Rapid Coject – cisplatin [C], vincristine [O], carboplatin [J], etoposide [E], and cyclophosphamide [C] – code name we heard constantly for past 5 rounds. While the intention is to quickly attack the enemy, I sometimes wonder if it’s not just a lame joke, which somebody played on us. Hiding under complicated acronym the real meaning, which is nothing more than just – “You will get rapidly bold to impersonate, Lieutenant Theo Kojak. Our role model from the 80s TV series”. All delivered in eight short, 10 days, but exhausting rounds – A, B, C, B, A, B, C, B. At the beginning we had our fears, but also high hopes that it will get easier further down the line, while the truth is quite opposite.
Round five, back again to dose A. We knew more less what to expect, since we already went through all the stages and side effects of all those chemo injections. This help us to calm down a bit and slowly get used to our new home, new life. To things, which were terrifying at the beginning, now seen from a bit of a distance as they were becoming our daily routines.
“Hello Mrs. W, how was the night?” Mag wake up to a pleasant voice of the corporal. “Can I have last night fluid balance?”
Mag half-conscious picked up a notebook from the windowsill. It was 5:45 in the morning. “400ml drank and 200ml peed. And he wet the bed in the night.”
“Thank you” Corporal replied and left the room.
Mag closed her eyes again. Those were these few more minutes of sleep everybody tried to grasp to have a little more rest.
Balance of fluids
From day one, with first dose of chemo injected to your child’s body, you need to keep track of all the fluid that are going in and out. In our case, as Szymek was still a baby that was using diapers, we need to bring from home small kitchen weight and each time he drank anything or peed into the diaper, write down the amount in the notebook. Keep the books like a good accountant. Additionally, any vomiting and diarrhea, which happen often during the injections, were noted down. All to control Szymek’s kidneys and digestive system. Every 6 hours we have a visit from a corporal, who takes down our balance and later reports to our leading captain. In case of any anomalies, which sometimes happened to Szymek too, certain meds are implemented.
“Szymek just vomited again and I did not manage to catch all of it.” Mag welcomed me with words I always hated to hear. “Can you please bring new bed sheets?”
It was devastating, seeing his ghostly pale skin and lack of strength to keep his eyes open. Without saying much, I turned around and went to the small storage room located in the middle of the corridor for fresh bed sheets. Turned the key, left in the lock to allow parents pick fresh bed sheets once the Sergeants are done with their shifts, and looked for fresh covers. Pillow covers top shelf, children size, quilt and bed sheet in the middle laying right next to each other. There were days when children size was all out and I had to take adult size just to have clean one. Parents knew this room very well, I would say too well.
“Here, I will change it.” I said to Mag coming back to the room. “I will give you Szymek, so to make it quick”. I have picked him up from the bed and placed on Mag’s chest. She was sitting next to his bed on her camp-bed, exhausted to the limits one can take.
“I could not sleep at night, worried that while turning he will wrap the cord around him causing the needle to come out.” Mag read at the beginning of our training program, that it rarely happens causing chemo burns, which are very painful for a child. She tried to minimize Szymon’s suffering as much as possible therefore each time the injections were happening she was in the standby mode ensuring that in case something happens she will intervene immediately.
Those were times when I had to do best not to make any eye contact, especially with Szymek, so they will not see me crying. I bit my lips, to cause some pain in me, just to take my mind off it.
“I need to fall asleep for a while, can you please take care of him?” Mag asked when I was putting Szymek back to bed.
“Yes. Rest, I will keep quiet. “
„BREEEEAAAAKKFAAAST!!!!” Sergeant’s scream spread out thought the corridor walls informing everyone that breakfast awaits in the common kitchen for cadets to pick up.
Art of feeding
From early days, when we slowly started to introduce other foods into Szymon’s diet beside breast milk, we made sure what he eats is healthy. We knew how much food can have impact on your well-being. We were buying ecological vegetables and fruits, straight from the village, and try to avoid anything that had too much of preservatives. Water instead of sweet drinks. In general, tried to protect him as much as we could to ensure we support his healthy growth.
When we entered the 7th floor for the first time, and went to the dining area, we were genuinely shocked. We knew how important is to properly nourish your kinds during the training to give him all the necessary vitamins, so that he can fight back himself the cancer. We knew that low fat diets and no sugar is a key to sabotage the mission. Instead when you looked around most of the plates had French fries, hot dogs, sandwiches with Nutella, sweet yogurt and desert on it. All full of nasty preservatives.
“What ta hack is happening here?” Mag whispered to me. „Do they know how much they are harming those kids by giving them this type of food?”
“Maybe this is what they need to eat during the flight and they are trying to adopt them as early as they could?” I was also confused by what I was seeing.
Soon we realized it’s not their will but reality, which forces those parents to give their loved ones this kind of food. Seeing how dramatically cadets are losing weight, to be as light as possible for the flight, you don’t even think about healthy anymore. You just give them whatever they willing to put in their mouth, just to have something in, hoping he will digest at least part of it, before it will come back. Even Captains were telling parents. “Your child has high potential, soon he will finish the program and fly away. It would be barbaric to take away from him the pleasure of eating junk food, or with all the other suffering he takes forcing him to eat healthy.” And soon we began our battle too.
