Katya Tonkova doesn't really understand that a big misfortune happened to her. She is only four. She won’t be able even to pronounce a word like that, -- retinoblastoma.
Photo: Âèêòîð Êîñòþêîâñêèé
|
 |
How Many Birthdays Can You Have
// A four-year-old girl urgently needs antifungal drug
Katya Tonkova does not really understand that a big misfortune happened to her. She is only four. She won’t be able even to pronounce a word like that, – retinoblastoma. The word means tumor of retina, which is a disease of children only. Simply speaking, it means eye cancer. One of Katya’s eyes has already been removed, which does not disturb her so far. But her second eye and her life need to be saved. After the chemo, Katya has mycotic infection, and it is deadly. The only medicine that can save Katya is Cancidas, one bottle a day. A bottle costs more than Katya’s mother ever earned per month. Besides, she has been unemployed over a year already because of her daughter’s illness. Meanwhile, Katya needs 60 bottles, and they cost 1 million roubles.
Katya got used to the hospital, she likes the playing room where there are more toys that at home, in the one-room apartment of Katya and her mother Dilya. The girl feels at home in the ward, she taped her drawings onto walls. Katya is fond of drawing. I ask her what is the creature that she depicted in a drawing called Birthday!
“It’s a lamb!” Katya is surprised at my question.
“What kind of lamb? The one from the poem: ‘Little lamb took a pen, took it and wrote...’ Do you remember what he wrote?”
The girl replies with doubt in her voice:
“He wrote ‘Birthday’.”
She doesn’t yet know this poem by Korney Chukovsky, but she remembers others. Katya knows a lot, for instance all letters and digits. She can even write, although just one word so far: Katya.
The drip bulb, which is attached to Katya by means of a pipe, is fixated to a pole on little wheels. The medicine’s day portion has already finished dripping, and Katya says firmly, looking at her mother: “I’ll do it myself,” and goes out of the ward, pushing the pole in front of her, to the nurse to detach the drip bulb. Meanwhile, mother Dilya says:
"Little children won’t complain, you know. When I noticed that something is wrong with the eye, I took Katya to doctors. They said she has retinitis, it is retinal detachment. There were five surgeries, and the sixth time the eye was removed. Then it already became clear that it is tumor. And then we were taken here, to the 31st hospital."
Doctors of the 31st city hospital of St. Petersburg, of its oncohematological department for children, are well familiar with the disease, and cure it successfully. Katya’s doctor Galina Georgievna Radulesku confirmed to me later: mothers usually don’t notice the disease in its first stage, while children don’t understand what’s happening to them.
“Parents should look into children’s eyes more often,” said Galina Georgievna. “If the pupil glows...”
“Glows?” ask I.
“Yes, if it changes color, if it’s no longer black. It is the first symptom, and the child needs to be taken to doctors immediately.”
Katya returns to the ward, takes markers and a coloring book.
I say:
“Katya, your mother has been telling me that you are a girl of character.”
“Right,” replies Katya shortly, keeping drawing.
“What kind of character is yours?”
The marker freezes in the air for a moment. Katya thinks of the question and says:
“Cheerful,” and goes back to drawing.
“Sometimes cheerful,” says mother Dilya, “but she is usually serious, like now, you can see.”
I can see. Having bowed her head so that her healthy eye is turned to the drawing, the girl is firmly coloring some kind of animals. But then she asks me what the lamb in that poem wrote. I recite:
“I’m Beh-Beh, I’m Meh-Meh, I horned a bear!”
Katya laughs.
Her mother strokes the girl’s head:
“She used to have hair long and thick, like this of a lamb. Oh, it’ll grow again, it fell out because of the chemo. It even grew a little between chemo blocks. Mycotic infection is much worse. It began right after the first block. Naturally, the immune system was depressed by all those chemos, no wonder fungus appeared. Katya began coughing, the entire lungs are infected, there are about 20 focuses!”
Katya was treated with Diflucan medicine, it is cheaper, but it didn’t help much. Actually, it didn’t help at all. St. Petersburg’s Research Institute for Medical Mycology then issued a conclusion: Katya should be treated with Cancidas only, until focuses of infection in the lungs disappear completely. Meanwhile, the girl was to undergo two more chemo blocks.
Katya asks me to repeat the poem about the lamb. She definitely wants to learn it by heart. I repeat and ask:
“It’s written ‘Birthday!’ under your lamb. So, whose birthday is it, -- yours or the lamb’s?”
“Certainly, the lamb’s. Mine was long ago.”
“How many birthdays have you already had?”
Judging by the expression on her face, I asked a completely stupid question.
“Only one! How many birthdays can you have?!”
Indeed, every person has one only birthday. But every year. However, Katya might not remember or understand it. She is only four. Will she ever be five? It now depends on expensive Cancidas.
by Viktor Kostyukovsky, specially for the Russian Aid Fund
720,295 roubles needed to save Katya Tonkova
Professor Margarita Belogurova, head of the oncohematological department for children at the 31st city hospital of St. Petersburg, said that Katya’s case is “special and not an easy one”. The professor believes there might have been difficulties with diagnosing the disease at the first stage. And when the diagnosis was eventually made, it was too late to save the right eye.
However, Professor Belogurova gives a “quite good” prognosis for Katya’s case. The doctor believes that the next chemo in combination with treating the mycotic infection with antifungal drug Cancidas will lead to Katya’s complete recovery.
Katya’s mycotic infection is the main and quite typical complication of that kind of therapy. Compared to chemo, radiation therapy is not so bad for the immune system. But it has another drawback: rays stop the growth of skull bones. Unlike other bones, irradiated ones do not grow, which then requires complicated plastic surgeries. Thus, doctors decided not to use X-ray therapy in Katya’s case. Chemo is more expensive, but more reliable. Antibiotics make it more expensive. Yet, many patients cannot afford even Diflucan, which is cheaper. But the state helps here. Yet, when expensive Cancidas only can literally save life, doctors are at a loss: the funds allocated from the budget to hospitals are enough for chemo and accompanying treatment in the cheapest variant only. That is, with Diflucan.
Katya’s mother Dilnara Shaikhrazieva is the girl’s only parent. Dilnara graduated from the St. Petersburg Financial Academy, worked as accountant, and has been unemployed for more than a year now, because she spends all her time by her gravely ill child. Dilnara cannot buy Cancidas. Katya needs one bottle of Cancidas a day, and at least 60 days are necessary. One bottle costs 17,000 roubles. Thus, 60 bottles will cost 1.02 million roubles. As always, our partner Ingosstrakh will donate $11,500. So, 720,295 roubles more is needed. Dear friends, every rouble is precious for saving the girl’s life. Donations can be transferred to the supplier company or to Dilnara Shaikhrazieva’s account in Sberbank in Moscow. The Russian Aid Fund has all banking details.
Expert group of the Russian Aid Fund
All the Article in Russian as of Mar. 30, 2007
|
|
|
