Medicines will save Ilya Pisarev

The boy is nine years old. He has severe acute lymphoblastic leukemia, which does not respond to chemotherapy at all. Yesterday, November 13, at the St. Petersburg Research Institute of Pediatric Oncology, Hematology and Transplantology named after. R. M. Gorbacheva Ilya received a haploidentical bone marrow transplant from his father. Now we need to survive. To survive the inevitable complications, and to survive them, antifungal drugs and strong antibiotics are required.

A month ago, Ilyusha was declared hopeless. The doctors asked not to torment his son without hope; it would be better for him to live as long as he had left at home with his mom and dad. But now there is hope!
Photo: Vasily Popov, Kommersant

A month ago the boy was declared incurable and hopeless. They are from Krasnodar, and there, in Krasnodar, the attending doctor arranged a telephone conference for Ilyusha’s parents with doctors from the Moscow Hematology Center named after Dima Rogachev. The point of the conference was to explain to the parents that Ilyusha could not be helped in any way.

Good doctors know how to do this. A bad doctor simply blurts out the death sentence to the parents and discharges the child home. Good doctors talk for a long time. They explain what kind of leukemia the child has and why this particular leukemia is so evil. They tell us exactly how they tried to treat this leukemia, how they tried first one strategy, then another, then a third. Explain what exactly happened when the child did not respond to treatment. They describe the remaining possibilities and explain why it is known in advance and with absolute certainty that even this will not help. And then they say that, unfortunately, we have to reconsider the goals of treatment. They say that from now on, unfortunately, we do not set ourselves the goal of curing a child, but set the goal of prolonging the child’s life as much as possible and improving the quality of his life. They say that instead of tormenting him without any hope, let the boy live as long as he has left at home, in a familiar environment with mom and dad, his favorite toys, and you will spend as much time with him as you have left to spend together, rejoicing the last days of communication with him, as far as possible...

Ilyusha’s mother listened, and she couldn’t wrap her head around what the doctors were saying. She left the office where the telephone conference was taking place, returned to Ilyusha’s room, and she couldn’t wrap her head around the fact that no one was aiming to cure her boy anymore, but only to prolong his life and improve his quality of life. Ilyusha was playing with Lego, and his mother couldn’t tell him anything, and she couldn’t cry, because then Ilyusha would begin to feel sorry for her, and she would have to explain something to him, but how can you explain it? She sat and thought that the doctors had probably talked to her and taken care of other patients, leaving them facing the inevitable... The word “death” was not even uttered in her head. At times she wanted to get up, go back to the doctor and ask something else important, say something more decisive that would change the situation. But I didn’t know at all what else to ask or what to say. She... She didn't know... She couldn't... She couldn't... She didn't care...

Suddenly the door swung open, the attending doctor entered the room and said in a very businesslike manner, but, it seemed, holding back an excited smile:

- Get ready quickly. Tomorrow morning you are expected at the Transplantology Institute in St. Petersburg!

Something happened there after Ilyushin’s mother left. They were still talking about something there. They called someone, consulted with someone, and came up with a last chance for Ilyusha.

There was no time to think about it. It was already evening. Angelica (that’s the name of Ilyusha’s mother) put her things in her bag, dressed the child and went home to get ready. And German (that’s the name of Ilyushin’s dad) found out that the next plane to St. Petersburg is at five in the morning.

They barely slept all night, packing their things. You forgot a bunch of important things, dad's razor, mom's toothbrush - what else? They didn’t remember to take a single Ilyushin’s school notebook or a single book to read on the road. They just put the tablet and a bulky Lego set.

And Ilya didn’t understand what happened, but he saw that his parents were having some kind of holiday. That they don’t sleep past midnight, bustle around, pack their suitcases, put them on, call a taxi, go to the airport and all that’s missing is a flag to flutter over them. And the plane takes off and emerges from the clouds, and the dawn spreads across the clouds in orange spots.

Ilyusha did not understand what was happening, but the festive mood of his parents was transmitted to him. St. Petersburg seemed huge and very beautiful, the Neva seemed sparkling, the crescent-shaped Roentgen street seemed cozy, the clinic looked like a Lego set, the two doctors, a man and a woman, who met him seemed very kind to Ilyusha.

“I like it here,” said the boy. “It’s cool that they will transplant bone marrow from dad.”

Valery Panyushkin

Holiday – Kommersant Newspaper No. 206 (5479) dated 11/14/2014