Sammuel

FullSizeRenderSammuel was diagnosed with a brain tumor on July 28th, 2013. That day he was transported to University of Michigan by a helicopter, taken to MRI for 4 hours and put on a ventilator. On July 29th, 2013 Samuel was scheduled for surgery at 2 o’clock. Unfortunately, due to an emergency, his surgery didn’t start until 5 o’clock. From there, he endured a 14 1/2 hour surgery through the night. At 6am, we were informed that they were just finishing up. Finally at 8 am Dr. Garton came out and told us that they remove 90 to 95 percent of the tumor. My next question was “Is it cancer?”. Unfortunately those are the words that changed our lives forever. Dr. Garton had found a blue frozen piece in the tumor which meant it was either medulloblastoma or ATRT (Atypical Teratoid Rhabdoid Tumor). Finally, at 9 am, Sammuel was back in PICU where he endured a ventilator along with an external drain in his head to relieve the pressure from all the spinal fluid that had built-up.

Sammuel’s tumor was located in the fourth ventricle of the brain. 10 days later on his 1st birthday, August 9, 2013 we received the biopsy report to confirm the diagnosis of ATRT, a cancerous tumor of the brain that gave Sammuel a survival rate of 10%. That’s when we had to decide what to do with our son. Do we try chemotherapy or do we give him quality of life?  We decided to try the chemotherapy and give him a fighting chance. Sammuel went through three rounds of initial chemotherapy, stem cell harvest, 3 rounds of high dose chemotherapy with stem cell transplant, 2 emergency surgeries, 3 ports and 2 broviacs.

On March 18th 2014 after Sammuels follow-up MRI, we receive the news. Sammuel was cancer free!  From that point forward Sammuel finished a year of maintenance chemotherapy. During his year of maintenance chemotherapy Sammuel had a scheduled MRI every 3 months, which will continue along with a hearing test for the next two years.  On May 13th, 2014 Sammuel received hearing aids. His audiologist said that he had nerve damage and his hearing would either stay the same or get worse. A year later, May 10th, 2015 Sammuel’s hearing test concluded he no longer needed the aids. Sammuel will start the process of dental work on June 10th, 2015 from the extensive damaged to his teeth caused by the chemotherapy.  Every tooth had a cavity, including his four front teeth, which might be pulled if they can’t be repaired.

Sammuel was not able to walk, talk or crawl before he turned 4 years old and the last time Sammuel had a bottle was the day after his brain surgery July 29th, 2012. He was on a feeding tube until May 2014.  Currently, his diet consists of a special juice high in calories to keep him gaining weight. He does not know how to eat or drink as a normal child.  Sammuel went through months of physical therapy as well as speech therapy.Even though hes been through a tremendous couple of years, he is the smartest boy with a huge personality.  We still have a million obstacles to overcome but we overcame the biggest one.

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