The Terrance Ulmer Story

We welcome Terrance’s mom as a guest blogger today to share her story.

After practice or after a game Terrance 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 referred us to the Women and Children’s 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 exactly what is Neuroblastoma? 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. His 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 that we are, we read any and all literature on this terrible disease, talking with mothers, fathers and doctors whom shared 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 did not anticipate on 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 the 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. Even though God did not give us the spirit of fear, this hasty disease is one that does not discriminate. My family and I just live one day at a time but this has definitely changed our way of living, thinking, not taking a single 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.

In September 2014, we had to stop the 3F8 Monoclonal Antibodies treatment because the side effects were becoming more intense than the actual treatment itself. Per Dr. Kushner, since Terrance has had a total of 12 rounds of 3F8, it was a good idea to stop it and to continue scanning him every (3) months.

Every 3 months, cancer literally hits the pause button on what “we” call life. On March 28 & 29th, and every 3 months after, we will be in pause mode yet again, at Sloan Kettering Memorial Cancer Center in Manhattan, New York. Terrance will undergo the following test: MIBG body scan, CT scan, urine markers and blood work. We are 18 months post frontline treatment. Please pray that these scans are clear and those to follow are the same. Trust and believe!

Today Terrance is doing wonderful. His mom said he is just growing and keeping them very busy with sports!

Terrance’s sports themed cake was provided by Sugar Angel Ouida Turner in Orange Beach, Alabama. Thank you Ouida for all of your hard work and dedication to Icing Smiles and for providing Terrance with his 8th birthday cake. We look forward to seeing more “smiles” from you in the future!