"Miracles in the little things"

Why do parents refuse the struggle for the life of a hopelessly sick child, as their loved ones perceive, and what is behind this decision

Help a house with a lighthouse help

Pain

In December, Arina found metastases. “I was reflected,” her mother calls it. “In our winter, many acquaintances were responding to us.”

Arina remains to live minus four months. This means that in February, doctors gave her time until April.

Small, like matches, she plays with a plastic toy with handles and says thoughtfully:

“In general, yellow is my beloved. He is fast, ”five -year -old Arina argues about the birds from“ Engry Berds ”. She loves gagda and video blogs on YouTube. Now she reaches for her mother’s iPhone - she wants to show photos from Disneyland, where they went in March.

Now Arina rarely leaves the apartment-more often half-sneakers in the corner of the large sofa. Next to her are bottles, plates, a TV remote control, toys, everything that may be needed during the day.

Arina photo: Anna Ivantsova for TD

Two and a half years ago, Arina began to hurt everyone in a row. Her mother brought her daughter to the clinic every time.

“But doctors love to say:“ Mom, do not invent! ”” Says Christina. She has beautiful nails, and she continuously trembles with each other.

One of the doctors advised Arina to bring to the sea. But after the serene month on the Spanish coast, it all started new.

Somewhere in the second ten among the doctors, the one that insisted on hospitalization came across. In the hospital, the girl found a neuroblast - a malignant tumor of the nervous system. Some tumors gather in lumps, and they can be cut out, others are scattered through the body with metastases, like a sea buckthorn.

Arina rarely leaves the apartment-more often it is half-pasted in the corner of the large sofa

Arina had the second case: cancer struck bones and lymph vessels.

“The oncologist behaved honestly. Already in the first conversation, she said: “You may not treat it, the chances are so insignificant that you should choose [between palliative care and treatment]” ”. Then it was wild to me. I left the office. I smoked, roared and could not even understand how to say this.

Christina says cheerfully, almost fervently. She has the appearance of a person who is about to perform on stage, and he cannot wait. Smiling, Christina does not stop rubbing her nails.

Death

In Russia, three hundred thousand children will never be recovered. The unpopular figure is not enough in the media, in the cinema, in books. It is much easier to talk about death as such: it will happen to everyone, and when - as a rule, you can’t find out.

But death on the schedule - at least approximate - causes a dumb. It is a shame to look at a living person who is declared dead in advance.

Christina and Arina Photo: Anna Ivantsova for TD Christina and Arina Photo: Anna Ivantsova for TD

Kristina sent her daughter for treatment - seven courses of chemotherapy, high -like chemotherapy, bone marrow transplantation, twenty sessions of radiation therapy. Nine months in the hospital. Flying Momin Instagram, Arina, interspersed, shows photographs from travel and from the ward: “And here we are sailing in a boat!”, “And I am in the dress of Elsa!”, Suddenly - “And this was tied up and inserted my hands!” And again - "Look, what a beautiful park!"

After treatment, the tumor decreased, and the metastases left, but in October last year a new hearth suddenly appeared. Two months later - another.

“And you understand: now that's all. This is a relapse. And the chances of recover? There are almost no them, ”says Christina.

She did not talk to her daughter about the disease, admits that she simply could not get to the spirit. When Arina's hurts something, her mother calms her, he says that everything will pass; Together they dream of how Arina will go to school.

Christina looks at the collage photo frame on the wall. Half of the cells is occupied by photographs from the sea, Arina squints on them from the bright Spanish sun. The rest of the cells are empty.

“I think she understands everything. The psychologist says that children understand much more than we can imagine. ”

Death on the schedule causes a dumb. It's a shame to look at a living person who is declared dead in advance

“The worst solution in life,” this is how Christina says about her choice: to continue treatment and painful procedures or apply for the care of the Hospice Otvyzhnaya Service.

