In Perm, where the Stepanovs live, doctors started treatment after myelodysplastic syndrome transformation. The disease is aggressive; marrow transplantation is Denis’ only chance to recover.
Photo: Âèêòîð Êîñòþêîâñêèé
| Other Photos |
 |
|
 |
Transplantation as a Ticket to the Future
// Denis Stepanov has the only chance – transplantation of his mother’s marrow
Denis, 8 from the city of Perm has leucosis – acute myelogenous leukemia. Chemotherapy is of no use any longer; only transplantation of a donor’s healthy marrow can save the boy. There is no time left to search for a donor in the international database. Denis’ last chance is one of the most difficult transplantation operations – haploid-identical transplantation of his mother’s stem cells. To recover, the boy will also have to take a lot of medicines, which cost 1.5 million rubles in total.
Denis, 8 from the city of Perm has leucosis – acute myelogenous leukemia. Chemotherapy is of no use any longer; only transplantation of a donor’s healthy marrow can save the boy. There is no time left to search for a donor in the international database. Denis’ last chance is one of the most difficult transplantation operations – haploid-identical transplantation of his mother’s stem cells. To recover, the boy will also have to take a lot of medicines, which cost 1.5 million rubles in total.
The doors of this clinic’s wards are made of glass, and I can see Denis climb up a chair and look through the window. He has done it very carefully so that the tube that links him to the infusion pump – an automatic dropper – would not get disconnected or even bend.
“They are building something there, in the street,” Denis’ mother Svetlana tells me. “Now they are digging and laying pipes. He likes watching construction, especially when large machines or an excavator work.”
“He checks whether they are doing everything right, doesn’t he?”
“Yes, he does,” Svetlana smiles. “And what else should he do here?”
I see tears in her eyes, but Svetlana smiles at me. The day before another treatment stage was over; the blood test results were bad. In the ward Svetlana tries to pull herself together – she doesn’t want her son to see her fear, but when she leaves the ward, she bursts out crying.
|
|
i
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
|
|
|
The Stepanovs came here, to St Petersburg’s Gorbacheva Institute for Children’s Hematology and Transplantology, from Perm. Denis’ disease was diagnosed three years ago. At first doctors thought it to be anemia – deficiency of hemoglobin, – which was ensued by pneumonia. But then doctors understood that it was myelodysplastic syndrome. The diagnosis was made after the boy had been sick for a year.
“They told us that the syndrome could transform into leucosis,” Svetlana says. “But maybe it wouldn’t, they said.”
“A year later the syndrome turned into leucosis. I even felt a kind of relief – at least it was clear what to treat. Before it, it was so hard to sit and wait for something unclear.”
Denis underwent the first chemotherapy stage “with difficulty”, and the other four stages - “pretty easily”.
The two words patients with leucosis and their relatives use most often start with the Latin prefix re-. One of the words brings joy, the other – grief. The first word is remission, which is translated as “alleviation”. It is a stage of a chronic disease, where its symptoms weaken, or even disappear.
“Remission followed the first chemotherapy course,” Svetlana continues her story. “After the fifth course last December there was hope of complete curing.”
At that time, in December, Svetlana bore another son. The elder brother gave him a name. “Let’s call him Dima,” Denis said. The Stepanovs celebrated New Year full of joy and hopes: Denis got healthier; he was not as pale as he used to be; he often went out for tobogganing. His blood tests were all right.
Then the parents noticed that the boy got tired very quickly, and another blood test showed that remission was over. And the other re- word – relapse – followed. Leucosis was back.
Perm’s doctors sent the description of Denis’ case to a few Moscow and St Petersburg clinics. The Gorbacheva Institute replied – and here they are now, in St Petersburg. In Perm, Denis only managed to go to school for the first time, get acquainted with the teacher and take text-books from the library.
“As far as school is concerned, I don’t worry at all,” Svetlana says. “Denis is very smart, he even learnt to read himself. He doesn’t read fairy-tales any longer – only adventure stories. He likes Tom Sawyer very much. The teacher asked us whether we were leaving for a long time. What should I have answered? No one knows how much time it will take. I told her that if everything went smoothly, Denis would be absent for two weeks. And maybe for two months.”
Svetlana doesn’t want to consider any other variants.
Denis has no other variants. He often tells his mother, “When I grow up...” First he wanted to become a doctor. Then his plans changed. But he always picks up some of his toys, places them aside and says, “We’d better keep them for my children.”
The Stepanovs are rather a well-to-to family, but they can’t afford to buy the medicines Denis will have to take before the operation and after it. Denis’ father Sergey is a lawyer; his mother is a programmer. Svetlana hasn’t worked for a long time, just like the mothers of children with grave diseases. Sergey had to leave his job because he is now in St Petersburg. Svetlana’s parents are in Perm, with little Dima.
Denis, with a long tube linking him to the infusion pump, stands on the chair beside the window looking at construction. He can spend hours watching it. Svetlana says he often remembers his small brother and grandparents. Every day he looks forward for his father’s coming. It seems to him that if his father is around, he will recover soon.
&
650,500 rubles needed to rescue Denis Stepanov, 8!
Natalya Stancheva, department chief with St Petersburg’s Gorbacheva Institute for Children’s Hematology and Transplantology, told us, “Denis has acute myelogenous leukemia. In Perm, where the Stepanovs live, there were problems with the diagnosis. Unfortunately, doctors started treatment after myelodysplastic syndrome transformation. Marrow transplantation is Denis’ only chance to recover. The disease is aggressive, with an early relapse, which is why we have no time to search for an unrelated donor at the Morsch Foundation database.”
According to Doctor Stancheva, in his native city, Denis could have been prescribed restraining treatment only, but he wouldn’t have been cured. “We sought remission with anti-relapse treatment, but, unfortunately, we didn’t manage to reach the aim.” Doctors don’t see much use in chemotherapy either. It is necessary to perform haploid-identical transplantation of Svetlana’s stem cells, which are partly compatible with her son’s cells. “It is very important to avert possible complications after transplantation, that is why Denis will need antifungal and antimicrobial medicines,” Natalya Stancheva says.
Dear friends! The medicines for Denis cost 1,567,500 rubles. The Charity Reserve Fund will donate 500,000 rubles, and our permanent partner Ingosstrakh – 417,000 (to find details, follow the link www.rusfond.ru). This said, another 650,500 rubles is needed. You can transfer your donations to Svetlana Stepanova’s account in Sberbank or to the pharmacy’s account. You can find all details with the fund. It is also possible to pay with credit cards or web-money via the e-payment system. We appreciate every ruble you may donate.
Russian Aid Fund experts
Victor Kostyukovsky, specially for the Russian Aid Fund
All the Article in Russian as of Oct. 24, 2008
|
|
|
