In today’s Power of 10 feature we’re delighted to share the story of Dima Zhagrin, one of the hundreds of patients Gift of Life has helped in our 10 years of operation. In 2018 Dima was diagnosed with acute lymphoblastic leukaemia. When he developed a severe allergy to standard chemotherapy, Gift of Life raised funds to provide Dima with an alternative – the rare and expensive medication Erwinase, which is still unavailable in Russia. The course of Erwinase for Dima cost almost 1.5 million rubles (£16,969), money Dima’s family simply didn’t have.
With the help of our donors Dima received his life-saving treatment. Most of the funds were raised by long-time friends of the charity Irina and Vladimir* who donated their joint birthday to support Dima, yet again testament to how joining together can help a child to survive cancer! Dima is at home now; his physical condition has greatly improved. We had a chance to speak to Dima’s mum, Irina Struzhkina, about the difficulties of fighting cancer and the challenges the family faced.
Irina, what did you feel when you found out Dima’s diagnosis?
When Dima was diagnosed with acute lymphoblastic leukaemia, my whole world seemed to be falling apart. My boy was under four years old! I was deeply shocked and traumatised by the news. When I realised that the treatment would be very difficult and unpredictable, feelings of guilt, helplessness, insecurity, and fear were all eating me. I was so heartbroken that tears could not heal the wound – I wanted to scream with pain! But I could not show my feelings when Dima was around. As a mother, I had to protect my son and give him confidence and care. Despite all this adversity, it was a must to stay positive and pray for the best, and we’ve made it!
What was the most challenging aspect of being in Moscow during Dima’s treatment?
It was difficult to accept the situation and maintain emotional balance, to rationally assess your position. I was trying to adjust to living day-by-day and not to make plans too far in the future. Cancer is a very insidious disease. Dima did not always respond to chemotherapy as expected, and the side effects of cancer drugs and concomitant diseases were hard to deal with.
Dima had a severe adverse reaction to standard chemotherapy and needed an expensive modern medicine, Erwinase, the course of which cost about £17,000, and not publicly available in Russia. Can you tell us about this?
The prescription was completely unaffordable for us. Our entire flat is worth approximately £17,000, the same as the course of treatment! (Dima’s family lives in a village in the Vladimir region, 100 km from Moscow – ed.). Without the support of the charity, we would have been pushed to sell this flat and become homeless. When Dima fell ill, it took a three-month search to explain the cause of his deteriorating condition; all our wages and savings were spent on medical tests. I had to quit my job and devote myself to taking care of Dima. My husband was the only breadwinner at that time. So, when acute lymphoblastic leukaemia was diagnosed, our financial means were close to zero. I was in despair and asked my relatives and friends for support.
The price of Erwinase is prohibitive for ordinary Russians like us and without the donors’ help we would not have been able to afford it. When Dima got sick, we realised that there was no such thing as ‘other people’s children’, and issues can only be resolved by teamwork and joint effort. We are endlessly grateful to everyone for giving us a helping hand and caring about our son when he needed it most. We are stronger together – this is not a slogan, but a principle that should be followed in life.
* In 2018, Gift of Life supporters Irina Kargina and Vladimir Tsarenkov, donated their joint birthday to the charity to fundraise and to help Dima. This enabled Gift of Life to pay for Erwinase, an expensive chemotherapy medicine unavailable in Russia so Dima received a life-saving treatment on time. Irina and Vladimir have provided Gift of Life with their generous support from the very beginning and have helped many children recover from cancer!
Gift of Life donors helped pay for Erwinase for Dima. Our sister charity in Russia, Podari Zhizn paid for the rest of the therapy, and provided you with accommodation for the outpatient treatment. It was a shared apartment for several families whose children were supported by the charity. How was that experience for you?
Everything went smoothly for us. Despite the trauma each child had to deal with, their parents did their best to support other families around: helping with groceries, cooking for the children and look after them – everyone tried to do their part and to help others.
We are still friends with some families we met during our stay at the charity apartment. And we stay connected despite a long distance between us. We are especially close with one family we lived together with for seven months. Their girl is the same age as Dima, both were born in the same month. This made them stick together and gave comfort to deal with the treatment that was both physically and psychologically demanding. They had their own small, childish world with games, cartoons, communication on an equal footing. Because of that Dima did not feel completely isolated which I was very happy about.
Dima was only 3 and a half when he fell ill. How did you explain to him that all those painful medical procedures were necessary?
Dima wanted to live without pain so much that he had a lot of courage in trying to go through all medical procedures, he followed the recommendations given by the doctors and adhered to the necessary restrictions. He had a dream to return home to his dad, family, and friends; return to a happy childhood without tears, pain, and complicated medical procedures. He sincerely believed that the doctors would help, and his dream would come true.
I remember how we celebrated Dima’s fourth birthday at the hospital. Not only the doctors came to cheer him up and give presents, but also clowns and animators who volunteer at that hospital. It was a noisy celebration – and immediately after his party Dima had a chemotherapy with a five-hour continuous drip. He survived everything. Dima, after all, has had some allergies since a very young age and is used to many restrictions. If something is necessary, he won’t protest.
