CHICAGO — It was their happiest time: a beautiful baby boy to grow their family to five. But just as the Malooley family was adjusting to their new routine they received devastating news of an aggressive cancer, the likely treatment of which would rob their son of future fatherhood.
“At his four month shots the first week in December, afterwards I kind of felt a knot in his leg, and I just chalked it up to it’s just a little irritated and inflamed,” said Laura Malooley, McKai’s mother.
But weeks later, the knot was still there – and even larger.
“I held him up it was hard it was almost like a shelf because it went from hip to knee,” Laura said.
Nick and Laura Malooley took McKai to the pediatrician. The first step was an ultrasound to better visualize the mysterious appearance of his leg.
“I’ll never forget that day. That’s when the mass was seen and everything cascaded after that,” said Nick Malooley, Mckai’s father. “It’s been a nightmare of a rollercoaster that we haven’t been able to get off of yet,” he said.
“So today’s our long day of chemotherapy. We’ll be here for 12 hours today. We got here at 8:30 and we’ll leave about 8:30,” Laura said.
It’s week 12 of the 40 planned for McKai’s intense treatment course designed to shrink his tumor to a more manageable size so it can be surgically removed.
“They did a lymph node biopsy, bone marrow biopsy and then with all the scans kind of ruled out it being anywhere else in his body, so it was just this massive tumor on his leg,” Laura said.
It’s called rhabdomyosarcoma — a type of cancer that grows in muscle and soft tissue.
“Traditionally is a quick spreading, fast-growing tumor, but it also responds well to chemo,” Laura said.
“The goal is to save his life. The second goal is to save his leg,” Nick said.
But to do both comes with significant risk. Cyclophosphamide — the drug seven-month-old McKai needs to treat his cancer — is one of the most toxic to the male reproductive system. Not necessarily a concern for a young boy, but what about when baby McKai wants to have babies of his own?
“When we’re counseling a 17-year-old boy about their options for sperm banking, he can tell us, ‘I envision my life as a parent’ or ‘This is something I know is important to me,'” said Barbara Lockart, a nurse practitioner from Lurie Children’s Hospital.
“In the case of a pre pubertal patient we can’t offer them sperm banking,” Lockart said.
“Do I want him to have the joys of raising a family? To have that option? Yeah,” Nick said.
The decision was an easy one for Nick and Laura. They enrolled McKai in an experimental study – one similar to ovarian preservation done for young female patients.
“The experimental procedure requires that we take a small piece of testicular tissue, usually in a patient McKai’s age it’s about the size of a blueberry,” Lockart said.
80 percent of McKai’s tissue sample was frozen for his future use – but 20 percent went to researchers at the University of Pittsburgh already working on the process in animal models. Inside the testicular tissue are stem cells. Their job is to spark sperm production at puberty. So once the patient has grown and wishes to have children, the stem cells would be injected back into the patient — reminding the testes they have a job to do – and that’s to produce sperm.
“It really is a leap of faith for families because there have been no human births with this technology,” Lockart said.
But McKai has time to wait for the science to catch up. He is the youngest that’s been enrolled in this research protocol, according to Lockart.
“I think it’s just fantastic that there’s science out there that can give my son an option … for when he does get married, have a family, he has an option to have children,” Nick said.
The process has worked in mammals including mice and monkeys. Scientists at University of Pittsburgh believe human trials will begin in about five years.