The tragedy came to our house on the Independence Day of Russia, on June 12: “Mama, there are two of you”, — Masha said on that day to my wife. We ran to the doctors, visited ophthalmologist, neurologist, neurosurgeon. We did test. When we were given MRI results, we felt as if our legs got numb: one hemisphere of the brain is bright, and the other one is dark, as if huge smudge was spilled and covered everything. Doctors verdict was: anaplastic ependymoma. This is malignant tumor, that wrapped around central stem of the brain.
On July 23rd Masha underwent surgery to partially remove the tumor. It could not be removed completely, as our daughter’s condition did not allow that: she lost lots of blood. After the surgery she underwent the course of chemio and lazertherapy. Masha is being discharged from the hospital at the beginning of Septemeber.
In order to kill the rest of cancer cells, Masha needs to take medication Thermodal. Monthly course (750 miligrams) costs 45,000 rubles ($1,450). This medication must be taken throughout the whole year. We have a large family, twins Masha and Lisa are 4 years old, older Dasha is 15. Both me and my wife work full time and our combined income is 18,000 rubles a month ($580). We received disability for Masha in August, that means that her information will be in the database only in about one month. Then our local health department authorities will issue the request to receive Thermodal and we all be waiting to receive approval. There is a child in our hospital right now, whose parents were trying to receive this medication from the approved local government budget. It took them 4 months to do that. During that time their child’s condition got worse, he got paralyzed. I personally made appointments to the head of our town, but no results until present time. Union at work is also just promising everything to be done “next day”.