The Supreme Court has set a date to hear arguments in the case that could unravel the Affordable Care Act.
June 29--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.
Use access code G96J.
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