Chemotherapy is a trial. How did you cope? What gave you the strength to support Dima?
I’m a trained medical worker so in a sense I’m prepared. I was a paramedic, a first responder, for three and a half years before becoming a nurse in the female narcology department. So, I understood that each type of cancer has its own treatment protocol, which is constantly being improved, and chemo is not something to be afraid of. But I was still worried not knowing how Dima would react to certain medications. The doctors did their best to support me, to keep me calm, to boost my confidence in positive outcome of the treatment.
Our doctors are great professionals: they know how to apply the standard protocols to different patients, considering the individualities and complexities of each case. They will always take the time to explain test results and talk about upcoming procedures and the risks associated with them. I realised that the support of your doctor is a powerful force that actively contributes to the success of the treatment.
How did this illness affect your loved ones?
The news of Dima’s illness was stressful and upsetting for everyone. Throughout the treatment, our family and close friends always tried to be there for me and Dima, ready to put anything aside and rush to the hospital when certain food, clothes, or medicines were needed. Nobody was left out. Dima’s diagnosis gave us a reason to revise what is important in life. What used to be a problem is often perceived as a trifle now. The main thing is that we are all together and support each other.
Who supported you most in this ordeal?
My sister Zhenya helped me a lot. We have been very close since childhood. Dima is Zhenya’s only nephew and godson, and she loves him so much. During the treatment, Zhenya kept in touch with me day and night. She was my psychologist, courier, coordinator – there was nothing she couldn’t do to help. It was Zhenya who kept other family members and friends updated about the course of Dima’s treatment and his condition. The doctors let her in Dima’s sterile ward when I had to pop out to collect test results.
Dima and Zhenya in Moscow
It turned out that Dima was diagnosed on the eve of Zhenya’s wedding. Zhenya cancelled the celebration dinner, it was just a formal registration ceremony. Dima and I, already in the hospital, sent her flowers to the registry office. Zhenya burst into tears when she leant that the flowers came from Dima.
Zhenya was with us at the hospital more often than Dima’s dad. He had to work and carry out a refurbishment on our home, preparing it for Dima’s return. It was actually in a way easier for me when we rarely saw each other. We were both extremely worried about Dima’s health problems, and each parting after a hospital visit was not easy for us.
Dima with his parents
What helped Dima to escape from the hospital routine?
Dima was very fond of and still loves playing with cars and model kits. In the hospital, he enjoyed building Lego cities and turning the ward into a playground. The volunteers helped a lot arranging leisure activities for children at the hospital and trying to keep them busy, in fact it’s part of the rehabilitation. When the doctors allowed, Dima and I tried to spend more time outdoors walking in the parks and going to playgrounds closest to the hospital. The world is completely different outside of the four walls of the hospital. Seeing life from a different perspective is important because childhood should be childhood despite the illness. And how happy it will be largely depends on adults.
Was it difficult for you to return to your normal life after a long treatment?
The three months after discharge from the hospital were the hardest. The final days of chemotherapy fell in the first wave of the COVID-19 pandemic. When Dima left the hospital, he had extremely low levels of immunity. We were all very worried, ultimately about Dima’s life. When the time came for the medical examination, the Moscow clinic was in quarantine. There was no way to get there for a consultation or tests. Luckily, we were in touch with our haematologist and arranged a virtual consultation, while the tests were done at the local hospital. The necessity to maintain social distancing made it even harder on Dima. It took us a whole year to get back to normal.
What was Dima’s favourite pastime?
Dima is a creative type and has great imagination. He loves to do crafts, to draw, to make gifts for friends and family with his own hands using a wide range of materials from water to sand and even mud. From any available means, he can create a lively play space. He is so not into gadgets; he prefers outdoor games and live activities. And he still enjoys playing toy cars and building something big with modelling sets.
How is Dima doing at school?
This year Dima started primary school and fell in love with mathematics. He really likes solving maths problems and finding answers to logical questions. For us, Dima’s study is an exciting thing and a new page in life. I am glad that he made friends with classmates. He is sociable and it helps. Recently, he even made some Christmas tree decorations using a 3D pen and gave it as presents to his classmates.
The festive season is coming. Has Dima shared his Christmas wish for you to pass on to Santa?
Dima dreams that all people will be healthy, the lockdowns will end, and we can go to the circus, visit theatres, and travel the world without fear for our life.
Many children are still now being treated for cancer and other serious illnesses under the care of Gift of Life. What would you say to their parents to support them in this trial?
Everyone who has known the sorrows of a life-threatening disease would wish you to fight fearlessly and despite all adversity to live like no one else, taking advantage of every minute, enjoy every moment of life knowing how precious it is. Love your child as he is, giving your maximum support, care, and attention, and wishing for the best. Hard times will surely pass, and all the best things will come to your life!
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