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Shock diagnosis – Baby Charlotta has cancer – no therapy works

“You have to get dressed NOW, I’ll pick you up and we’ll go to the hospital” – these are the words the pediatrician said on the phone to Juliana (36), who is holding her two-month-old daughter Charlotta in her arms.

Juliana still hears the terms “blood count” and “leukemia”, then she goes into organization mode: pack her bag, call the man, order a taxi because the doctor is stuck in a traffic jam. It is only in the car that the importance of all of this reaches the young mother. She cries while the little daughter clasps her index finger.

At this moment, the young family began to fear for their daughter’s life – and the path to a worldwide medical breakthrough. Always connected with the question: How much suffering can you inflict on a child in the hope of saving it?

An infection was the first warning sign

She practically spends the first two months of Charlotta’s life lying on top of her parents. An intimate, close getting to know each other. Then the little girl gets an infection that doesn’t quite go away and a strange rash. After several visits to the pediatrician and dermatologist, a blood count is finally done weeks later. The pediatrician sends the mother to the Charité immediately with the result.

“The very first doctor told us that they would be testing, but that it could not be anything other than cancer of the blood,” says Juliana. “Two hours later, I was in the intensive care unit, trying to breastfeed my daughter, who was cabled with lots of tubes, access points and sensors. I didn’t even know how to hold it. “

There is hardly any time for fear because the situation is very serious. The first chemo begins within days, and one thing is clear: Charlotta will need a bone marrow transplant. The only thing that can save your young life. But in order to be able to do this, the dedicated team of doctors must manage to keep the cancer cells below a certain level. Only then does a transplant make sense.

“You have never dealt with anything like this before, and suddenly you get explained that the chances are not particularly good, especially with such small babies,” says Papa Florian (43). Nevertheless, on the second day after the terrible diagnosis, he first went back to work to leave everything in order. “It’s crazy what absurd things you look for in such situations,” says Florian.

An unbearable ups and downs begin for Charlotta and her parents. The little one can take the first chemo block well, the cancer cells recede. That’s why she is allowed to get the second block at home. “At first we were completely overwhelmed. We had to mix the chemo ourselves, with gloves, because it is poisonous – and at the same time you put it into your child’s mouth with a syringe, this poison. ”

Charlotta vomits often and her parents keep asking themselves: what now? Do you have to give in to the medication, has she got enough? Is the poisonous vomit dangerous for your skin? It felt like 100 calls and visits to the hospital, in the Charité everyone always looks after them lovingly – but the uncertainty remains. But Charlotta struggles, has better breastfeeding again, and is allowed to go for a long walk in the fresh air with her parents for the first time. The suffering seems to be worth it.

Big setback for the family

Then comes the next test of the bone marrow, puncture in medical German. And the first major setback: The leukemia has re-opened. Worse still: a laboratory carried out a so-called poison test with cells from Charlotta, that is, looked to see whether any available chemo agent could do something against the cells. The test is sobering. None of the means helps.

The doctors, who have always tried to exude optimism up to this point, now have to say sentences like: “We will see now.” Which means that the normal therapies have failed. “As a doctor, this happens again and again – but I’ll never get used to it. Something like that is never an everyday occurrence, it always takes you with you, “says Prof. Angelika Eggert, head of the Clinic for Pediatric Oncology at the Charité.

Charlotta is now receiving immunotherapy, and that doesn’t work either. It remains a very last attempt with another antibody. The little one should recover at home before giving this last remedy. Juliana: “I will never forget how a doctor told me that we should enjoy the next four weeks. He didn’t say the second part of the sentence – but of course I heard him anyway: Because it could be your last. “

The family holds out for the little daughter

At this point Florian and his wife wondered for the first time how much one can do to the being that one loves more than anything in the world. But the will not to give up is unbroken. “And it was the same with the doctors. You had the feeling that they didn’t want to give up on Charlotta, ”says mother Juliana.

“You accompany the families, you feel connected, you really want to do everything you can,” says Prof. Angelika Eggert. “At the same time, you have to focus on the child’s well-being, ask yourself whether the child really still has a chance – or whether it is understandably the parents who cannot let go. Maybe even as a doctor it is difficult to let go yourself. “

The professor and her team are daring to take a step that is courageous but also very risky: the antibodies do not work either, the load on the cancer cells in the bone marrow is still too high – but the doctors still suggest transplanting.

Letting go is not an option yet. Everyone still holds on to the fact that Charlotta has a chance. A chance to live.

Please help children fight cancer

The so-called CAR-T cell therapy can save even a life thought to be lost! The problem: A very long and expensive road has to be covered before a new therapy becomes accessible to children. Neither health insurances nor pharmaceutical companies pay here. The BILD aid organization “A Heart for Children” would therefore like to support the Charité Berlin with a large study. The goal: to enable all affected children to receive promising treatment.

Prof. Angelika Eggert, Head of the Children’s Cancer Clinic at the Charité: “We activate immune cells, so-called T cells, from suitable bone marrow donors in the laboratory so that they can better recognize cancer cells in the children’s body and kill them in a targeted manner. As part of a large study, we would like to ensure that children can initially receive this therapy at all – and then that the CARs replace other, very stressful therapies in the future. ”

READ IN THE NEXT PART: A donor is found – but will Charlotta survive the extremely dangerous transplant? And if so, what happens afterwards?

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