‘After requesting an online second medical opinion, we decided coming to Barcelona was the best option for my son's medulloblastoma’
A 6-year-old boy from Kazakhstan continues treatment for his brain tumour at the SJD Barcelona Children's Hospital
Nurali’s mother Ulday tells us how it all started in January 2023 when the young boy woke up at night with an extreme headache, dizziness and nausea. The next day, seeing that he was getting worse (he had strabismus and balance issues), an ambulance took him to hospital, where he was diagnosed with a brain tumour. It was recommended to operate at another hospital in his home country, or abroad.
The family decided to travel to Turkey, where Nurali was diagnosed with a medulloblastoma, the most common malignant brain tumour in the pediatric population, making up around 20% of current childhood cancer cases. They operated him on 31st of January, completely removing the tumour. But after the operation, Nurali's neurological condition worsened and his post-op period had more complications than expected: he could not move or use his hands. He was then started on a course of radiotherapy with physiotherapy sessions twice a day. In two months, he started walking again.
His mother found the SJD Barcelona Children's Hospital through internet reviews, many of which came from families whose children had been treated here. One mother from Kazakhstan spoke very highly of the Hospital. A video consultation was scheduled with Ofelia Cruz to get a second opinion on the treatment plan, and when they received the report, the family decided it was best to travel to Barcelona for the boy's treatment.
Dr. Cruz confirmed the boy's medulloblastoma diagnosis, explained the treatment that he would have to undergo, and also gave the family answers that they could not get in Turkey.
They arrived in Barcelona in April 2023 where, after taking a biopsy sample of the extracted tumour, a molecular test was performed, allowing doctors to form an adapted chemotherapy plan. Additionally, an MRI showed that Nurali had hydrocephalus (an excessive build-up of spinal fluid in the brain), which had resulted from the surgery to remove the medulloblastoma.
Neurosurgeons at the SJD Barcelona Children's Hospital performed an endoscopic fenestration procedure to treat the hydrocephalus
On 27th of April, led by José Hinojosa, Head of the Neurosurgery Department at the SJD Barcelona Children's Hospital, the Neurosurgery team performed an endoscopic fenestration on the child to drain the excess spinal fluid. In this case, surgeons were able to perform endoscopic surgery because the hydrocephalus was obstructive. When possible, endoscopic fenestration is the preferred option for the patient, as it avoids the need for a permanent shunt. The surgery was a success and, after ensuring that inflammation had subsided, chemotherapy was started in May.
Nurali has already undergone three cycles of chemotherapy, is still having physiotherapy, and is now also doing occupational therapy (physical tasks and recreational games and activities to help combat physical, cognitive and psychological disorders). It is expected that Nurali will undergo five more chemotherapy cycles, so he will remain in Barcelona until Spring 2024.
His mother says ‘Nurali is happy here, he's not worried about the seriousness of his illness, as we try to let him lead a normal life. At the Hospital, he really likes that everything is geared towards children: the clowns, the facilities, the play rooms, etc. It doesn't feel like a hospital to him, but rather somewhere he is welcomed and treated well. Thanks to all this, he isn't scared when he gets chemo.’