Round Three – Is it really working?

 “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

 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

“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

“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

 ”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.

Trust no one

 In those kind of moment you learn what true friendship means. Very quickly we verified people. Those who we thought are close to us disappeared, and we cannot really even say why. Weather they thought this is contagious, and they can also be classified for that flight too, overwhelmed and did not know how to behave, or simply we did not fit to their image of perfect hedonistic life, where you keep close to yourself only those who makes your world look perfect. On the other hand people, who we never expected to get any empathy from would call us, write, suddenly appear in our life, and without even asking started to help. They knew, that they are far from understanding us, and I would never wish them too, but they fought back the thought of it, and were always with us when needed.  I am not saying that we were completely left out by our old friends, just that number of them shrank. Thanks to that experience we now know who we can really depend on.

 And there was a third group, other parents. People who shared your experience, suffering, and could really quickly find themselves in your shoes. Understand well what you are currently going thorough, your frustration, sorrow, crises, as this was also in their hearts. They might have already experienced what you are currently facing and moved to the next stage or you shared your tears with them as they were also just informed about qualification.

 We stayed in the room where there was at least one more cadet and alongside of him, his parent, in most cases it was his mother. Laying on cheap mattress or touristic bed, comforting him, and trying to lower his pain and suffering as much as she could. Rooms where tiny, which lead to the situations where there was no other way but to open your mouth and start to talk to each other. Especially that during those night where your cades could not sleep because of pain, and you often needed to change either his diapers or bed sheets, you could count on the other parents to look over your child.

 Spending sometimes days or weeks with the same parents created this strange connection. The bondage of common goal, do all in your power to get your kid off the training course. And you know that on the other side of the barricade are captains doing all to make sure your child will perform well. Of course there were cases when frustration was so high that created some tension between parents but those were very rare occasions. In general everybody tried to help each other as much as they could, knowing that someday it could be his turn to ask.

“Don’t trust anybody.” Mag started. “Look at each drug they are giving to your child, check the label, check the name and make sure they did not mix anything.” She lowered her voice a bit. “I already witnessed a case where they had two cadets with similar names and they massed up the drugs. Giving the wrong one to the wrong cadet. Luckily they quickly realized so no harm done but you can imagine what could have potentially happen.  I am not sure if this is done on purpose, like the other day they tried to force faster training, not fit for the cadets, hoping he will make the flight sooner than normally. I don’t think these are just strange coincidental mistakes.” Mag paused for a second. “But like I have said. Don’t trust anybody and double check everything.”

 We were already full of fear and this just enhanced it. I started to take picture of the drugs, check the names in the internet. I tried to see if this chemo will really improve his performance or on the contrary – rash the hole process and fly him to heaven sooner than initially said.

 Luckily we had also moments when we talk about other things, not related to the training, which gave us a bit of relief from that constant standby mode. Amelia was full of energy and watching her play was also uplifting. Szymon was also in much better state, which started to fill us with optimism. Maybe it doesn’t have to be like captains say. Maybe he will not make the cut.

Amelia – Little princes

 From early age I acted like a tiny old. I preferred spending time with older boys, feeling that I can learn more from them than from peers. When asked for my name I replied “Mr. P”, this put a smile on adult’s face, which I did not understand. One woman after hearing my name said. “You are right son, if you will not respect yourself, no one will. “I always felt that my soul is much older than my body, like it has much more experience. I also liked to hide my soul, not that I was a shamed of it, but I felt that it can get easily hurt. When I grew older my body started to age while my soul, on the other hand, was getting younger and younger. Little bit like Curious case of Benjamin Button. I had this strange sensation where your body feels like losing weight although bathroom scale showed opposite. Those were also times when children started to like me more and more, as if there was some kind of connection between us. Even nowadays I sometimes have those strange moment when, from out of nowhere, child approaches me and starts to talk to me or just smile. This is something that confuses people, but not me. For me these are those magical moments where I can teleport myself back to my childhood. Most people know that you cannot really hide your soul from a child. With just one look into your eyes they know who you are. Sense from a distance who is good or a bad person. This is the moment where I would like to introduce to you little girl called Amelia.

