Mom forever

When Marina’s five -year -old daughter was dying, she was a “house with a lighthouse” with her. When Alena was gone, the children's hospice remained nearby. And still helps Marina survive what is impossible to survive

Help a house with a lighthouse help

“I breastfeed her until one and a half years, and up to two and a half she slept with me. Just two weeks before, I transferred it to a separate bed, but then we got to the hospital - and since then we have always slept together. She hugged me, put her hand on her chest, and only so calmed down. " Marina is sitting in the kitchen of a rented apartment. The kettle boiled for a long time, but she does not remember about him. Looking for Alena's photographs in the phone. Frantically leafing through the photo album. Her voice trembles. Fingers tremble.

Alena was two and a half when she fell on the playground and hit her head. Marina took her to the Morozov hospital - to check if there is a concussion. There was no. But the neurologist, feeling the girl, was surprised why one leg is denser than the other. “Ah, this is a scooter,” said Marina. “She doesn't part with him.” And after a couple of weeks, Alena began shortness of breath, the girl became very difficult to breathe. They called an ambulance, made an X -ray. It turned out that one lung does not breathe at all. Doctors thought: pneumonia. But when they took a puncture, it became clear: it was not her.

The alveolar rabdomyosarcoma of the right lower leg with metastases in the lungs, popliteal lymph nodes and bones, the fourth stage - such a diagnosis was made by Alena a month later, which he and his mother spent in the hospital. “Then I did not even know the word“ metastases, ”says Marina. “The doctor immediately said that the forecast is bad.”

"So comfortable"

“I was really waiting for the first chemistry, I thought she would help her right away,” says Marina. She approaches the kettle to pour boiling water, but turns around and forgets about him again. - I remember this shock when we came to the oncological department: Alena and I went along the corridor, and there are bald children everywhere, most of them have brain tumors, they all sit and look at one point, all under the droppers. And she jumps pleased. "

The first course of chemistry gave a good result - the tumor on the leg decreased markedly. After nine courses of chemistry, there were three months of radiation therapy: they irradiated the leg, the vertebra and the lungs. Then they performed the operation: Alena removed the lower leg muscle and the calf muscle, but the surgeon was able to save the ligaments, and after three weeks the girl rode on a scooter again and danced.

Marina holds in her hands an archive photo with her daughter photo: Julia Skorobogatova for TD

Alena never had time to go to the kindergarten - there was a hospital instead. She got used to the doctors and calmly took tests, lay without anesthesia for two hours on CT and PET (positron emission tomography. - Approx. TD ), silently tolerated the droppers. And in the evening, before going to bed, I fit with my mother on a narrow hospital bed, hugged her and said: "So comfortable." “This phrase, Lord, still rings in the ears,” says Marina.

And then the metastases increased again and Alena assigned the second line of chemistry, six more courses. Marina went in parallel at consultations to other hospitals. She wrote letters abroad. At first, the Morozov hospital refused Alena, then the Kashirka, then the center of Dima Rogachev, then the foreign doctors. Everyone said the same thing: nothing can be done. And then they were taken to the GBUZ "Scientific and Practical Center for Specialized Medical Assistance to Children. V.F. Voino-Yasenetsky ” for experimental palliative chemotherapy.

“After the thirtieth chemistry, I lost my account,” Marina squeezes an empty mug and phone in her hands. - In Solntsevo, they began to drip a new type of chemistry, it seemed to help, and we decided on another operation. There was one doctor there, she told me: do not torment Alena, leave, no more operations, they will not help. But I did not listen. While there was even the slightest chance, I had to act. ”

Alena was getting worse. Then again the irradiation and chemistry of the new generation in tablets. “For the first time in two years, we were released home, because it was no longer necessary to drip. And for the first time in two years, Alena began to grow hair. True, gray -haired, - recalls Marina. - A five -year -old child with gray hair. But for the first time we were at home. ”

“The last PET was very bad. The doctor called and said that we have a negative dynamics, that everything is glowing. Stop treatment, he says, this is the end. I myself understood this. And we stopped. "

And then the pain began then. Alena, who has never complained about pain in two and a half years - neither after operations, nor during analyzes or chemistry, she began to scream.

“My heart stopped from this pain of her. I did not know what to do. The ambulance was working on tramadol, and even he did not help. I was in the next world from horror. And then they called from the "House with a Lighthouse". "

"I'm ready"

“After the call, not even a day has passed, as we had everything,” Marina squeezes the mug and looks at the ceiling. - Literally everything. The next day, half of the one -room apartment - that one more - was clogged with equipment, masks, medicines. Yesterday, my child yelled in pain, and the next day we had a relanium, tramadol and morphine. ”

Around the clock with Marina in touch was a doctor from the “House with a Lighthouse”, he suggested what to do. “To increase, increase [dosage] all the time, if only there was no pain,” Marina squeezes an empty mug stronger and stronger. - So they think in the hospice, and they are right. Alena’s pain was so severe that she, such a brave fighter who never complained, began to just yell. And on painkillers, she calmed down and sat down to draw. ”

Marina holds in her hands a portrait of Alena photo: Julia Skorobogatova for TD

Alena always dreamed of getting to the water park. The doctor allowed them to go. Marina gave her morphine at home and took him with her. “She lay in a jacuzzi in my arms, already stinking from Morphine, and said:“ Mommy, how good. ”

It was the end of December.

