On April 28th of 2011, my wife was diagnosed with Chronic Myelogenous Leukemia. A rare, and incurable form of blood cancer. My world imploded. Jesi was strong. I was terrified. She was started on a daily oral chemotherapy, and told that she would remain on this medication for the rest of her life. It is expensive, even with good insurance. (The cash price of this particular medication is over $14,000 for a 28 day supply). With it came painful, sometimes debilitating side effects. In order to survive, it along with a buffet of supporting medications, was absoluetly necessary. Jesi responded well and in November of 2011 the cancer was found to be undetectable. Hidden, but still incurable.
In the time since then, we've celebrated milestones. 1000 days of treatment. 2000 days of treatment. 1, then 2, then seemingly overnight 5 years undetectable. Still taking the expensive and painful medications daily. We raised money for research and awareness for various blood cancer nonprofit organizations. Jesi became a point of contact for newly diagnosed patients who were scared, as she initially was, and who were in pain, as she is to this day. She has inspired many people in their journey through cancer just as her strength inspires me everyday. She's formed relationships with many of these people she otherwise wouldn't have known. "Blood buds" as she calls them. I've published a series of caregiver-help blog entries to help other caregivers like me cope with difficulty and better advocate for their loved ones. Nobody fights alone.
As time has passed, Jesi has maintained an excellent response to medication. Her side effects have worsened consistently. There are days when her legs collapse, unable to bear weight, and I carry her where she needs to go for basic needs. The effects of treatment have affected her ability to work, have severely impacted us financially, and have required me to secure protected leave for when I must stay home and care for her. Jesi has recently entered into an individual clinical trial, stopping chemotherapy under close monitoring. Very few people have been able to successfully achieve this but the medical team is hopeful that (after 6-8 months of painful withdrawal) it will restore her quality of life as she hopefully remains undetectable.
This trial requires us to travel overnight, out of state, every 4 to 6 weeks. Jesi has applied for short term disability from her employer for the projected chemo withdrawal period, which has not yet been approved. This would restore a small portion of her income, a welcome change after missing the greater part of the last 6 months of work. Its no mystery that cancer is expensive.
Jesi has exhausted all of her intermittent FMLA for the year, costing somewhere around $15,000 in lost wages from the FMLA protected time alone. There are days that I too must use FMLA to stay home and care for Jesi. I was surprised to learn that other than co-pay assistance (for the chemo she no longer takes) there is zero available financial assistance for CML from blood cancer non-profit organizations. We never thought that we would get into a position where we would need a crowdfunding campaign. We've historically been the couple who donate TO these, not hopefully benefit from them. We've believed in always having a savings account safety net incase of emergency, but that has been depleted by 6 years of cancer treatment. Gone. Empty. This missed work, and individual clinical trial, will benefit Jesi in the long run. However it is adding expense now, on top of our already pared-down living expense built on the foundation of 2 full-time jobs. We've built our empire together and are on the edge of losing it through no fault of our own. We are struggling to maintain Jesi's health, without losing our home, losing our means of transportation, and keeping our power on. We have exhausted all of our options and our resources. Our friends and family have seen us help others and have always said "If theres anything we can do, ask". This is us cashing in that request. Your donations can help us get through this period without losing all that we have worked as a team to achieve.
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