Our six-year-old patient Dasha Ryzhakova is a great inspiration! She had to leave her hometown of Saratov in southwestern Russia and go through a long-term cancer treatment and surgery in a Moscow clinic. A large tumour – ganglioneuroblastoma – has affected the lumbar-sacrum section of Dasha’s spine, which made any operation extremely risky. Therefore, it was so important to get help from a surgeon with extensive experience in this area.
Dasha’s surgery was performed by a specialist from Germany, Professor Ulrich Tomale, blessed with golden hands and years of experience. The operation took place at the Dmitry Rogachev Centre in Moscow and it’s with thanks to the support of Gift of Life’s donors. Multiple donations ranging from £5 to £1,000 made it possible to raise the entire sum and cover the surgery costs. If you hadn’t helped us raise this Dasha’s life would have been at stake. The power of ten has worked yet again showing that every donation from the modest to the significant is important and can change the life of a seriously ill child and their family. We talked about this life-saving effect of collective help with Dasha’s mum, Venera.
Dasha was diagnosed with ganglioneuroblastoma in summer 2017. How did the treatment go and what was the most difficult part of it for you?
At first, my husband and I were so shocked that we couldn’t process how serious the diagnosis was. The doctors at our local hospital were unable to treat such a dangerous tumour as they simply didn’t have the right expertise. They could only offer to monitor Dasha’s condition, but they could not cure her or advise where else to turn for help. Now, I would have immediately searched for other clinics and doctors but in the immediate aftermath of her diagnosis we were just lost. Eventually we managed to get Dasha to Moscow’s Dmitry Rogachev Centre, the most-advanced paediatric cancer clinics in Russia, by which time she already had immense pain in her legs as the tumour compressed her spinal canal.
The most challenging part of Dasha’s therapy was the first three chemotherapies at the Centre. We didn’t know how our three-year-old would react this therapy. It was so hard for her. Dasha could not eat on her own and had to use feeding tubes. It was incredibly, devastatingly worrying and sad. I was really scared on the day when she was operated on because of the risks associated with a surgery on a spine. A surgeon had to do the fine job to completely remove the tumour and not to disrupt the spinal nerves. We were very lucky to have this brilliant German specialist helping Dasha.
What gave you support to overcome this trial?
The hardest times were at the very beginning of Dasha’s treatment. Her attending physician offered me a support session with a psychologist, but I refused as I was not ready for that. Instead, I received much support from other mums in the hospital. We shared our problems with each other and gave friendly advice. These conversations helped all of us to navigate through that difficult period in life.
My husband was very supportive too. He phoned me every day and tried to visit me and Dasha in the hospital as often as possible, although the journey from Saratov to Moscow takes 16 hours by train.
I felt that I was not alone, and this helped my confidence. I knew we would deal with this, and then everything would be okay. Of course, it was a challenge for me, and I cried sometimes but always made myself calm down before going back to the ward, so Dasha did not see it. I concentrated on her routine, the practical, to distract me from upsetting thoughts. I set myself up positively, and it worked.
Dasha with her family
Your elder son Ilya was 11 years old when Dasha fell ill. Did he realise how serious it was?
Ilya knew that Dasha had a tumour and needed a surgery. However, my husband and I decided not to tell him it was cancer. When Ilya and his dad visited us at the hospital, he asked why there were so many children with bald heads around. I replied that the treatment affects the body in such a way that the hair falls out. No other questions followed. Now Ilya understands that Dasha still needs constant medical tests and consultations. Dasha undergoes an MRI and CT scan in Saratov once every three months, and once a year she goes to Moscow for a consultation with an oncologist.
I see that Ilya has become more restrained in showing emotions during the time while Dasha and I were undergoing treatment in Moscow. Ilya and Dasha are friends, they can play together despite the age difference. Ilya is 14, and Dasha is six. Perhaps it was a defensive strategy when Ilya refused to ask more questions about the sister’s illness. Not many children and even adults are ready to hear that their loved ones have cancer.
How did Dasha’s illness affect other members of the family?
