By Julie Short
The Higgins family received a devastating cancer diagnosis and together found their way through the experience.
On Friday, April 13, 2007, John and Debbie Higgins received some of the worst news parents can hear — their 3-year-old son Carson had cancer.
“The doctors were not sure exactly what kind of cancer Carson had, but it was stage 4,” Debbie Higgins says. “They basically gave us no hope. At the time, we were living in St. Louis. The children’s hospital there doesn’t treat many cancers like Carson’s.”
The family, now living in Bath, has reasons to hope for Carson’s future.
The Diagnosis
When Carson was 3 years old he started limping, which was the first sign something was wrong, according to Debbie Higgins.
“We went for two months to doctor appointments,” she says. “First, they thought his leg was broken. Then they thought it was a bacterial infection. All the tests came back fine. We finally went to a pediatric orthopedic (specialist) who did some blood work. Inflammation was high, but he wasn’t showing any other symptoms. They finally did a bone scan and things lit up. A CT scan also showed a large tumor in his stomach.”
Carson was diagnosed with stage 4 neuroblastoma and he was given little hope to live when doctors discovered the cancer.
Neuroblastoma is a malignant (cancerous) tumor that develops from nerve tissue. It usually occurs in infants and children. It frequently originates in one of the adrenal glands, but can also develop in nerve tissues in the neck, chest, abdomen or pelvis.
The first symptoms of neuroblastoma are often vague, making diagnosis difficult. Fatigue, loss of appetite, fever and joint pain are common. Symptoms depend on primary tumor locations and metastases, if present.
“As you would expect, it was devastating and confusing,” John Higgins says about hearing the diagnosis. “Honestly, I had never heard of neuroblastoma. I do not have many vivid memories from my life, but I clearly recall that moment — and I recall shortly after being told his diagnosis, we were in a dimly lit room waiting for him to come back from scans, and he came in on a gurney, unconscious, and just looked so peaceful and so sweet.”
The doctors suggested the family contact St. Jude Children’s Research Hospital in Memphis, Tenn.
“They had an opening in an experimental cancer protocol and were getting great response for it and had one spot left,” Debbie Higgins says. “We packed up and went the next day. Had we waited another day, we would not have gotten in. At that point, Carson could not walk and his body was covered with cancer. People were already beginning to say ‘goodbye.’ It was hard for our four other boys. The older ones knew what was going on, but it was hard. My husband and I initially went to St. Jude’s with Carson and our youngest son. As time went on, John stayed home with our other boys, but they visited often.”
A Family’s Recovery
While at St. Jude, Carson had 11 rounds of chemotherapy, three weeks of radiation, a bone marrow transplant (using his own stem cells) and surgery to remove a tumor on his adrenal gland.
Childhood cancers make up less than 1 percent of all cancers diagnosed each year, according to information from the American Cancer Society. Approximately 10,450 children in the U.S. under age 15 will be diagnosed with cancer in 2014. Childhood cancer rates have been rising slightly for the past few decades.
Numerous weeks of physical, occupational and speech therapies followed. In total, he spent 16 months at the hospital.
The family’s faith has played a large role in helping them get through this difficult journey. Carson’s positive attitude and zest for life also has been a blessing.
“We saw God’s presence in so many ways,” John Higgins says. “His comforting spirit, Carson’s angels, and the amazing outpouring of love and kindness from families, friends and people we never met. To me, that has been the greatest blessing — experiencing God’s love showering over our family through the acts of kindness and graciousness of other people.”
Today, Carson, 10, is a cancer survivor celebrating the five-year anniversary since finishing treatment and a little more than seven years since being diagnosed.
“We talk with so many parents with children who have all different types of cancer,” Debbie Higgins says. “The survival rates are all different. We keep the hope. I went through every day hoping and praying Carson was going to make it. We now enjoy every minute together and don’t worry about the small stuff. You never know how much time you have with any family members or friends. We appreciate the time we have even more. We have had a lot of blessings. Our children are different because of what we have gone through. We are grateful for what we have.”
The family moved to Bath three years ago but Carson still returns to St. Jude for yearly scans. His check-up this past July was clear.
“With this cancer they do not term him cancer free — he is termed NED or No Evidence of Disease — as with neuroblastoma, the disease can still be in the body, just not detectable,” John Higgins says.
Last month Carson began fifth grade, although he will be the first to tell you he wasn’t looking forward to going back to school. He also enjoys reading, therapeutic horseback riding, tae kwon do and swimming.
“I feel good right now,” Carson says. “My parents really helped me through this, especially my mom. She worried more of the two. I am thankful for them.”
For John Higgins, he notes the journey has been a roller coaster of emotional highs and lows.
“For a parent who has just received this heart-stopping news, you have to find a way to control the chaos and fear — for me that was faith,” he says.
His advice to other parents,“I would urge them to seek second opinions, and to look into hospitals that specialize and focus on the form of pediatric cancer their child has. They need to quickly educate themselves about the disease, so they can ask the right questions of their doctors and medical team. And I would strongly urge them to seek the counsel of other parents who have children with the same cancer as their child — parents are an amazing resource for other parents during the trying times that lie before them.”
For a list of resources to help families who have children with cancer, click here.