 “Let’s take this bed, closer to the window.” Mag said to her husband entering the room. She had confidence in her voice, which gave an impression that this is not the first time they are here. That their training is already in much more advance stage than ours. “Come Amelia, take off your clothes off and jump on the bed.” This was first time our eyes have met. It was unforgettable moment, where those beautiful blue eyes peeked into my soul. Very short moment, as she got quickly scared, but I could feel that there is something special about little Amelia. That even though she was a very young child, she suffer much, and her soul is much older than it looked.  Shortly after Mag’s husband, S, came to the room. I could see that Mag is well organized, taking only those things to the facility, that was really necessary. It did not took her much time to turn her little corner into some kind of imitation of home. A little asylum for Amelia to bring a bit of comfort and safeness into this rough and unpleasant place.It was not long when we introduced ourselves to each other and started talking about our kids and reason for beginning here.

“What so special about your son?” Mag asked.

“He has a tumor on the left adrenal gland. It produces large amount of dopamine” replayed M. “This gives him more than average dexterity as well as above average memory. They think those skill would come in handy in heaven. And what about you? What is Amelia’s uniqueness?”

“She has a little tumor in her head that makes her very intelligent and she can easily read people’s emotions. We tried to remove it at least once but it grows back, which also makes her so special.”

“How long you are training here?”

“It will be close to a year now” Mag replied and in her voice you could feel sadness. She tried to be optimistic regarding the possibility of sabotaging the flight but with each day passing by, and another unsuccessful try to remove the tumor from Amelia’s head, this light was slowly fading. S on the other hand was a fighter, even a small thought, that his plan of taking back Amelia from the Center and never coming back here, would not succeed was quickly removed from his head. He knew that key is positive attitude. Never allowing despair to take over the control. S was a person that would go to hell and back if needed, just to have clear conscience that he did all he could to save his child. This was also a beginning of a journey that we did not expect that might happen. Few days passed and we started to sympathize with each other. Share tear of joy when good news came and tear of sorrow when we heard that another try of getting our children of the flight list failed.

 I always wanted to have at least two kids, son which I could teach how to be brave and caring for others, and daughter, which I could gaze into her eyes and see love to the world. Those small eyes that without asking and ease could get to the bottom of my soul. Her vulnerability would open all locked doors in my heart. I could see that in Amelia’s look. She was gazing inside people’s souls with curiosity what is hidden behind those close doors. I can easily see why Mag and S loved her so much and will do everything what is in their power to stop her from flying to heaven. If I would have a daughter I call her Amelia.

Hans Zimmer Inception- Time … as there is always not enough of it.

Round one – Fear

 From the day you are born till the day you die, fear is one of your best companions. It befriends you, so when times gets tougher you can count on it. Fear will be first one to come with helping hand. And you can feel how that hand is grasping your heart, and no matter how much you try, it is not willing to let it go. And in those times, you can be sure, that from day one till the last day, it will not leave you even for a moment. It will stand next to you, to assist you from small things, like grimace of pain on your child’s face, to big, like near-death experience. It will stop you from rational thinking, will hold you down, and paralyze you, just to make sure you will not make a wrong move. To make sure you will not move at all.

“Hello, my name is Fear and I will be your captain on this flight”

 We started the first round of chemotherapy. Hearing all those stories about needle popping out from the reservoir and burning body tissue, chemo side effects, and that no one will guarantee anything, we allowed Fear to enter our minds, our hearts.  With each and every drop injected into Szymon’s body, we allowed it to insert images of him coming closer and closer to the flight. Any signs of pain were automatically associated with worse scenarios, those that hunts you throughout the whole training. And each sign of him getting better, was a huge relief to our hearts, silencing the fear for a second. Short second, as in those short moments we could feel that Fear just went outside to grasp some fresh air so it can come back stronger.

