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.

Sense of guilt

 It hunts you from the day you heard that your child is qualified. It gets stronger at night and weaker during the day. It comes out from the shadow and whispers to your ear every time you look at your poor baby. “You could have done something better. You could have acted earlier. You could have been more inquisitive trying to think outside of the box, knowing that this sneeze was not just the flue but cancer.” The truth is you cannot fool your destiny. Sometimes you go for a medical check because of the bump on your head and it turns out to save your life but sometimes there are no signs until it is too late. Guilt knows that, but still wants your blood. In those moments logical thinking is the last friend you call. The last thing to think is “it is not your fault”. And that is why the sense of guilt will hunt you, like a demon,  to get what is precious for you. Very precious but you still are willing to give it away for the peace of your mind…your soul.

First week was the worst. At first days we got hit in the head by the news itself and by all of those medical procedures that we watched, and helped by holding our child down, as he was trying to escape.  But then there were those first nights. Not really giving us any rest but never racking, as we kept thinking what we could have done better to prevent this from happening.The first blame goes on yourself, then on your closest ones, then on captains, and at the end on anybody who saw your child but haven’t told you that he is so special. You start to look back in time and think that if you were more assertive in inquiring your suspicions you could have save him. Guilt targeted more M than me knowing that she is more vulnerable to its attacks. She was constantly fighting with the thought, that if she would just listen to her mother’s intuition telling her that there is something wrong with her son, he would have been diagnosed sooner, giving him much less chances to qualify.  You finally get a different perspective to those long, not stopping fevers that Szymon had in last few weeks, and that they were not caused by infections. That the fact that he had issues with walking was not coincidental. And nothing can stop guilt from attacking you, nothing could chase it away. Even the fact, that he was seen by couple of captains in last month that did not see anything worrying is not really calming you. The fact that he was examined by one of the best u-sound expert who saw no signs of tumor is not bringing you any peace of mind. Your guilt will tell you that for sure they were looking in the wrong places. That those people for sure were not qualified enough to spot how special he was. Those were the days where night were very long for us and did not bring and relief.

Week was coming to an end. Szymon was feeling a bit better, we were doing all the preps for the chemo but did not start it yet. He was still spending more time in bed than moving around. At home he was always all over the place, we couldn’t stop him. At hospital he had no energy to do anything. When looking at him we already saw only the worst scenarios, that he will not need a full training before the flight. That he is so well qualified, that it could be only days, maybe weeks and they will come to us and tell that they are quitting the training as he is ready to fly now. To see your child leaving you slowly is the worst you can get as a parent. A corporal once told me that when children are heading for the flight they become silent, acting like somebody turned them off, while adults make as much noise as possible just to let everybody know that this is the day when their child is flying to heaven.

This was also one of those days when I told to myself “No! It cannot end this way. I will not rest until I do everything I can to prevent him from flying. And if I have to go to heaven myself to knock on their doors or windows just to tell them that he is staying here and they need to change their planes, I will do it!” This was the day when I realized I cannot change the past, but I can change the future. So even if that day comes, even if he qualifies and flies to heaven I can watch him go with clear conscience because I did all I could to keep him here.

This was the day when I looked in the Guilt’s eyes, took out the knife and wounded it severely. Now when it is coming back from time to time just to remind its existence, it is too weak to hurt me. Looking just like a beaten up dog that came for patting. This was the day when I told myself I will fight and not give up as this who I am and no situation will change that!

Lucky number 7

 Center of Space Diagnostics, our training facility, is located slightly outside of the city center. Surrounded by forest on one side and small houses on the other. In front of the main entrance, you can see nice helipad, where from time to time special case cadets are being flown to, as there is a last minute vacancy on the shuttle and they need to run some quick checks to determine whether he can qualify for the flight to heaven. Next to the main entrance there is a big parking lot, filled with cars from early morning to the afternoon. When you enter the main entrance you can see people walking from place to place, parents lost and looking for the way, people working here, visiting, or just wandering as they are trying to forget that they need to be here. CSD has 11 floors, where dependable on the cadets profile,one is being examine if he or she has the right predispositions to be part of the flying crew. There are floors where you come for a day or two and they let you go, saying that you are not the right fit, or floors where you spend weeks, months or even years. The facility has many corridors, where even corporals who work here for couple of years, still get lost, a canteen and a small chapel. In short, all what you need and all that you would want from a place like this.

 It takes me more less half an hour drive from our home to the CSD. Taking a bit more time in the morning, when there is heavy traffic, and slightly less at night, where roads are empty. Once I arrive in the morning, I need to let one or two elevators go, before I will be able to squeeze myself in, this get really difficult when we are moving in or going for a short break home, as we also have bags and camp-bed with us. Luckily it’s getting less and less people at night, when I am leaving the CSD, which gives me a little breath of air, not to say fresh but at least I don’t need to stare at peoples’ eye pretending that I am fine. Nevertheless each time I enter the elevator in the morning, where visitors or other parents are also trying to push their way in and I press number seven on the dashboard, suddenly from those, who I can sense are staying longer, I start to get this look of sympathy. They know well what cadets are trained on that floor. I sometimes smile back at them and say sarcastically. ” Lucky number seven.”

