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Charlottas Weg Part 3 – New therapy finally brings the turning point

Doctors say Papa Florian (43) should perhaps stay in the hospital for the next few weeks. Either these could be the first steps into a new life for his leukemia daughter (1) – or it would be the last few weeks of her young life.

Little Charlotta is the first patient in the world to be treated with a new method: a donor’s immune cells prepared in the laboratory are injected into her bloodstream. The cells are quasi armed to fight the leukemia. Before that, the brave girl had to endure chemo, immunotherapy, further antibody treatment and stem cell transplants – none of which could defeat her highly aggressive cancer.

Now her doctors are taking a great risk to save her young life after all. Charlotta is patient zero. Nobody knows how the new therapy will work in their little body. Hence the advice to the father to take sick leave and stay with his family. Any minute, something unexpected can happen.

“The prepared cells were in a normal small syringe, which seemed surprisingly easy after all the worries and discussions,” says Mama Juliana.

The first three weeks after administration of the so-called CAR-T cells are the most important. Then the doctors want to look in the bone marrow to see whether they are working. But on day four, Charlotta had a fever. “That’s good,” says Prof. Angelika Eggert, head of the children’s oncology clinic at the Berlin Charité. “That means that the cells are actually active, spreading in Charlotta’s body. That they start their work. “

Charlotta has a severe seizure

Then there is a seizure.

“Charlotta’s eyes rolled back and her right hand began to tremble slightly,” remembers Papa Florian, who pressed the emergency button when the monitor showed that the oxygen saturation in the blood was dropping dramatically. “I saw doctors and nurses running in the hallway. Even the professor ran. That’s when I knew how serious it was, ”says the father.

The team fights for the girl’s life for an hour. As simple as the principle of armed defense cells is, the reactions in the toddler’s body are just as complex. The senior doctor gives instructions in a military tone. At first Juliana still holds her girl’s foot in order not to disturb, but also not to lose contact with her little one. Then a doctor takes the parents outside, where they wait in a doctor’s room.

“At this point I thought for the first time that she might not make it,” says Mama Juliana. “Never! She can do it, ”says Papa Florian firmly. The two look at each other when they talk about it, their desperation is still palpable.

But fear turns into pure happiness. Because Charlotta has to be immobilized with medication after the seizure, the doctors use this rest to check her bone marrow for the first time after the administration of the CAR-T cells. The result overwhelms doctors and parents alike: 10 days after the first administration of the worldwide new therapy, there are NO traces of cancer cells in Charlotta’s bone marrow! Not a single cell.

For the first time since she was diagnosed with leukemia almost a year ago, Charlotta is cancer-free.

But the joy does not last long, because shortly afterwards the little girl stores water. So much that Charlotta can only lie on her stomach, otherwise the water would crush her lungs.

Nocturnal x-rays, repeated rushing of oxygen saturation and emergency operations, pneumonia.

“In retrospect I can say that I am very grateful that no one could tell us beforehand how everything would go on. Because otherwise we might not have started it – and not got through it. “

Parents and doctors are faced with a dilemma

As if life-threatening pneumonia wasn’t enough, it comes with a dilemma: cortisone can get the inflammation under control – but it may kill the CAR-T cells that are still fighting the leukemia.

Still give? “We delayed the gift as much as possible,” says Prof. Johannes Schulte, head of the transplant station. Everything here is an experiment because nobody has had any experience with the CAR T cells from a foreign donor.

“In the end we had to give the cortisone, otherwise Charlotta would have died of pneumonia,” explains Prof. Schulte. He’s often in Charlotta’s room at 11 p.m. – and back at five in the morning.

The cortisone works – and an examination of the bone marrow shows that the CAR T cells are still active! Everyone breathe easy.

“I didn’t know what to do with joy, relief and tears,” says Juliana.

Charlotta fights her way through life-saving therapy

But her little daughter is far from over the mountain. Charlotta develops a rejection reaction, affecting the intestines and skin. The little one had diarrhea for months, all of her skin flakes and itches terribly. “We had to put socks on her hands with tape so that she wouldn’t scratch herself bloody, we wore them for hours at night. She never found peace, at most she fell asleep for a few minutes from sheer exhaustion, ”says Mama Juliana.

“It was hell to see her suffer like this.” No matter what is tried for relief, it only helps for a few minutes at most. “The condition lasted over half a year, we sometimes asked ourselves whether it was right to cause our daughter so much suffering. Maybe we shouldn’t have let her go, ”says Mama Juliana.

But even this time the little fighter survives, who at some point finally sits in her bed and starts to play a little. Stickers are her first and favorite hobby. “She stuck them everywhere, including all over her face,” says Juliana. The fact that the three of them can laugh heartily together at the fact that they are plundering entire stocks of stickers from entire toy shops and that Charlotta is paving the entire apartment with them is the best present for everyone.

Charlotta’s medical history began in the spring of 2016 – and only in 2019 is the girl noticeably improving from a medical point of view: a new sample is taken from her bone marrow every month. It remains cancer-free – although the CAR T cells, which first defeated cancer but then turned against the girl and made her seriously ill, are steadily decreasing. In summer 2019 they are no longer detectable for the first time. The leukemia stays away anyway!

In the following year, Charlotta learns to speak, crawl and walk. All within a few months. “It was as if her little body was finally catching up on what it hadn’t been able to achieve, discover, gain for so long,” says Papa Florian.

At some point the girl begins to incorporate the everyday hospital routine, which has determined her life so far, into her game. All of their stuffed animals have to wear masks and the family takes selfies with them. “In the Corona times we felt astonishingly normal,” says Papa Florian with a laugh. Normality. A foreign word for the young family up to this point.

It was not until March of this year that Charlotta will have the nasogastric tube and a catheter pulled through which she received the heavy medication. She will continue to be examined every three months.

But Charlotta is now a healthy, happy girl who has discovered the world for herself. One for which EVERY effort seems to have been worth it. One that smiles very often – or rather: grins cheekily.

Please help give children with cancer a chance

The so-called CAR-T cell therapy can save even a life thought to be lost – just like with Charlotta! The problem: A very long and expensive road has to be covered before a new therapy for children becomes available to all affected children. Neither health insurers nor pharmaceutical companies pay here.

“A Heart for Children” therefore focuses on the topic of cancer: the BILD aid organization supports the Charité Berlin, but also, for example, the Heidelberg and Essen University Clinics in studies that enable children to use new treatment methods – and would like to continue to do so. With your help!

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