From Nils to ... SuperNils
The life story of Nils
I want to mean something to fellow sufferers
Nils Scheltjens (10/01/1992-11/10/2016)
Nils was a sprightly and sporty young man, who had a positive outlook on life. He always had a listening ear for others, he helped them where he could, he could comfort, he was there when needed. In short, Nils was a wonderful boy, son, brother, brother-in-law, partner, grandson, nephew and friend.
Sadly, his young life changed tremendously in March 2013. He became seriously ill ... acute leukaemia. After a courageous fight of almost 4 years, he lost the battle on 11 October 2016. Far too young ...
Now he lives on in non-profit organisation SuperNils, the organisation that turns his ideas into reality.
Thanks for everything boy ...
Curious about Nils' story? Then scroll further down this page ...
Hello,
I am Nils. I was born on 10 January 1992, the second son of my proud parents, Robert and Leona. I have another older brother, Jorn.
I had a blissful childhood! Together with my brother, I could play in the garden at home in Nieuwmoer. Or romp on the square, together with our friends from the football team. Fights were rare. I built up a huge circle of friends and with brother Jorn I always formed a close-knit team. We were born for each other, two hands in one.
At school, things did not always go smoothly, but I always put in a lot of effort to still get a reasonable result so that I did not have to disappoint my parents. That's how I struggled through primary and secondary school. And how proud I was when I graduated from PITO in Stabroek. Mum and dad were also shining with pride. I could go to work, earn some money, my diploma was in!
The night of the proclamation, however, I confided in my dad. I wanted to study further, ... had found something in a brochure of the Stedelijk Onderwijs in Antwerp, where my dad also works. I got the chance to take a course as an animator-fitness supervisor. A unique training with an internship of several months in Menorca. What a dream! I was able to do sports, I performed in some musicals, I accompanied children and adults in fun activities, etc. Moreover, I got to know many cool people, Italians, Spaniards, English, ...
I got friends all over the world. And when the training and internships were over, I got an offer from Melia hotels, to start in Menorca. I accepted the offer for the entire summer holidays and part of September. Via Skype, I kept in touch with the home front. This was especially necessary for dad. He had some difficulties with my going abroad. We always had a very good relationship.
Dad was therefore delighted when I told him I was coming back to Belgium to continue my studies: physical education teacher. We knew it was going to be very difficult, but my parents gave me the chance and I went for it myself for the full 100%.
In Menorca, they were also behind my decision and if things still went wrong, I could start right back with them as an animator-supervisor. So no risks!
I studied hard, hours on end, sometimes late into the night. That theory wasn't so simple after all! The practical subjects went smoothly, though. I scored well in the sports subjects. I trained every day (swimming, running, fitness). Because yes, I am Nils and if I want to achieve something, I go for it. I am a fighter, a fighter. I don't give up easily!
I did feel that my body was quietly running out of steam. I was tired, very tired. I regularly fell asleep on the bus in the middle of the day. Once, the driver woke me up at the final stop ... in Essen. Fortunately, Mum was able to pick me up there. But I kept going, I wanted to achieve my goal, I didn't want to disappoint my parents and get the diploma. If you get a chance, take it!
During my exam to obtain the high rescuer's certificate (very tough tests, by the way!), I fainted several times. But again, I kept going. Just eat a biscuit and take in some sugars ... and then I was fine. And yes, I got the certificate. How proud I was.
Then, after the spring break, the results of the first theoretical exams came in. What a disappointment! A fail across the board, despite my efforts, despite my night work. The practice was brilliant, but that alone won't get you your diploma, of course. I realised that too. I stepped to mum and dad with a small heart. I wanted to quit this training and return to Menorca. That's where the job of a lifetime was, that's where I could handle, that's where I felt fine, that's where I wanted to continue building my life.
Dad was initially shocked by my proposal, but both he and mum, went along with my story. That training as a physical education teacher was too tough, that was clear enough. "You shouldn't make yourself sick," Dad still said, though with tears in his eyes. After all, he was going to see me less, he would miss his youngest sprout's hugs, jokes, teasing, good humour and sweet smile immensely. But I had to become happy and I could only do that by following that dream, the dream in faraway Menorca. How happy I was at this reaction. How much I loved my mum and dad. And of course we would keep in touch, I wasn't going away from the world lol.
Mum did set one condition ... I had to go to the doctor for a blood test first. After all, I was still very tired. Mum was uneasy about it, but she didn't say so right away, so as not to scare the other family members. "A vitamin cure can do wonders," she continued.
I did not feel much like it, but obviously did not go against mum's request. So I headed for our GP. It was then Thursday, 14 March 2013. After the prick and some chatting with our doctor about my moving plans, I took the bus back home. First I got a nice coffee cake from the bakery on the corner ... never thought this would be my last coffee cake ...
