What do you know in the beginning?
''His canny necklace counts a thousand beads.''
Dex Elsewhere will turn three years old in a month. The family was planning a big celebration, because Dex has had a lot to deal with in his young life. Scans, chemotherapy and radiation. His juggernaut necklace counts a thousand beads. Unfortunately, a big party is out of the question because of corona, but his father says: "We've been in tougher situations than this. Dex is doing well. That's the most important thing!'
Neuroblastoma, a tumor in the nervous system, is rare among very young children. Unfortunately, Dex did. 'It started when Dex was five months old. He cried non-stop and suffered from constipation. Then you go to the family doctor and hear that he needs to get used to being alone or that different food will help. Well meant of course, but Dex kept crying. We noticed that he slept better on his belly than on his back. That's where the tumor was, but we didn't know that at the time. Just like the bruises at his eye sockets, that was also a sign. We were told: he must have bumped into his eye with a toy. At the hospital in Enschede, all the specialists looked at Dex. They found nothing. Only when they had taken a biopsy were we called the same day. We had to come to Utrecht, the same day. Bring enough clothes, they said, also for yourselves. That's when I knew: this is wrong.
At the Princess Máxima Center for Pediatric Oncology, Dex underwent surgery that same weekend. A Hickmann line was also set up to administer medication, draw blood and administer chemo. 'Then suddenly you're in a totally different world. All those little kids with bald heads. But it's also a hopeful world. You see kids rolling around in bed having fun, tangled up in all those lines the chemo goes through. Don't care about those kids, they're playing. That's wonderful to see.
In October 2019, Dex was declared cured. A message that did not immediately sink in. 'It has all been so intense and you also see so many harrowing cases, children dying. But of course we are happy. Dex is a spunky little guy, crazy about being outside. We don't think he even got that much out of it either, except for some disadvantage physically, but that's not surprising; he's had nothing but junk for two-thirds of his life: chemo, radiation, antibiotics. What the side effects of the treatment are, of course, we don't know. This the future will tell, for now everything seems to be fine.'
'However, Dex still has a tube in his nose for tube feeding. He does eat independently, but he doesn't drink enough yet. That's why we still have contact with KinderThuisZorg. Those girls are really at home with us. From day one they have helped with setting up the feeding pump and changing the feeding bags. Sometimes the plaster came off or the tube got blocked, then we could call and they came immediately, even at night. All that has to be very hygienic, of course. Now I change those feeding bags with my eyes closed, but what do you know in the beginning?
Text: Nicolline van der Spek
