Lily-Rose knows that not all heroes wear capes. Sitting in her hospital bed, she looks every inch the wee force to be reckoned with as she slips her dad’s hat over her head. The 15-month-old has come a long way. Thanks to Sainte-Justine’s expertise and a state-of-the-art medical device acquired with the help of your generosity, she is now recovering from a cancer that could have cost her her liver . . . and her life.
A few months ago, things looked very different for Lily-Rose. Her parents, Dominique and Philippe, had become worried because her tummy felt unusually firm. At Dominique’s next postpartum checkup, they decided to get a doctor’s opinion.
It turns out they were right to be concerned—Lily-Rose had a severely enlarged liver. She needed to be transferred from Sainte-Agathe-des-Monts to CHU Sainte-Justine right away. Once she was in the institution’s care, a biopsy was conducted that confirmed the worst: Lily-Rose had cancer.
Heading into battle
As they struggled to process the news, Dominique and Philippe drew comfort from the optimism of the specialists looking after their daughter. Lily-Rose, they were told, had a type of tumour that generally responded well to treatment. The plan was to eradicate the cancer with three rounds of chemotherapy followed by surgery. Unfortunately, that plan soon hit a roadblock. Even after the first two doses of chemo, the tumour appeared none the worse for wear. It wasn’t going down without a fight.
“It was crushing. We felt like we’d hit rock bottom. When chemo failed, a liver transplant became the only option. It was far from the ideal scenario, but it was the only conceivable way to save Lily’s life. We were told it would take a miracle to even consider resection.”
Outsmarting the enemy
With the search for a donor underway, it was all hands on deck as the teams at Sainte-Justine continued to seek alternatives to a transplant.
They began by carrying out the third and fourth rounds of chemotherapy—a decision that paid off. Lily-Rose responded to the treatment for the first time, making up for the failure of the previous attempts. But a significant problem remained. The tumour was still large and difficult to access, as it was inside Lily-Rose’s liver and obstructing the main blood vessel that feeds the liver, the portal vein.
At this point, Dr. Caroline Lemoine, a pediatric surgeon specializing in hepatobiliary surgery and transplantation, suggested a procedure that had never been done before at CHU Sainte-Justine: an extreme resection that would remove as much diseased tissue as possible while leaving just 17% of Lily-Rose’s liver intact, combined with a complex vascular reconstruction called a Meso-Rex bypass.
Procedures with this degree of complexity are extremely rare. Although the liver is the only organ that can regenerate itself, specialists generally avoid removing more than 70% to 75% of its mass. However, with the help of your donations, Sainte-Justine recently acquired an innovative piece of fluorescence imaging equipment that has opened the door to life-changing surgeries for children like Lily-Rose.
Involving the injection of a harmless fluorescent liquid, this cutting-edge technology makes it possible to locate tumours with incredible accuracy and delineate surgical margins. Hospitals already use these kinds of revolutionary precision instruments on adults, but they are still relatively new in pediatrics.
“The scan and resonance imaging confirmed that the tumour was very close to the artery and that while it would be difficult, the resection was still possible,” recalls Philippe. Placing their full confidence in Dr. Lemoine and her team, Lily-Rose’s parents agreed to give the procedure a shot.
Preparing for every eventuality
Before the operation, the surgical team went over every possible scenario. It was imperative to have a graft on hand in case the resection failed so that they could proceed with a transplant.
The operation lasted 18 long hours, during which Dominique and Philippe received continual updates. Dr. Lemoine and her team stuck to the initial resection plan. But in another first, they went a step further by replacing a vein obstructed by the tumour. The combination of those 2 surgeries is a first at Sainte-Justine, but also in the Province of Quebec.
The surgery was a success. Although Lily-Rose was forced to return to the OR 18 days later due to a bile leak also detected by the fluorescence imaging device, the worst was over.
“In 90% of North American hospitals, Lily-Rose would have received a transplant and been subject to all the complications that entails. With fluorescence imaging, it’s like we have stars to light the way: we can immediately see where the tumour is and we know exactly where to intervene. That’s not always the case when you don’t have this technology.”
Emerging victorious thanks to your support
Lily-Rose has proven beyond a doubt that she has the strength of a superhero. Seven rounds of chemotherapy, one major resection, and forty ultrasounds later, this resilient toddler is doing better every day. What’s more, much to the delight of her family and care teams, her liver doubled in size in barely eight weeks and its function is completely normal.
This success story is a prime example of your impact on innovation in health care. Lily-Rose wouldn’t be where she is today if you hadn’t helped her care providers grow beyond by acquiring a key high-precision device.
“Medical advances happen so fast. Having this type of technology is essential if CHU Sainte-Justine is to remain at the forefront of pediatric surgery. We can’t do that without donations.”
Lily-Rose’s surgery is the most complex of its kind ever to have been performed at Sainte-Justine. Thanks to you, the hospital will no longer have to borrow fluorescence imaging devices from other institutions, and some 50 children will be able to benefit from their use every year, whether they’re patients in Oncology or other pediatric departments. Moreover, this technology will improve organ distribution to children whose lives depend on getting a transplant.
On September 25, Lily-Rose will be sporting her superhero hat!
Grab your capes, round up your co-workers, and prepare to join Lily-Rose and her parents this September 25 at the Sainte-Justine Challenge!
As a token of appreciation for the exceptional care they received, the family will be the ambassadors of the fourth edition of the Challenge, which aims to raise $525,000 to support excellence at CHU Sainte-Justine.
Assemble a team of four superheroes and come show your support at this fun-filled team-building event. In addition to its fundraising component, the Sainte-Justine Challenge will feature a series of athletic activities and brain teasers.
Together, let’s grow beyond for real-life superheroes like Lily-Rose and Dr. Lemoine!
