Our work Real life stories WE SET OUR FEARS AND ANXIETIES ASIDE – AND MANAGED IT ALL! Gift of Life often shares stories of the children in its care who are undergoing treatment at the Dmitry Rogachev Centre. Today, the Podari Zhizn coordinators at the Centre tell us about how quarantine went in one of Russia’s main children’s oncological clinics, what struggles its young patients faced, and what made them happy. How did the strict quarantine at the Rogachev Centre affect your department’s work and the lives of the children in the charity’s care? It must have been hard for the children since volunteers and relatives weren’t allowed to visit them. Elena Gubskaya, coordinator: The quarantine significantly changed the way we approached our work. My colleagues Ekaterina and Julia were able to come to the hospital and work from our little office while following all the coronavirus preventative measures. It was tricky to reassign duties so that we could make effective use of remote working while spending as little time as possible at the hospital. But we helped each other out and finally managed it. Julia, Ekaterina and Elena Working from home has pros and cons. Sometimes, there are difficult situations where you need to be onsite, at the hospital. For example, when an ill child’s mother is having a burst of severe anxiety and needs support, it’s best to talk to her face-to-face. It’s several times harder to handle instances like those over the phone. At first, remote lessons for the children were complicated as well. The online format had natural disadvantages, and we were very concerned about how to do everything right, how the children would react, whether they’d want to communicate remotely, whether they’d contact us, and whether the volunteers would still be active. But in the end, everything worked out, and we even discovered advantages to the remote format: you can talk to children in strict isolation who weren’t allowed to leave it or take part in department events even pre-quarantine. Now they stay in touch through Zoom on their smartphone, take virtual classes, and are aware that they’re not alone. Zoom master class with Elena and Dmitry For some of the volunteers, the quarantine period has actually made them more active, and it’s great. The volunteers help remotely; they join Zoom chats with the kids to teach them things, support them, send video greetings, or just make them laugh. This challenging time has brought us together, since everyone understands that cancer doesn’t take a quarantine break, and right now, the children need friendly social time and support more than ever, even if it’s through Zoom or WhatsApp. We have a six-year-old boy in the isolation unit who was really really looking forward to his birthday, and during the online classes he would always invite everyone to his birthday party. The volunteers backed this idea, and so we set up a Zoom party for the birthday boy with video greetings, and even our dogs and cats took part. We sent him our warmest wishes and it was fantastic. Wherever you may be, you can use a video call to share a little bit of love and warmth with someone. Even the tiniest message can make one of our small but very strong people smile. What were you and the children in your care able to learn during the quarantine? Dmitry Kudryavtsev, Rogachev Centre coordinator at the time of recording, now coordinator of Podari Zhizn’s volunteer projects: I haven’t been with Podari Zhizn for that long, and all this time I’ve been working under unfamiliar conditions, with many challenges. It would be easier to say what I haven’t learned. I’ve realised that I miss non-verbal communication, both with colleagues and with volunteers and children. It seems I’ll have to spend a long time getting used to that, and learning to live in the new reality. Dmitry I’ve seen how our children and volunteers have learned to take part in classes, and arrange games, concerts, and even dances remotely through Zoom. It’s not as easy as it might sound. The fact that you’re not there with the child and can’t get a proper sense of their mood is only part of it. You’re also “claiming” a completely different space. In essence, you’re competing with the Internet, with its endless supply of fascinating information. So volunteers have to “battle” this beast with its own weapons. That’s how our musical meet-ups started to feature songs by Artur Pirozhkov and Svetlana Loboda, and our volunteer storytellers have started to mix more Hollywood action into their fairy-tales. We’re learning, and I think we’re doing well. Julia Boleyninger, coordinator: Strange though it may seem, the quarantine has brought us new possibilities. Right at the start of the quarantine, we put up posters in every department of the Centre calling for people to not only participate in all our online activities, but learn something new. That’s how I ended up receiving messages from the children saying they want to learn the guitar, or even the ukulele. They took the initiative in telling us what they were interested in, and it was wonderful. Julia and Ekaterina searched for ukulele tutors on Facebook In hospital, the quarantine is long, whereas in Moscow proper, everything quickly opened up again in June. Were you scared to go back to the familiar, pre-quarantine life? Julia: The situation in Moscow changed overnight. One minute, we