Dear Friends and Colleagues:

Our dear Barbara is no longer with us and is now finally free of this disease.

Given CNETS Canada's shared commitment to promote Research, Awareness, Education and Support, I'll provide more, rather than less, detail on Barbara's passing.

Family and friends were with Barb as she comfortably slipped away Monday September 5th 2011 at 9:43 P.M. This, despite the latest best efforts since admission 16 August to Princess Margaret Hospital and Toronto Western Hospital to remedy the growing cascade of events including new onset focal neurological deficits from a large brain abscess and significant thrombocytopenia leading to intracerebral hemorrhage with transtenorial herniation. Teams representing Medical Oncology, Neurosurgery, Haemotology, Infectious Diseases, Pathology, Advanced Critical Care Nursing, amongst others, struggled to understand and intervene. The current, best understanding for the outcome of the diagnosis made five years ago - well-differentiated advanced metastatic pancreatic neuroendocrine carcinoma (Insulinoma) - is multi-factorial: a large cerebral abscess (caused by an opportunistic infection - Nocardia); a sulphur-based major antibiotic (Septra main known side effect - known to cause thrombocytopenia); high dose steroids (Dexamethasone – to reduce inflammation of cerebral tissue), and; the possible impact of bone marrow infiltrate (immune response suppression from the insulinoma).

In short, Barbara's autoimmune system disabled all efforts at help as 15 bags of platelets in a 24 hour period (the normal maximum is 3 bags per 24 hour period) only raised her platelets from 8 to 80 (normal range is 150-400). Four infusions of IVIG (each infusion has the antibodies from 20,000 donors) failed to help throughout the infusion of platelets. High dose steroids also failed to have much impact.

This happened so quickly and came as a shock to all. Family had a wonderful visit with Barb on Saturday mid afternoon and we had just signed consents for Barb's transfer Tuesday morning to one of two Medical Oncology Rehabilitation sites ( St. John's or Toronto Rehabilitation Hospital - Hillcrest) subject to bed availability. (Ironically, Barb worked for more than twenty-five years at Toronto Rehab Hospital as an Occupational Therapist in Psycho-Geriatrics). By dinner time her platelets had plummeted to 8 and we began our final journey. It's as if Barb's body held on for that last family visit.

Given that Toronto Western is a teaching hospital, we've given permission for an autopsy (with the explicit understanding that any clinically relevant findings will be carefully documented and widely disseminated) so that her family/CNETS/others might learn and for the benefit of future patients. Following this autopsy, it was Barb's wish that she be cremated.

We've made arrangements with The Mount Pleasant Cemetery & Visitation Centre, 375 Mount Pleasant Road (East Entrance), Toronto , ON , M4T 2V8 , Tel: 416-485-5572. Visitation will be this Saturday evening (September 10th, 6:00 - 9:00 P.M.), with a Sunday Service in the Chapel (1:00 - 1:45 P.M.) followed by a reception (2:00 - 4:00 P.M.).

We hope that Barb's Obituary will help, even just in some small way, to raise awareness about Neuroendocrine Cancers. It will direct donations to the Carcinoid NeuroEndocrine Tumour Society (CNETS) Canada through Canada Helps, www.cnetscanada.org, donor cards at the Funeral Home, or directly to our Treasurer: Vernon Holt, 1608 Blakely Drive , Cornwall , ON. , K6J 5P4 .

Christine and I take some comfort in that Barb's wishes for a bedside service were respected just before and, again, after her passing. And we know that Barb especially appreciated visits from Hospital Spiritual Care Professional Staff over the past two weeks.

Given Barb's diagnosis by another major Toronto Teaching Hospital (Sunnybrook) almost five years ago - a matter of months - we are grateful for this gift of time together and a quality of life we didn't think possible. We are thankful that Barb benefitted from some of the best treatment options available, both here (Princess Margaret, Toronto Western, London Regional Cancer Centre) and abroad ( Royal Free Hospital , London , England ). Consistent with our CNETS Vision, Christine and I are very committed in our work for the equitable and seamless access, for all Canadians, to the full continuum of quality clinical treatment path options available and the related patient-centered care.

Kindest best wishes for good health for all,

Jim Kormos
(Jim, Barb and Christine)