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Another Sonia's photo

Hello,
My name is Olya. Six months ago, our family received bad news. My beloved daughter Sofia who was 19 months at the time was diagnosed with a terrifying disease: cancer. Sonechka was born is enlarged left kidney. We were regularly taking her for control ultrasounds. In August 2009 she was found to have a tumor on her left kidney and was hospitalized for additional tests. However, she was incorrectly diagnosed with polycystic kidney disease of both kidneys. The time was passing by and the tumors were growing quickly. We were referred for treatment at Petrov Oncology Research Institute in St. Petersburg. There Sofia was diagnosed with nephroblastoma with spread to both kidneys. By now, my daughter underwent a course of chemotherapy and afterwards she will have a surgery during which one of her kidneys will be removed.
The treatment will not stop there. To continue therapy, my daughter will need to take Cosmegen (2 bottles will last two weeks). This drug is not sold in Russia and it has to be ordered abroad.
We came from Pskov. I am on a maternity leave, but after Sofia turned 1.5, I stopped receiving maternity payments. I am divorced, and the alimonies amount to 1,300 rubles a month. Please help my daughter receive appropriate treatment. I am sincerely grateful to you for your understanding and support of those in need.
Thank you!

Olya and Sonia Egorychev
Home address:
180014, Pskov
Lyubiatovo raion,
ul. Novgorodskaya, d. 14 kv. 60
Contact phone:
+7 (960) 224-43-82


 

Update as of May 20, 2010. The surgery on Sonia's second kidney was postponed. She was discharged home to regain her strength. Sonia feels well.
On May 26th Sonia and her mom will go to Petrov Oncology Institute for an examination and tests. Afterwards, the surgery will be discussed.

Update as of November 3, 2010. Sonia is now at the hospital. She is undergoing the third chemotherapy cycle. Two more cycles are planned. She feels rather well.

Update as of November 24, 2010. After a course of chemotherapy Sonia and her mother were home for two weeks, now they are back in the hospital for a next cycle. Sonia feels great. She is scheduled for tests in the next few days: ultrasound of abdominal cavity, X-ray, cardiogram, computer tomography of abdominal cavity.

Update as of February 4, 2011. On February 2, Sonia was admitted to Petrov Oncology Institute for 4th chemotherapy cycle. She feels rather well and plays with other kids at the hospital. Periodically her temperature rises. On Monday we will be going home.
Sonia's mom

Update as of February 15, 2011. Sonia is at home. Today her fever rose, she likely has a cold. Her hospitalization was scheduled for February 24th, but due to Sonia's illness it may be postponed.
Sonia's mom

Update as of June 7, 2011. In May Sonia had the last cycle of chemotherapy and all evaluations that were finished on May 20th. They showed remission. Sonia was allowed to go home. She will need to come for control tests in 6 weeks.

Update as of August 2, 2012. All was going well. Sonia was in remission, and we had 15 months of quiet life. Unfortunately, she had a relapse in her only kidney. If chemotherapy cannot destroy the tumor, then Sonia will have to have dialysis and will need a kidney transplant from a donor.
But we are hoping for the best. We are now at Petrov Oncology Institute. Sonechka had a cycle of chemotherapy.
Here is her new photo.
Sonia's mom

Update as of August 24, 2012. Sonia underwent an examination at Petrov Oncology Research Institute and began the second chemotherapy cycle. She feels well, runs about and plays with others.

Update as of November 12, 2012. We are so grateful to the AiF Dobroe Serdtse fund for buying the peritoneal dialysis machine for Sonia! The compulsory health insurance will cover the solutions for dialysis. The girl and her mother have come back to Lyubyatovo. Sonia is feeling just fine and is so happy to be home.
The girl will be getting Aranesp twice a month to sustain her hemoglobin count (Sonia has secondary anemia). The follow-up examination is scheduled for December.

Update as of October 16, 2012. Unfortunately, Sonia's second kidney could not be saved. She had a surgery to take it out. She is now recovering at Urology unit of Children's Municipal hospital No.1. For technical reasons, transplantation of a donor's kidney cannot be considered for a year. All this time Sonia will have to be on a peritoneal dialysis. It is currently done manually by her parents, but to improve Sonia's life quality and reduce the risk of infection, she needs a dialysis system, HomeChoice PRO, which is partcularly suited for pediatric dialysis. The system costs 203,400 rubles.