Coming back to the routine. When you enter the program, Sergeant, responsible for the nourishment, conducts a survey with you. It is to know if your child needs any special diet, is allergic to anything. She emphasizes the importance of proper feeding, giving you an impression that food here is top level. Soon you realize that this was just a good marketing.
Every morning, round 8 a.m. breakfast is distributed. Plates are nicely laid on the shelf right next to the entrance. Each containing 2-3 slices of bread and cheaply looking sausages, accompanied with small dice of butter. Honestly, I often thought prisoners get better meals then cadets in the facility. For sure tastier and much healthier. And biggest irony of it are candy bars as part of dessert, full of sugar, and given to trainees with cancer. So, when Sergeant called, for most parents it’s just a sign, reminder, that it is time to go to the kitchen and from plastic containers, their brought from home, pick up something eatable for their children. It is common practice for parents to bring their own food to the facility, prepared either by them or grandparents. Once you enter the common kitchen/dining room area right next to it there is a small room, full of those storage containers, where parents prepare these meals.
Once the meal is ready, sandwiches for the breakfast, something more exquisite for lunch, art of feeding begins. Almost all the cadets, during the training, suffer from lack of appetite. Chemo make the food taste like cardboard, plus constant nausea and vomiting is not really helping. Limited resources, you have in CSD, is not helping also to feed your kid properly. From time to time you can see a parent running around the whole facility, asking others if they have certain food, for which their child asked, knowing that if he will manage to get it, there is a chance his kid will eat it.
„Did he eat anything?” I asked Mag when she woke up after a while.
“I tried. No chance. You know, that we need to wait for the injections to finish and antiemetics to start to work.” Mag replied. “He asked for a soup couple of times, but when I came back after heating it up, he just turned his head and said no.”
We tried our best but as we were moving further into the program his appetite was diminishing, slightly coming back once the injections were over, but still far from what he could eat before the program.
Round 10 a.m. everyday there was a small Captains checkup round where cadets, or in case of small children, parents were asked how was the night and what is general cadet’s state. Twice a week there was a general round lead by Major, who was having an eye on all the cadets to ensure nothing is happening without her approval. After a while we just waited for it to be over as we finally could start the day. In case of any questions we just went afterwards to our leading captain.
“As we agreed, not matter what are the results you will be able to go home to celebrate properly you 2nd birthday.” Captain Blind welcomed us two days after the chemo injection was done.
“Blood results are stable and not showing any signs of Szymek being ready for the flight anytime soon, so we don’t need you here. Just remember, same as last time, to come each day here for Neupogen shot, we will try again to stimulate those cancer cells to growth faster. Side effects as you know, growth of leucocytes, but let’s hope this will not happen this time”. Relief came, as we knew home is where Szymek feels much better, starts to eat and to rally. For Szymek, as he was already feeling much better, this was a cue to eagerly start packing. “I’m going home!” he stated with confidence and passion in his voice.
“Yes, take care Szymek, and happy birthday!” Captain responded with a smile and left the room. Soon after, with Szymek’s adorable “Bye!” shouted to corporals siting in the central counter, we were heading back home.
Next day, when most people were starting their lunch, I packed my family into the car and drove to CSD for the shot. Szymek after few corners knew where he was going, and became gloomy.
“We are just going for a short while and coming back home.” Mag tried to cheer him up. “Will you choose a price afterwards?”
Each corporal, to easy up the suffering, had a box with small prizes. After each procedure, child could choose one to cheer him up. Szymek also liked that and after a while he was saying. “Prize! Prize!” There was no claim in his voice, more of reassurance, that since he took the shot without crying much, he can take the prize now.
We put analgesic ointment 15 minutes before on his port to ensure needle will no causes any pain. And head to the room where the corporal from daily center were doing all the procedures. Once the shot was done smile on Szymek’s face was back.
“It did not hurt! It did not hurt! Mommy, it’s over!” He was laughing through tears and I just couldn’t help it, I needed to bite my lips again. The pain was helping me withhold from crying. On the way back, he was full of joy, as we kept our promise, that it will just be a minute and we are going back home. Szymek is unbelievably peaceful through all time. I often cried seeing, what he needs to go though, and I knew well, that he shows me how the real man should take it. This two-year-old boy showed me, grown man, that you may have a bad moment, vomit, etc. but once that is over, smile should be back on your face. No reason to cry, no reason to feel blue. Life is beautiful, life is full of love and why should we not be happy in it.
Vomiting, dizziness, weakness and powerlessness. Counting all the fluid, ensuring meds are fine, ensuring needle will not pop out, changing the bed sheets, changing diapers, changing the wet and dirty clothes, heat the food, force to drink, force to eat and Neupogen shots for desert. Another test, another needle into his body, sedation, nerve racking waiting for the him to be back, waking up from it and smile is back on his face. This child is blessing from God. His happiness and love is the only reason why we are still alive…please let it last.
Czytam ze łzami w oczach… Tak właśnie było, właśnie tak.
Wiem jedno – mój syn zdołał mnie nauczyć więcej niż ja jego. To dzieci są miłością i mądrością a my możemy tylko je obserwować i się od nich uczyć.
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Dziękuję, że to wszystko nam opowiadasz.
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