Yuvi was born healthy and happy on March 12, 2018. He was welcomed home a few days later by his twin big brothers, Arjun and Akshay, who were two years old at the time. Yuvi was a cheerful and active baby who met all developmental milestones early or on time. He grew into a bright and busy toddler, always trying to keep up with his older brothers. At just two and a half years old, Yuvi had full letter recognition, an extensive vocabulary and a delightful sense of humor. He was ready (and excited) to start preschool the following year. Our hearts were full and our lives felt so complete with our three precious boys.

However, as 2020 came to a close, things took a sudden unexpected and devastating turn.

DECEMBER 2020

While on vacation at Holmes Beach in Florida, we noticed sudden changes in Yuvi’s facial appearance and gait, including a slight droop on the right side of his face and a limp in his right leg. Upon our return home to Atlanta, Yuvi’s pediatrician advised us to take him to the ER for further neurological evaluation. We rushed to Children’s Scottish Rite Hospital where initial imaging showed a large mass in Yuvi’s brain. Little did we know, that as Yuvi walked into the ER that day, it would be the last time he ever walked on his own.

Yuvi was immediately scheduled for a biopsy and the results revealed that he had an advanced untreatable grade 4 tumor in his left thalamus. There was no possibility of removing it surgically. The official diagnosis was diffuse midline glioma, H3 K27M-mutant, the rarest and deadliest of all pediatric brain cancers. Additional molecular studies of the tumor detected a rare EGFR mutation, which further limited treatment options. Yuvi received his death sentence at diagnosis but, like all parents, we hoped and prayed that he would be the first child to beat the monstrous disease.

JANUARY-FEBRUARY 2021

Within just ten days of diagnosis, the tumor had grown 20%. Yuvi experienced severe headaches, nausea and vomiting caused by hydrocephalus. He underwent surgery to have a ventriculoperitoneal (VP) shunt placed to drain excess cerebrospinal fluid from his brain. At this time, a right atrial catheter (central line/port) was also surgically implanted to lessen the number of needle pokes Yuvi would have to endure. The only option to potentially prolong Yuvi’s life was to begin proton beam radiation therapy immediately. For the next month and a half, Yuvi was fully sedated first thing each weekday morning for thirty radiation therapy sessions. Despite the harsh side effects of radiation therapy and the anti-inflammatory steroid dexamethasone, Yuvi continued to live each day with joy, positivity and a big smile on his face. At this point, he could not walk, had lost most control of his right arm and was no longer able to fully open his left eye.

MARCH-MAY 2021

The tumor was stable for a couple of months after radiation therapy, giving us the opportunity to make many beautiful memories, including spending time at the beach, celebrating Yuvi’s third birthday and experiencing his ‘Wish Day’ at a local fire station. During this time Yuvi continued to show us his courage and resilience by re-learning through physical therapy how to sit up, crawl and stand with support.

Throughout his debilitating journey, whenever we asked Yuvi how he was doing he would always respond with “I’m okay” or a “thumbs up”.

In mid-April, Yuvi had a seizure that again led us to the ER where he was intubated upon arrival. Yuvi had hemorrhaging, inflammation and fluid buildup in his brain so an external ventricular drain was placed for temporary relief. During our five-day stay at the hospital, Yuvi was unable to open his eyes, communicate, eat or drink. The PICU team cautioned us that the drain had to be removed for us to leave the hospital and that, once the drain was removed, hydrocephalus would set in again and Yuvi would only have a couple of days to live. We made the difficult choice to switch to hospice care and left the hospital devastated and heartbroken (again). The next few days we prepared ourselves and our family for the worst.

But instead, we witnessed a miracle. Against all odds, and much to the surprise of our medical team, Yuvi gradually recovered to his pre-seizure condition. We got to see him smile and laugh again. We were given a second chance to do all the things we wished we had done, and we continued to surround Yuvi with so much love as we made many more precious memories.

JUNE-JULY 2021

In mid-June, Yuvi was unable to open both of his eyes. A follow-up MRI revealed that the tumor was pushing on his optic nerve and that the tumor had grown into the brainstem, which regulates swallowing, wakefulness, heart rate and breathing. For the last three weeks of his life, Yuvi was in a coma-like state. DMG had taken away his ability to see, communicate, move, eat, drink and ultimately, breathe. Yuvi passed away resting peacefully in our arms at home on the afternoon of July 30, 2021.