those special powers to a child. We try our best to enhance it, to give additional abilities by spreading it in other parts of cadet’s body, but we often fail. We see cases, where it reacts nicely and progresses further, and cases where it is immune to our treatment and starts to shrink. The worse is with newborns, we see sometimes cases, where we do our best, but the tumor suddenly disappears by itself. We have no clue why this is happening, therefore I can honestly say, that this is one of the most unknown and unpredictable tumor we are facing.” As I was leaving his office and saying goodbye, he left me with one more phenomenon. “There is also an ironic side of the whole training. We try to help those children by putting all kinds of drugs into their bodies and some of them have such a strong immune systems, that they are fighting it back, even chemotherapy. Do you understand? Their bodies can kill chemotherapy! Some may say that this is a miracle, but I think it is just lack of gratitude for what we are trying to do for them.” He said goodbye to me by shaking strongly my hand and leaving with one last comment.  “Have a nice day Sir, and I hope your Son will be a good sport! He will not fly off before completing his training also in our facility.”

 All those words made me sad on one hand, but filled with hope on the other. Something, which can be so unpredictable, gives a better chance for success. I preferred it over the tumor, which gives high certainty, that no matter what you do, he will cause our son to make the flight.

 Round three ended and we head back home for few days’ rest.  We kept in our minds words of the general and wondered how Szymon will react to the training. There were little or none side effects, and when they appeared it lasted for day or two and he was again back to normal. Those were also the days when our hearts were filled with joy, as we had our little moments of normality. We could go outside, spent time with people, and forget for a short while, how serious his condition was. Times, when we were thankful Szymon has a port, inside instead of Broviak, as we could bath him normally, run around the house and play, and have less worry, that something can happen to his central venous catheter. And again, what was key for us, these were the times when we could, forget about the Center, and pretend Szymek is not their cadet. He is a typical, no ordinary, like many others, kid from the neighborhood. Likes to go to playgrounds, slide down on the slide, and play in the sand, spent time with other kids. Further down the line it was more and more difficult to live like this. We would need to isolate him from his peers to ensure he will not catch some illness, which for other is a three day flu, while for Szymon this would mean, to be or not to be.  And this just breaks your heart when you see how much other kids mean to him, when you see that huge smile on his face when he can spend few minutes with his peers. I have never seen a child who would be craving so much for others. When tries to play, poke them with a smile or even cuddle. And it is not, that he is not getting love and warmth from us. He, like all of us, seeks acceptance from others, who are same age, and have a same worldview.

 Drop after drop it wanders into his body, will it give or take his life who can tell. There are so many tears, fears, and hopes flowing with it, which no other substance have. And all of them have one thing in common, this little question attached to each drop, “Will you help my child to stay, or just help him to fly away?”

It is always something more

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 They sat on two comfortable armchairs somewhere between heaven and hell. They knew each other for long, as one created the other, but their path departed when he disagreed with his creator. It was not the first time they have met, and it was never to reconcile, but always to prove once right. This argument lasts till now and it will not be soon before it will end.

“Why you loved them so much? They are no different from animals?” Started the discussion man dressed in black.

“Why you keep asking me this question each time we meet? You know well the answer”. Replied man in white. “I created them, I showed them how to love, I showed them how to care for one another, how to learn and thrive, why should I not love what is really part of me?”

“I still cannot understand it, there is no logical explanation behind it.”

“Maybe because logic is where you seek for the answer. Your heart once knew how to love, but it was you who decided to fill it with anger.” Replied calmly man in white.

“At least I am not fooling myself that they care for me. And for sure I would not sacrifice anything or anybody for them. You on the other hand still think different.” He paused for a second. ”Give me more power and I will prove to you that when you take away their peace and bring suffering they will curse you and turn their back on you. It is not love what they are feeling for you, some turn to you because they are scared and some just in case you will take away their comfort.”

“I take you asked for a meeting because you would like to conduct another trial?”

“Yes, I asked for the meeting as this time I will prove you wrong. Give me more power, and I will show you that you will be the last person they turn to. “

“And you hope that they will turn to you?”

“No” Man in black laughed. “Don’t you remember? I don’t exist? I will show you that they will turn only to themselves, and this is how I will prove to you how stupid they are. They cannot control matter, time, and life but still think that can equal us and you will see that you will be the last person they will to talk to. Nobody really cares about your heaven, earth is what they care the most and quality of their life.”

“All right, I will give you power you have requested but as always I will come when they turn to me and save them from your misery.”

