Jonatan Jorna (16) died on November 25, 2020 from the effects of a brain tumor. He was the son of Rolf Jorna (51, international HR manager) and Jessica Schlötjes (49, IT team leader). Jonatan had a brother, Julius (18, student of technical administration in Delft).
Jessica: ‘On Tuesday night, I will never forget, I came home from work and saw that I had missed a call. I called back to an unknown number. It turned out to be the camp management of the sailing camp in Brielle where Jonatan had gone with his friends. Jonatan had become unwell and they had called an ambulance to take him to the hospital. In the Erasmus hospital we found Jonatan very confused. As if he had been drinking a lot or being stoned. Jonatan was heavily anti-drugs, so we said quite firmly that that was not plausible, whereupon the doctors suggested a CT scan. At 11pm, we were told by a team of four doctors that there was something in his head that didn’t belong. As big as a golf ball.
Three weeks before, we were with the whole family in the south of France because of my parents’ 50th wedding anniversary, Jonatan complained that he was not feeling well. He had a headache and he was cold. At first we thought it was sunstroke. When he was still groggy when he got home, we had his blood drawn, but nothing came out. Jonatan was a very healthy, sporty boy, he played hockey and boxing. He was also very social and smart. Not just because he was in high school, but he thought a lot and was curious. He was also a teenager, a bit grumpy and sometimes a bit crooked.
That night, the doctors at Erasmus sent Jonatan by ambulance to the Princess Máxima Center, the hospital for pediatric oncology in Utrecht. The next day he got an MRI which clearly showed that something was wrong; he needed urgent surgery. Jonatan was feeling quite well from the dexamethasone that had expelled the fluid from his brain. In a video for the grandparents, he said, “Don’t worry, everything will be fine.” The next day, too, Jonathan had bravado. When the neurosurgeon asked him if he was ready for surgery, he replied, “I was born ready† At 2:30 he went into the operating room and at 9:30 in the evening the neurosurgeon called that he was ready. He explained that they could have removed a lot, but not everything.
brain tumor
A week after he was released from the hospital, we were told it was a grade 3 brain tumor, which is the second worst category. The doctors were moderately positive because there were treatment options. The remainder that was left could perhaps be removed with radiation and medication. There are two questions that you ask a thousand times in the beginning. The first question is, ‘Why? How can such a healthy boy get this?’ You will never get an answer to that question. The other question is, ‘Is it life-threatening? Is he getting better?’ You will not get an answer to that either.
Jonatan had to be irradiated for seven weeks in Groningen, because there is a proton irradiation machine there. Coincidentally, I was just finishing an assignment, so I decided to temporarily stop working. We went to Groningen for seven weeks together, where we could stay in a house at the UMC. He had to be irradiated for half an hour every day, the rest of the time we did fun things and friends and family came over. It was a nice period, we had a holiday-like feeling. Jonathan was confident.
His chemo started in December, a heavy dose that made him very ill. He also got the flu over Christmas and didn’t recover after that. He got muscle tension complaints, could sleep less and less, he was clearly in the way. No one in the hospital knew what to do with it. Until one Friday afternoon in April he had a lumbar puncture to see if his brain pressure was good. The brain pressure turned out to be above 50, which is fatal. In addition, we were told that the chemo had not worked. He had to be operated on urgently the next day, on Saturday. After that, Jonatan was able to start with an experimental gene therapy. We kept hope.
nice conversation
An MRI in August showed that the tumor had grown despite the new medication. When the biopsy results came, it turned out that it was dividing even more aggressively than they thought. The time to be optimistic was slowly over. Jonatan then had a very nice conversation for the first time with his oncologist, Jasper van der Lugt. He asked, “If I die, will you help me?” He was 16 and mentally competent. Jonatan said he didn’t want to wait until the end and asked Jasper if he could count on him.
It was his dream to visit the Rolex factory in Switzerland, he was a terrible watch freak. Just before that, we had bought him a second-hand Rolex from 1970 in Amsterdam. Jonatan himself sent the CEO an email if he could come. Nobody gets in there except David Beckham and Roger Federer. But Jonatan managed it and at the end of September the four of us drove to Switzerland. It is a workshop where each Rolex is assembled by hand by people in white coats. For Jonatan, the trip was an absolute highlight. Then he resigned himself to the fact that it wasn’t going to get any better.
At the beginning of November, his oncologist said, following an MRI, that the tissue in his head had become one large tumor, which increased the risk of bleeding. If they didn’t operate, he ran the risk of dying that same week. The next morning, Jonatan said firmly, “I want to have one more operation to eliminate the risk of dying suddenly, and then I want euthanasia.” In fact, he bought time to maintain his own direction.
warm hand
On the day of the euthanasia, three weeks later, Jonatan handed his Rolex to his brother, with a warm hand. He wasn’t sad, rather impatient. It looked like Santa Claus when he was 6. “When is he coming, when is he coming?” The doctor only came at the end of the day, understandably, but the wait was very long. Jonatan was still making silly jokes. As he ate a pear, he said, “I’ll pear it later.” When his oncologist came, Jonatan was all set. He said rather wisely: ‘I don’t think I’m comfortable, because when I’m no longer alive, my legs will fall to the side.’ He turned on his side towards me as I was lying next to him on the bed. He said with his last bit of bravado, “Now I have the best view. Goodbye dear mama.’ He was dead within five minutes.
In the end I stopped working for the entire period from the call in question. Because I spent so much time with him, but also because he had completely lost his moody adolescent behavior from the moment he became ill, I had a beautiful and intensive time with him. But I also have to make do with it for a very long time.’