After 19 days of quarantine in a small room, three chemos a day and an endless list of other drugs, we finally go home for a few days.


What happened so far and where we have arrived

In November 2018 our son Ilai was born in Bad Soden /Taunus.

The most beautiful day in our lives - In May 2019 Ilai woke up one morning with a "blue eye". At first nothing alarming for a child of his age and temperament.

But when a few days later the other eye showed the same condition, we consulted the pediatrician.

He diagnosed a massive anaemia and the visits to the doctor took their course. Various prognoses were made. So far always without result. Contrary to the typical symptoms of anemia, our son was mostly cheerful and active.

But in the course of time it happened more and more often that he was restless, obviously felt unwell, had pain or had to throw up.

In the night of June 15th he felt so bad that we went to the Albert Einstein Clinic in Sao Paulo in the early morning (at that time we were in Brazil for professional reasons).

Here he was immediately examined thoroughly and the very next day we had the devastating diagnosis. Neuroblastoma stage 4

The worst day in our lives - The second most common childhood cancer spreads through the nerve tracts in the body. In Ilai's case, the primary tumor was located at the adrenal gland. Metastases had already formed on the liver, chin, eyes, lymph nodes and bone marrow.

Immediately several blocks of chemotherapy were started over a period of 8 months.

After completion at the end of February 2020, the MRI showed a good success.

The rest of the tumour was removed in a subsequent operation. The biopsy showed that the metastases had disappeared and the bone marrow was also free of cancer again.

Unfortunately, however, active cancer cells were still found in the lymph nodes. So a new stony path began for our little treasure.


Bone marrow transplantation (4 -6 weeks isolation)

Irradiation (daily for 15 days under anaesthesia)

Immunotherapy in Brazil

The transplantation should then be started at the beginning of April. But unfortunately it did not go according to plan!

After a corona test, which is currently routine, we were admitted back to hospital on 30.03. with negative results. At first, a tube was placed under anaesthesia for artificial nutrition, since a natural food intake is not possible after this aggressive chemo, which includes the transplantation (mouth, throat and stomach are attacked in such a way that everything becomes highly inflamed).

Treatment should begin on Wednesday. But the Hickman catheter was not in order and had to be replaced under renewed anaesthesia. The planned 30 minutes became a nerve-wracking 3.5 hours. As the small body is now covered with scars, it is becoming more and more difficult to access the heart with the catheter.

At night Ilai got fever and treatment was postponed until further notice. Blood samples were taken twice a day to find the cause.

On 04.04. he woke us up with loud crying and could not be calmed down. Suddenly he cramped and collapsed. Eyes and mouth were open, but he showed no more reaction.

Eventually he came around. MRI and EEG were clear.

Meanwhile Keth got fever and chest pains, Pascal got strong headaches and Ilai's fever attacks did not decrease.

Again a corona test was carried out and unfortunately the results were positive for the whole family.

So we drove home again in quarantine after 11 days without having achieved anything.

It took 4 weeks until everyone was cured and towards the end we noticed that Ilai's condition had worsened again. We were again admitted to the hospital and the examination confirmed our fears. Due to the long period without treatment metastases had formed again.

Both in the bone marrow and in the facial area. In addition, the Horner syndrome, typical for neuroblastoma, has developed.

Now some chemotherapies follow which are adapted to this special form. After that we can hopefully start with the actual bone marrow transplantation and follow the original plan !

The goal is to participate in the immunotherapy study in Barcelona. Here, more intensive antibodies have been developed which significantly improve Ilai's chances of recovery (Naxitamab).

If we already have the costs together by the time of the immunotherapy, we will start the therapy in Barcelona directly. The therapy offered in Brazil is only for bridging purposes.

Now we hope that finally everything goes as planned.