 After a while Szymon started to feel bad and vomit, this caused anxiety in us. We started to worry that this will lead to something serious. I had visions how chemo is ruining his body from inside. That he will stop eating soon, stop feeling well, lose weight. Luckily this was just a small episode during the injection and it stopped right after it was over. Nevertheless these are those small things, which are blown out of proportion, as they are new to you, and it is well known that fear goes well in pair with the unknown. There were already many reasons for fear to come and sit next to us, like the fact that he was grabbing his feet saying that it hurts, or the fact that bump on his head was not getting smaller, as you hope to be after few days. Fear just loved those worries as it could feed on them, grow and get stronger. We knew it will not be easy to chase it away. Due to one main worry fear will never be gone-will we manage to sabotage Szymon’s flight to heaven? And this worry is so enormous, it is giving fear enough food, that no matter what happens, it will survive. Will not go away for long, you just put it to sleep for a while. Fear sleeps while you have all those happy moment during the training. Those moment where you have your child back to play with him, spend time like you used to, give him whole you, knowing that life is short. Those quick moments, where you try to forget that your life will never be the same.

 This round of chemo was scheduled for 2 days and once it was over Szymon started to feel better. Our captain was saying that this is due to chemo, while we knew that he is finally going back to normal. Once they finished all the tests, where in most cases he needed to be put to sleep due to his young age, he finally had a bit of rest and we could see so awaited smile coming back on his face. He was loud again, full of energy, he was again the child that we knew so well. This helped us to chase away Fear, giving us small relief from it. It was that moment where we started our battle with fear, where Szymon’s condition was a key in gaining grounds. His good days were our moment of rest and bad days were a struggle not to let fear take full control of us.

 After few days passed we even managed to go outside the facility and spend some time on the playground. Now he was keener to walk and tests those slides, swings, than couple of days back, where he did not have much strength to do so. Now he did not look back at the stroller where previously he preferred it over walking. For a short while we could rest and gather our strength for next round.

“Thank you for choosing our flight, the temperature outside is 100 degrees Celsius and local time is midnight. I hope you will have a pleasant stay in hell”

If those corridors could talk

You see so much pain, tears, and suffering. You see hope in people hearts, that this is not the end, happiness, that they fear so much to show to others, as they don’t want to bring bad luck to their loved ones. So many quarrels, that captains are not helping them, why they are hurting their baby. Those long night talks, when you can release some stress by talking to each other, as during the day you try your best not to burst into tears.  You hear so much praying, begging, promising to God, that if he will not take what has the most value to them they will change, they will be a better person. You see those innocent smiles of kids running around, as this is now their home, their playground, their backyard, school yard, their life. Those kids, that when nobody is hurting them, they can still laugh, have fun, play with each other.  Those corridors, where without them most of the parents would be lost at the start, as this is the place where you could hear those whispers, those advises going from one parent to the other, on how to overcome certain problems. How to save their child, or at least lower their pain. If those corridors could talk, they would tell us unimaginable stories.

 It was at beginning of our first stage. Our captain was about to initiate first round of chemo. Proceeding this we needed to read couple pages long document stating all the positive side effect of the drug, where ironically losing hair, which most people see as a drama, is the least important one. Especially that you know that those hair will grow back, but hearing for example, once lost is will not return.  This was also first time where we were asked to make a decision, which will significantly affect out life. We were asked to choose which indwelling central venous catheters was to be inserted into Szymon’s body. There were two options, Broviac with line sticking out of Szymon’s body, or port, paced underneath his skin, and when needed needle is placed through the skin into the reservoir. Just hearing about it was already an image you would like to quickly get rid of your head, but we were to decide, which would be better for him, for us. Now when time passed I know that both options are having its pros and cons and would be fine for us, but at that time we needed to make quick decision. This was forced to us, as in day or two Szymon was schedule for short medical procedures when they would place whatever we decide inside his body.

 This is the time where you started to look for help, as you know the best advises come from people who already pass this stage, and needed to make same decision. In this case, would be from other parents. And what is the place for that? Corridors! Place, where you can ask a question to random parent and in most cases you will receive an answer. An answer, that for sure you would not get from any of the captains as they look at your cadets and in most cases think of what would be good for the mission, which not always has to be good for your child, or yourself.

