Our work Real life stories Oksana Sobolevskaya: My life is a dream that’s already started to come true “I’m alive, in good health and ever so grateful.” Oksana Sobolevskaya and her brother Anton are the first stars of the Blood Family project. In the Blood Family project, we tell the stories of people who share the same blood flowing through their veins. They had to undergo bone marrow transplantation surgery, one needing new bone marrow due to disease while the other was able to become their donor. The first to tell their story are two siblings, Oksana and her brother Anton. Oksana is 22. She is a student and a Podari Zhizn volunteer. Anton is 31 and a civil servant. They seldom recall the experience, but their tears, which neither of them manages to hold back during the conversation, show that everything that happened is still with them. It hasn’t gone anywhere, hasn’t faded away, even though over fourteen years have passed since the transplant. It’s a pleasure to see how happy and satisfied Oksana looks as she poses in front of the mirror, tries on outfits for the photo shoot and asks for long-lasting makeup so it can stay on through the evening. “Yes, I was sick, but I got better, and now I have a huge number of plans.” Anton, a mature, serious man, is more restrained, but it’s clear to see that he can’t refuse his beloved little sister anything—still “little” even though she’s long since grown up, and beloved as someone who shares a close family bond twice over. “My dad carried me to the hospital in his arms” Please tell us what you remember about that time. Oksana: I was about four, and I was a perfectly ordinary child. I remember playing in my room. Then I wanted to go see my mum, so I stood up, but I immediately fell over, and couldn’t get up again. I had to crawl on all fours. I got there and climbed up onto the sofa. My mum was on the phone, and I sat next to her with no idea how to tell her what was wrong with me. So, what if I fell over, but why couldn’t I then stand up? She was very frightened. My parents knew I needed an urgent examination, but they had no idea where to go. It was a critical situation, just like it would be for any family. Where do we go? Who can help? Just what is happening anyway? I was taken to our local hospital in Podolsk, but I didn’t spend long there. Nothing helped: not drugs, not drips, not injections. I was very sad. I remember that my dad gave me a toy, a dog, and I was so happy that now I had a friend. Of course, there are some things I only remember because the adults told me. I spent a long time thinking about this even after I grew up. At the time I thought that I’d deal with it all, that I’d definitely get better and live happily ever after. And it turns out I was right to be so confident! We were advised to go to the Russian Children’s Clinical Hospital, and my dad carried me there in his arms because I couldn’t walk. We were met by Galina Novichkova (now the medical director of the Dmitry Rogachev Haematology Centre – ed.). I was given some kind of medicinal drip, and I started walking again. But this was the only good news because they tested me and found out I had 90% lymphoblastic cells in my blood! I had acute lymphoblastic leukaemia. What do you remember about your time in the hospital? These were the late ‘90s, such a long time ago… Oksana: I only have fond memories of the hospital. Maybe I didn’t fully understand how serious it all was. But, as I said, I was convinced that everything would be all right. That must be what let me avoid thinking unhappy thoughts. And then I was surrounded by the most wonderful and caring doctors, like Alexei Alexandrovich Maschan! I remember how he showed affable surprise at my round cheeks—they grew because I was on hormones. I was very lucky to meet doctors like him. They deserve the highest honours for their work and the way they treated every child. I am really, truly thankful to them. Anton, what was happening with you back home at that time? Anton: Every weekend, my dad and I would go visit Oksana and Mum in hospital. We’d bring food, medicine, and all the daily necessities. I was about fifteen. I remember being afraid. And not just me—we were all very frightened. They couldn’t give Oksana a diagnosis for a long time, and it made us all anxious. We couldn’t predict what was going to happen, and we couldn’t see a way out of the situation. “Girls, your hair will grow back for sure” And then one day the treatment was over, and you came home. Oksana: Yes, I went through all the necessary stages and they released me. I spent a long time on maintenance, so I’d come back to hospital and have tests done. Then I started my first year of school and everything was fine. But once I got to the second year, I started having difficulties. Someone accidentally pushed me and I broke my arm. I had trouble writing as a result, and I had to stay home. But I kept studying. My mum and I would check my Russian homework, and she paid me a lot of attention. She’d