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Captain Courageous: Patrick DeClaire’s Story

When Patrick DeClaire was 9, mysterious back pain and fever led to a doctor’s appointment. Soon, his parents, Laurie and Christopher DeClaire, learned their son was very sick.

Patrick was diagnosed with neuroblastoma, a type of cancer that affects the central nervous system. His cancer was advanced — he had tumors along his spine and in his bones and one that was pushing on his spinal cord, putting him at risk for complete paralysis. The cancer had even invaded his bone marrow.

The DeClaire family’s life changed forever that day. Laurie quit her job at NASA to care for Patrick full-time, and his father and siblings rallied to support him on the long journey ahead.

“This disease is difficult to treat,” said Dr. Wendy Allen-Rhoades, a hematologist-oncologist at Texas Children’s Cancer Center. “It’s rare and needs different types of therapy, which requires coordination and teamwork.”

Patrick’s team included oncologists, nurses, child life specialists, surgeons and radiation oncologists who all came together to help him. They created a customized treatment plan that began with several rounds of chemotherapy and, eventually, a bone marrow transplant. Doctors performed scans every three months to track Patrick’s tumors.

Rare Therapy for Rare Cancer

After four months of chemotherapy, Dr. Jed Nuchtern, a Texas Children’s surgeon specializing in pediatric surgical oncology, removed the tumors that remained along Patrick’s spine. However, some areas in his bones still showed cancer.

The next tool in the team’s arsenal involved a targeted nuclear medicine therapy that combines two radioactive drugs, metaiodobenzylguanidine (MIBG) and iodine-131 (I-131), which posed unique challenges for Patrick and his devoted family. MIBG is available at only a few pediatric cancer centers in the U.S. — and Texas Children’s is one of them.

Because of the therapeutic doses of radiation that come with this therapy, a special suite of three rooms is required. There is a lead-lined patient room where the therapy is administered; an adjoining room with a lead-lined viewing window, where family members can spend the night and be near their child; and an entry area where clinicians can meet, consult and care for the patient.

This novel therapy reduced Patrick’s neuroblastoma, but a significant amount still remained. The next step involved targeted radiation to the remaining sites where cancer lived in his bones. Molds of Patrick’s body, along with a mesh-type mask made in the shape of his face and head, were created to ensure that he was completely immobilized while the radiation was delivered precisely to certain areas of the spine and skull.

Despite the procedures, Patrick remained so positive that his family and friends began calling him “Captain Courageous.” Allen-Rhoades recalls a time when Patrick was in pain. She told him she was sorry he was going through this, and he replied in his characteristic fashion, “It’s no big thing, I got this.”

Following the targeted radiation, Patrick’s cancer was starting to relent, but the fight was not over. Another treatment was required: high doses of chemotherapy followed by an autologous bone marrow transplant. Once again, the treatment was difficult, but in his true “Captain Courageous” spirit, Patrick slowly recovered and was soon flashing his winning smile around the unit.

However, the cancer still had not receded completely. That’s when Allen-Rhoades made a Plea of Compassionate Use to the U.S. Food and Drug Administration (FDA) for a drug called CH14.18, which provides antibody therapy that targets neuroblastoma cancer cells and destroys them. At the time, it was an investigational drug, but the FDA approved its use for Patrick’s case. This six-month therapy was painful and complicated, but in the end Patrick’s cancer finally yielded.

“We were lucky to be able to use CH14.18 for Patrick at the time that we did,” says Dr. Allen-Rhoades. “Now it is FDA approved and is the first new drug for high-risk neuroblastoma in decades. Patrick was a trailblazer.”

Patrick then participated in a study to take DFMO, a drug designed to keep his cancer in remission, which is where he remains today — in remission. When Patrick grows up, he wants to go to college and work as a child life specialist at Texas Children’s Cancer Center.

In the meantime, Patrick serves as a Texas Children’s Cancer Center Ambassador, giving hope to other children with cancer. His mother, Laurie, co-founded Trees for Life, a nonprofit that raises money for research at Texas Children’s Cancer Center.

One Mother’s Journey

By Laurie DeClaire

Patrick’s mother, Laurie, wrote a moving and inspirational account of her family’s experiences during Patrick’s treatment. Today, Laurie serves on the board of Texas Children’s Cancer Center and continues with her work at Trees for Life, the foundation she co-founded to support neuroblastoma research at Texas Children’s. The following is an excerpt from one of her blog posts featured on Texas Children’s website:

Time. It provides us with perspective; a historical roadmap if you will. It illuminates our milestones and achievements. It obscures the insignificant. Most of all, time provides us with the ability to recognize the power of predestined intervention at critical moments in our lives.

My husband and I have six children. Patrick and his twin brother, Trent, are our youngest. We loved them, we wanted them, and we adopted them. Today, I realize they were predestined to become our children. The adoption and access to good medical care are just parts of what we are now thankful for when we look back across the landscape of our family’s journey with cancer.

Patrick would need our care and he would need access to Texas Children’s Hospital. I firmly believe that Patrick wouldn’t be alive today without Texas Children’s and the physicians who treated him — especially Dr. Wendy Allen-Rhoades and Dr. Chrystal Louis.

At the time of Patrick’s diagnosis with stage 4 neuroblastoma, we were told that without treatment he would have had only months to live. He had tumors along his spine, and one of his tumors was located in the spinal column, making it impossible to remove surgically.

We clung to the belief that God didn’t bring Patrick to us only to take him away. We prayed specifically for the destruction of that tumor. Six rounds of chemotherapy later, the tumor was gone.

Cancer’s journey is fraught with frightening and painful therapies. As a mother, the idea of my child experiencing painful treatments burdened my heart with worry. Most adults couldn’t endure the treatments prescribed for Patrick without shedding tears. Of course, he did experience pain, and the doctors and nurses were amazing at helping to manage it. But it was Patrick’s ability to endure it that was miraculous.

I visualized that moment when Patrick would break free from disease and the miracle we prayed for would come. On August 21, 2014, Dr. Louis called to say Patrick’s scans showed no evidence of disease. The news brought overwhelming joy, and we found ourselves jumping up and down with excitement.

It’s been three and a half years since we received the news that Patrick no longer had cancer. Medically speaking, the doctors say he’s in remission. Spiritually speaking, we say he’s healed.