Lilah's SickKids Story
Wednesday, August 9, 2023
Lilah's SickKids Story
Born with cancer. Imagine that. It's often how people refer to young Lilah's condition. Doctors discovered Lilah's cancer shortly after birth in the form of a golf-ball sized tumour. Five years after undergoing an operation and multiple bouts of chemotherapy, Lilah can now call herself cancer-free.
Lilah, 5, embodies the qualities of a survivor. She inspires many with her positive spirit, resilience and strength.
See what Lilah's parents have to say about Lilah and the amazing staff at SickKids by clicking on the video below.
Toronto.com News Story Re: Lilah
Neuroblastoma program at SickKids sees about 20 patients each year.
On the day she was born in 2004, at eight pounds, three ounces, Lilah Petersiel was diagnosed with neuroblastoma.
Before Lilah was born, a routine ultrasound showed she only had one kidney. Following her birth a scan revealed a tumour the size of a golf ball on one of her adrenal glands, and she was diagnosed with the rare and deadly cancer.
She immediately began treatment at The Hospital for Sick Children and spent the majority of the first year of her life there.
“We certainly had a rude awakening into parenthood,” said Tami Moscoe, first-time parent with husband Erik Petersiel.
“(While) other parents are wondering, ‘Is my kid eating or sleeping properly,’ I’m worried about is my kid thriving and surviving.”
Neuroblastoma is the third most common pediatric cancer after leukemia and brain tumours. According to the National Cancer Institute, neuroblastoma usually can be found in the adrenal glands that sit on top of the kidneys, which is where Lilah’s cancer was found. These glands are responsible for making hormones that help control heart rate, blood pressure, blood sugar, and the way the body reacts to stress.
It often affects children under the age of five.
Between 50 and 60 patients are diagnosed with neuroblastoma each year, according to Dr. Meredith Irwin, a clinician scientist at SickKids and Lilah’s oncologist.
“Most of the time it’s in the abdomen, below the chest...half the time it spreads to other parts of the body and when it spreads the survival rate is not great,” said Irwin.
“We estimate for kids that have neuroblastoma who are less than five years of age, about less than 50 per cent of them will survive.”
Once it spreads it gets more challenging to treat because different therapies are needed for the body, said Irwin.
There’s no way to prevent neuroblastoma, according to Irwin. There’s no screening test that can be done to catch it before it starts, either. The only option is to either remove it or treat it once it’s found.
In Lilah’s case, the cancer was caught early and was removed. However, it came back three months later in a different spot.
“That was a little unusual,” said Irwin. “Most of the time when we remove it we’re good. And everything looked very good under a microscope. (But) she did require some chemo and further surgery.”
According to Moscoe, the surgery and rounds of chemo was about a six-month process.
Irwin and a team of doctors are part of an active research program at SickKids that focuses strictly on neuroblastoma. The downtown hospital sees about 20 such patients a year, according to Irwin. The program also works with a team of surgeons, nurses, nurse practitioners, social workers to provide a complete care system to its patients.
Irwin also does research for neuroblastoma in the Cell Biology Program and the JamesFund for Neuroblastoma Research Labs, and is in the process of testing new drugs on mice with neuroblastoma. Irwin, along with the other doctors, is trying to pinpoint the genes that cause it and make it spread.
The program was established in 2007 and is working on becoming a more specialized centre to have all patients with this particular cancer to be treated there.
“The neat thing that we do here is what we like to call our bench-to-bedside research, where we actually get cells from our patients (with neuroblastoma) and bring them over to the lab, with permission of course,” said Irwin.
By getting those cells from patients, Irwin and her team are able to test on the most resistant cells to find out why the cancer is so persistent.
The funding for most of her research comes from Lilah’s Fund, a charity established by Lilah’s parents to raise money for neuroblastoma research. The couple, who live near Oakwood Avenue and Vaughan Road, got the inspiration from another family from Peterborough whose son, James, went through the same thing and created the JamesFund.
It’s been seven years since its establishment and according to its website, has raised $660,000.
Moscoe said Lilah is aware of what’s happened to her when she was a baby, but she hasn’t let that define her.
“She always knew about it on a very high level. Its just that her understanding of it has grown more sophisticated because there’s pictures of her,” said Moscoe.
“She went from looking like a monkey with hair everywhere to being as bald as a ping pong ball. We never tried to hide it from her.”
Lilah has been cancer-free for eight years and goes for a routine check-up at SickKids every six months.
“There was never any question that we weren’t being treated by the top experts in the field,” said Moscoe.
“It’s a phenomenal place because they really do so the best that they can to take care of families holistically and that was really amazing.”
To find out how you can help us help SickKids, visit: www.ReferForSickKids.com.
Thank you for reading and watching today’s BLOG!
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