In late October, 18-month-old Ursula Joy’s family left their home on Hornby Island for an overnight visit to Salt Spring Island.
They haven’t been home since, and won’t be until at least late next spring.
Ursula had been a bit under the weather for a little while, with what they’d been told was probably a virus, so her parents decided to have her seen at the hospital in Victoria while they were visiting down island.
It was soon discovered that baby Ursula had a brain tumour. She and her mum Ceridwen were flown to B.C. Children’s Hospital in Vancouver, and her father and two sisters, age 4 and 8, followed.
Two days later, baby Ursula underwent a 12-hour surgery to remove a large tumour, which was wrapped around the brain stem and a bundle of nerves on the right side of her brain. A few days later a potential side effect of the surgery was confirmed.
Ursula is unable to swallow, and her right vocal cords are paralyzed. Thus her journey took on another dimension of being fed every two hours by tube. It is hoped that her swallowing reflex will return as healing continues, but this is uncertain at this time.
A biopsy confirmed what was already suspected: the tumour was not benign, but rather a fairly nasty and aggressive type.
Ursula was given a short week to recover from the surgery, during which she stayed with her family at the apartment that Comox Valley charity You Are Not Alone generously provided for the family to use. There she was able to have some fun playing with her sisters and being a regular toddler.
Then she returned to the hospital for surgery to place a catheter so that chemo drugs could be administered directly to her heart. A six- to nine-month regimen of chemotherapy is planned, which includes six rounds of toxic drugs, with each round being stronger than the last. The first dose has been given.
Any of you who have experienced this treatment know just how ill it makes you, and baby Ursula, who can’t even understand what is happening to her or why, is no exception. She suffered high fevers, vomited up her feeding tube several times, and at one point aspirated fluid and stopped breathing.
She is recuperating from the initial chemo treatment, sitting up in bed playing with her sticker books, interacting with her family, laughing and smiling, and playing games of catching a ball. She was even allowed an hour out of hospital and enjoyed a walk to the botanical gardens.
She is soon to have surgery to put a feeding tube in directly through her side, and her second round of chemo was scheduled to begin in the middle of December. Royston naturopath Dr. Kind has also joined the team of specialists who are treating baby Ursula.
Her parents are caring for her at the hospital, and a nanny is living with the other children at the YANA apartment, so that the family can all spend time together as often as possible.
During the chemo treatments, it takes both parents to care for Ursula round the clock, but during her better times between treatments they can spell each other off to spend time with the other girls.
Needless to say, Ursula’s parents are no longer able to work, so fundraising efforts have been taking place to help take financial burdens off these people who already have so much stress to bear.
The Ursula Joy Trust Fund has been set up, and donations of any amount, no matter how small, are being gratefully accepted. Donations can be made at any Coastal Community Credit Union branch.
Ursula’s grandmother, Summer Joy of Merville, recently organized a house concert fundraiser featuring Kel Kelly performing, where a really enjoyable evening was had by all, and $2,600 was raised for the trust fund. Other fundraisers have been going on elsewhere.
It is truly heartwarming to see how supportive the communities in the Comox Valley/Campbell River area and on Hornby Island have been in helping the parents through their darkest hours.
Ursula means little bear, and we are hoping her little bear’s strength will carry her through. And please take time to appreciate your families, gathering together under cheery circumstances, and be grateful for your healthy, happy kids.