always be examining me and asking me how I felt. That’s how she found the lymph nodes. We were terrified of a relapse. I started going through chemotherapy and radiotherapy. I’ll be honest, I was shocked when the medicine made my hair start to fall out. Mum warned me that it would happen, but I hadn’t taken it seriously. Then when it really did… But still, I found the strength to accept it within myself. I kept telling myself, “What matters is that I’m alive and well. Everything else will sort itself out.” And I really want to tell that to everyone having the same worries right now: girls, your hair will grow back for sure. I really don’t want anyone to stress over it. Yes, it’s unpleasant and it’s hard to bear. But it’ll pass. Oksana and Anton were a 100% match You have a big age difference, nine years. How did you get on as children? Anton: We never fought. We loved to mess around together, to have pillow fights, jump and run around. I wasn’t home very often as I was very into sports—I did Greco-Roman wrestling—so I was always away for trips and tournaments. But when we did meet up, we always had fun. What did you call each other? Oksana: He called me a macaque. I called him a bear. Anton: In 2003, Oksana went to school as a first-year, while I was having my graduation ceremony. I was carrying her on one shoulder, and she was ringing the symbolic “last bell” for me. There’s even a photo—I’m carrying her, and she’s ringing the bell. We have many photos in general, and they let us remember everything: here’s New Year, the first one after her illness, and everything’s fine. At the time, nobody knew that the illness would come back. Here’s Oksana in kindergarten, still with long hair, and here’s us all going to the circus together… Why did the doctors decide that Anton would be your bone marrow donor? Oksana: Neither my mum nor my dad were compatible with me, so they decided to test if Anton was. If he hadn’t been, we’d have had to look for a donor abroad, but I was running out of time. Why didn’t they test Anton to begin with? Anton: I suppose our parents wanted to avoid getting me involved if they could. But it turned out my sister and I were a 100% match. That’s when we started preparing ourselves for what lay ahead. How did you prepare yourselves? Anton: Above all, emotionally. In 2013, I was already in higher education. But I decided to take a year off to save my sister. I knew that I couldn’t afford to fall ill no matter what. And then they injected me with a drug that stimulated stem cells to enter the bone marrow—they are what you need for a transplant. What were you thinking about back then? What did you feel? Anton: I was aware that we’d gained a real opportunity to help Oksana get better. We finally had something we could use. I remember being worried when I went for the stem cell extraction. I was in a half-sitting half-lying position, and they connected me to a device that cycled my blood and collected the cells. My dad was sitting next to me, and the doctors were in complete control, so in that sense everything was, of course, completely safe. The procedure took an hour and a half. And then I got up, took one step and collapsed in a dead faint. It was that emotionally intense an experience. How did your parents feel at that time? Anton: They had tears in their eyes. We were all extremely anxious. Dad was next to me, and Mum was next to Oksana. When I came to and realised that it was all a success, that there were enough cells, it felt great and I was very happy. “I always knew it would all work out” Oksana, how did you prepare for the transplant? Oksana: I had radiotherapy, then intensive chemotherapy. I felt awful, nauseous, and I wasn’t strong enough to do anything more than lie down. It was no fun at all. My hair fell out. And then they took me to the transplant ward, into a sterile room. It sounds like you lost your resolve after all? Oksana: No. I was sad, but not afraid. I believed, even knew, I felt deep down that everything was going to be all right. So, I never gave up. It was hard and painful, and at one point I even needed saving… but you can see for yourself that everything is all right now. I think right now, I could do with the determination and positive outlook I had back then. Maybe it’s because I was a child, and I believed in miracles, in fairy tales. It was a kind of childish naiveté. But you always have to believe in the best possible outcome, and even when you feel like giving up, you have to keep moving forward. And do what the doctor tells you. Have doctors played a big role in your life? Oksana: Yes, I was surrounded by love, goodwill, and care. They always asked me how things were, how I was doing or whether I wanted to eat anything. In fact, food was interesting. There’s a lot I wasn’t allowed to eat. Everything had to be cooked in a pressure cooker and fruit had to be baked. Then when they prescribed me hormones, I suddenly fell in love with… chicken! Some people start eating yoghurt