"This is my last gift for the New Year, Chick-Chick!" A beautiful smiling gray Alena on the video hugs a toy in the supermarket. This was shot as a joke - as evidence that all gifts were presented and no more should beg. The child, whose entire PET shone, like a Christmas tree, smiles happily at his mother in camera. "The last gift." Marina stops the record on the phone and turns away to the window.

Alena overslept the New Year. Marina all this time lay with her in an embrace. “Only I got up, she woke up, called me, and I was returning,” Marina says gritting her teeth. - And on the second of January she woke up, sat down and asked for meat. I ate, fell asleep again. I slept longer every day. ”

On the night of January 9, Alena moaned through a dream: "I'm tired, let me go." The next morning was the first working day after the holidays. "The husband went to work, she ate, looks at me and says:" Mom, I'm ready. "

What is the stage of dying, Marina already knew, so she immediately called the hospice. Soon the doctor and a nurse from the "House with a lighthouse", then the husband arrived. They were nearby when Alena gradually stopped moving, speaking, breathing.

“The doctor and the nurse from the hospice stayed with me and kept all the negotiations with the clinic so that they arrive and give an imprisonment,” says Marina. - Then the police, then the investigation team, then the forensic expert. I would not have done it myself. She was taken only at 9 pm. She lay there, covered with a sheet, my child. Different people went around, the forensic expert poked in it with instruments. Then the doctor and I washed her, he told me what to do, how to raise it and turn it over. This was so much concern - in how they helped me. "

“If not for the“ house with a lighthouse ”, I don’t know how I would survive her care,” Marina gets up to turn on the kettle again. - These last weeks, when we were under the care of a hospice, were the only time in two and a half years of treatment, when I did not feel abandoned. Nowhere I saw such attention. For each question there was an answer, professional and at the same time human. They were around the clock in touch. ”

During the illness of Alena, Marina and her husband were very far from each other. The apartment was the property of her husband, and Marina had to move out. It was urgent to look for work after a six -year break.

So Marina at once remained with nothing. There are not even friends left. “They just did not know how to talk to me,” Marina pours tea into cups. - Even mom could not talk normally. Nobody understood me. Girlfriends with children told something about their own, and when I started to say something about Alena, they just fell silent in response. And this awkwardness arose. Then I myself once again tried not to mention Alena. And then not to meet again. And you are left absolutely alone. ”

Let go

“For the first five months I could not cry,” says Marina. -I just ran like a chicken with a severed head: I was looking for housing, work, I did something on the machine. Just not to think. But it does not go anywhere. Only deeper into you. ”

And then the “House with the Lighthouse” suggested Marina his psychologist, Alena Kizino. At the first session, Marina cried for the first time. And then she went on the day of memory that the hospice suits every year. Together with other parents of deceased children, they landed a whole apple garden. Marina shows a photograph, on her a young tree with a sign “Alenkina Apple”.

Marina and Alena planned to come to the Kolomenskoye park when apple trees bloom : Julia Skorobogatova for TD

Then Marina twice went to the field psychological group with other parents. “At first I did not believe in group psychotherapy and did not want to go. But this turned out exactly what I needed. In ordinary life, no one wants to talk to you about your child. But I don't want to forget. Because it is my daughter, and she was. And there, in the group, in front of you seems to be strangers, but they survived the same as you. It is immediately possible to talk with them about the most painful. And they understand you. Although it was very difficult: you are experiencing it again, telling your story, listening to strangers. But then it helps. In our classes, I told Alena Kizino that I was waking up and I don’t know where to put myself. I used to be mom, what am I now? Then she told me an important thing: that I am now mom. She is right, I am forever her mother. "

Now Marina is working in two work. Together with a friend who recently divorced, they took off the kopeck piece: Marina - in the same room, a girlfriend with two children - in the other. Marina loves to spend time with them, the youngest just as much as Alena would be now. Marina goes to yoga and the pool, he says, it helps a little. And even the ninth of each month bake pancakes, a favorite dish of Alena, and treats them all.

Marina still goes to group meetings at the House with a Lighthouse. At the last such meeting, parents wrote letters to their children. “Our letters ended with the words“ I let you go, ”Marina says is barely audible. - This is probably the most difficult. Let go. "

The children's hospice “House with a lighthouse” helps families in which children die. Helps equipment, medicines, nutrition, but the main thing is professional and human support. And even when the children leave, the “house with the lighthouse” remains - as much as necessary. Please make a monthly subscription in favor of a children's hospice. So that those who fall out to go through the impossible do not remain alone.