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My mother is battling stage iv lung cancer. We are incurring crippling costs for travel and lodging right now. Her story follows. She always took meticulous care of herself and isn't a smoker. In March 2018 and again June 2018, she went to the ER complaining of shoulder pain. They did tests and sent her home with a diagnosis of a muscle pull. She followed up with her primary care doctor. Her pain worsened and in the winter of 2018 her voice became hoarse. She switched primary care doctors in January 2019, and the new one diagnosed her with allergies. She kept getting worse. She went again to the new doctor in February 2019. Allergies and muscle/spine issues. Upon leaving, my mother rec'd a handout to sign up for the online MyChart notification. My mother doesn't have a computer, so she asked me to sign her up. I did. When her chart came up, I saw two x-rays from her ER visits the year before. I clicked on them. The March 2018 x-ray stated that she had a mass in her left lung that needed to be checked. The June 2018 x-ray said that the mass was still there and needed to be biopsied for malignancy. No one, not one healthcare provider over the past year, ever bothered to read the results and tell us.
I called my mother's doctor and she saw us the next day. We met with radiologists and an oncologist at the local hospital, in the same system that hadn't told us about the initial x-rays. Things were shaky from the start. We experienced the same poor communication that created this terrible situation, both between hospital staff, and also to us. I had to call repeatedly because again we were falling through the cracks. The assigned oncologist was terribly dismissive; he said he'd do "chemo light" on my mother, because immunotherapy wouldn't work.
While she was undergoing radiation, I did research and talked to friends to learn of other treatment facilities. The plan was to go elsewhere after my mother completed her radiation. I learned that Yale has a cutting-edge program for metastasized lung cancer. I reached out to them, and since the first conversation, they've been a blessing. The nurse helped me, on the phone, pick out the best oncologist for my mother, and we scheduled an appt.
Two weeks ago, we drove up to New Haven. The oncologist is more than we ever could imagine. She's compassionate, hugged us, cried when I cried, and most important, gave us hope. We thought we'd be there for a few days, but had to stay for over a week because they did comprehensive testing on my mother. We met with the oncologist last week to learn of the results. We learned that there's an immunotherapy clinical trial that is a perfect fit for my mother. We also learned that her lung tumors have gotten smaller from the radiation, and the cancer in other areas hasn't spread. It was all wonderful news. We return to New Haven next week for the start of treatment.
Now to address the fundraising needs. Those of you who know me, know I have a problem asking for help, no matter how small. It's taken everything in me to have to do this, but we're in desperate need right now. Yale has a fantastic social worker who helps low-income people try to find lodging during treatment. We're working on that right now. But the costs incurred over the past two weeks for travel and motel rooms have created a frightening financial problem for us. My mother and I used credit cards to pay for gas and rooms, both in New Haven and on the way up. My mother can't travel in the car for more than four or five hours at a time, so we have to break up the journey. Neither my mother nor I have a savings account, and live paycheck to paycheck. She lives on social security.
The amount I've requested deals with two financial issues: 1. the total that my mother paid on her credit card. It's all for my mother, and I'll deal with my own credit card myself; and 2. the cost for travel up to New Haven next week. As an aside, I reached out to a cancer organization for assistance in travel; they told me that they needed a full week to process the request, so it wouldn't cover our travel to New Haven next week.
Even in these heavy times, moments of kindness shine brightly. From Yale staff, to motel staff, to strangers. We stayed at a rundown motel on the outskirts of New Haven. The door to the outside didn't close properly and we ended up hosting ants through the night. I was so stressed when we departed, that I left my clothes there---underwear, socks, pjs. After stripping the car five times, I finally realized that I'd left my clothes behind. I called the motel and they'd already put my possessions in a box with my name on it. I'll pick it up next week.
Please, please, if any of you have loved one who do not use a computer, make sure that their healthcare is properly articulated, and not relegated to an email inbox.
My mother and I are deeply grateful to you all.
I called my mother's doctor and she saw us the next day. We met with radiologists and an oncologist at the local hospital, in the same system that hadn't told us about the initial x-rays. Things were shaky from the start. We experienced the same poor communication that created this terrible situation, both between hospital staff, and also to us. I had to call repeatedly because again we were falling through the cracks. The assigned oncologist was terribly dismissive; he said he'd do "chemo light" on my mother, because immunotherapy wouldn't work.
While she was undergoing radiation, I did research and talked to friends to learn of other treatment facilities. The plan was to go elsewhere after my mother completed her radiation. I learned that Yale has a cutting-edge program for metastasized lung cancer. I reached out to them, and since the first conversation, they've been a blessing. The nurse helped me, on the phone, pick out the best oncologist for my mother, and we scheduled an appt.
Two weeks ago, we drove up to New Haven. The oncologist is more than we ever could imagine. She's compassionate, hugged us, cried when I cried, and most important, gave us hope. We thought we'd be there for a few days, but had to stay for over a week because they did comprehensive testing on my mother. We met with the oncologist last week to learn of the results. We learned that there's an immunotherapy clinical trial that is a perfect fit for my mother. We also learned that her lung tumors have gotten smaller from the radiation, and the cancer in other areas hasn't spread. It was all wonderful news. We return to New Haven next week for the start of treatment.
Now to address the fundraising needs. Those of you who know me, know I have a problem asking for help, no matter how small. It's taken everything in me to have to do this, but we're in desperate need right now. Yale has a fantastic social worker who helps low-income people try to find lodging during treatment. We're working on that right now. But the costs incurred over the past two weeks for travel and motel rooms have created a frightening financial problem for us. My mother and I used credit cards to pay for gas and rooms, both in New Haven and on the way up. My mother can't travel in the car for more than four or five hours at a time, so we have to break up the journey. Neither my mother nor I have a savings account, and live paycheck to paycheck. She lives on social security.
The amount I've requested deals with two financial issues: 1. the total that my mother paid on her credit card. It's all for my mother, and I'll deal with my own credit card myself; and 2. the cost for travel up to New Haven next week. As an aside, I reached out to a cancer organization for assistance in travel; they told me that they needed a full week to process the request, so it wouldn't cover our travel to New Haven next week.
Even in these heavy times, moments of kindness shine brightly. From Yale staff, to motel staff, to strangers. We stayed at a rundown motel on the outskirts of New Haven. The door to the outside didn't close properly and we ended up hosting ants through the night. I was so stressed when we departed, that I left my clothes there---underwear, socks, pjs. After stripping the car five times, I finally realized that I'd left my clothes behind. I called the motel and they'd already put my possessions in a box with my name on it. I'll pick it up next week.
Please, please, if any of you have loved one who do not use a computer, make sure that their healthcare is properly articulated, and not relegated to an email inbox.
My mother and I are deeply grateful to you all.
Organizer
Sara Leone
Organizer
Raleigh, NC