Cancer Devastates Family
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Cancer Latest Tragedy To Leave Family Devastated
The new Millennia was supposed to give the Richard and Susan Russell family a brighter future. The 10 years they were leaving behind had delivered a jaws-of-life car accident involving their only child Hilary, and a category 5 hurricane that crushed South Florida but spared their street - EXCEPT for the Russell house, which sustained enormous damage from giant neighboring banyan trees that came crashing down on house and car. Both events created lasting consequences. Hilary developed migraines from her head injury; the house took years to repair, and if that wasn't enough, Richard was forced to retire from 20 years of part-time college English teaching due to age and approaching disability. Once a full-time celebrated university professor elsewhere, Richard discovered the new reality of the adjunct college instructor the day the family arrived in Florida in 1976: No full-time positions anymore, no pension, no benefits.
Fast forward through the next four years with the loss or serious illness of nearly every member of the family. The death of Susan's father; the death of Richard's only sister; a broken back for Richard and the onset of Parkinson's-like symptoms; Susan's cancer, and then most painful of all, the loss of the gifted Richard, a poet who published in Rolling Stone, served in the First Gulf War in the Red Sea war zone onboard a U.S. Navy ship as a temporary-duty college English teacher, a hero who never gave up and never gave in.
A year later, Susan's only sister died suddenly. It was already too much, but it was, in reality, only just beginning. Hilary's migraines were continuing, but she had been accepted into a prestigious graduate public affairs journalism program at the University of Illinois and she was determined to tough it through, managing intensive coursework and, later, competitive press conferences and assignments at the state Capitol.
Graduation came and the search was on to find both a good media job and some relief for the headaches. She had, so far, not allowed anything to get in the way of her future plans, but the "bridge out" sign on the road was just ahead.
In February of 2011, Hilary was at home in Illinois in her apartment when late one night she collapsed with excruciating back pain. She was rushed to an emergency room and a few hours later she was diagnosed with stage 4b cancer. It was not connected to her headaches. It was in her spine and other bones. She was given a grim diagnosis, less than a year to live. All of it was so beyond any questions; so incredible, so unfathomable. Hilary was just 38 years old. She had just gotten her master's degree and was getting ready to start her real life. She dreamed of a great job, a family, picnics, paddle boarding. She had already proved she could surmount everything that had been thrown at her: a car accident with a concussion and broken bones; a hurricane, losses of nearly everyone in the family, a grueling graduate program successfully completed in spite of her headaches. But now there was this!
Hilary arrived in South Florida a few days later so her mom could take over as caregiver. She then started a grueling two-years of biopsies, chemotherapy, radiations, and a Japanese immune therapy. That less-than-one-year of survival has come and gone several times over, but Hilary remains tethered to her cancer center as the threat of recurrence sits front and center on her shoulder. The radiation and chemotherapy further damaged her bones, gravely impacted her ability to eat normally, affected her sleep. The chemotherapy caused some memory problems. She is frequently so sick for days on end that her mom alternates between tearing around trying to find something to help her - and hovering over her to make sure she is still breathing. A caring pharmacist recommended a children's electrolyte drink and sometimes that is all Hilary can manage for several days at a time. Every day becomes a guessing game about which crisis is going to be the crisis du jour. If there are a few hours of relief when Hilary can sleep a little or manage a small meal without dire consequences, the next episode is just around the corner. For Susan, it's like Whack-a-Mole all the time, knocking down one crisis only to deal with another and another. For Hilary, it's pretty much non-stop suffering. Her mom describes her daughter as the bravest person she knows.
Meanwhile, the family finances also crashed. A reverse mortgage Susan had taken out on the family home was quickly used up covering unreimbursed medical and other related expenses. There was no more money for anything beyond the bare necessities.
Hilary needs to see a specialist at Johns Hopkins in Baltimore for a cancer-related appointment, but there is no way to get her there and no means to cover living expenses while there. Hilary needs a type of physical therapy available in Miami that might help her headaches, but it is not covered by insurance, so it is out of the question.
Susan drives a 27-year-old car with no airbags and no AC , in South Florida. Her house is in disrepair due to necessary neglect. Hilary sleeps in a small separate study which is not insulated, but it has a custom bed that was built for her years ago, and it's the only place she can sleep. The window AC works really hard to keep up, not too successfully. Insulation and a new roof on the study would help fend off the South Florida sun, and a custom bed in Hilary's childhood bedroom would allow her to be only a few feet from her mom on the worst days. When Susan is not taking care of Hilary's immediate needs, she spends her hours essentially robbing Peter to pay Paul, figuring out how to get through financially from one month to the next.
Hilary is very often virtually house-bound due to pain and weakness. In addition to the Baltimore cancer specialist and Miami headache therapy, she needs a complete inpatient physical evaluation somewhere to assess what can be done to help her start to get back on her feet, with very targeted therapies reflecting her precise cancer treatment side effects. She also needs a life coach with cancer expertise and a mentor for the darker days. There is no money for any of this and insurance would not cover it. If ever she is able, along with her mom, Hilary needs a few days away from the house, the heat, the daily reminders of how few options there seem to be right now. Susan used to have a small photography and greeting card business, but there is little of it left. Her days are spent on her more important project: Hilary. Susan knows that caregivers typically do not take good care of themselves. That's a fact and it's because they can't. There are only so many hours in the day and so much space in the psyche for stress. Susan, who is in her 70s, would like to be able to balance her days better for her own well-being, but her primary goal remains to find a way for Hilary to once again see promise for a future without the pain and suffering she has known for too long, and too well.