In the evening, there was a great football match. Mum sat in front of the tube with me and my brother Jorn. Dad was working on the computer.
Around 11pm, he closed his PC and went to bed. The following day, a tough meeting was scheduled.
However, his sleep did not last long. Indeed, a few minutes later, the phone rang. Mum flew straight out of the sofa. Who was calling so late? Dad walked out of the bedroom. What was it? Was something wrong with mum or dad (after all, they are almost 90)?
Myself and our Jorn stayed to watch the exciting football match first. We didn't notice that Mum was listening very depressed ... Dad almost went mad with fright. There was something, but mum couldn't react ... After a short conversation, she put the phone down ... The tears in her eyes ...
"It's not good with our Nils ... the blood levels are bad ... we have to come to the doctor now ... and then Nils has to go to the hospital right away ... they think of ... leukaemia ... blood cancer". The word was out. Dad almost went mad, Mum started to act. Jorn didn't know for a while, and I ... I went to my room to pack some clothes. Cancer ... Leukaemia ... what did that mean? Was I going to die? Would I never be able to go to Menorca again? Would I no longer stay in this fine family? Would I no longer see my friends? Would I see my little room again? ... All sorts of things flashed through my mind!
A few minutes later, the whole family was in the car, on their way to the doctor. I looked behind me once more ... at our beautiful little house, at the window of my room ... Was this the last time? Could you still be cured of leukaemia? Would I still return? It became a silent ride all the way to Kalmthout. The doctor confirmed the fears ... leukaemia, cancer ... but how could that be? I was a healthy, athletic 21-year-old boy. I didn't smoke, I didn't drink, I never used drugs, mum cooked delicious and fresh food every day. So why then? The doctor did reassure me somewhat ... leukaemia is treatable. Many young people cure from it. I am going to win this fight! Of that I was convinced. I didn't want to die yet. It was still too early, much too early, to leave the world.
I did have to go to a university hospital. Ghent would be the best hospital for treating leukaemia. My parents did not hesitate for a second. We left immediately for Ghent, the same night. Mum drove, dad was in no condition. He was sick with fright, he didn't want to lose me. It became a hellish drive of almost 100 kilometres, a drive that my parents , my brother and I would undertake almost daily for years.
Ghent ... the giant campus of the UZ ... a city in itself, but a dark, unsociable and creepy place at night. Especially if you don't know your way around. Inside along the emergency room, immediately new blood tests and a few moments later the final verdict ... acute leukaemia! I had to stay right away. I ended up on the 9the floor of Ghent University Hospital, a floor that, unfortunately, became my second home for almost four years. The reception was great, though. Sweet nurses, who kindly looked after both me and my family. However, comfort was not enough ... I only wanted one thing, I wanted to be cured and as soon as possible.
The first few days were very tough. I was worried, there was no clarity yet, was there any chance of a complete cure, how long was it all going to take, ...? I was given medication and later chemotherapy. And I fought the disease, I fought like a lion to overcome. The disease would not get me down!
Dad and mum came to visit every day. For hours they sat beside my bed, we watched television, we chatted about the future, we enjoyed each other's presence. The doctors and nurses looked after me like a king. I became the darling of "the ninth" simply because I never complained and treated everyone with great respect. Even when the treatment was a bit off and painful, I remained good-humoured and friendly. I then reassured the doctor and cheered everyone around me back up. I enjoyed making others happy, helping, supporting, reassuring ... even if I myself was scared and worried about what was to come. I often talked to the doctors and nurses about the future, but also about ideas I had to make the lives of sick children (because I often saw them in hospital) more pleasant.
My fighting spirit yielded great results again! After several weeks, months, things were moving in the right direction. The disease seemed overcome. I was allowed to go home, but returned weekly to the UZ for check-ups. Each time with fear of a negative result. But things were going well. The blood levels were still fluctuating, but I would be fine. I was as good as healed! Still, I remained cautious, closing myself off from the outside world. Only my parents, brother and sister-in-law I wanted to see. I avoided others because I was afraid of getting sick again. My social life was at a low ebb.
And so it became March 2015.
Two years after the first news of my illness. I headed to Ghent again with mum for yet another routine check-up. Dad was at work in Antwerp. After the blood test, mum and I sat in the waiting room ... as always ... waiting ... full of tension ... And then the doctor came in. She looked very worried ... I saw immediately that something was wrong. I knew this doctor very well, I had an incredible bond with her. She had tears in her eyes! This was not good ... the disease was back ... relapse!
I called Dad with the sad news. He immediately came to Ghent too, together with brother Jorn. What a blow. The whole family was in the doldrums. This is really not possible, this simply cannot be! However, I quickly crawled back out of the pit. I had already overcome the disease once. So why not the second time? That should work too.
