Anzhela has lost children before. Her first baby died to live 2 months and 28 days. The diagnosis was barely established. Anzhela's third child, Renat is ill. But this time, doctors know what to do.
Photo: Farit Kasimov
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No Time to Fear
// Renat Konofeev needs bone marrow transplantation
The Russian Aid Fund
Renat Konofeev has one of the most complicated cancer types – hemophagocytic lymphohistiocytosis. There is no medicine to cure from this disease. The only thing that can help is to transplant bone marrow from an unrelated person because no one of Renat’s family could be a suitable donor. Search for the donor in the European Bone Marrow Transplant Registry in Germany will cost ˆ15,000. This should be done as quicky as possible because the disease is growing progressingly worse.
The boy is eight months old. He sits on the bed at the Udmurt Children’s Clinical Hospital in Izhevsk, the Western Urals area. He smiles at me and his mum, Anzhela, with a question in his face, pulling my pencil to his mouth with one hand and reaching out for my notebook with the other.
“You see how happy he is now,” Anzhela says. “After chemo in spring he spent 12 days in the resuscitation unit with artificial pulmonary ventilation. When they gave him back to me, he could not even suck. He would just hang out his tongue like a kitten, so I had to spill milk on his tongue.”
Doctor Sergey Dunaev says Anzhela is afraid of any kind of treatment, afraid of new complications, afraid of bone marrow transplantation which is vital for her son. It was Dr. Dunaev who established the timely diagnosis for Renat. Thanks to him, Renat now smiles and pulls the pencil to his mouth. As far as I understand, the doctor counts on me. I’m to make it clear to Anzhela that there is no time for fear because fear is mortally dangerous.
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For those who are encountering the Russian Aid Fund for the first time
The Russian Aid Fund was founded in 1996 to assistant the authors of desperate letters sent to Kommersant. We verify the letters with the help of local authorities, then publish the letters in Kommersant, Domovoi magazine and on the site www.rusfond.ru. If you decide to help, you will receive the banking details of the authors of the letters, and the rest is up to you. You just help you help. This approach has been popular with our readers. More than $8.4 million has been collected. We also organize relief efforts during national catastrophes, for 53 families of the miners who died in the Zyryanovskaya Mine in Kuzbass, 57 families of the policemen who burned to death in Samara, 153 families of the victims of explosions in Moscow and Volgodonsk, 118 families of the sailors who died on the submarine Kursk, 52 families of the hostages who died in the seizure of the performance of Nord Ost, 39 families of those who died in the Moscow Metro on February 6, 2004, 100 families who suffered losses in Beslan. The Fund is the winner of the Silver Archer award.
The Russian Aid Fund
Address: P.O. Box 50, 125252 Moscow, Russia
www.rusfond.ru
e-mail: rfp@kommersant.ru
Telephone: +7 (095) 943-9135
Telephone/fax: +7 (095) 158-6904
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We put Renat to bed and go to the hospital’s canteen to read the story of Alina and Serezha Tropin from my laptop. Because it’s just the same story.
When Alina was born and got lymphohistiocytosis, bone marrow transplantation from unrelated donors was not performed in Russia. Alina Tropina also underwent chemotherapy. It worked but only for a while. The girl soon was unable to walk and lost hearing. Later she had a stroke. Alina died in her mother’s arms.
The Tropins gave birth to Serezha. Serezha also got lymphohistiocytosis. But doctors had learnt to do unrelated transplantation by that time. The Russian Aid Fund and Kommersant’s readers raised money to help find a bone marrow donor in Germany for Serezha Tropin and make the transplantation. Serezha recovered and now lives with his mum and dad.
Anzhela is reading words written by Alina and Serezha’s mum. “Sick children’s mums are very unhappy,” she wrote. “We are deprived of ordinary life. We are deprived of an opportunity to take our kids to kindergarten and make routine things which in fact make happiness. But on the other hand, we are happier than many others. What does our happiness lie? It is because our child is near. He is running, playing and hugging the mum.”
“Maybe, we shouldn’t make the transplantation?” Anzhela ask me suddenly. “I’ve read it can dangerous.”