Update as of January 25, 2013. Sonia is at home in Lyubyatovo now. Once a month she and her mother come to St. Petersburg for examination. The last test showed that girl's blood count is within normal limits. Potassium level lowered. Sonia continues peritoneal dialysis on daily bases and takes Aranesp twice a month to maintain hemoglobin level. At present girl's primary disease is in remission. Sonia feels good. She may be capricious or difficult at times, but she is determined to recover, "We will cure the germ in my belly and everything will be fine", said the girl with confidence, adding, "Mom, I am thankful to people".

Update as of March 14, 2016. Last August Sonia developed a severe fungal infection which led to heart and lung complications. In addition, Sonia started having trouble walking due to peritoneal dialysis treatment. It was decided to switch her to hemodialysis and raise the kidney transplantation question again.
Sonia and her mother came for treatment to the Children's City Hospital #1 in St. Petersburg, since hemodialysis treatment is not available in Pskov. They need to rent an accommodation next to the hospital.
The Shumakov Center in Moscow, where the girl recently went through full medical checkup, is prepared to do the kidney transplantation from Sonia's mother. They are working on scheduling the date for the transplantation.
Meanwhile Sonechka is in St. Petersburg and is feeling fairly well.

Update as of April 29, 2016. At the moment, Sonia is at Children's Hospital #1. She's waiting for an isolation room to free up at the Shumakov Federal Transplantation Center in Moscow, to receive a kidney transplant from her mother. This is likely to happen in mid-May. Sonia is feeling alright, but is weak overall. She met and made friends with many children at the hospital and enjoys playing with them. She's also been enjoying playing games on her tablet, reading and drawing.

Update as of May 16, 2016. Finally, a decision was made to proceed with kidney transplant. Tomorrow Sonia and her mom will go to Shumakov Center in Moscow. It should take about a week to prepare for transplantation.
Sonia feels rather well, but she is a bit apprehensive about impending transplantation. Her mom is helping her see the positives: they will be able to live at home afterwards, she will feel better and will be able to walk anywhere on her own.

Update as of June 8, 2016. Sonia has recovered after the kidney transplant. Her mom who was the donor already had the stitches removed. The daughter will have this done soon. The doctors are currently deciding on the best combination of immunosuppressants to avoid transplant rejection.
Sonia no longer has a catheter and is very happy to be able to go to the restroom on her own. Her creatinine levels are lower and she is now feeling better. She is still on a very strict diet: no salt or sugar, only limited fat and carbohydrates.
Sonia has much more energy now: she wants to stay active and run around and she does so when she is outside. Even though the girl is feeling better, it will take some time before she fully recovers. She really wants to go home and if all goes well the doctors promise to discharge her soon.

Update as of June 30, 2016. Last week Sonia was discharged from the hospital and she is now at home in Pskov. Once a month she has to come to Moscow for a transplant specialist examination.
The girl feels well. She is more active then before and very happy that she can go to the bathroom unassisted.
Sonia takes Prograf and Myfortic immunosuppressive medication, and still sticks to a strict diet, while her appetite is very good due to the hormonal therapy.
In order to make her kidney work properly, she is required to drink a lot of water - up to two liters per day.

Update as of August 4, 2016. It was agreed that Sonia would undergo control testing in Saint-Petersburg and travel to Moscow only for ultrasound scans and transplant consultations. All seems well for now with Sonia as she continues her course of treatment.
Sonia is now at home in Pskov, is recovering quickly and feels alright. The young girl has boundless energy and wants all that is interesting. Her mother has not seen her like this for a long time.

Update as of September 12, 2016. Sonia is still at home, in Pskov, but she travels twice a week to St. Petersburg for tests of concentration of Tacrolimus in blood. She will also travel to Moscow in the near future for control tests and a consult with a transplantologist.
Sonia is feeling well, is active and spends a lot of time playing. This year she started first grade at school; she will be studying at home. So far, she is very excited about studying and enjoys everything about it.

Update as of November 4, 2016. Sonia travels to St. Petersburg for testing twice a month, and the last test included ultrasound and x-ray as well - the results were normal.
Possibility of a trip to Moscow will be decided after the November holidays: examination and calculation of individual dose of immunosuppression have been planned for the visit.
For now, Sonia receives azathioprine, transition to another immunosupressor - Certican - is in plans.
Sonia is now at her home in Pskov. She feels well and is an eager learner. She reads already very well and writes better and better every day.

Update as of December 4, 2016. Sonia's trip to Moscow for further tests was delayed again. Sonia remains at home, in Pskov, and is feeling well. She's very excited to do school coursework with a teacher and less excited to study on her own. She also really enjoys singing and dancing.
Every ten days, the girl and her mother travel to St. Petersburg, where Sonia undergoes blood testing and additional tests for presence of immunosuppressants in her blood. All tests are within norm. Sonia's Certican treatments were covered by her local health administration.

 

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