Ruined by Illness Even Though Insured & Employed-37 Years Old Gets Last Wish

POSTSCRIPT:  Luis passed away 48 hours after his dying wish came true.!


Philadelphia Inquirer, Sunday, June 29, 2014, HEALTH section, Lead Story, Front page, Page G1:

Employed and insured, but nonetheless 'ruined by illness'

Share Tweet  Reddit Email

0 COMMENTS

Danielle Rodriguez embraces Luis as they prepare to leave home. TOM GRALISH / Staff Photographer

GALLERY: Employed and insured, but nonetheless 'ruined by illness'

Travel Deals

$499 & up -- Bermuda Weeklong Cruises w/Extras

See all travel deals »

Weekly Circulars

Get an Extra 20% Off with a JCP Credit Card and Coupon(JCPenney)

Check Out Our Coupon Hub(Food Lion)

See More Circulars »

MICHAEL VITEZ, INQUIRER STAFF WRITER

POSTED: Sunday, June 29, 2014, 2:51 AM

Luis Rodriguez knew it was the house for him and his family when he saw the rhododendron on the side, the size of a tree. He is a landscaper.
His wife, Danielle, loved the size of the lot, a corner, and the five bedrooms. She was excited about all the work her husband could do! This was in Williamstown, a place to raise their family.
Luis never finished high school in Camden. He worked, often seven days a week, to provide for his family. His wife worked full-time, too, first for Comcast, then for Penn Medicine scheduling appointments.
He painted and drywalled and planted, and his favorite memory in 13 years in that house was bringing his baby girl, Katie, now 8, home from the hospital.