 ”Don’t even think twice about it. Choose port. Most of the parents prefer it over Broviac.” Started one of the mothers.

 “They put pressure on you to choose Broviac and use all the tricks, even play on your emotions, but main reason for it is, that they are much cheaper, and they don’t want to spend more money on your child than necessary.” said the other one.

 “I have Broviac, and I am really satisfied by it. I know you need to take care more about but at least we don’t need to stick a needle inside each time we come here.” was the voice of third mother, which got quickly shut by the fourth one.

 “When you look at the western countries they place ports even on animals, but not here, here they want us to be like those in the in third world countries. “

 We knew, that you can never be sure what is right for your child. That, in both cases he will suffer pain, and you just try to minimize it. And wherever we looked i.e. internet, we never got the answer of what is the best solution. Therefore this was one of our first times where we also involved our intuition and just followed it. Listen to that gut feeling, or saying it properly, God’s feeling inside of us.  I know this seems trivial when you look from a distance, but at that time this was the question, the issue, that we needed to face.

 With doubt in our heart, if our pick is the best one, we went to our captain, and told her our decision of choosing port. She was not too happy about it, stating that if it was her child she would choose Broviac. She honored our decision and we did not came back to this discussion anymore. Slight relief on our side and one less problem to worry.

 Thank you silent corridors, you are my place where I cried, you are my place where I smiled, but for most, place where I could find help, which in some cases saved my child.

God’s Angel – Boldy

 “I will whisper to your ears so quietly, that only if you reach peace of mind and unity with your soul, you will hear me. I will show you signs through my Angles, people that you would never expect to be my messengers. And all of it, is to make sure your love is real and trust is deep, as if I would came with all mighty I would never knew the truth”

 At the beginning sadness and anger are two of your best friends. Sadness comes every time you look at your child, when you see him in pain, when you know how much is ahead of him and you cannot do anything about it, when you realize, that these could be your last memories, moments that you have with him. Anger comes…strange as it may sound, but it did not came to us. Instead of anger we felt peace, this silence that was giving us belief that everything is going to be alright. And when sadness were having its turn, we experienced His presence manifested through others.

 “Don’t worry. It will be alright. Trust me”. Those were his first words spoken to us. We were both standing in the small corridor and waiting for our turn to have CT and marrow biopsy. He was there with his mother, teen age boy, fully bold from chemo.  I could sense that he and his mother were nervous and he talking to everybody was a way to release some of this stress. But there was something positive in him. Something that give you this urge to stop for a second and just talk to him. Forget where you are and just spent some time on the conversation.

 “Look at me, I was to fly right away, sings all over the body. And what? Somebody screwed something…”

 “Behave.” His mother stopped him for second. She was not really angry at him knowing who is he and what he has been trough but tried to make sure he will not offend to much others with his loose mouth. “I am sorry for my boy. He has such a bad mouth.”

 “…and I am clean.” Boldy continues as he was would have something important for us to say. ”They don’t want me anymore. Doing now some more test to find out if this is truth. Therefore trust me. He will be fine.”

 They saw our sadness, fact that those were first days and all of those initial procedures were terrifying us. Fact that none of us was used to witnessing such a thing just brought tears to us that we could not stop from falling. Boldy with his mom came in exactly right moment and had enough courage to say that first word. I know for sure that spoken from somebody else’s mouth would not make much of a difference, but since it was one of the cadets it gave us, for the first time, a little light of hope. That this path is not headed one way and can be changed. I think this was a beginning of very important lesson, that being qualified it does not mean straight away flying to heaven. There is a chance to sabotage the whole process but you need to take actions, fight for your loved ones. Nobody said it is going to be easy but you know that if somebody lights this sparkle in your mind nothing will stop you for blowing it into enormous fire.

 Boldy was the heart of the premises, funny, loud and full of energy. I loved seeing him and Szymon and the others running around the corridors, making this place having more life and finally not that depressing. When he was leaving home on the pass suddenly the whole center was quiet again, lifeless, as I said above, depressing but also looking from different perspective simply boring. I know that you never wish anybody qualification but maybe more of kids like him and this would not be such a terrifying place.