“No, let’s make sure their love is real. Come only when they hit the rock bottom, when there is no more hope for them, when they will feel that whole world turned against them. This will prove, that if they strongly believe, they will receive their salvation in your love and mercy. Otherwise they will just use you.  Stop those miracles for a second and let’s see their true feeling for you!”

“Let it be, this way I will be sure that only those who truly love me will be with me when the time comes and although I love them all I will never force their free will to be part of me”

“Good! So it’s a deal!” Man in black smiled as he knew that as of now the world will stand at his feet.

“Tell me one thing?” Asked man in white. “For me it doesn’t make a difference where we meet, but you always choose earth and take human form, why?”

Man in black did not replied, his face change to anger and disappeared.

 From the very first days we had to repel attacks, which were either dark thoughts hunting us or people who disturbed our peace. We felt that in each of them there is a hidden agenda. This mostly resulted in facing trails between good and evil. Trail where we needed to choose a path, not really knowing the true consequences of it. The only thing we knew was. First, do all we can to sabotage the flight. Second, if this will not be possible, make sure we do nothing to change the trajectory of the flight. So that once he flies, there is hundred percent guarantee he will get to heaven and no other place.

 Trials where from simple, small things like keeping the faith, hope, not to fall into despair in moment where your mind need to be straight, to big decisions, like how to sabotage the flight, which alternative treatment to take in order to lower his chances, how to maneuver the training within its legal boundaries to make sure that you get to the result you wanted.  And there was nobody to help us, no clear guidance on whom to listen. Help came only from intuition and clear conscience, that you did all you could, and make sure that even if you failed, heaven is waiting with wide open door. As simple as this may sound, the difficult part was to say “No”, especially to close relatives. You knew that everybody wishes Szymon all the best, but what’s best in their minds not always matched our idea of proper treatment. Worse part was that we were already living each day on high stress levels and those talks with relatives and fighting back their ideas were not helping us at all.

  I know that world is much simpler when you are none believer. You do all that is in your power to survive, as with the day when your eyes shut forever, rest does not matter. It is much more difficult for us, who hope to make the direct flight to heaven. We knew that with each year spent on earth it is much harder not to make that one false move, which change the trajectory of your flight to a place you would never wish to visit.

“I can easily bring back his health, make you and your family forget the whole drama, all I need is just one statement. Tell the world that I, the lord of light, is your one and only God”. Said man in black.

“Stop deceiving me, I will not sell my soul for temporality, as my eternal life is worth much more to me” I replied.

It has been proven to me that it always about something more. What looks simple in reality has many more layers which we just cannot see.

The Magical World of Max

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“Close your eyes. Let me take you somewhere else, let me show you lush green meadows, where blowing wind bring grass to life. Let me lay you down next to the old oak tree, where rustling leaves comfort you to sleep. I will change the whole world so you will not feel scared, not feel your dreams are disappearing. As you are the reason why I am here, you are the reason why I would kill, just to make sure you are safe, make sure you are far from this horrible place” She whispered to his ear.

 There are not many people who can really cheer you up, make you feel better, especially when you face such a drama. Trick is not to tell you, “all will be good”, as you know that this is the big unknown, but to open your heart with that small key, which you cannot find yourself, and pour some optimism inside it. Give you that energy you are lacking, and with one smile, few words, pad on the back, recharge you fully. And one cannot fake that, one cannot pretend this mood, this energetic way of being, as by now you can see through people. You can easily sense a smirk and empty heart. You just spend some time with those people and you can see that even there is fun and laughter, inside you will still feel depressed. While, once you find a true source of happiness, one word will be enough to lift you up. If you find this person on your path, do everything not to let him go, as he will pull you up from the deepest shadows and bring you back to light.

 We met April and Max at the beginning of our journey. In those days where our heads were still full of negative thoughts, and our hearts had no hope that this can really be stopped. When we spoke the first time, April told us about Max, how he was qualified three years ago, but they cut him from the program because after year of training he was clean and no symptoms of uniqueness were seen is his body. Now they are back, because after two years, they spotted again some signs of relapse. This potentially could mean qualification but they were to confirm that. April was the first to show us how to smile on the rainy day. This optimistic behavior, telling that she is not taking any negative scenarios into account and nothing can change her way of approaching this situation, was very contagious.

 This was one side of April, her glass was always half full. You could drink from her “It will be fine I take no other options” attitude and with few words, couple of reasons why she thinks that, you felt she is right, it all makes sense. They already have knowledge how to work the system in their favor so why should we also not succeed.