Luis left that house on Tuesday.
His last walk out of the family room, through the dining room and kitchen, and out the door into the RV was a parade. His wife led, carrying his morphine and other medicines. He shuffled behind her, unsteady, heavily medicated to ease his pain.
Behind Luis, pushing his oxygen machine, was his best friend since fifth grade, Raul Paneto. Both had risen from the streets, owning their own homes, fathers to their children.
Next came Raul's wife, Clara, carrying a baggie of Q-tips and Chapstick and the KY jelly that had been, even on such a tragic afternoon, the subject of many a joke. Luis needed it now to lubricate the inside of his nose, dried out from his oxygen and tubing.
Luis, 37, has a few weeks to live. That's what doctors told him. He never would have wanted to leave that house. But when he got sick last summer with acute myeloid leukemia, he couldn't work. He got disability from his employer, but it ran out, and he had to wait three months for federal disability.
Danielle cut back to part time to care for him and their three children, 17, 14, and 8. The bills mounted, she couldn't pay the mortgage, and the bank wouldn't modify the payments. One minute their family income is $80,000 and their daughter is going to dances; the next they file for Chapter 7 bankruptcy and will surrender the house to the bank.
"They're such a lovely family," said Mindi Roeser, a palliative care doctor at Pennsylvania Hospital. "It is a sad example of how even patients who are both employed and insured can still be financially ruined by illness."
Luis had a dying wish. His sister and her family live in Jacksonville, Fla. Danielle's mother, from Swedesboro, had recently moved to Jacksonville. Luis wanted Danielle and the children to relocate there. He knew they would be taken care of by family there, that they could start over - free of debt, of worry, safe.
Luis wanted to see where they would live, see the backyard where his children could play, see that they made it safely. Then he could die, in peace, in Jacksonville.
"I knew my wife could not take care of all these bills and this house," he said Tuesday afternoon, sitting on the couch, hoarse, speaking very slowly, eyes drifting shut.
"It's been extremely hard," he said, "especially as a male provider who has done the best he could. I need to know they will be OK."
His wife was squirting morphine on his tongue with a syringe every three hours, and giving him nebulizer treatments to help him breathe. He struggled to stay awake, focused, alert.
Danielle looked for financial help where she could, when she could. "How many hats do I have to wear?" she asked. "How many hours are there in a day to care for your husband, try to stay sane for your children, be on the phone, get insurance, call disability? Thank God my family flew in. Thank God for friends, and my sister-in-law and brother-in-law have stepped up to the plate drastically. But I am only one. And I know it hurts Luis to see me ripping and running, and trying to care for him."
"There was just no help out there within a time frame or within reach willing to help us."
The family had planned to drive to Jacksonville in July. But Luis couldn't wait that long. Months to live became weeks.
He was in Pennsylvania Hospital from Father's Day till June 20. Doctors huddled for days, but couldn't find a way for him to travel safely to Florida. They thought it too risky.
On June 20, finding her voice, realizing she must call the shots, Danielle took her husband home, in time to see daughter Noemi, 14, before she went to the eighth-grade dance. Luis danced with her, in socks, in the living room, 30 seconds of bliss, before reaching for his oxygen.
Danielle and Luis were so discouraged. It seemed he wouldn't get his last wish to see the family relocate. But Roeser, the palliative care doctor, suggested Vitas Hospice, a national provider that has offices here and in Florida.
Danielle made her pitch, and Monday morning, a miracle to her, Vitas consented.
Hospice would provide the oxygen and equipment for her to make the journey, and have staff waiting in Jacksonville.
On Monday afternoon, Danielle and her mother and sister-in-law and niece worked the phones and computers for three hours. They rented an RV in Marlton. They booked plane tickets for Grandma and the kids. Raul, Luis' best friend, would rent a truck and bring the furniture Friday night. Clara, his wife, would follow in Danielle's minivan with the dog.
Hospice explained that the worst that could happen was that Luis could die en route. "We're prepared to take that risk," Danielle said.
Danielle's mother, Marge Grasso, 59, had moved from South Philly to Swedesboro to be near her daughter and grandchildren. She moved to Jacksonville three months ago, got a job in a hospital, and rented a four-bedroom house. The family will live with her.
"I would go to Tibet if they went," Grasso said. "They're my whole world."
The children flew with her Tuesday afternoon.
The oldest child, Antonio, will miss his senior year in Williamstown. "Going to be hard, being the man, stepping up and handling a family at 17," he said.
"Not fair," said Noemi, her beautiful face a portrait of sadness. "Him getting sick and the move. I love him so much."
Katie, 8, cute, sweet, was smothered by aunts and cousins.
This is a classic love story. Danielle's best friend was Clara. Clara was married to Raul. Raul's best friend was Luis. Danielle went to visit Clara one day, and there was Luis lying on the couch. "Love at first sight can happen," said Danielle. "You just have to be lucky enough."
"These are really two good people," said Clara. "They turned their lives around. Made their dreams come true. They were so happy when they bought their first home here. They thought they were going to be here forever."
Now husband Raul is talking about selling his business, their home in Pennsauken with the backyard pool, moving to Jacksonville next year, so he can keep his promise to his best friend, and look after his family.
About 7 p.m. Tuesday, Luis was helped into the back of the RV, sitting on the double bed, Danielle by his side. She pulled blankets off all the kids' beds so Luis could feel surrounded by something familiar. The oxygen machine was hooked to a generator. Luis' brother, Frank, 42, would drive. Luis' sister, Kathy Ortiz, 39, would ride shotgun.
Raul couldn't watch the RV pull away. He went over behind that big rhododendron and wept.
The trip took nearly 20 hours. With the oxygen, they had to bypass tunnels. There was traffic. The driver had to nap.
Luis drifted in and out of a morphine haze most of the way. They arrived at their new home about 3 p.m. Wednesday. A hospice nurse met them.
"Things were hectic with him getting into the home," Danielle texted. "He was so thankful for all the support and this actually happening. He was happy to see the kids, mainly."

---

Barely 48 hours after arriving in Florida, after his dying wish came true, Luis passed away - around 9 p.m. Friday.
"It was peaceful," said Danielle. "I was holding his hand."
She believes he knew his family would be safe, and surrendered to the cancer.

---

TO GET HELP

Life insurance through work or an agent can help pay for a house when someone dies. Disability insurance at work and Social Security Disability Insurance can help, too.
After a parent dies, children are eligible for Social Security dependent benefits and the mother for mother's benefits until the children age out.
Call the Pennsylvania Health Law Project at 1-800-274-3258 or the Community Health Law Project at 856-858-9500.

---

>Inquirer.com

To see Luis dance with his daughter, go to www.inquirer.com/Luis
Use access code G96J.

