Henrik
Age 5
Henrik has been battling ATRT since he was just 15 months old. After experiencing significant neurological abnormalities, an MRI revealed a golf ball-sized tumor on his cerebellum. Emergency surgery was required to relieve the pressure on his brain, and he was fitted with an EVD.
Transferred to a specialized pediatric cancer hospital, Henrik underwent a rigorous treatment plan: 12 blocks of chemotherapy (VCA, ICE, and DOX) and 30 rounds of ion radiation between April 2022 and October 2022. In October 2022, he had successfully completed chemotherapy and was declared cancer-free, ringing the bell in celebration.
However, the battle was far from over. A follow-up MRI ten weeks later revealed several tumors in his spinal canal. Despite the grim prognosis, Henrik’s family refused to give up. He began the MEMMAT protocol and received radiation again, this time to the entire spine. And it worked - all the tumors were gone during the first MRI! The MEMMAT proved effective for 13 months. Henrik’s family shares, “We were so happy and confident that it would be enough this time.”
Unfortunately, the reality is different...
In February 2024, a follow-up MRI revealed a new tumor on the cerebellum and an "abnormality" on the cerebrum. While the cerebellar tumor was surgically removed, the cerebral abnormality could not be treated surgically. Henrik received radiation again, this time to his entire skull, and an MRI this past summer showed no visible tumor tissue. Henrik underwent a personalized long-term therapy regimen tailored to his specific needs. Doctors at KITZ in Heidelberg artificially regrew his tumor and tested various medications on it, developing a therapy regimen involving four different medications.
In December 2024, Henrik’s doctors decided to pause his therapy until his next MRI in February. He is currently tumor-free and recovering well, although his bone marrow regeneration is slower than expected due to the extensive treatment. His family remains hopeful but cautious, as they have never been in this position before.
Henrik continues to experience some side effects from the disease and its treatment. While he has not spoken since his initial diagnosis, he is able to communicate effectively. He can eat and drink independently. He can walk and run, and enjoys playing with his two brothers!
Although Henrik has had to endure so much, he is an incredibly happy child! He loves dinosaurs and Disney films (his favorite character is Olaf from Frozen!) He loves being outside and loves playing in the garden with his two brothers Thorben (6 years old) and Marius (1 year old).
Henrik’s family faces significant financial strain due to the ongoing treatment and the inability to work. They have established a GoFundMe fundraiser to help cover these costs.
Since April 2022, Henrik has fought tirelessly to overcome ATRT. His family is unwavering in their support, and they are determined to do everything in their power to help him live a full life.
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