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Hello!
I am the mother of Shedi Buneb. My son has an unusual name because his father is from Tunisia.
Shedi was born in 2003 in St. Petersburg. When he was 1.5 months old we went to live in Tunisia, my husband's home country. We were only coming to Russia in the summer to visit my parents.
Two years ago my son and I came to St. Petersburg, and then my husband said he wanted a divorce. That was preceded by four years of poverty, misunderstandings and loneliness in a foreign country.
It was very hard for my son to be separated from his father. This pain is still with him.
Getting used to life in Russia was a challenge. During the two years I managed to improve my son's health. He grew up and learned a lot. He was one of the best at pre-school.
My son and I decided to be strong because there's no one to help us. I changed my profession and started to move up the ladder at work so that I could support my mother and my son. Though bringing up my son alone, I tried to teach him to be strong like a real man. And when he said to me two years later, "Let me help you with your bags, I am a man after all and you're weak, I am supposed to help you", I realized my efforts were not in vain.
Shedi is a strong, caring, stubborn and extremely active boy who did ballroom dancing and was going to do karate and chess this year. He loves educational TV channels as well as construction kits and modeling.
My son's dream was to become a ship captain. We were thinking about going to the Nakhimov Navy School although I knew there's a long way to go. In order to learn to be strong Shedi went to a summer camp last summer. An insignificant trauma at camp caused leg edema which we did not even notice right away.
For two months the doctors were sure it was a fracture. But in September Shedi could not go back to pre-school because he could hardly step on his leg. That same September I was fired. That did not upset me: I was sure I would find a new job no problem. Two days later I was told at the Pediatric Academy that my son had sarcoma.
I thought my son and I had already had all trouble in the world. But no. Ewing's sarcoma of the calf bone. After my son was admitted to the Petrov Research Institute of Oncology it turned out that the bone already had two pathologic fractures which appeared during the examinations. This was the second blow. The third one was numerous lung metastases which could not be removed due to their number and location.
Before hospital I managed to get registered at the unemployment service so that I could get an allowance and try to find a job. During the first chemotherapy course I realized I could not go to work and ask my mother to stay in hospital instead of me. My son became irritable and moody because of the physical pain and all those painful manipulations. It would be too hard for my mother. Shedi could not step on his leg and spent a lot of time in my lap even though we had a wheelchair.
Not only do we believe that Shedi is going to recover, we are sure of that even in spite of the fact that the doctors are not giving any promises. But there's a long way to go. The treatment course is going to last for a year: 6 chemotherapy courses, surgery to remove the damaged bone, bone marrow transplantation, radiation therapy.
We have no one to rely upon. My ex-husband did not offer help even when he learned of his son's disease. He has never paid us any allowance and is not going to do that either.
It would be possible to live on my unemployment allowance and my son's pension if it wasn't for the need to buy drugs. And for that I have no money, because drugs are very expensive I have no money for the food my son needs either.
Shedi is already past four chemotherapy courses. All of them lead to complications. After the first course, much to our great joy and the doctors' content, lung metastases were gone. After the second chemotherapy course liver problems were revealed. A strict diet was prescribed to take care of the liver. Recovery after each chemotherapy course is lengthy and difficult.
On January 14, 2010 my son had a surgery whereby his calf bone was removed. Now he is recovering after the surgery and the last chemotherapy course. He has already been allowed to walk.
Now there's bone marrow sampling at the Raisa Gorbacheva Center in store for us.
We believe that we will cope but we need help because faith alone is not always enough.
Please help our family!

Respectfully,
Tatiana Vladimirovna Buneb
Shedi's mother
Contact phone:
+7 (921) 599-71-70

Update as of March 7, 2010. Shedi finished the fourth cycle of chemotherapy and he is now recovering. After the first cycle, the metastases in his lungs disappeared, but he needs two more cycles of chemotherapy to strengthen the results. Afterwards, he is planned to undergo autologous transplantation.
Shedi is now at BMT clinic, as he needs to have his cells harvested for autologous transplantation, but due to low blood counts it is not yet possible. It is very likely that Shedi will continue his treatment at the clinic, since after a surgery on his leg, he needs care of a specialist to recover lost function and such specialist is not on staff at Oncology Research Institute.
Shedi's mom had to order special orthopedic shoes for the physical therapy and purchase mats for massage.

Update as of March 30, 2010. Shedi's cells were harvested for transplantation. He underwent another course of therapy with Vepeside and is now in cytopenia, as his blood counts plummeted. Shedi received two transfusions of blood components and receives antibiotics several times a day.
Shedi is continuing exercising despite pain and his efforts already brought certain results - he started walking by himself, and he regained movement in his arm. Shedi is trying very hard!
Shedi's mom

Update as of April 30, 2010. Shedi recovered after a cycle of chemotherapy. After the planned examination, he will undergo autologous transplantation (in mid-May).

Update as of May 23, 2010. Yesterday Shedi underwent transplantation. He did not tolerate the procedure well. Today he is feeling better.

Update as of October 4, 2010. Shedi is at home and he feels well. Recent isotope test showed that he is well, but an x-ray discovered osteoporosis. Shedi goes for physical therapy and biofeedback at the rehabilitation center and plans to begin performing arts classes.
On September 1, Shedi started 1st grade. His mom is very grateful to everyone who has helped them at the difficult times, particularly Evgeniy Zelenov.
They are able to afford Shedi's treatment costs and Shedi's mom is asking their supporters to donate to other kids, those who are in most need.

Update as of November 10, 2010. The planned x-ray showed presence of microscopic lesions in lungs (to 2 mm). It was decided to biopsy them. Shedi is now at the hospital, preparing for the surgery. Tomorrow he will have a lumbar puncture and bone marrow biopsy. Unfortunately, he has low platelets, but his doctors are hoping that in a week (the surgery is scheduled for November 16th), they will rise somewhat. The surgery will be covered by a quota.

Update as of November 24, 2010. Shedi had a surgery, and one lesion was removed and sent for histological evaluation. The result of the evaluation: calcinate, and there are no live tumor cells. Lung perfusion was cancelled; the need for further treatment is being discussed.

Update as of June 25, 2011. Based on examinations results Shedi is in remission. The boy is feeling fine. He is now spending the time in the country.

Update as of October 22, 2011. Shedi is studying in the 2nd grade with other kids, but with an extra day off as he gets very tired. He feels well and the tests done in early October at Oncology Research Institute showed that everything is well. The next round of tests is scheduled for January. Shedi's mom got married and in February he got a baby sister. According to Shedi's mom, he jumped from joy!

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