  Our floor, similar to others, has two main corridors going parallel to each other. One third of the way, once you pass captains rooms, we have command center where all the corporals are siting. This is 4 feet desk, which most parents see, as first thing, when they come here with their child. This is the place where you get your key to the locker and they assign your child to the room he will be staying in. This is the place when you come running when something bad happens to your child, as often corporals are the first to help you and right after them, when situation in most cases is already under control, you can see your captain charging in.

 Behind the command center desk there are rooms going from right to left, where you can see from 3 to 4 cadets laying in their beds and alongside those beds, their parents, who day and night are looking after them. At the end of those corridors you have shared kitchen and day room. A place where you and your child have an imitation of normal life. Place where there are some toys to play with and from time to time comes small road theater to perform, so for a second they will forget what they are going through.

 I try to come early in the morning, right after the rush hours, to be as close to my family as possible, and leave late night. Mostly when I go back home, lights are already dimmed, and in most of the rooms cadets are already sleeping. I always hope that they are being in better place, where there is less pain and suffering and smile is back on their faces all the time. I like those moments of peace, as sometimes I can see that this horrible place is gaining some magic. Those corridors, so crowded and noisy during the day, at night start to breathe their own air. I like to leave at night as those are the moments when I sense presence of Angels walking on those corridors and making sure that this night will not be one of those night when somebody unexpectedly flies to heaven.

 Lucky number 7, who was that bastard, with such a sarcastic mind, to put those kind of kids on that floor.

Plan

 If you want to make God laugh, tell him your plans. In most cases when we planned holidays, night out or sometimes even small, at the last moment something went wrong. In times when we left things to run its own course and just swam with the current, slightly adjusting to our needs, it went smoothly. Luckily this rule was still applicable for us in our current situation.

 After week of tests, where some of them we would not wish to our enemies, as you really need to bite hard on your lips not to shade a tear in front of your 2 years old Son, we finally met with our leading Captain to discuss the plan.

 “Please sit down, as what I am about to say may be too overwhelming for you. Based on all conducted tests, we received results confirming the initial theory, that he is highly qualified for the flight to heaven. His current state, 12 cm tumor and metastases found in bone marrow, many bones, lymph nodes and chest, gives him high success rate of 70%. This gives us good chance, that after completing the whole training, you will be proud and happy parents whose first born child flew to heaven.” We sat in front of her, with Szymon laying half-conscious on the bed, hoping that she will stop in the middle and say that she came to apologize but she mixed up the papers and this is not the right cadet she is talking about. Reality was different. Reality was like a bubble that just burst telling you that your fun time, happy parenthood is over. This plan was solid, build for success, and we were about to hear all its details. “Due to that high score your Son achieved, he has been classified for a European space program which consist of 5 stages. After each of those 5 stages we will run more tests to determine if anything changed in his current performance and reassess his participation in the program.

First stage: Code name Rapid Cojec. In this stage, which lasts for three months, we will build proper muscles. Get him in shape by providing with 8 rounds of special drugs, chemo, which will strengthen him, bring back proper appetite, minimize any vomiting caused by motion sickness, so that at the end of this stage he will be much stronger, faster and in better shape than ever. As in all of the stages, there is a chance he will be already flying to heaven without the need of participating in the rest of the training, but this is not likely to happen yet. In the unluckily event, of him not qualifying for the flight, we will begin the second stage.

Second stage: Code name-Surgery. Main purpose of this training is to make sure he has proper body mass to fit the space suite. As there is a facility that specializes in that type of training and it is located south west of here you will need to travel. Further details will be given later on, as it is classified. What I can say at this point is that, we will be cutting out all of the unnecessary organs to make sure that at the end of this training his body weight is just right for the suit. Same as in previous stage there is a chance that he might be trained enough after this course to fly to heaven but still it is unlikely event.

Third stage: Code name Isolation. To adopt to conditions, that he will face during the flight, in this training course you will be locked out for almost 2 month, without the access to outside world, and during that time your Son’s bone marrow will be cleaned. We will be wiping the old one and inserting a new, better one. This will ensure that none of the currently existing viruses and bacteria, that are present in his body, will travel with him into space. There are very special conditions in which you will spend those two months in but same as with other stages details will be provided in later timing.

Forth stage: Code name-Radiation. Although this is the shortest stage, as it only last 3 weeks, it will consist of training for the radioactive environment your son will encounter in space. We will teach him how to operate in tough conditions, to ensure that he will not lose it course, in case of encountering high radioactive space waves on the way to heaven.

Fifth stage: Code name-Mutant. Last stage will be the longest, as in this stage, we will be inserting human and mouse antibodies to his organism to enhance his performance.

