Makar is 2 years and 7 months old. He is a joy to his parents – a cheerful, smiling boy, he plays with objects and toys, builds pyramids and loves his construction kit. At the age of two months, Makar was diagnosed with a brain tumor. His official diagnosis is giant, infantile, hemispheric glioma, malignant (Grade IV). The tumor is rare and no standard treatment for it exists.
By his two years Makar has gone a long way to recovery: three operations to remove the tumor, then two more due to complications post-surgery. Since the tumor could not be completely removed, it was decided to undergo chemotherapy. Makar underwent 14 courses of chemotherapy. In December 2019, after all the most difficult treatment, an MRI revealed an intensive growth of glioma, and in February 2020, the formation of three new nodes, which means that chemotherapy no longer restrained the growth of the tumor. In Russia, his parents were told that it was impossible to completely remove the tumor at this stage. Makar’s doctor said that there is a targeted therapy, but it’s a completely new, unexplored method in the field of infantile brain tumors.
After many inquiries around the world, a doctor from Spain responded! Makar’s parents sent a tumor sample to Barcelona, Hospital Sant Joan de Déu, one of the best hospitals in the field of targeted and immune therapy. The lab did an analysis and identified the inhibitors that could potentially be effective. The doctor was able to get approval from the pharmaceutical company, as well as with the Spanish Ministry of Health so that the hospital could accept and treat Makar with this drug. Makar was the first child in the world to receive Alectinib, but he needed constant monitoring of his condition. After 3 months, the MRI showed an amazing result, the tumor was gone by 50% and the new nodes disappeared. Unfortunately, Makar’s liver could not withstand the toxicity and it was necessary to take a pause from therapy. It took another three months for Makar to recover, and in August 2020 the doctors did another MRI. The results were shocking: the tumor grew to the same size. The maximum dose of Alectinib and Rapamune was prescribed again, with control evaluation in September 2020.
September 2020 MRI showed intense tumor growth. The neurosurgeon gave his conclusion: the tumor needs to be operated on urgently. In September, Makar underwent surgery to remove the tumor completely. The molecular testing of the tumor material showed that there were two mutations of the ALK gene, one was destroyed by Alectinib, but the second gave growth of cancer cells.
Two months after the operation, on November 18, 2020, an MRI showed a terrifying result – the tumor grew back. It was a very difficult period, as Makar had not yet fully recovered from the operation, but the tumor was already progressing. Makar was getting worse every day, but his parents and doctors did not give up. A new inhibitor for this type of mutation, Lorlatinib, has been developed. This drug was also not studied against gliomas, and there were no clinical studies in young children. But Makar’s doctor received a permit for the use of this drug, so that the manufacturer could control and prescribe dosages.
Since November 27, 2020, Makar has been receiving targeted chemotherapy, and on January 13, he had a control MRI. Fortunately, Makar responded to therapy, so he is continuing this regimen. His parents really hope that they are close to winning. Now they need to continue Makar’s treatment with the drug at the hospital Sant Joan de Déu to monitor his condition and prevent relapse of disease. However, treatment is very expensive, and Makar’s family would really appreciate your support and help.
Makar always bravely and patiently goes through all the treatment. He began to speak individual words, eats independently, crawls, although he has impaired coordination of the right side. Because of multiple surgeries, Makar does not walk. His doctor says that when Makar overcomes the disease, he will be able to walk. His parents dream is that the tumor will go away and their son will begin to learn about this world in a completely different way!