The doctors opted for a completely different treatment this time. Immunotherapy, then still in the research phase in America. The treatment would exhaust my body less, which would keep me stronger and make it easier to fight the disease. I also had to stay stronger because they wanted to proceed with stem cell transplantation. Through a healthy donor, the disease would disappear completely and I would be able to step back into life healthy and well.
But first, I still had to go through the transplant process. A very tough process that would completely exhaust my body. I would go through a deep valley. But I would do anything to be healthy again! So I went for it again, full of courage!
At the end of June 2015, the time had come. A donor had been found. Dad came to Ghent from Zeeland, where he was training, to assist me. He sat next to my bed as the stem cells quietly entered. A doctor and two nurses kept a close eye on everything. After all, transplantation is not a risk-free process. I knew that, mum and dad didn't. Thankfully, that way dad was calm and not too scared. I myself was scared though, very scared. If my body reacted the wrong way, I could die. But I didn't want that! I only wanted to heal. Then I joked and sneered at the doctor, the nurses and Dad. Just do it, don't look scared, be strong!
The transplant process went off without a hitch, thankfully. The following days, weeks, months went according to plan ... I went through a deep valley, a very deep valley. I was tired, could hardly get out of bed, was not hungry, had headaches ... But I fought back, I wanted little or no help! I still washed myself, at the sink. I had to sit on a chair, I could no longer stand. But I remained brave and strong. And that's how I got through this struggle! Slowly I brightened up, regained some colour and strength and could walk in the corridor again. I heard from the doctors that the disease was gone and I could work on my recovery again.
Mum and dad rented a flat by the sea, so I could recuperate quietly there. Some walking along the dyke, some enjoying the healthy air. I started making plans again. Maybe back to Spain in a few years after all? I was still welcome in Menorca, with my friends there. Or maybe just stay here and build something? I would see. Full recovery and rehabilitation first, then the next step.
Meanwhile, I kept going with mum (and sometimes with dad, especially during school holidays) to weekly check-ups at UZ Gent. Examinations over and over again: blood tests, bone punctures, lumbar punctures. Not fun and often painful, but I underwent it without whining. It was for my health lol.
The doctors remained a bit worried anyway. My blood levels kept fluctuating a lot, recovering too slowly for their liking. So I was given regular blood and/or platelets. And then I could get on with it for a while. But the disease was gone, we drew on that. That was the main thing for us.
During the Christmas holidays, in December 2015, we moved to our flat by the sea with our family. We went there to celebrate New Year and watch the fireworks (from behind the glass, mind you). It got very cosy and as I stood like this at the window watching and enjoying, I grabbed mum and dad tightly for the first time in years. That hug did both me and them so much good! This was the most beautiful New Year of all time. Dad said it was the best gift he could think of. He had to have nothing else! Blessed! Tears rolled down our cheeks, tears of happiness ...
And so it went on, week after week, month after month. At home, we began to live more and more normally. Someone came to visit us once in a while, we laughed more, we enjoyed every second. Our little family was complete again.
In June 2016, Wendy, one of my nieces, got married. After long hesitation, I decided to go to the party with mum and dad. It turned out to be a giant party! The whole family was there, I talked to everyone all evening, about the past, but especially about the future. I was enjoying myself and mum and dad were watching from a distance, with tears in their eyes. Tears of happiness. Our lives could not be ruined now!
A few weeks later, dad, mum and myself headed back to the sea. Here we were going to enjoy a few weeks of sunshine and healthy air. They were going to be fantastic weeks! I still had to go to Ghent for a check-up, but it was not far from Blankenberge.
While strolling along the harbour, Dad and I pulled up to a shop where they sell jet skis. My dream! After visiting and looking at some brochures and websites, dad and I headed to a dealer in Maldegem the following day. I saw a beauty there. Dad immediately started negotiating and I was able to get a good price. Dad allowed me to take an option on the machine, because ... the next day I had to go for a check-up in Ghent. If the doctor then gave the green light, I could book the jet ski. No sooner said than done! In the car I immediately phoned brother Jorn. I was so proud, I was gloating in the car. My summer holiday 2016 couldn't go wrong! I could make my big dream come true. Dad supported me all the way. He too was proud of me.
The day after, we went to Ghent. I was comfortable, feeling good. Hopefully the doctor gave the green light to buy my beauty machine! Blood sampling, waiting and then at the doctor's ...
How strange she was acting. "The disease was not back", she thought, "but the blood values were not so good". Some additional tests and on Friday at 4pm we got to call for the results. And as for my big dream? I was allowed to put those away for now anyway, it was too early for that now. Dad was heartbroken. "What a blow already for our youngest," he said. But I took it well. "Come on dad, then it's for next year lol. Maybe there will be even snappier machines for sale then! Everything will be fine. I feel fine, those blood values, they'll be fine." We drove back to Blankenberge ...
