It’s every parent’s worst nightmare. “Your child has cancer.”
For Nicole and David Garrett, this nightmare became a reality in September 2014. Within days of the diagnosis they were faced with dozens of questions that would have lasting effects on their four year old son, Corbin. With all of the decisions to be made, one that caught them by surprise was the future of their potential grandchildren.
The option to preserve fertility before starting cancer treatment is something most parents have never discussed, or even thought about. For the Garretts, the decision of whether or not to preserve their son’s fertility was, in their words “fast and informal.” Now, nearly five years out from the final treatment, Nicole and David find themselves wondering what many parents in their situation might wonder: “Did we do the right thing?”
More Than a Tummy Ache
When Corbin was four years old, he suffered from a common ailment in children his age: constipation. So, when Nicole was rubbing his stomach and felt something hard, she assumed he was just stopped up again.
“Corbin had been to the doctor numerous times to take care of his irregularity,” says Nicole. “I truly didn’t think it was anything to be concerned about. I remember having family over for the Bronco’s game that evening and asking if they think I should be concerned. The unanimous answer was ‘no.’”
However, when the lump felt bigger the next day, the Garretts decided to take Corbin into Children’s Hospital Colorado to be checked.
“We were taken aback to have an ultrasound. Then during the ultrasound, the radiologist didn’t say anything, which
I thought was odd,” says Nicole. “When they were done, they asked Corbin to pick something out of the toy chest. They had never done this before. That’s when I got the feeling something was not right.”
Nicole’s gut feeling was correct. A tumor the size of a grapefruit had been hiding and growing in Corbin’s abdomen.
“After the ultrasound, a doctor came to talk with my husband and me. I remember him saying that he was an oncologist. I can’t believe I am saying this now, but at the time I had no idea what an oncologist was,” says Nicole. “It took a few minutes for me to register that Corbin had cancer.”
At only four years old, and just starting preschool, Corbin had Burkitt’s Lymphoma, a fast-growing cancer in the body’s lymphatic system.
“It was such a crazy night. We thought we were going in for a diagnosis of constipation and the next thing we knew we were being admitted to the hospital for cancer,” says Nicole. “It was such a blur. Corbin had to be poked, prodded, and tested for all types of things to get more information. David and I were in shock.”
Over the next few days, Corbin’s care team developed a treatment plan and were ready to get started. However, among a million other decisions, Nicole and David had an unexpected decision to make: whether or not to preserve Corbin’s fertility.
“At that time there was so much going on and so many documents to be filled out that when the question came up, we weren’t sure what to do,” says Nicole. “It caught us off guard to be talking about saving Corbin’s sperm when he was so young. It’s something most parents don’t talk about.”
It’s not just parents who tend to overlook fertility preservation. According to a study from the Journal of Adolescent and Young Adult Oncology, less than 5 percent of young women and 43 percent of young men are seen by a reproductive specialist before treatment. The gender difference is due mostly to the ease of collecting sperm compared with the difficulty of preserving eggs, the latter of which can delay the start of treatment by as much as two weeks. Still, in prepubescent male patients who are not yet producing sperm, fertility preservation requires banking testicular tissue with the hope that in the future when the child wants to start a family, science will have developed a way to use stem cells inside this tissue to generate sperm. The difficulty and uncertainty of fertility preservation in prepubescent boys means that the question of future fertility often takes a backseat to the more pressing concern of immediate survival.
Pediatric cancer used to be a death sentence. But now the survival rate is about 90 percent, and with so many young patients going on to live full lives after treatment, quality of life issues are increasingly important. Now the question is not just whether a child will live after cancer, but how they will live. This is where programs such as the CU Cancer Center Oncofertility Program come in.
Certain types of chemotherapy and radiation can cause damage to the reproductive organs in both males and females. Although these treatments are necessary and lifesaving, they may lead to infertility or inability to have children in the future. Launched in 2012, the Oncofertility Program at CU Cancer Center offers fertility preservation procedures such as freezing sperm, eggs, or testicular/ovarian tissue before treatment begins. By freezing the reproductive cells, patients going through cancer have the opportunity to use them in the future should they choose to have children. If a patient has already completed cancer therapy, the program can help with in vitro fertilization, egg donation, or even surrogacy options.
CU Cancer Center’s Oncofertility Program is one of only a handful in the United States that provide a multidisciplinary approach to cancer treatment planning and care. The program helps young patients and their families create short-term and long-term reproductive plans with the help of fertility preservation doctors. These plans usually start before cancer treatment begins and finish long after the treatment plan ends. In some cases, reproductive plans can start after treatment is completed. In other cases, the plan has to come first.
The Right Decision
In Corbin’s case, the decision whether or not to preserve fertility was a tough one.
“If we had gone forward with preserving his fertility it would have delayed starting treatment,” says Nicole. “We couldn’t help but wonder if delaying treatment, even for just a couple of days, would affect his prognosis. We decided that it was not worth the risk.”
In the end, Nicole and David decided not to go through with fertility preservation for Corbin. Now, Corbin is cancer free and nearly five years out from his last treatment. Looking at him, you would never believe he once was fighting for his life. When he is not out on the ice playing hockey, he enjoys hanging out with friends and bugging his little sister.
“As he gets older, I do wonder sometimes if we made the right decision,” says Nicole. “I try not to worry about it though. In the end, I believe we made the best decision we could at the time. We have a healthy boy who gets to grow up. His ability to have kids is something we will deal with in the future.”