Steven's Story

              

             

             

 

Steven is 17 and the second of five boys in our family. He has always been a great guy with drive and ambition, honesty, and straight A's. Most importantly, he has a great big, kind heart. Steven was 16 in the spring of 2007. He was enjoying a workout with his friends from DeSmet Jesuit High School when he noticed his hands and lower arms going numb . Steven also had pain every night while he was trying to sleep and it was increasing.  Amazingly, these were his only symptoms.

He spoke with our physician who took an MRI to rule out disc problems from lifting weights.  What they found was a massive growth from C1 to T2 in his spinal cord.  The neurosurgeons we consulted originally agreed on removal of the tumor, either partially or completely.  This would leave Steven paralyzed, possibly ventilated, but definitely not physically intact...

Steven saw many doctors over the summer and had stayed on steroids for 4 months while we were trying to find alternative diagnoses, treatments and confidence in our decisions for his health...A biopsy was necessary for absolute diagnosis.  We chose the pediatric neurosurgeons at St. Louis Children's Hospital to do the biopsy to accomodate our family.

The biopsy proved the growth to be an intramedullary spinal cord ependymoma, grade II.  Steven’s spinal cord and tumor had essentially become one.   He is the 26th person at Barnes St. Louis to have this tumor since 1960.  Radiation was proposed at the highest dose possible for 28 days.   Steven’s  Radiology/Oncologist felt confident it could stop the tumor from growing for an unspecified amount of time, and would leave him intact for the immediate.

Steven finished his last radiation treatment October 20th 2007 and got off the steroids he needed to control pain. He has numbness of his left foot and left side from the biopsy which may or may not subside.  His stomach pain and nausea passed from the radiation.

As of the beginning of December , he was on steroids again for the pain from the edema of the tumor and we were in hopes he could get off of them successfully, without pain.

Steven had an MRI in November and the tumor had not changed, which the doctors expected. He had another MRI in February and Steven’s health began to decline while his pain increased. The steroids only masked the pain of his massive tumor. By this time, we contacted Dr. George Jallo at Johns Hopkins who is a neurosurgeon specializing in intramedullary tumors and also a researcher for the CORD Foundation.  Dr. Jallo watched Steven for the rest of the appropriate six month waiting period following radiation.  With Steven’s pain increasing, Dr. Jallo met with us and to our amazement he let us know that Steven would leave surgery with all the abilities he had when he went in.  It was unbelievable to consider such a good outcome, considering what we had been told for the last year. 

On Thursday, April 24, Steven had a complete radical resection of his tumor in Baltimore with Dr. Jallo.  The tumor/spinal cord was the size of a half dollar in circumference, compared to the normal spinal cord which is the size of the tip of your pinky finger.   During the five hour surgery, the entire tumor was removed, leaving Steven tumor free.  He was wheeled out and immediately lifted his arms and legs.  We all cried with relief.  It was a success and Steven came out with no deficits. He is weak, but with time and physical therapy, he will regain his strength and begin to enjoy his life again.  One day at a time, slowly and steadily he will prove his success.    

Steven had a long recovery from his radical resection of his tumor.  During the year following his surgery,  his cervical spine collapsed forward.  Steven graduated in May 2009 with his friends.  In June, Steven had another surgery with Dr. Jallo and Dr. Ain, to fuse his cervical spine.  His surgery was a success and he wore a neck brace all summer.  Steven was able to go away to college, but because of therapy and his recovery, he has returned home for school.  He has a lot of issues with his posture and therapy, but he is perfectly healthy and happy.  Steven’s last visit with Dr. Jallo showed no tumor.  Steven works out and is very strong.  He is even able to have a part time job at his gym.  It is spring of 2010, and Steven will be going back to Baltimore this summer to see what, if anything, is next. 

Steven has many good friends who are always here for him...Mike, Mitch, Dave, Brad, Adam, Ricky, Jacqueline,  Critter, Caroline, Melissa, Tyler, Dan, Erin, Angie, Jill, Tony, G and G, D's, the G's and many more have helped encourage Steven through this time.  DeSmet Jesuit High school has supported Steven in his struggle with unwavering dedication.
 
Steven and our family are honored to be the Missouri Chapter of the Malia's Cord Foundation.  We are thrilled to support the foundation, through your help, in its’ research for the cure.  Their efforts, yours, and all of ours will surely change the long term outlook for this devastatingly rare disease.

 

 

Steven's Tumor

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