As part of The Lilabean Foundation’s goal to bring increased awareness to pediatric brain cancer, we will be featuring stories of amazing and courageous kids and families whose lives have been impacted by this terrible disease. This is our second story in the series.
As May is brain cancer awareness month and we prepare for the St. Michael’s Running Festival on May 16th, we are honored to introduce you to Jack Purssord.
As soon as he was born, Jack was an easy going and laid back baby. He was quiet and content, seeming to take it all in, his mother, Bev Purssord, remembers. Jack was the second born child to Bev and JP Purssord. His sister Kaitlyn was three years old when Jack was born. “I used to think he was like an old soul … he just had a very calming presence,” Bev said.
Jack was born on June 17, 2009. As soon as Jack was born, Bev remembers looking at him and thinking that he had the most perfectly shaped head. “It was one of first things I noticed about him … which turned out to be kind of ironic,” she said.
Just four short months after his birth, Bev and JP would find out that Jack’s beautiful head was housing a very large brain tumor. The most complex organ in Jack’s little body was being taken over by a group of cancerous cells whose only purpose was to multiply uncontrollably.
The Purssord’s heartbreaking encounter with brain cancer began at Jack’s four-month wellness check up. Prior to the appointment, Bev and JP had noticed that Jack’s eyes were not focusing. Bev, assuming that Jack possibly had a lazy eye, made a mental note to mention it to the pediatrician at the appointment.
However, as soon as Bev lay Jack down on the table in the pediatrician’s office, it became clear there was something much serious going on. The pediatrician noticed that his eyes were not focusing and immediately asked Bev how long this had been occurring. She then asked Bev to breastfeed Jack. Apparently, when children have neurological issues, they twist their arm as they nurse. Bev had noticed Jack doing this.
The pediatrician grabbed Bev’s hand and told her these symptoms were not good. The Purssords immediately took Jack to Children’s National Medical Center for a CAT scan, which confirmed their worst fears. Just a few hours after being admitted, Jack was diagnosed with a low-grade optic pathway glioma.
Optic pathway gliomas are brain tumors that arise in or around the optic nerve, which connects the eye to the brain. These types of tumors are serious, but have a relatively high cure rate. They account for 5 percent of all childhood brain tumors. They are typically slow growing. Doctors believe that Jack’s tumor formed in utero because of its size.
Initially, Jack’s prognosis was positive. After a craniotomy to biopsy the cancerous tissue, the Purssords were told Jack’s type of tumor is typically easy to treat. The plan was to begin a chemotherapy regimen to stop the growth, shrink the tumor and stabilize it.
From the start, things did not go as Jack’s doctors anticipated. Jack’s tumor was more complicated because there were multiple types of cells in it, making it more difficult to treat with a standard chemotherapy regimen.
Jack was sick from the chemo from the start. He had a lot of nausea and did not want to eat. He stopped breastfeeding at five months and needed a feeding tube. He had a hard time gaining weight, which made him very weak and tired all of the time. Jack also had a hard time sleeping and had his days and nights reversed. As the chemo wreaked havoc on his tiny body, the tumor continued to grow.
For as awful as he felt, Jack continued to be very happy and easy going. Day after day, “he would just roll with it,” Bev said. He had very little energy though and was not moving around much. He did not meet any of his milestones. “I cannot remember him ever playing,” she said. He would just sit back and observe.
By the time he was 18 months old (14 months after his diagnosis), Jack’s doctors had tried six different chemo regimens with no success. Bev and JP had watched Jack’s condition deteriorate. Jack was becoming weaker and sicker as the tumor continued to grow. Around this time, Jack had a second brain surgery to place three shunts to relieve pressure from fluid build up caused by the tumor. Helpless and heartbroken, the Purssords continued to hold out hope for momentum to change.
As options were dwindling, Jack’s doctors decided to try debulking the tumor to buy more time. debulking means to surgically remove as much of the tumor as possible. The goal of debulking is to increase the likelihood that the chemotherapy can kill the cancerous cells. Jack’s surgeon was able to remove 40 percent of his tumor, which gave his doctors and parents some hope.
In the midst of this very difficult journey, the Purssords were blessed with another child. Sam was born on March 16, 2012. Sam arrived 10 weeks early and after spending six weeks in the NICU he was able to go home.
After the debulking procedure, doctors told Bev and JP that there were only two chemo regimens left to try. Jack had an MRI after he started the first option and it showed that the treatment was not working. Soon after starting the last available treatment plan, Bev knew right away it was not working. “I could always tell when the tumor was growing based on how Jack was acting,” she said. Doctors did one more MRI, which confirmed that Bev was right. After consulting Jack’s doctors, Bev and JP chose to stop all treatment and Jack entered hospice in January 2013.
Jack passed away on February 1, 2013. He was three and a half years old.
The entire time Jack was sick, Bev and JP felt like they were always racing against the clock. There were not enough treatment options for Jack’s brain cancer. “We always felt like we needed to buy more time for other treatments to be available”, Bev said. “What we needed to beat the cancer just doesn’t exist. It’s no fault of our doctors.” Time ran out for Jack, but the fight continues for the Purssords to help find a cure for brain cancer.
There is not enough research and money for pediatric brain cancer. Brain tumors are the leading cause of cancer-related deaths in children 10 years and younger, but only about one percent of the American Cancer Society’s public revenues are spent on pediatric cancer research. This is not even close to the amount needed to help save the lives of the 11 children who are diagnosed with a brain tumor every single day. This comes out to more than 4,000 children a year.
There were not enough treatment options for Jack. Children like Jack need your help and THEY NEED IT NOW. Click here to learn how you can help raise awareness and money for pediatric brain cancer.