 I know there is much information to digest at once therefore I propose to stop for now. If you have any questions I am happy to address them.” When she finished explaining the plan to us, on the piece of paper where she  was drawing it, she created a nice pentagram with five stages at the end of each wing and Szymon right in the middle. We felt that there are things that she is not telling us. Nevertheless we did not had any choice but to trust her, that whatever she is planning is good for him.” As you may suspect due to high confidentiality all the details will be shared with you at the beginning of each stage. Uniqueness of your son forces us to initiate first stage as soon as possible therefore I will leave you for now to slowly digest the plan but will come back later in the day to start the training.”

 When I look back at this moment, fear was the only feeling I had in me. Fear, that I have not much time to love him. Not much time to play and laugh with him and that in all there is nothing good ahead of us. Luckily as always even solid plans did not hold when you showed them to God.

New home new life

 When you think of new home in most cases you associate this with positive emotions. Change that you anticipated, as either dream came true or at least this is a relief from current worries. You think of how you will decorate it. What paint to put on the walls and how your life will be better in your new house. It’s not very often when you think of new place to live you fight off the idea as it would be just a beginning of nightmare that you wish quickly to wake up from…

 “My name is Captain Alexandra, I will be leading you through the training program. In the coming days we will be conducting some more tests, some will be easy and some painful nevertheless main purpose of those tests are to establish the best training course for your Son. In case of any questions feel free to ask me as I am available for you all time. I will leave you for now to get use to this idea that from now on this will be your new home. Please do not expect to leave our premises soon as your Son is very special and we need to monitor closely his progress.”  She was young and trying to keep her face serious but deep insight her eyes for some strange reason you could feel compassion.  A feeling you will not see often as people are more to avoid suffering in their life. And keep distant from situations that will remind them that life is not always full of smiles. A feeling that you will more often see in the eyes of those who you would never expected to see and not in those who you though are close to you. Once she left we looked at each other still not fully believed that this is happening to us. On one hand we felt that this is something very dramatic, horrible that we are facing but on the other our mind was telling us not to worry, this will be quickly over and you will be back to your old, boring lives. This strange phenomena was long with us and till this day from time to time we still hope that it is just a bad dream and we will wake up soon from it.

 After couple of minutes one of the corporals walked into our room and explained all the logistics. That we need to rent or buy a bed on which one of the parents will be sleeping at night. Where is shared kitchen, bathroom and shower, to which each night there is a queue of mothers waiting for her turn to have her 10 minutes of peace. Those ten minutes where you can cry, scream, do all you need to do in order to release some of that sadness from you. Sadness you don’t want your child to see as he is suffering enough and you don’t want to add more to him. When to expect food for your children, food that you would not give to your dog as it is too awful to eat. And all the other things you need to know in order to survive.

 Our initial impression was that those corporals treat you like an intruder, person not really welcomed, who is just disturbing them in their daily work. Impression that was one of most misleading ones. Later we saw that those serving marines were the ones that help us on the way. Mostly correcting some decisions made by higher ranked soldiers and providing you with energy that is essential in the battle against the successful finish of the program. But mostly helped in keeping your child still in your arms and not allowing to deport to heaven earlier than planned.

 The irony of your new home is that place that you hated at the beginning you start to miss when you change the locations as this is your rock, your sanctuary. Place, which after couple of months, you know so well that you started to feel safe there and would not like to leave to any other.

Night that I wish never happened

 You always want your kid to be special. To stand out from the crowd. Be smarter than his peers, faster, stronger or if this would not be a case you at least slightly above the average. You hope that someday he will became someone people will look up to.  I am not saying to be a president, but more somebody you will be proud of and not pretend that you don’t know what he is up to when asked by your friends or family.

 You hope he will be special in the good way, have a huge heart that helps those who are in need. And on the path of his maturity you are trying to push away all the bad thought of things that can potentially happen to him. As all you wish for him to have a good, long lasting life. Deep inside you know that you can not avoid suffering and pain in your life but try to minimize it so that it will not be present so much in his daily life.

 It was month before all started, when we began to worry. Constant fevers, that were gone for few days and back again, make us go to different doctors trying to find a reason behind them. We hoped that it is nothing more than just a flu, but the fact that they were coming back caused that somewhere in our minds a warning light started to glow, that maybe we are facing something serious. And it was on 17th of July when we heard that our son is special, very special in the way that you never wish hear.

 “Congratulation! Your Son has been classified to the newly lunched space program where at the end of his training he will have a unique privilege of being part of the group of those few individuals who will fly to heaven. Thanks to his 4, 7 inches (12 cm) tumor on his adrenal gland and numerous metastases found in bone marrow, many bones, lymph nodes and chest there is a high chance he will successfully pass all the stages of training finishing with the flight.”

 She looked at us as we should be proud of having such a special boy, but in our mind we had only one thought. It was screaming so loud that it would have wake the whole facility up if outspoken. “WHY!!!!!!!!”

 She left us for the night, a night that will begin our long journey of them, Captains, trying to help my son to fly to heaven and us doing all we can to spot it from happening. This is a story of our son, Szymon, and his battle with cancer.