A GoFundMe campaign that has been created for a young Estevan girl has received excellent support.
The campaign, named Olivia Hirsch – Seattle, WA Clinic Trial, was started by Olivia’s mother Jen, and is raising funds for Olivia to receive a treatment in Seattle for an inoperable brain tumour.
As of Thursday at 7:30 a.m., it had raised $10,042, more than two-thirds of the way to its goal of $15,000. Thus far it had 52 donors.
In her post, Jen Hirsch said that at the end of April, Olivia was rushed by ambulance to Jim Pattison Children's Hospital in Saskatoon. The following days were a blur and their worst nightmare.
“Olivia was diagnosed with DIPG (diffuse intrinsic pontine glioma) which is an inoperable brain tumour located in the pons area of the brain stem and her disease had progressed to the point that within a day or two of being admitted into the hospital, she had lost the ability to walk, speak and eat and we were told that she may only have a week or two left to live,” Jen Hirsch wrote.
Her parents, Jen and Aaron, had the choice to either take her home to begin hospice care or try radiation treatment. Her medical team was concerned that she would not make it through the first two weeks due to the swelling these treatments inevitably cause, but they felt they needed to try it, and so they prepared to face their next big challenge.
“We knew that many, many people were praying for her, sending energy healing and just good vibes and I know in my heart that that had a big impact on how things turned out,” Jen said.
Olivia began radiation and made it through those dangerous first two weeks with no adverse side effects, and has been getting stronger ever since. She has regained the ability to walk, talk, dance and play.
As of her August MRI, her tumour has decreased in size by about 60 per cent, which was much better than anyone expected as Jen described DIPG as stubborn and aggressive. Oftentimes, despite radiation treatments, it will not shrink at all or will even continue to grow.
The Hirschs applied to have Olivia enrolled in a clinical trial for an experimental drug called ONC201, which is not available in Canada.
ONC201 targets the DRD2 dopamine receptor, which is over-expressed in kids with DIPG, while leaving healthy cells alone. Jen described it as the most promising clinical trial available, and side effects, such as nausea and fatigue, are minimal and though it isn't a cure, it buys them time while they wait for one.
In September, they had a teleconference with Dr. Vitanza, a pediatric neuro-oncologist from Seattle who specializes in DIPG. He told the family that there were nine spots left, and that kids would be enrolled three at a time, every few months.
They learned in October that Olivia had not been chosen and they were disappointed but still positive that even though there were no guarantees, eventually she would get in.
“A couple weeks later, we got a call letting us know that she was picked, last-minute out of a lottery of 12 other kids to be accepted into the trial,” Jen said.
With 11 days to spare, Olivia had a few tests done, they got their passports, and they were off to Seattle. Her husband’s sister and brother-in-law flew out there to be with them and help them so they could focus their attention on Olivia.
“Olivia has been doing so well; she quickly learned to swallow pills, has not had any side effects, and her appetite and strength are improving,” Jen wrote.
They will have to return to Seattle every nine weeks for the next two years, so they will be fundraising through GoFundMe and other platforms to help with living and travel expenses.
“We believe with our whole hearts that Olivia will get through this, and we thank you for your help in making it possible through your continued prayers, positivity and support. We have been blessed with the most loving and helpful family, friends and neighbours and are so grateful to everyone in our community. We love and appreciate you all.”
You can visit https://ca.gofundme.com/f/olivia-hirsch-clinical-trial-expenses to support the campaign.