---

mvitez@phillynews.com
215-854-5639 @michaelvitez

Read more at http://www.philly.com/philly/health/healthcare-exchange/20140629_Employed_and_insured__but_nonetheless__ruined_by_illness_.html#4yqPca06sMK0RQEz.99

Lung Cancer Kills More, Gets Less Heed Research Dollars & Donor Wise

Bonnie Miller Rubin, CHICAGO TRIBUNE

POSTED: Monday, December 2, 2013, 2:01 AM

CHICAGO - November was Lung Cancer Awareness Month, but you'd never know it. Consumers weren't bombarded by products in blue, the color designated by some to raise the profile of the disease. No NFL players or coaches wore blue-ribboned apparel, the way they wore pink the previous month for breast cancer.

"It just doesn't seem fair," said Meghan O'Brien, 31, a nonsmoker diagnosed with stage 4 lung cancer last year. There is no stage 5.

The lack of buzz is especially perplexing because lung cancer is the leading cause of cancer death in the United States, claiming more lives than breast, prostate, colon, and pancreatic cancers combined. The five-year survival rate is just 16 percent - a statistic that has barely budged since 1975, according to the American Cancer Society.

But lung cancer is seen as a tobacco-related illness that patients bring upon themselves.

About 10 percent to 15 percent of the roughly 228,000 people diagnosed with the disease each year were never smokers, according to the LUNGevity Foundation, a Chicago support organization.

Stigma negatively affects everything from emotional support to the anemic November awareness campaign. Even in obituaries, family members feel compelled to include the "nonsmoker" status, lest the deceased be wrongly judged.

However, nowhere is the disparity more evident than in research funding. The National Cancer Institute estimates that $17,835 is spent per breast cancer death, vs. $1,378 for lung cancer, even though lung cancer accounts for almost 23,000 deaths annually among nonsmokers.

"If we don't start paying attention and changing attitudes, we will have a losing battle ahead of us," said Ravi Salgia, O'Brien's oncologist at University of Chicago Medicine.

Better screening and biomarker tests are on the horizon. But none of it may happen without removing significant political, social, and financial barriers.

Lung cancer top killer, but research dollars and donor support poor: oncologist

By Sheryl Ubelacker, The Canadian Press | The Canadian Press – Thu, 14 Nov, 2013

• Email
• Print

 HEALTH NEWS »

• U.S. justices decline to hear another Obamacare challenge
• Pregnant woman with MERS gives birth by emergency C-section; baby well
• Journal withdraws controversial French Monsanto GM study
• White House meets goals for HealthCare.gov, but more work ahead
• HealthCare.gov adviser to be replaced when leaves for Obama econ job

More Health news »

TORONTO - Lung cancer kills more Canadians each year than any other malignancy, but the disease receives a disproportionate amount of research and donation dollars compared with far less deadly cancers, says a national advocacy organization.

Lung Cancer Canada says the disease causes more than 28 per cent of Canadian cancer deaths — more than those from breast, colon and prostate cancer combined — but receives only seven per cent of cancer-specific research funding and 0.1 per cent of charitable cancer donations.

Dr. Natasha Leighl, an oncologist at the Princess Margaret Cancer Centre in Toronto, said the reason lung cancer gets so little respect is the stigma surrounding tobacco use — and the mistaken belief that all cases of lung cancer result from smoking.

But Leighl said at least 15 per cent of people who get lung cancer never smoked and some develop it through exposure to radon gas or industry-related carcinogens like asbestos. And recently, the World Health Organization fingered air pollution as a major cause of lung cancer.

"As someone who works in this area, I'm always so surprised that Canadians are so supportive of other smoking-related diseases like heart disease and stroke, and yet lung cancer seems to bear all the blame associated with smoking," she said Thursday.

"I think it's important to realize that a growing number of people with lung cancer are people who smoked as teenagers and then quit when they were very young. There's a growing number of never-smokers with this disease, and this is something that really affects all Canadians and is definitely worth people supporting, irrespective of the smoking issue."

In fact, one in 12 Canadians is at risk for lung cancer in their lifetime — both smokers and never-smokers alike, said Leighl, who is also president of Lung Cancer Canada.

About 25,000 Canadians are diagnosed annually with lung cancer and an estimated 20,000 die each year from the disease, said the organization, which is calling for a national screening program, increased research funding and greater access to new life-prolonging drugs.

