This week, on 10 June, it was exactly one year ago. One year ago that Lennard complained of abdominal pain. Abdominal pain that was so bad that he was screaming, and his mum Marleen took Lennard to the GP. That the GP did not like what he saw, and he sent Lennard to the hospital. Where one day later (fortunately, very fast!) the doctors discovered a large tumour in Lennard’s abdomen. Another day later, Lennard and his parents were taken to the AMC, to the children’s oncology ward in the Emma Children’s Hospital in Amsterdam. A whole new world you never knew about, until you end up there. Where the word neuroblastoma was mentioned. Which we googled, and then quickly stopped, because what we read then was unbearable. Not that we did not believe it, it was true, the doctors had done enough tests and they were very skilled. We could just not register that truth, we could not accept it.
The past year has been a roller coaster. A roller coaster with examinations, vaccinations, surgeries, chemotherapy, scans, IV poles that beep incessantly… Driving back and forth to the AMC, from Groningen, Enschede, Almelo, Heemstede, Rotterdam, everywhere … and then even moving to the US. A year full of pain, sorrow, turmoil, but still hope … Hope when Lennard is declared all clear as a result of all these operations … Hope when so many people want to help, so many people want to contribute something, hope when all the fundraising events for Lennard4life went so well. Every like on Facebook is a pat on the back, each message is an encouraging hug … It’s so great to see that you can rely on people for support when you need it the most.
And a year of consciously enjoying the good times, however short they are. Lennard enjoying a plate of Chinese food, his favourite. Lennard running down the ward hallway to go to school, to mister Remi. When even Queen Maxima understandingly nods when she hears Lennard’s story. All the cards, balloons and other gifts that are sent. Judith crooning with delight when she sees Lennard and gets to play with him in hospital.
And now Lennard is in the US, in a suburb of Philadelphia. At time of writing Lennard just got home from his fourth treatment course. The fourth course is the toughest of all, and Lennard was quite weak still when he started it. The C-diff infection was still bothering him. Lennard has trouble eating, he can hardly walk, has trouble keeping his food down, and is frequently in pain. But it seems that he came through this last treatment quite well… we hope that he will recover reasonably quickly.
Fortunately, there are many family members who visit to help to keep the house in order and to take care of Judith. That way Karst Jan and Marleen can focus on Lennard, and sometimes, just for a moment, they can have half an hour to themselves. Read a book or play a game, or just drive, nowhere in particular, just to get out. And very occasionally, what luxury, the two of them even get to go out for a quick dinner together. That too is so very necessary.
These times in the US are very difficult, with a lot of negative energy. This negative energy is affecting the children; they pick up everything. Adults can express their fears by talking about them, putting the fears away, moving on. Children cannot. They express their frustration and sorrow through crying, anxiety, fear of abandonment and panic attacks. Fortunately, they are kids, and half an hour later they are smiling again. Judith is happy when she can play with her pink Mickey car and the aircraft that she can ride around in. Blowing bubbles. Sliding down the slide. Lennard likes to play on the Wii. Watching movies on Netflix. And he loves playing with his action heroes. And with the dinosaurs. And with his Spiderman. They all have super strength.
You too Lennard. You too have super strength. And you’re a superhero.
Hold on. Our thoughts are with all of you.