Last October, my wife Ceridwen Joy and I realized that our youngest daughter, year and a half old Ursula, was ill. She had had a cold, but she was over that, and she had been teething, so we’d thought that perhaps she was getting some new teeth. But now she was walking around the house crying continually and complaining of an ‘owie’ in her head.
We were prepared to take her to the local clinic, but as we had to go off-island on a day trip to Salt Spring Island, we decided it might be better to take her to be seen there. During that day on Salt Spring, Ursula started to have small seizures – vomiting, turning pale and going into a stupor. She was also arching her back very strangely. We decided to stay over in Victoria and take her into the hospital there. While in the waiting room she experienced another of her seizures, and while they didn’t know what was wrong with her, it was obvious that she was very seriously ill.
And then every parent’s worst nightmare became true for us. A CT scan revealed a very large tumour growing in her cranium at the right side of her brain, pressing against her brainstem. She was immediately airlifted to BC Children’s Hospital for emergency brain surgery. We were informed that the tumour was impeding the flow of her cerebral spinal fluid, and that without immediate
surgery, she would die. The twelve hour surgery was performed on Oct. 26 with a large team of surgeons and assistants working in relays.
Thankfully the surgeons reported success; the tumour was almost completely removed. It had been entangled in many important nerves, and we were told that our baby may have some hearing loss, some paralysis, etc., but she was alive and the tumour was gone. We of course were hoping for the best, but within days it became apparent that Ursula had paralyzed vocal cords on her right side and could not eat or swallow, so she had to be connected to a feeding tube. She also was deaf in her right ear. There were many other complications, but the worst news was the result of the biopsy of the tumour – anaplastic ependymoma, World Heath Organization grade 3 – a very malignant and cancerous tumour.
We were in for an extended hospital stay as Ursula received six gruelling rounds of intensive high-dosage chemotherapy. Our quiet life on Hornby Island with Ursula and her two older sisters was turned completely upside-down and had been suddenly transformed into a hectic and agonizing life in Vancouver. The amazing organization YANA (You Are Not Alone) gave us an apartment to use near the hospital, for which we are ever grateful. Without this, we don’t know how we would have managed. One of us had to be on duty at Ursula’s side twenty-four hours a day, comforting her, entertaining her, and tending to her every need, while the other attempted to keep a home and family functioning.
After the final chemo treatment, Ursula received a bone marrow transplant. Then, eight months later in late June, Ursula, who had had her second birthday in hospital in April, was finally discharged. After various out-patient testing was completed, we were at last able to return to our home on Hornby Island. Ursula is doing very well at present and considered to be in remission. Fortunately, her brain development has not been affected; and she has recently regained her ability to swallow and is eating normally again, something we weren’t sure we’d ever see. She is finally getting to be a normal little girl again, playing with her sisters and enjoying the summer, although she will have to be constantly monitored for recurrence of the cancer.
However, due to the chemo and bone marrow transplant she now has a severely compromised immune system, and while we were away for the entire winter, our Hornby home was visited by rats, dampness and mould. Consequently, we are now living in a professionally cleaned holiday rental trailer on our property while we thoroughly deep-clean our house and attend to large-scale repairs and renovations in order to make the house habitable for a toddler with Ursula’s condition.
I am a rare book dealer by trade, but my business basically came to a halt the entire time we stayed in Vancouver to be at Ursula’s side. In order to raise funds for the renovations and living expenses that we now have, we will be holding a benefit book sale this weekend. We have over 400 boxes of older books in storage, close to 10,000 books – the old stock from my long-ago bookshop in Vancouver, mixed with private collections purchased and unprocessed over the last 30 years. We have everything from mysteries to science fiction to literature to Canadiana to art books to pulps to vintage paperbacks to, you name it. We are pulling it all out of storage and having a giant fundraising book sale at the Hornby Island School Gym on Saturday, Aug. 17 from 10 a.m. to 8 p.m. and on Sunday from 10 a.m. to 6 p.m. Books will cost $3 for hardcovers, $2 for trade paperbacks and $1 for paperbacks and kids books, and there will be some special books at special prices as well. You will definitely not be disappointed!
This will be an amazing sale with large quantities of interesting books offered very cheaply, with the funds raised going to help pay for renovations to our home to make it safe for little Ursie to live with her family. Why not take a trip over to beautiful Hornby Island, enjoy the gorgeous island scenery, and take home a few books home with you?
Donations will also be gratefully accepted to the Ursula Joy Trust Fund at the Coastal Community Credit Unions in Courtenay, Campbell River and on Hornby Island.
We would like to take this opportunity to thank, from the bottom of our hearts, everyone who has helped us on this journey, with donations of time and money and prayers and healing thoughts and energies and good wishes. If there’s one thing we’ve learned it is that the Comox Valley/Campbell River/Gulf Islands communities are the most generous people anywhere. We couldn’t have made it through without you!
— Michael John Thompson