“Mum, what is that?” Max looked at blood bag standing next to his bed.

“Today we are drinking raspberry juice, it will make you stronger and bring back your appetite”. Replied April with a smile.

“How long will it drip?” Max asked as he wanted to be unhooked, so that he can go back to playing with friends on the corridors.

“This is quick one, you know this well. Few minutes and you are free again” April cheered up Max not to focus much on the blood transfusion. “Come on let’s play some games”.

 There was also the other side of April, a caring mother for her little Max. She wanted to protect his innocent childhood as much as possible, hence created this magical world where they called chemo – orange juice, blood transplant – raspberry juice. She also helped Max to cope with all tests and side effects by telling some positive stories, or just letting Max know that this is just a quick procedure and soon he will be back to playing. When I looked at this from the distance at first I felt that she is not telling him the whole truth, and potentially you may call it even lying. Later I realized that this is to protect him, his childish mind, where you know he suffered already a lot so why paint all black. Plus you know that you don’t need to scare him by telling all the details in the adult way, as he is old enough to understand how serious situation he is facing, just remember that he is still a child and nobody should take this away from him.

 It is sad and uplifting at the same time, when you see how those kids quickly mature in this environment. They know that it is for their good, and most amazing part is, through them you can see how much your mind dictates your recovery. Younger ones, goes much better through the process, as their mind is not really focusing on the future but takes most out of presence. While older tend to collapse inside knowing what the whole thing can lead to and simple they are terrified with the idea that they can make the flight. Therefore creating this imaginary world, where everything gets its magical meaning, helped Max to pass through the training with a smile.

“Let me paint these walls with blue skies and warm white beaches. Let me take you to exotic islands to build sand castles and swim in beautiful turquoise sea. I just wish to color your world, so gray will not be what you see. And I know that it is not easy to change your world, but maybe my little enchanting stories will be those, which you will relive one day.”

Round two – Home

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“There is no place like home. There is no place like home”

 A month passed and in that time Szymon mostly stayed inside, with rare occasions when we could go outside and visit nearby forest or playground located next to the building.  During our first month we had one exception, which happened just before starting second round, where we had a chance to visit home for few hours. Something that you would not even consider in any other circumstances to be a reason for worry, here generated thoughts and emotions that we needed somehow to bear with. How he will react to his first home visit after spending so much time in CSD? Will he want to come back to the facility? Will he cry wanting to stay home? All of those question brought back fear into our hearts. Something that is so much needed by us, small break from those walls and corridors, may cause more issues than intended.

 Road home was full of those questions and the hardest part was, that since it was first time we were put in this kind of situation, we did not know what to do. It was impossible to predict what will be his reaction seeing his room again. Based on the talk with CSD psychologist, we were advised to emphasize the fact, that this is just a small break, that we are coming home only to pick up more toys, and need to come back to the facility. We had already scenarios in our heads how to facilitate the discussion.  Ensure that the suffering, of him needing to come back to the Center, will be minimized. As proven also later, the youngest one is the most mature in the family, he was the first one to say that we need to come back after we rest a bit and pick up the toys. That there are new friends there, other cadets, and day-room where he have even more toys. He was young at that time, barely talking, but in his heart he knew already, that there are things you need to be do and the best way would be to find some positives in them.

 Second round consisted of 24 hour chemo injection and 24 hour rinsing. Thought of whole day watching our Son, to ensure nothing wrong will happen, brought additional stress. We envisioned that during the night he will turn stretching the tubing, forcing the needle to come out and chemo will burn his body. That something else may happen, which we cannot even think of now, as all is new to us. This was even more stressful to M, as she was the one who would need to stay up all night and watch if all is fine. Luckily nothing bad has happened and time flew very quickly. After those two days we finally heard some good news.

“Unfortunately due to good blood results, we need to take a short break before third round. This means you can go home for couple of days. Your son is in better condition that we initially expected. Nevertheless if you see any worrying signs please come back. Otherwise we will see you in few days for the third round” Said Captain Blind before giving us pass to go home.

