Adrian was diagnosed with clival chordoma, a type of brain tumor, on January 21, 2021. He was 2.5 years old had a stiff neck for a couple of months, because of covid we only had virtual doctor appointments and we were told to monitor it. A couple of weeks later, he was unable to move his left arm. In the emergency department, they discovered a mass close to the brain stem. He needed immediate surgery for two consecutive days to resect the tumor. Post-op he was quadriplegic and had a tracheostomy for emergency airway and a gtube for supplemental nutrition. He recovered after 2 months from surgery and regained full mobility, except only limited head and neck mobility due to cervical bone fusion from tumor resection.
We have been struggling financially as we were originally a one-income household. Now we just rely on donations since my husband also had to take extended unpaid leave from work to care for our medically complex child and two other children. We have to trade off during weekly hospital stays because we are the only ones trained for his tracheostomy care and our two other children ( 6 & 7 years old) at home are not allowed at the hospital due to covid restrictions. They are also homeschooled due to my son’s compromised immune system.
Hope session by Robin Litrenta Photography | Facebook | Instagram