Christina photo: Anna Ivantsova for TD

“Some did not understand our husband with my husband and will no longer understand, including their relatives. They constantly tell me that I am a bad mother, that I do not give a damn, that I gave up, dropped her hands early ... - Christina's fingers are busy with a trembling cigarette. “But just the outcome is alone.” And what is better than Arina? Doctors said that you can try [treatment], but it is more likely psychological support to parents - to make them understand that they did everything. ”

Life

In February, the results of a new examination appeared - metastases wrapped bones from neck to thighs.

Christina learned about the children's house “House with a lighthouse” from the oncologist. On the same day, Lida Moniava, who works in the hospice, explained to Christine on the phone what they would do next. Christina does not remember the conversation itself.

Now Arina has everything necessary for comfort. “House with a lighthouse” buys all drugs and consumables, helps in obtaining painkillers, solves all bureaucratic issues for Christina. The oxygen concentrator is already at home in case of deterioration. A nurse, a doctor and a psychologist regularly come to Christina and her daughter. In addition, the state has a game therapist and a nanny, in case relatives of sick children do not even have time to sleep normally.

Photos on the walls of the apartment photo: Anna Ivantsova for TD In the hand of Arina, a toy from Kinder-Surprise Photo: Anna Ivantsova for TD

Thanks to the hospice, several miracles happened - for example, Disneyland. Lida Moniava wrote about Arina on Facebook, and 16 thousand people suddenly shaved her post. After that, the company "EKA" joined, solving all issues from the flight to tickets for the attractions. Christina recalls how she was struck by the fact that hundreds of strangers were ready to support her daughter:

“We all want a miracle. But only so that it must be healing. And sometimes miracles in another - in the little things: in a person found on time or in the said at the right time. "

It seems that for Christina this is the main thing - the feeling that she and Arina are not alone, that she can call the doctor at any time of the day and not be afraid of rudeness (“mother, do not invent”) that she will be supported at any moment that she will be supported until the very end - and after him too.

“We have already discussed: if this begins to happen, then how exactly, and what I will do at that moment. I know that I can maintain self -control, - Christina still carefully explains. “But if I am at a loss, I know who to call.”

Christina is silent. Arina calls from the room - she wants Cola. Mom pours soda into a glass, puts a straw and brings her daughter.

Arina lies on the sheet and watches YouTube. She is undressed - heat. Thin skin is stretched directly onto the skeleton. Spick hands lie along the body. The ribs are barely visible rise on inspiration.

We have already discussed: if this begins to happen, then how exactly, and what I will do at that moment

Choose Christina’s treatment, Arina would now lie in the ward, wrapped in tubes, with catheter in her hands. Instead of the TV, there would be bare walls, and instead of a mother-some fussy nurse.

Christina said that some of those who were “related” in December decided to send the children for treatment. Some of them have already left - alone, looking at the bare walls. The oncologist told Christine that despite all doubts, she made the right decision.

Arina photo: Anna Ivantsova for TD

Arina sits in her mother in her arms. Christina looks and smiles. Her beautiful fingers calmly lie on blond hair.

Read also “Mom for everything is ready” The four -year -old Ummah died of cancer. But she died without pain, in the family, with her there were mom and dad nearby. Children's hospice "House with a lighthouse" helps to alleviate the suffering of hopelessly sick children

In Russia, three hundred thousand children will never get better, but this does not mean that they will not live. Another day or another year - in fact, they, like us, do not know when they die. The only difference is that they need to help a little to think not about death, but about life.

In addition to Arina, about five hundred children are at the “House with a Lighthouse” under guardianship. Hospice spends a large amount of 30 million rubles a year for drugs and equipment for children and on a modest salary. She is entirely gained from private donations.

A private donation is one hundred rubles a month, just the same “help a little.” Use the form below and arrange a regular donation: one hundred rubles every thirty days. Of these one hundred rubles, the life of a child will begin to take shape tomorrow, whom someone mistakenly declared the dead in advance.

The material uses links to publications of social networks Instagram and Facebook, as well as their names are mentioned. These web resources belong to Meta Platforms Inc. - It is recognized in Russia as an extremist organization and is prohibited.

The material uses links to publications of social networks Instagram and Facebook, as well as their names are mentioned. These web resources belong to Meta Platforms Inc. - It is recognized in Russia as an extremist organization and is prohibited.