by the pack, but I could eat an entire chicken in one go. The entire ward came to look at me! But I couldn’t drink carbonated water, only the ordinary kind, and powdered herbal tea. When they finally permitted me Coca-Cola, I was delighted like you wouldn’t believe. It was so delicious! Anton: We followed the doctors’ instructions to the letter. Not allowed meant not allowed. We kept going to the very end. And the miracle did happen. Everything healed. It was like she’d been born again. I talked to Alexei Alexandrovich and found him to be a very positive man who always knows how to cheer someone up, when to crack a joke and how to chat. Our doctors are godsends. I’m eternally grateful that they exist. “After the transplant, it was as if I’d started my life anew” Oksana, how did you get back to your ordinary life? Oksana: It was as if I’d been born again and started my life anew. I learned to walk and got used to ordinary life bit by bit. I spent a long time wearing a mask. I remember how my mum and I went shopping and people started laughing at me. It was unpleasant, but I learned to ignore it. They’re just lucky nothing like this ever happened to them. What matters most to me is what my family thinks, the people closest to me, and I don’t care about strangers. Anton: I remember one nasty situation as well. My sister went for a walk, and when she came back, she told me that some older girls were making fun of her for walking around in a headkerchief or a mask. Naturally, I went out and started explaining to them what she’d been through. I think I got through to them. One even started crying, but I don’t think I hurt her. Rather, she must have understood what it’s like to end up in a hospital with cancer, with a relapse… How did you feel about having your own brother be your saviour? Oksana: I was over the moon. I still think I was extremely lucky. It was a genuine miracle. It’s one thing when the donor lives abroad, and you have no way to find out who they are and what their life is like. But here my donor was the person nearest to me. It’s great! Have you already had the chance to thank him? Oksana: Yes, of course. I think we understand each other. “I just keep moving forward” What’s happening in your life now? Oksana: I’m a fifth-year student at the department of foreign languages. I study, I go out, and I love my life very much. I see the world in very bright colours. If something good happens to me, I take it as a source of true happiness. To some students, getting top grades is just good, but to me it’s a feeling of fulfillment, of another step forward. I feel proud of myself for every victory and keep going. Sometimes I feel like my life is a fairy tale. I’m going to graduate, find a job and get married. That’s the very definition of a dream! I’m a little naive, and I don’t know how to be rude. It’s hard for me to take a stand or to defend myself. But I find upsides to that as well. Yes, I am the way I am. Sometimes I get sad, sometimes I cry, but I understand that everyone is different. I have many friends, and we often go to the cinema together or sit in cafés. I’m also a volunteer for the Podari Zhizn charity, so I come to play with the children, and I want to start teaching them foreign languages. How do the people around you who know your background treat you? Do they try to keep you safe? Oksana: My parents still try to keep me away from the outside world. They realise that I’m growing, and I have to keep moving forward, but they’re still afraid to give me more freedom. I think that’ll pass with time. How do you handle it? Oksana: I tell them that I want to be more responsible and more independent. They understand, but they still constantly ask me where I am, how I’m feeling and whether anything hurts. The past has left a big mark on us all. I try not to recall it and just to get on with life. Yes, it’s my past, it’s part of me, but I live in the present and I have a future. The past doesn’t need to affect it. Do you ever talk about your illness and reminisce about what you went through? Oksana: I don’t. Anton: No, we don’t recall it, we don’t bring it up and we don’t talk about it. Anton, what’s happening in your life? Anton: I work. In my free time, of which there isn’t that much, I go swimming and I exercise at the gym. I often travel for work. In reality, we don’t see each other that often. I live on my own. Do you feel like you’ve become closer to each other? Anton: We could hardly get closer than we are! We have the same star sign, Gemini. Our birthdays are next to each other, May and June. We share the same blood, and now the same bone marrow as well. Can you say something encouraging to the people undergoing treatment now? Oksana: Don’t lose hope. Keep moving forward and everything will work out. Take action and know that everything is going to be all right. Never give up. Gift of Life thanks all donors and supporters! Together we give children and young people like Oksana a better chance to beat cancer.