Finding new ways to address long-term fertility issues may also have a positive impact on the mental health of young people who survive cancer. “It’s a big source of depression in survivorship as these things emerge in combination,” Morley says. “It’s amazing that survival rates have increased so greatly; now we need to be looking at ways to ultimately increase their quality of life.”
For parents like Avello, even discussing the potential of these now-experimental procedures represented a welcome beacon of hope. “It was pretty cool to be talking about Frankie as a grown-up,” she says. “It’s really nice to hear people saying his future is bright, he’s going to beat this, and become an adult. That’s a really, really nice thing to think about when everybody else is saying, ‘chemotherapy, radiation, tumor.’ I like talking about Frankie as a 30-year-old.”
It’s not uncommon, Morley says, for parents to cling to the idea of their child’s faraway future when the “life-and-death stuff” is dominating the present.
“It’s like the one positive thing they’re hearing,” Morley says. “Most of the conversations they’re having are about survival rates and chemo and side effects, and that’s all so hard to process. But we’re giving them the option to actually do something about it. They see this as a glimmer of hope because we’re telling them we see their kids getting through this.”
That’s not to say that a cryopreservation procedure is the best option for every family. Sometimes, treatment needs to begin too quickly, or the patient is too unstable to undergo the extraction. Religious beliefs can play a role. For some, the procedure is still too experimental to warrant an extra surgery. It can be a complicated choice, says Karen Wohlheiter, PhD, a psychologist at Nemours.
“They’re in the process of making a lot of decisions about their child’s care overall, this seems like a big and heavy decision, and in most cases, unfortunately, they need to make it right away,” she says. “Where I come into play is that there can be a lot of associated guilt if they decide not to do it. I think you want for your child what you have, and to be able to give them every opportunity that you can, and it can feel really devastating that you’re ‘taking away’ an opportunity. Cryopreservation is highly experimental, but it’s the one option available. That can be really tricky for families because there’s no proof that it will work in the future.”
Even if the science weren’t theoretical, the future still is; and that kind of abstract decision-making can push parents to conflate their child’s theoretical future with their own reality.
“I’ve had parents of very young children — two- and three-year-olds — be devastated by the news that their child may end up facing infertility,” Wohlheiter says. “There might be a presumption that you’re not thinking about that stuff when your kids are that age, but these parents are in that early phase of having a child and all the wonderful things that come along with it. For them to think their child may not have that, or the option to have that, can be very difficult.”
Some parents also wrestle with the idea that, by making this decision for their young child, they’re taking away some of that child’s autonomy.
“It seems like there’s a major weight that comes with a parent making that big decision for a child,” Wohlheiter says. “There might be a 17-year-old child saying, ‘Yes, I’ll do sperm banking,’ or, ‘I want to do egg retrieval, and I understand the risk of delaying treatment.’ When you’re making the decision to do tissue preservation for your five-year-old, without them being able to give you any real input, that can be really challenging. It’s really important for parents to have support during that time.”
At Nemours, and many of the other sites offering cryopreservation options, meetings with a family psychologist are a crucial part of the process — whether families decide to move forward or not.
“It’s about helping parents have confidence in their decision-making,” says Wohlheiter. “And, moving forward, accepting and acknowledging that they made the best decision for their child at that time. There’s so much uncertainty, and so much, ‘what if I made a different decision.’ We work on not focusing on the what-ifs.”