Editors note: Rowland Bell passed away Monday night, hours after this article was published.
For Rowland Bell and Kerstin Byman, it wasn’t supposed to be like this. Recently engaged, and with a baby on the way, they should have been like so many other young couples in Revelstoke. This was to be the happiest time in their lives.
Instead, Bell has been hospitalized for more than three months, with a very uncertain future that will almost certainly require permanent care.
Byman, who has been with Bell in the hospital for the past three months, wrote the Times Review an e-mail explaining what Bell has been going through, in hopes of educating people on this rare syndrome.
With so many people wanting to understand this very rare disorder and how it is affecting Bell, Byman wrote she wanted to shed light on the Bell’s condition, “and to go gather more people sending Bell positive, healing thoughts.”
Bell has paraneoplastic limbic encephalitis (PLE), a rare auto-immune disorder where the immune system creates antibodies that attack cells in part of his brain.
His ordeal began in April 2013, when he was diagnosed with testicular cancer. The tumour was discovered very early and removed, and they were confident no further treatment was required.
This January, Bell started experiencing extreme fatigue, sleeping upwards 20 hours per day. Tests showed low sodium, low testosterone level and low levels of luteinizing hormone, which together offered the first clue to a diagnosis. There were fears he had a tumour on his pituitary gland, but none was found and doctors didn’t know what to make of his symptoms.
On Feb. 7, Bell woke up with chest pains. He went to Queen Victoria Hospital and then was transported to Kelowna General Hospital, where after many tests, he was diagnosed with PLE.
As Byman explains, what is essentially happening is that Bell’s immune system is working to attack cancer cells, but is actually attacking the limbic part of his brain. In the absence of cancer cells the immune system has targeted his brain as the cells appear similar to cancer cells.
The limbic area of the brain controls functions such as memory, learning and emotion.
Strangely, no re-occuring cancer has been in found in Bell, which actually makes his condition much more difficult to treat.
Doctors have said there only 11 other cases similar to his reported in North America, and in two of those cases the problems came after cancer, like Bell.
According to the Encephalitis Society, PLE is best treated by treating the cancer. The absence of cancer in Bell had doctors unsure of how to proceed.
Several specialists throughout North America were contacted who have all suggested a treatment that involves suppressing Bell’s immune system.
After three months in hospital he has had two different types of chemotherapy drugs, high-dose steroids and other immuno-suppresants. He’s had reactions to the drugs, stints in the intensive care unit, infections, fluid build up in his lungs and more. Throughout this Bell remains positive, says Byman.
“Doctors are not optimistic of a recovery, but those who know Bell know that he is strong and extremely positive, something the family feels always helps,” writes Byman. “Even though Bell has been through a lot... he still maintains his gentle, polite, friendly soul, thanking every nurse and doctor that comes in even if they have just performed some uncomfortable test on him.”
Bell’s disabilities include double vision, delirium, hallucinations, memory loss, seizures, tremors, loss of balance, loss of mobility, loss of speech and fatigue. Going forward, doctors have recommended Bell be placed in a long-term care facility, but Byman is hoping he can live at home, even if it means modifying their home and having live-in support.
The Byman and Bell families have faith that Bell will have some level of recovery and be able to help raise their son. They thank those that have shown them so much support and it helps them so much to know how many people have sent well wishes and positive healing vibes, writes Byman.
As is so often the case in Revelstoke, family and friends are rallying to support the couple in their time of need. Brenda Demone and Connie McKnight established a trust account to aid in supporting the future needs of the baby boy Byman is expecting in early June.
To help out, donations can be made at TD Canada Trust by depositing money into account 9360 6269011. A Facebook page with more information called With love for Kerstin Byman and baby boy Bell has been set up. The family will be updating the Facebook page with information and photos.