Dr. Peter Ellis, an oncologist at McMaster University's Juravinski Cancer Centre, said that despite the grim toll taken on women by lung cancer, the disease "isn't even recognized" in fundraising events like the annual Weekend to End Women's Cancers.

"We need to change that," Ellis told a briefing on the state of lung cancer in Canada on Thursday.

Other cancers, among them colon and breast cancer, are influenced by lifestyle choices such as poor diet and lack of exercise, but patients with those malignancies aren't typically exposed to the stigma attached to lung cancer.

Indeed, those dealing with lung cancer say they often feel isolated because of people's reactions to their diagnosis. Typically, they say, it begins with: "Oh, I never knew you smoked!"

Roz Brodsky was diagnosed with lung cancer in 2004 at age 45, not long after she had quit smoking. Like many in her generation, she said she started smoking as a teen because she thought it was "glamorous" and she got hooked.

When some people learned she had lung cancer, they either "recoiled with horror or asked 'Do you smoke?'" instead of asking if she was OK, said Brodsky of Thornhill, Ont.

She said she found it difficult, in a society where women with breast cancer get so much support with numerous pink-ribbon fundraising efforts, that there was not even a support group for people with lung cancer in a city as large as Toronto.

Now 55 and cancer-free, Brodsky said she worries about young people who have never smoked mistakenly believing they have no risk of lung cancer because of its connection with smoking.

"The way lung cancer is portrayed ... it lulls non-smokers into a false sense of security."

Despite lung cancer's lack of clout in the fundraising arena, Leighl said doctors and researchers are making strides forward in earlier diagnosis and treatment.

The five-year survival rate has risen to 18 per cent from about 14 per cent a decade ago, and there have been a number of breakthroughs in understanding what drives the development of lung cancer at the molecular level.

That's led to new drugs, such as Tarceva, which target genetic abnormalities within cancer cells. Other drugs, which are in clinical trials but available for doctors to prescribe, act to help the immune system recognize and kill cancer cells.

"This is not chemotherapy," Leighl said of the immune-based therapy. "You don't lose your hair, you don't get sick to your stomach. This is really about harnessing the immune system and its ability to kill cancer.

"We've seen dramatic (tumour) shrinkages in patients with lung cancer. I've had patients who've been on those treatments for more than a year. They've been chemotherapy-free where even last year I would have had to put them on chemotherapy. That would have been the standard.

"So there's a lot of excitement and potential promise."

Lung Cancer Canada wants a national program to screen people with the highest risk of lung cancer, using low-dose computerized tomography, or CT, scans for earlier detection of the disease.

An estimated 1,250 lives could be saved each year with such screening and pilot programs need to be set up by all provinces, so Canadians across the country have access to them, Leighl said.

"This is something the government needs to move on quickly."

"A Grace", Poem by Donald Hall - Grieve Over Unripe Dead

A Grace by Donald Hall God, I know nothing, my sense is all nonsense, And fear of You begins intelligence: Does it end there? For sexual love, for food, For books and birch trees I claim gratitude, But when I grieve over the unripe dead My grief festers, corrupted into dread, And I know nothing. Give us our daily bread. "A Grace" by Donald Hall, from Old & New Poems. © Ticknor & Fields, 1990. Reprinted with permission. (buy now) Donald Hall (books by this author), born in New Haven, Connecticut, in 1928. He started writing poems when he was a kid at his grandparents' farm in New Hampshire. When he was 16, he went to a writing conference and met Robert Frost, and later that year, he published his first poetry. He moved around for many years, studying and teaching at various universities, and at the University of Michigan, he met another poet, Jane Kenyon, and they got married and moved back to his grandparents' farm. He said that moving there was like "coming home to the place of language." Hall and Kenyon wrote about each other and their life together. Jane Kenyon died of leukemia in 1995. Hall wrote Without (1998) about caring for his wife during her illness and living without her after her death. He also wrote children's books, as well as books about baseball and the sculptor Henry Moore. His most recent books are Unpacking the Boxes: A Memoir of a Life in Poetry (2008) and The Back Chamber (2011). He said: "I see no reason to spend your life writing poems unless your goal is to write great poems." And, "At sixteen the poet reads Whitman and Homer and wants to be immortal. Alas, at twenty-four the same poet wants to be in The New Yorker."