The new Millennia was supposed to give the Richard and Susan Russell family a brighter future. The 10 years they were leaving behind had delivered a jaws-of-life car accident involving their only child Hilary, and a category 5 hurricane that crushed South Florida but spared their street - EXCEPT for the Russell house, which sustained enormous damage from giant neighboring banyan trees that came crashing down on house and car. Both events created lasting consequences. Hilary developed migraines from her head injury; the house took years to repair, and if that wasn't enough, Richard was forced to retire from 20 years of part-time college English teaching due to age and approaching disability. Once a full-time celebrated university professor elsewhere, Richard discovered the new reality of the adjunct college instructor the day the family arrived in Florida in 1976: No full-time positions anymore, no pension, no benefits.
Fast forward through the next four years with the loss or serious illness of nearly every member of the family. The death of Susan's father; the death of Richard's only sister; a broken back for Richard and the onset of Parkinson's-like symptoms; Susan's cancer, and then most painful of all, the loss of the gifted Richard, a poet who published in Rolling Stone, served in the First Gulf War in the Red Sea war zone onboard a U.S. Navy ship as a temporary-duty college English teacher, a hero who never gave up and never gave in.
A year later, Susan's only sister died suddenly. It was already too much, but it was, in reality, only just beginning. Hilary's migraines were continuing, but she had been accepted into a prestigious graduate public affairs journalism program at the University of Illinois and she was determined to tough it through, managing intensive coursework and, later, competitive press conferences and assignments at the state Capitol.
Graduation came and the search was on to find both a good media job and some relief for the headaches. She had, so far, not allowed anything to get in the way of her future plans, but the "bridge out" sign on the road was just ahead.
In February of 2011, Hilary was at home in Illinois in her apartment when late one night she collapsed with excruciating back pain. She was rushed to an emergency room and a few hours later she was diagnosed with stage 4b cancer. It was not connected to her headaches. It was in her spine and other bones. She was given a grim diagnosis, less than a year to live. All of it was so beyond any questions; so incredible, so unfathomable. Hilary was just 38 years old. She had just gotten her master's degree and was getting ready to start her real life. She dreamed of a great job, a family, picnics, paddle boarding. She had already proved she could surmount everything that had been thrown at her: a car accident with a concussion and broken bones; a hurricane, losses of nearly everyone in the family, a grueling graduate program successfully completed in spite of her headaches. But now there was this!
Hilary arrived in South Florida a few days later so her mom could take over as caregiver. She then started a grueling two-years of biopsies, chemotherapy, radiations, and a Japanese immune therapy. That less-than-one-year of survival has come and gone several times over, but Hilary remains tethered to her cancer center as the threat of recurrence sits front and center on her shoulder. The radiation and chemotherapy further damaged her bones, gravely impacted her ability to eat normally, affected her sleep. The chemotherapy caused some memory problems. She is frequently so sick for days on end that her mom alternates between tearing around trying to find something to help her - and hovering over her to make sure she is still breathing. A caring pharmacist recommended a children's electrolyte drink and sometimes that is all Hilary can manage for several days at a time. Every day becomes a guessing game about which crisis is going to be the crisis du jour. If there are a few hours of relief when Hilary can sleep a little or manage a small meal without dire consequences, the next episode is just around the corner. For Susan, it's like Whack-a-Mole all the time, knocking down one crisis only to deal with another and another. For Hilary, it's pretty much non-stop suffering. Her mom describes her daughter as the bravest person she knows.
Meanwhile, the family finances also crashed. A reverse mortgage Susan had taken out on the family home was quickly used up covering unreimbursed medical and other related expenses. There was no more money for anything beyond the bare necessities.
Hilary needs to see a specialist at Johns Hopkins in Baltimore for a cancer-related appointment, but there is no way to get her there and no means to cover living expenses while there. Hilary needs a type of physical therapy available in Miami that might help her headaches, but it is not covered by insurance, so it is out of the question.
Susan drives a 27-year-old car with no airbags and no AC , in South Florida. Her house is in disrepair due to necessary neglect. Hilary sleeps in a small separate study which is not insulated, but it has a custom bed that was built for her years ago, and it's the only place she can sleep. The window AC works really hard to keep up, not too successfully. Insulation and a new roof on the study would help fend off the South Florida sun, and a custom bed in Hilary's childhood bedroom would allow her to be only a few feet from her mom on the worst days. When Susan is not taking care of Hilary's immediate needs, she spends her hours essentially robbing Peter to pay Paul, figuring out how to get through financially from one month to the next.
Hilary is very often virtually house-bound due to pain and weakness. In addition to the Baltimore cancer specialist and Miami headache therapy, she needs a complete inpatient physical evaluation somewhere to assess what can be done to help her start to get back on her feet, with very targeted therapies reflecting her precise cancer treatment side effects. She also needs a life coach with cancer expertise and a mentor for the darker days. There is no money for any of this and insurance would not cover it. If ever she is able, along with her mom, Hilary needs a few days away from the house, the heat, the daily reminders of how few options there seem to be right now. Susan used to have a small photography and greeting card business, but there is little of it left. Her days are spent on her more important project: Hilary. Susan knows that caregivers typically do not take good care of themselves. That's a fact and it's because they can't. There are only so many hours in the day and so much space in the psyche for stress. Susan, who is in her 70s, would like to be able to balance her days better for her own well-being, but her primary goal remains to find a way for Hilary to once again see promise for a future without the pain and suffering she has known for too long, and too well.
Organizer and beneficiary
April Ranae Ortiz
Organizer
Miami, FL
Susan Russell
Beneficiary