Cancer in the Family: The Li-Fraumeni Syndrome

Father and daughter Nate Bowen, 41, and Annabelle, 2, were recently diagnosed with cancer at the same time. What puzzled the doctors the most was that baby Annabelle was the second child in the family who was diagnosed with cancer.

Cancer in the family started in 2018 when the couple lost their baby Crosby to a very aggressive brain tumor. The family grieved but eventually decided to have another child.

"We decided to have another child," Nate said. "We felt there was another person meant for our family. And so we had Annabelle, and she's been awesome and great."

In 2020 however, the couple noticed that Annabelle had a bump on her leg. When they returned to Texas Children's Hospital for a check-up, the doctors said the mass was vascular. They eventually diagnosed Annabelle with rhabdomyosarcoma, a soft tissue cancer of the muscles. The doctors successfully removed her entire tumor before going through chemotherapy. The chemo sessions will end on January 24.

The doctors did several tests to understand why the couple had two children with cancer.

Read Also: New Satan Club: Parents Upset at School for Allowing Club To Have Fun Activities in Campus

The Li-Fraumeni syndrome

The doctors suspected that Annabelle and Nate share a rare condition called Li-Fraumeni syndrome. It is a condition where the TP53 gene makes broken p53 proteins, which cannot prevent the development of cancerous tumors. Doctors suspect that Crosby had the condition, too, although they are not yet sure about it.

Nate's wife, Allison Bowen, and children Dalton and Tessa do not have it. Bowen said he must have developed it on his own as his parents tested negative on the mutation.

Although Nate Bowen never had cancer as a child, doctors did several cancel screenings on him. In September, he was diagnosed with a brain tumor or grade 2 astrocytoma and had it removed a month later. He opted not to have chemotherapy or radiation as it would increase his chances of having other types of cancers.

"We're trying to be very careful and only do that if they absolutely need to," he said. The doctors successfully removed 90 percent of Nate's cancer, but he still has 10 percent cancer cells remaining in his body.

Nate has been recovering well, but the family admits that it is challenging to have two family members with cancer. Annabelle needs to spend a lot of time in the hospital because developing a cold or fever requires extra medical support.

The cancers often associated with Li-Fraumeni syndrome include breast cancer, a rare form of bone cancer called osteosarcoma, and cancers of soft tissues.

Li-Fraumeni syndrome is likely to happen in 1 to 5,000 to 1 in 20,000 people worldwide.

Strong faith and network of support from the community

The family accepts that cancer will always be in their lives because of Li-Fraumeni syndrome. Likely, the father or daughter will soon develop another form of cancer. Nate, however, has become more focused and appreciative of another day or a week in their lives.

 Nate said that having a solid faith in God and outpouring support of family and friends helped them battle cancer and accept Li-Fraumeni syndrome.

Related Article:  The Common Challenges of Family Life