I tried to keep it quiet among friends and family, and it was only my husband who knew about the downsides of Dasha’s treatment. But this does not mean that the family was on the sidelines. We constantly felt support, particularly when it came to caring for my eldest son Ilya. During school term, Ilya was looked after by his dad and his granddad, my husband’s father. In school holidays he stayed with my parents in a village, roughly three hundred kilometres from Saratov. My brother and my husband’s sister also helped us a lot, and the whole family tried to support us. Even our classmates and friends helped whenever possible: they took Ilya for walks with their children so they could play together. We have formed a real support group. I was reassured that Ilya was looked after, and that he was doing well at school.
Dasha with Ilya, their grandparents and cousins
Tell us about the day when you and Dasha finally returned home after 10 months in the hospital.
It was both joyful and a bit scary. On that day, Dasha and I had our first plane flight. I was afraid of flying, but it would be very difficult to travel to Saratov from Moscow by train, because of an incident just a day before we had to leave the hospital. While I was packing for the trip, Dasha was spinning around all the time, wanted to help me, somehow sat down on a wobbly chair, fell, and broke her leg. I was in shock. We stayed in Moscow for a day to do the x-ray and apply a plaster cast. On the plane, Dasha fell deeply asleep upon landing. And together with the crew we unloaded her sleeping from the plane with her leg in a plaster cast. While we were driving from the airport, Dasha was still asleep, and I only woke her up at home. My mother and all our brothers and sisters came to ours to welcome me and Dasha.
How did you and Dasha cope with daily life after the hospital?
As she’s so young, Dasha doesn’t really remember the hospital and the long treatment. And I just could not believe at first that I was finally at home. Then household chores, caring for the children and especially helping Dasha to recover from the fracture made my new routine. It was more difficult to deal with anxiety though. In the Rogachev Centre, medical help was available 24/7. There is no such luxury in Saratov, no specialists to turn to for advice, and at first, I was scared for Dasha. I’ve managed to overcome this fear, but it took some time. Now the doctor we are seeing in Saratov can receive a teleconsultation from a specialist from Rogachev Centre if something looks questionable in Dasha’s MRI and CT scan results. This is in addition to the annual face-to-face consultation at the Rogachev Centre.
The broken leg took a while to recover. Dasha wore the plaster cast for almost two months as the crack in the bone healed slowly after chemotherapy. Then Dasha had to learn to walk again regardless of all her fears and pains. It took about a month and a half. All this time, Dasha rarely had a chance to play with other kids. It happened only when our friends and siblings came to us with their children. Dasha then could not walk yet but was so excited to take part in all children’s games, even if she was sitting. It such a joy for her!
Dasha has not yet outgrown the fear of falling after that fracture. She walks and runs carefully. To improve her fitness, I take Dasha to a swimming pool, and now she loves it. Diving scares her still but it’s a matter of time. “For now, you can just swim, and as you gain strength you will learn to dive,” I keep encouraging her.
What are you plans for school?
In October, Dasha starts pre-school so that next year she can be a first-year student. I see how difficult it is for Dasha to concentrate and read the ABC book now; after five minutes of reading, she already switches to dolls, toys, or drawing. Dasha loves cats very much and often draws them. She even drew me as a mother cat.
Why cats? After all, you only have a fish tank at home.
Her love for cats developed because of her grandfather’s cat and has grown into a dream of taking care of cats, raising and feeding them. I have explained to Dasha that she could become a vet and treat cats, but she’s a bit young to think so thoroughly about her future profession yet!
Thanks to the contributions of our friends, for over ten years Gift of Life has been helping children like Dasha to fight cancer and other serious diseases. Why is being helped and helping others is equally important?
By supporting a child’s medical treatment as it was in Dasha’s case, people do so much more than helping this one child. They also make their parents, siblings, and grandparents happy, because a child’s illness is a grief for the whole family. You also feel happy and rewarded when you help people in such a difficult moment, even if these people are complete strangers. I believe that all the good vibes and support return to you when you need it most.
It is also crucial to tell openly that you support those in need in order to attract more people to charity. And you need to teach children from an early age about the importance of unconditional good. By sharing what we have we can save lives that would otherwise be lost. I am frightened to think what would have happened to Dasha and our family if that live-saving surgery done by the German professor was not paid by Gift of Life. He has golden hands, and he saved our little girl. Many thanks to all the donors of the charity for helping children stay alive!
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