Hi, my name is Stephen. As many know, in 2018 I was diagnosed with Non-Hodgkins Lymphoma and was under observation for approximately one year with regular blood work and oncology consults. This has progressed into Chronic Lymphocytic Leukemia, which is treatable but not curable blood cancer. Unfortunately, I have a gene marker that relates to the aggressive progression of the cancer. The first chemo drug which was to provide control for 4-5 years only did so for not quite 2 years. Last April I was referred to Princess Margret Hospital in Toronto, where I agreed to enter into a clinical trial with a new chemo drug. During the early stages of treatment last year, I had an allergic reaction to the combination of washout (to get the first chemo drug out of my system) and the introduction of the new clinical trial drug. This resulted in a severe attack of tumor lysis: when tumor cells release their contents into the bloodstream, multiplying in size and numbers, and affecting virtually all systems of the body. I was hospitalized both in Owen Sound and Toronto from mid-April through mid-May. I was bedridden for a month after release from the hospital, unable to get in or out of bed or the car without assistance, I couldn't walk without a walker. I was unable to drive for at least two months due to the inflammation in my legs and feet. I have not been able to work since. This was a sudden and unanticipated turn of events. My Haematologist/trial director from Princess Margret Hospital told us she was surprised that made it through that and probably wouldn't bounce back if it were to happen again. I have had to make many trips weekly to bi-weekly to Toronto for over a year now. Most were overnight trips. This has put a tremendous financial burden on me. Finally, the overnight trips were too costly and so this resulted in getting up and leaving Owen Sound between 4:30-5:30 am to get to appointments and usually getting home 5:30-7:30 pm that day. It's usually been a 4 hr trip one way. Although I had recovered, slowly to some extent, the CLL has progressed, and now I have to stop the clinical trial drug. I was entered into the new Car-T cell therapy trial as "Patient #1 ", which provided some excitement and hope. However, the trial hasn't opened up yet. This week I am to start on a 3rd chemo drug, which hopefully holds me until the Car-T cell trial opens up. This new chemo drug nor the cost associated with trips to Toronto, is not covered by a clinical trial fund. As of this week, I am required to stay in Toronto for 3 nights a week for the next 5-6 weeks, for treatment and close monitoring because Owen Sound is too far if I need emergency care I may require it suddenly, driving back and forth each day is not an option. My essential care partner must accompany me and miss 3 days of work per week. As my caregiver is self employed and are no benefits or alternative funding to cover this loss, which has been ongoing since last year. Princess Margret Lodge is closed for renovations, I have no friends or family that live in or close to Toronto, so I have had to stay at a Hotel during these stays. I am eligible for some limited assistance, but I am not sure it will cover all costs incurred. Should I be fortunate enough to access the C-T cell trial once it opens, I will have to be hospitalized for approximately 1 month and several weeks after where I will have to stay in Toronto for observation and follow-up appointments. This procedure needs to be closely monitored. In the meantime, I must seek accommodations in Toronto as well as maintain rent for my apartment in Owen Sound, and someone to care for my cat at home. And my essential care partner must maintain her apartment as well, while in Toronto with me. Even with a medical discount at the hotel and parking, my last 3-night stay cost just over $800, plus $100 dollars for fuel. All this is so overwhelming, which only adds to the stress and fear. On the upside, there is much excitement and anticipation with the new Car-T cell therapy. I am still hoping to be the #1 patient for my cancer type. I am reaching out in hope and Gratitude to any of you who can financially contribute, please share this Fundraiser. Thanks to everyone for your support. Please consider donating blood products. I have had many blood and plasma transfusions since last year, this is a BIG part of why I made it through the tumor lysis crisis last summer. With tremendous heartfelt gratitude. THANK YOU all Steve
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