Cooper was six years old when he was diagnosed with craniopharyngioma, a rare and complex noncancerous brain tumour, in September 2016.
After receiving the upsetting news, his family travelled from their home in Fredericton, NB, to the IWK, where Cooper was admitted. Cooper’s parents met with the IWK’s neurosurgery team and learned that Cooper had a tumour the size of a small orange. He would need surgery.
“It was surreal,” said Cooper’s dad, Jon, of that time. “There was so much uncertainty.”
I believe Cooper would not be here if it was not for the IWK.
~Jon, Cooper's dad
It took 18 hours for surgeons to remove Cooper’s brain tumour, which doctors believed he likely had since birth.
Cooper spent 55 days in the IWK recovering from the surgery and getting his diabetes insipidus under control. His mom, Stacey, was by his side the entire time while Jon attended school in Moncton.
Due to damage to his pituitary gland and hypothalamus, Cooper developed several other serious health conditions.
In March 2017, Cooper and his family learned that the tumour had grown back. Doctors determined he would need transsphenoidal surgery to remove the tumour.
In June 2018, Cooper had a check-up at the IWK. Unfortunately, the MRI showed the tumour had returned again, and he would need 30 rounds of radiation.
Fortunately, following radiation treatments, Cooper went into remission and remained in remission for almost five years. However, in July 2023, his parents received the devastating news that Cooper’s tumour had grown back a fourth time and had a cyst growing on top of it, pressing into his optic nerves. Doctors told the family that surgery was not their first option at this time, as there were serious concerns that it could cause blindness.
“Hearing the brain tumour had returned and we were running out of treatment options totally crushed us,” shared Jon. “We didn’t expect that news at all.”
After this devastating news, Cooper’s amazing team of doctors spent weeks consulting with oncologists and neurosurgeons from around the world to come up with the best possible treatment plan. On October 30, Cooper began receiving experimental chemotherapy treatments to help shrink the cyst. Sadly, in early December, Cooper went into septic shock after his central line got infected, and he was airlifted from Fredericton to IWK in the middle of the night.
“He had a high fever, and his blood pressure dropped dangerously low. He wasn’t doing well,” Jon shares. “So, when the pediatrician told us they would be airlifting him to the IWK, we breathed a huge sigh of relief. We knew he would be in the best hands possible.”
Cooper spent the next 15 days receiving life-saving care at the IWK. Thankfully, he recovered from the infection and could return home on December 21, just in time to spend the holidays with his loving family. Cooper, who loves to draw and build LEGO sets with his dad, will spend the next several months receiving chemotherapy at his local hospital in Fredericton. He will continue to visit the IWK every three months for check-ups to ensure his treatment is working effectively and to make every effort possible to put him in remission again.
Jon and Stacey remain extremely grateful for the IWK and the specialized care and support they continue to provide Cooper and them. “I’ve told people hundreds of times, ‘If you have a sick child in Atlantic Canada, you want them to go to the IWK,’” shared Jon. “When you walk through the doors of the IWK, the care starts there, and you know that’s where your child should be.”
UPDATE: On February 8, 2024, the family received positive news from Cooper’s MRI results. His chemotherapy treatments are working! His cyst has shrunk by 30%, and his tumour is stable. His oncology team is thrilled, as is his whole family and community! Cooper will have three-month check-ups and MRIs to monitor his progress as treatment continues.
