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Causes - Audrey More

Current Cause

Memorial Sloan Kettering Cancer Center (MSKCC)

New York, New York.

 

Inspiration

When I go to my daughter's school, I often see Terrance (pictured below with his mother in early 2015). I can't help but grow a smile from cheek to cheek at the sight of him. Beside the fact that he is just plain cute, he is a little light. He just beams and walks down the hall like he is ten feet tall. Terrance and Nichole 2015As I was standing with a teacher watching him, the teacher told me, "We keep trying to tell him he is a little kid and not a big kid, but he doesn't hear us. He thinks he can do anything." That is why Terrance is such an inspiration. For two years he has been going back and forth from Alabama to New York for cancer treatment and through it all he kept a smile. This guy knows how to live life to the fullest and that is why he is our first Inspirer.  Read his story below.

 

The Terrance Ulmer Story, courtesy of his mother, Nichole Ulmer

Terrance 2013

 After practice or after a game he would complain about leg pain, extreme pain in his joints, and fever. After going back and forth to the Urgent Care here in Baldwin County several times, they finally advised us and referred us to Women and Children Hospital in Mobile.  Here is where we stayed about a month before he was diagnosed.  In April 2013 Terrance was diagnosed with Stage IV Neuroblastoma Cancer.  His case was uncommon because a tumor or mass could not be located.

So what exactly is Neuroblastoma?

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Neuroblastoma is the most common solid tumor in children and the most common cancer for infants.  There are over 700 cases of Neuroblastoma each year in the U.S.  Neuroblastoma is most often originates in the adrenal glands, which are located on top of each kidney.  Neuroblastoma is a rare cancer that forms from immature nerve cells.  The disease typically occurs in children younger than five years of age.  However, tumors can begin anywhere in the body.  Other common sites for Neuroblastoma are the chest, neck and pelvis.  While Neuroblastoma may be found in only one spot in the body at the time of diagnosis in some patients, in others the cancer may have spread (metastasized) from its primary location to the lymph nodes, bone marrow or bones, which is where Terrance’s was found.   He had metastasis throughout his Bone Marrow.   Patients with high-risk Neuroblastoma have a 40 to 50 percent chance of long term survival despite aggressive therapy.

The protocol for this type of cancer involved 6 intense rounds of Chemotherapy, and a Bone Marrow Transplant.  Being the proactive parents we are, we read any and all literature on this terrible disease, talking with mothers, fathers and doctors whom may share similar stories helped me find a treatment that could possible sustain my son’s life. 

In reading an article about Immunotherapy, there was a story of a young girl from the Netherlands whose story was similar to Terrance’s.  At that time; per the article, the Netherlands do not anticipate having this protocol (3F8 Monoclonal Antibodies) treatment for about another 10 years, therefore the parents looked elsewhere for treatment.  A physician out of Philadelphia heard the story of this child and offered to provide this treatment to her for free.   To make a long story short, the girl was 5 years old when she went through treatment, today she is a 13 years old teenager. 

Some 8 months ago, Terrance was taking Immunotherapy at Memorial Sloan Kettering Pediatric Cancer Center in New York, New York.  His treatments consisted of 12 rounds of 3F8 treatments, radiation to those areas where the larger metastasis were and numerous scans.  As of today Terrance is in NED (No sign of disease.)    Even though God did not give us the spirit of fear, this hasty disease is one that does not discriminate.  Me and my family just live one day at a time but this has definitely changed our  way of living, thinking, not taking a simple day  for granted , saying I love you every night, etc.  This has completely changed our lives, 360 degrees.    But through it all; God is still good.

 

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