Dad was uncomfortable the days after. He was scared, worried. I consoled him by saying, "It will be all right, poppa!". I kept laughing and teasing, Mum kept looking positive along with me. I was at ease.
Until that Friday ... We all sat together in the living room, still with a frightened heart, waiting for it to be 4 pm. Then I could call the doctor ... At about 3.30pm, however, my phone rang. The doctor! I picked up and went straight to my room. Dad and mum knew immediately that something wasn't right. Why was the doctor calling himself? Mum came to see me in my little room, where I was sitting on the bed crying ... the illness was back! I was sick for the third time! We had to come to Ghent right away! That didn't sound good. We were devastated!
It became a hellish drive to Ghent. Due to an accident, all the roads were full, there was no way through. Nevertheless, dad managed to arrive in Ghent just in time. Jorn and sister-in-law Renée were already there. We had to wait in the waiting room at the 9the floor. Silent ... scared ... worried ... sad!
Two doctors then delivered the bad news. For a third time cancer ... that's never good. My body was very weakened. This could be fatal. I didn't know what I was hearing. Mum was crying softly, dad was sobbing, brother and Renée had tears in their eyes and I ... I looked ahead confused. Was this the end? I didn't want this! I didn't want to die! I became angry, I cried out ...
The doctors advised us to go home and invite the family over the weekend ... Saying goodbye? No !!!!!!! I don't want to! I'm going to fight, I'm going to overcome ... also this third time!
Still, we invited the family, Saturday and Sunday. But it didn't become a farewell party, it became a nice get-together, it became fun days, it became the start of a new beginning! On Monday I went back to the UZ, after first visiting Grandma and Grandpa. "It will be fine", I said, "you must not be afraid!".
In Ghent, I was met on "my" ninth floor. I was given a room on the side of the Buffaloes' stadium. I had seen that completely built up during my illness. Treatment was started immediately and ... after just a few weeks, I had gotten the disease small! Cancer gone and ready for rehabilitation and recovery!
Meanwhile, I had started thinking more and more about actions to support cancer patients. I shared these ideas with doctors and nursing staff. I wanted to mean something to others, my fight had to be an example for people who also had to fight cancer!!!
During September, I met Chelsea. She made my life complete, she made me so happy and proud. It was also great for mum and dad to see us happy and joyful. We had left again ... we thought anyway ...
However, during an examination in October 2016, I was found to have an infection. I had to stay in hospital for treatment with antibiotics. Would be fine! On Tuesday, however, a small black spot was detected on my hand ... a fungal infection apparently. On Wednesday, I called mum, dad, Jorn, Renée and Chelsea with the following message ... "The doctors told me I have a fungal infection, but a rare one. The chances of survival are only 10 %". I sobbed it out, I was so scared, I didn't want to die. Our little family rushed to Ghent: dad, mum, Jorn and Renée and Chelsea. All stood by my bedside.
The doctors told me they were going to cut away the fungus from my hand (by now the spot was as big as a 2-euro piece). I was convinced that this too was going to be fine. I didn't want the others to be scared and worried. However, when I saw Dad crying, I also started sobbing. I realised that Daddy was afraid of losing me, but I myself was afraid too, afraid of dying. I was not ready for this!
Late at night, they still came to get me to cut away the fungus spot. A painful event. At midnight, I called home to reassure mum and dad. The fungus was gone, we could sleep easy.
The next day, however, I could hardly talk. I also found it harder to recognise people, not even my own family. It would be from the anaesthesia and medication, I thought. However, things went downhill more and more. I could no longer talk ... I slept almost all day. I could still hear and feel papa, mama, Jorn, Renée and Chelsea staying with me all day. They held my hand and said sweet words to me. They told me how much they loved me. I loved them too, but I didn't get to say it anymore. I felt the hope in everyone, the hope that a miracle would still happen and that I would open my eyes.
On Tuesday, 11 October 2016, at 4am, I could no longer. I then had to give up the fight, the fight against that terrible leukaemia. I'm sure this caused a lot of grief for everyone. I didn't want to. I did my best, I really did. But the disease was too strong. I'm glad my family was with me when I fell asleep for good. Being surrounded by all those you love, what more could you want ...
I love you ... Big kisses ... Nils.
At the funeral, a week later, about 600 people came to pay their last respects to our superhero. What a joy it was to see how many people loved Nils, how many people looked up to our boy. At that moment, we also decided to give something back to society. We have no choice but to realise the ideas of our Nils. We are also happy that UZ Gent, in the name of Professor Tessa Kerre, wants to support and develop these actions.
And so the non-profit organisation "Supernils" was born. In this way, we let Nils live on and we can give others a helping hand.
