What if your child is not able to experience all the joys of parenthood, as you have been able to? For many children undergoing chemotherapy, infertility is a harsh reality they may have to face in the future. Lucky for Brouwer, he has been given the possibility to one day have children after the devastating diagnosis of a brain tumor at just two years old.
In 2015, parents Dan and Ginger started to notice changes in Brouwer, which sparked concern. “We noticed that his left hand would shake and his mouth developed a slight droop on the left side. This led us to take him to the pediatrician, who recommended us to a neurologist,” Dan said. “By the time we saw the neurologist, his walk had started to change. After the neurologist visit (and before the MRI), Brouwer’s symptoms worsened, it seemed like he was deteriorating by the day. He lost the ability to run and jump and even regressed to crawling at times.”
“Everything Brouwer was experiencing were symptoms of a brain tumor,” Ginger said. “Yet, we were told no MRI was needed, just to go home and everything would work itself out.” Over the course of the next two months, Brouwer was getting progressively worse. They decided to bring him to the emergency room and demand an MRI.
A large number of medical professionals sat down with Dan and Ginger to review the results. “I felt sick to my stomach. Something wasn’t right,” Dan said. Brouwer was diagnosed with pilomyxoid astrocytoma, which is a grade two brain tumor, located in the middle of his brain. The tumor had caused hydrocephalus – fluid buildup in the brain, causing pressure.
After relieving pressure from the brain with immediate surgery at their local hospital, Dan and Ginger needed to discuss the next steps towards removing the tumor. “We were told no surgeon could remove it due to the location of the tumor. It felt like every answer we received at this point was ‘I’m sorry’,” Dan said. “They told us it wouldn’t be unreasonable to just enjoy the time we have left with our child and let it be. We received no hope from anyone,” Ginger said.
In a meeting with the oncologist they had been seeing, the couple asked her, “If this were your child, what would you do?” The oncologist said she would transfer to Lurie Children’s. Dan and Ginger decided to take a leap of faith and do that. “There was a gulf of a difference between the level of care, optimism, and expertise from the moment their transport team arrived,” Dan said. “It was an immediate feeling of hope and a move in the right direction.”
At Lurie Children’s, surgery removed one third of the tumor due to it being located in the middle of the brain. Chemotherapy was now the last option to attempt shrinking the rest of Brouwer’s tumor. “Because of the intense type of chemo Brouwer would need to undergo, his chances of being fertile would go away,” Dan said. “Oncology recommended we look into the Fertility and Hormone Preservation and Restoration Program to see what other options we have.”
The Fertility and Hormone Preservation and Restoration team suggested testicular tissue cryopreservation to the family. Testicular tissue cryopreservation is an innovative option for pre-pubertal males who are not yet producing mature sperm. Surgeons excise a portion of the testicle tissue, which is frozen for the patient’s future use. This could give Brouwer the option to have children of his own one day.
“We didn’t have to think about it very long. It was a low-risk, outpatient surgery with little to no recovery time. Plus he already had so much going on. It’s just another thing to add to our list,” Dan said. “This would give him options. We thought ‘Why not?’”
Dr. Erin Rowell, Director of the Fertility and Hormone Preservation and Restoration Program, performed testicular tissue cryopreservation on Brouwer when he was just three years old, making him one of the youngest children at Lurie Children’s to undergo this procedure. “Dr. Rowell was so thorough and generous with her time,” Dan said. “She has remembered our family after all these years, which is pretty amazing and remarkable.”
“This surgery brought some joy and focused on the future. In the midst of hardships, it gave us something to look forward to like thinking about grandchildren instead of a chemo regime,” Ginger said. “Any mention of adulthood and a long life for your child fills you with hope.” It allowed Dan and Ginger to have some sort of control in an uncontrollable state.
Once his testicular tissue sample was taken and frozen, Brouwer was able to begin intense chemotherapy, consisting of around 25 pills to be taken every six weeks for about a year. “The day we found out his chemo was working we were elated. It was unbelievable,” Dan said. “Other than a scar on his head, he is doing fantastic.”
“Brouwer is now six years old and comes back every six months for scans. It’s a social outing for him. He loves saying hello to anyone he can, as well as running down the bridge. This bridge holds a lot of meaning for our family since Brouwer went from not being able to walk, to running, jumping, and doing 85 percent of the things normal children can,” Ginger said. “Lurie Children’s has become a part of our family and our life.”
“I’ve joined the executive board of the Children’s Research Fund at Lurie Children’s and have encouraged several co-workers to join other boards connected to Lurie Children’s. My employer, Grant Thornton, has been really supportive and has gotten involved in multiple ways,” Dan said. “There is no price you can pay for the years with our son we might not have had and the hope we now hold for the future. You feel compelled to give back. It is impossible to adequately thank the team at Lurie Children’s for bringing us from where we were to where we are now.”