 At first we did not believed what we were hearing. First of all, we did not thought that he will take the chemo so well, and second we were told that we will not leave the premises for next three months, and here we are being told different. Once the information reached our consciousness we were fulfilled with euphoria. It is really hard to explain, but I can imagine that it can be somehow compared to what a prisoner may feel when he is about to leave jail after serving his sentence. You finally have a break from those walls, corridors, break from having a need to use common bathroom, kitchen, and finally can have some privacy. You finally can feel your home again. I know that this was mostly felt by M, as she was the one spending all her time in CSD, for me it was more a feeling that my family is back home. Three of us can lay in same bed, close our eyes, and for a second forget about this whole nightmare.  We knew, that it will be just split of a second, soon to be forgotten, that we have to come back to the next round, but we put that thought somewhere deep in our minds. Deep enough not find it quickly, and just enjoy the moment.

 When I was young I treated my house a bit like that prison, trying to spend there as little time as possible. I felt that the world is waiting for me. Therefore either with my friends or alone, I preferred to be outside. Exploring the streets of my home town or open field where my grandparents lived. From dawn to dusk, any weather would be fine, just to leave the house.  This changed a little when I started to work, and home was a place where I wanted to rest after work, but still weekends I chose to be out in the world looking for adventures. Time passed and having recent experience, now I see it more, as a sanctuary, place of return, place where you can hide from the world, from all that is troubling you, and for a short moment in time you can pretend that your life is different, your life is normal.

“Ready for the next round?” Captain Blind looked at us hoping to see some kind of confirmation. We were still terrified and not willing to cope freely, hoping that this is just bad dream and with just one blink of an eye we will wake up from it. And that we don’t need to agree to anything as it is not really happening. Reality, as always, was differed. Expecting from us to be part of this process. Forcing us, sooner or later, to be ready for what is about to come. But can you really be ready for it? Can you really prepare yourself for what is inevitable? Thing, which you try to push away from your consciousness as much as possible. And only moments like those reminds you, that this world is not your home… this is just a place where we are for a short period of time, hoping that once we leave it, we finally rest in peace. Rest in a place where we would want to stay forever, place where we will not pretend to be happy as happiness will be our new home.

Captain’s helping hand

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 ”Come quick! We need to talk” Captain Alexandra nervously whispered to me and pulled me out of the room. “There is not much time.”

“What’s going on?”  I asked, confused about this whole situation. We entered small room, next to the command center, where we could talk in private. This was the room when we heard all those bad news, room where we could have a bit of intimacy, when you could not stop your tears from falling. This time I was about to hear something different.

“I tried my best to sabotage your mission” She started.” But I got caught by the Major and they removed me from training your Son. Once the briefing will be over, you will be informed by Major that Captain M aka Blind will take you over. She is very ambitious and will do all she can to shorten your Son’s training.”

 After hearing those words I was even more puzzled, as the last person I would expect to get some help from would be the captain. It would explain this strange feeling I had when we first met. When she was telling us about the test results and the fact that we are qualified, I sensed sadness in her eyes. Like there was a part of her sympathizing with us.

“Why did you do it? Why did you try to help us?” I was curious to know.

“Do you believe in coincidences?” She asked with much calmer voice.

“Not, really. In those discussions I am more on the destiny side.”

“Well, I am not really fan of those destiny stories, but when I saw, that your son was born on the same day as my child, and fact that you lived in the same apartment as me when I was a kid, but couple of floors below, it seemed very strange to me. I took it as a sign. A sign telling me “take this case and help them”. Everybody knows, that even though heaven is a place to be, flight should happen much later in your life. When you are old and lived a life, but not when you are young. Not when you just entered this world and did not really had a chance to taste it. Not when you are a gift to your parents, most precious thing they ever received, love of their life, and you are about to leave them. Fly off without even giving them a chance to enjoy time spent together. No child should be allowed to fly! That said, problem is different. With each year spent here on Earth it is getting harder and harder to get to heaven. You must put more effort to fly there and at the end there is no guarantee you will make it. This is why they list children, here is no doubt that the flight will be successful, hence reason why your son was picked. Coming back to your Son. Unfortunately I was not careful enough in sabotaging his flight and got caught. Due to that I am being moved to day care for some time to ensure I will not jeopardize it anymore.” She passed for a second and the only thing I could say was. “Thank you.”

“Good luck and I hope you will succeed in taking back your son.” We left the room as it got noisier on the corridor and we knew that captain’s round is coming.

Throughout the whole training there were many moments where I felt it would be easier for me to hit bull’s eye with closed eyes standing in the middle of the forest, rather than have all of those factors meet and succeed. But for some strange reason this is what happened. I always like to think that these are those small signs telling us that we are not alone in this battle. That someone is looking over us, making sure that at the end everything will be fine. The point is that I don’t know what His plans are and I am left with nothing else but trust.