I’m so stunned that I keep silent. The boy needs bone marrow transplantation. Doctors from Moscow’s Russian Children’s Clinical Hospital are ready to do it. But there is not donor, and doctors support Renat in Izhevsk. Chemotherapy blocks that doctors used to suppress his lymphohistiocytosis go one after the other, and each of them may turn out to be futile. The disease may get out of hand. Then it will cause a complication, and Renat will die. I still keep silent. The boy badly needs the transplantation. Anzhela contacted the Russian Aid Fund one week earlier, and asked to help raise money to find the donor. Surely, transplantation is dangerous. New bone marrow may fail to survive. There may be fatal infections after all. But without the transplantation Renat is sure to die.
I’m still silent. Anzhela burst out crying in reply to my silence.
“You think I’m against the transplantation?” she is sobbing. “I just don’t know how to live if I lose Renat.”
Anzhela has lost children before. She had a miscarriage during her first pregnancy. Later, she had a second baby. When the girl was two months she got a high temperature. Her stomach swelled, and she turned white as a sheet. The girl died at two months and 28 days. The diagnosis was barely established. Doctors put “liver failure” in the girl’s death certificate.
Renat, Anzhela’s third child, is ill. He was born on January 12, and on March 8 he got a high temperature. Then his stomach swelled, and he turned white as a sheet. This time Izhevsk doctors made an accurate diagnosis – “hemophagocytic lymphohistiocytosis.”
Anzhela didn’t even get scared then because she didn’t understand what that meant. It meant that Renat’s immunity had failed and started to destroy his liver. Renat had nearly died from liver failure. But he underwent chemotherapy in the right time, and his liver was saved.
Anzhela is sniffing. Her eyes are becoming red again. I bombard her with questions about the job and husband who left as soon as Renat got ill. Before Renat was born, Anzhela worked as a salesperson in a greengrocer’s. Disability pension and child support are now the family’s sole income is. I tell Anzhela that the husband may go back, and everything will be all right again.
“I don’t need nothing of it,” Anzhela interrupts me. “What is our happiness about? There’s nothing more important in life than kids.”
She takes my laptop and starts reading Alina and Serezha Tropin’s story again.
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759,000 Rubles Needed to Save 8-Month-Old Renat Konofeev
Mikhail Maschan, head of the General Hematology Department at the Russian Children’s Clinical Hospital, says that doctors in Izhevsk made a very accurate and timely diagnosis for Renat. “He had chemical therapy done in the right time,” Dr. Maschan says. “That’s why he didn’t repeat his sister’s fate.” Dr. Maschan believes that the boy is “in remission and feels quite well.” Supporting treatment is better to be done in a hospital in his home town where his family and friends are around. However, Renat’s amelioration is temporary. “No one knows how long the remission is going to last,” Dr. Maschan adds. “But the tragic development of the disease is inevitable.” It means there can’t possibly be the question whether to make transplantation or not for a child with such a diagnosis. With other diseases one can weight chances and consider risks of transplantation. Lymphohistiocytosis leaves no choice like that. “Transplantation only!” Mikhail Maschan said. “With donor’s bone marrow, we guarantee transplantation for Renat at the soonest possible date.” Searching for the donor in the Stephan Morsch Foundation in Germany is going to cost ˆ15,000. The search has already been launched against the guarantee of the Russian Aid Fund. Before and after the transplantation Renat will have to take Vfend and Cansidas antimycotics that parents have to buy themselves. The medicines are going to cost ˆ14,000 more. It means the total of 1 million 15,000 rubles has to be raised.
Our partner Kapital Investment Group is going to make a traditional donation of $10,000. 759,000 rubles is yet to be found. You can transfer your donations in euros directly to the Morsch Foundation. Donations in rubles can be transmitted to the bank account of Renat’s mum, Anzhela Konofeeva. Please contact the Russian Aid Fund for the banking details. Visit www.rusfond.ru to find out more.
Expert group of the Russian Aid Fund
Ekaterina Chistyakova
All the Article in Russian as of Sep. 07, 2007
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