were planning a smooth and gradual end to the quarantine, and then the next all the main streets, promenades and restaurants were full of people. I wasn’t scared, but I was a little alarmed. I was worried for the people in high-risk groups: the elderly and those with chronic health conditions. After all, everyone has friends and relatives like that. I’m still worried, and really hope I can count on people’s common sense and self-preservation instinct. Other than that, I think that in the absence of drastic changes for the worse, we’ll all quickly adapt and go back to an ordinary, “normal” life, and we’ll lose our fears. Which of the rules introduced by the quarantine are going to be extended in the Centre? Ekaterina Kamentseva, coordinator: Of the new quarantine rules, there’s the mandatory wearing of two masks, the standard surgical one and the 3M mask, which looks like a respirator, as well as gloves, in the entire territory of the Centre. And, of course, gathering in groups is still forbidden. It feels very sad not to be able to spend time with people. Now, fortunately, the situation’s improved a little. The mask and glove rules are still in force, and volunteers aren’t allowed to come into the hospital yet, but there’s no longer that sense of tension that we felt during the spring. Because of the lengthy quarantine, I’ve especially wanted to take a holiday this year, just to go somewhere and be in different surroundings. Then, after the holiday, I’d want to meet up with everyone at my beloved job, face-to-face, without a screen in the way. To see the children and the volunteers. I want everything to get back to normal! Julia and Ekaterina donating blood How will work be organised in your department in autumn? Julia: We don’t yet know what autumn will bring us, and the uncertainty leaves us a little uneasy. During the quarantine, the parents and children were especially vulnerable. They couldn’t leave the Centre, or the department, or sometimes even the room. My colleagues and I did our best to help and to make their situation easier. The quarantine definitely brought some of us together. Katya and I took charge of helping with medicine. During the quarantine, it was difficult to get hold of medications which we all need in our everyday lives, like cold medicine or painkillers, and which the parents usually buy themselves. Volunteers from the Red Cross really helped us when it came to looking for medicines in pharmacies. We also worked to support all the children and parents who’d fallen ill with the coronavirus. Together with the Red Cross, we stayed in constant contact with the children, gave them the things they needed most, and did our best to be by their side. This year, Russian schools didn’t have a traditional graduation day. Instead, a nationwide “Graduation-2020” took place online on the 27th of June. What was graduation like at the Rogachev Centre? Julia: Like many things, graduation this year was unusual. When we were first getting ready for the online format, it felt sad. I was only able to take charge of organising it this year thanks to the girl coordinators and the volunteers. I really didn’t want a boring, formal online presentation with congratulations. But we had no idea how to make the celebration lavish and memorable in a Zoom conference call format. So we began to quietly prepare, trying to get the children and parents motivated. Coordinators and volunteers getting ready for the big day We were constantly in chats with the volunteers, thinking about what to do in order to delight and surprise our graduates over Zoom. We decided that the children would have to be beautiful and smartly-dressed even though everyone would have to celebrate on smartphones and laptops in their rooms. The staff of Podari Zhizn’s events department helped us find dresses and suits for the graduates, and invited famous performers and a host. The children got interested and began to gradually open up. Someone composed a poem, someone else decided to sing, and someone even choreographed a dance. In short, we decided that the celebration would go ahead, even if it was online. And then, a week before, the Centre’s epidemiologists gave us permission to celebrate for real, not via Zoom but in person at the guesthouse’s games room. We were both shocked and overjoyed. We had a week to rewrite the programme to make the celebration unforgettable. And thanks to the volunteers’ support, we set our fears and anxieties aside – and managed it all! The graduation day to remember We ended up with a splendid graduation day. To me, the most memorable part was releasing the balloons into the sky at the end. All of us, happy and satisfied despite the masks, were dancing and having fun right there in the main yard. The younger children who were allowed to walk around came and joined us, and so did their parents. Everyone came up to congratulate the graduates. It felt like not just a graduation day, but a real festival of life, uniting everyone who was at the Rogachev Centre that evening. Photos kindly provided by the interviewees and Podari Zhizn. Read our 2019 interview with the coordinators to know more about their work at the Rogachev Centre. And here is A day in the life of a coordinator with Julia Boleyninger from our archive. We can help more children beat cancer together! Please, visit our Donate page to support.