Vasylko's lethal cage

A month ago, Vasya Kozmuliak from Mykhalche village in the Chernivtsi Oblast turned 11. Last summer, doctors found in him myeloid leukemia, and a few months later additionally diagnosed the boy with ‘early bone marrow relapse’. Bright Vasya, smart Vasya, handsome Vasya is dying. The disease will devour the child in a matter of months, if… If he won’t be transplanted bone marrow from unrelated donor. If we won’t find 110 thousand euros for the surgery in a month. If we won’t find on time a donor platelet concentrate of the rare group III.

But Vasya has thought everything out well. He left his village, the classmate he’s in love with, his pet dog Bars and math lessons and came to Kyiv to fight. To live through, in a cramped and stuffy ward, and make it to Italy where, unlike in Ukraine, he can have a bone marrow transplantation surgery he needs.

- ‘Look, why do you just keep telling me about your house? Why don’t you make a picture of it?’ I said, feeling exhausted by the boy’s stories and honestly trying to imagine his idea.

He draws a picture. Moves his, still very childish, pale hand over the paper, drawing a house of his dream. Vasya wants to build three storeys on top of the arbor in his backyard and create ‘Vasya’s kingdom’. He doesn’t know how to do it yet, but has already charged his grandpa with the task (Vasya’s parents are divorced). He tells me how many storeys his house will have, how he will climb there up the ladder and won’t let adults in. I listen to the boy and at the same time think: how thin and transparent his fingers are. How fragile are his vessels and veins where the blood, so useless for his life, flows.

- ‘There, I will dine and receive guests, and on the second floor I’ll have a computer room. I’ll do my homework there. Are you listening?’ Vasya asks me distrustfully.

Of course, I’m listening. Vasya wears very comfortable grey sweater. It protects the child’s fragile body. Vasya likes elbowing his mom during conversation, as if saying ‘she’s one of us’. And the mom elbows him back. They behave like a brother and sister: pinching each other, teasing and making fun. I half-join the game, being afraid of destroying this child by just one touch, let alone elbowing him. Vasya’s disease was discovered only because of the horrible hematomas and bruises which began appearing on his body. That’s why I just gently touched Vasya’s sweater and constantly smile to him through the mask. You see me smiling, Vasya, don’t you?

- ‘On the third floor I’ll have gym where I’ll do exercises.’
- ‘What? Exercises? You don’t like sports, so what do you need exercises for?’
- ‘For Marina. She’ll like it’, Vasya replies with serious face.
- ‘And who’s that? Come on, tell me!’

Marina is Vasya’s classmate and, you know, great love. Vasya has long been in love with her. He showed me a photo of them together: a beautiful blonde, good choice for the boy. Compared to the girl, Vasya appears tall and mature. Marina, however, is a nervous type, Vasya reports. She may stay nervous for the whole break between classes.

- ‘No kidding!’
- ‘Yeah, she’s that nervous, but that’s why I love her’, Vasya explains.

Nevertheless, the ‘nervous’ Marina sometimes calls Vasya and asks him how he’s doing and when he’ll come back to school. But Vasya has been staying out of touch lately. He really worries that he may fall way behind the classmates. Like Marina, he’s an A-grader. Vasya cracks math problems like nuts. He’s excellent at assembling the most complex construction sets. He has a brilliant mind. Keeping such a cosmos in the head in a hospital ward with the mom for over half a year is like keeping a tiger in a small cage.

He feels jammed in his cage. He’s tired of medical procedures and the four walls of the ward. After unsuccessful and expensive chemotherapies he spent three months in the hospital without treatment, because for some reason he wouldn’t be issued an assignment for a bone marrow transplantation (BMT) surgery, although his case has long been crystal clear for doctors. It was clear that transplantation is the only chance to save life of the cosmic Vasya who by now could have already been building his wooden kingdom instead of being kept in a hospital.

Every other day Vasya is administered a donor platelet concentrate, and his mom rakes heaven and earth to find suitable male donors with blood group III. If she won’t find them, the boy will simply die from internal bleeding. He will simply die, and that’s it. But by some miracle, donors do come about. In the meantime, Vasya’s blood had been sent to a clinic in Genoa for typing. For that, his mom paid 5 thousand euros she borrowed from friends. All in all, she was able to raise 15 thousand euros for Vasya out of the 125 thousand required for surgery. After that, she’ll have to find a donor for the boy.

- ‘Why did you stop calling Marina? She has to wait for you to return, like young women wait for soldiers to come back from war. You are a soldier, and you’re fighting your battle here.’
- ‘You mean, our lads fight Putin and I fight death? Sure’, Vasya obviously likes the idea of imagining himself a soldier.
- ‘Then go ahead and fight. And let your beautiful girl wait for you. Call her.’

Tomorrow, Vasya will begin receiving a high-dose, very strong and extremely risky block of chemotherapy. That’s why, today is the last day when he can just walk out in the hallway and talk to me. Next time, he will have to go straight to the airport. Fact is, Vasya’s body does not take therapy, so this block must prepare him for BMT.

Vasya says that raising such a huge amount to pay for surgery is almost impossible. He knows everything about currency exchange rates and his disease. You know too much, Vasya. You’d better think about Marina and your kingdom.

- ‘Will you invite her to your house?’
- ‘Surely! If I’ll get a scooter for my birthday’, Vasya livens up and casts a side look at his mom. ‘Then, I’ll come over to pick Marina up, ask her mom what time she’ll have to get back home, and ride her over to my house’.
- ‘All right, Vasya, knock it off. Let’s go, you have to take antibiotics, catheter and get ready for tomorrow’, the mom interrupts her son’s ringing voice.

Vasya abruptly goes silent, quietly and obediently stands up and walks to the door. In response to my ‘bye’ he barely visibly nods his head and doesn’t even look at me. Tomorrow is the last block which will take a month. A block with vomiting, danger of bleedings and internal organ burns, horrible ulcers, antifungal drugs, long bedridden days, burning mouth and absence of any desire to think about the house and about her. That’s the price of preparation for the decisive battle: transplantation of bone marrow. On his part, Vasya will do everything he can.

Name: Vasyl V. Kozmulyak, born 14/01/2004

Location: Chernivtsi region

Diagnosis: acute myeloid leukemia, very early first relapse