Siblings bound by blood to fight rare cancer

MILWAUKEE ― In the course of a few hours on a recent fall day, all of Ann Merrell’s blood slowly exited her body through a tube in her left arm, then re-entered through a tube in her right.

Two lives were bound up in this circle of blood.

The night before, in her own bed in South Beloit, Ill., she’d tossed and turned. Some of it was fear of the unknown. Yet Ann had decided that what she knew about her brother’s disease outweighed what she didn’t know about this effort to save him. Since 2006, her older brother had been fighting a very rare cancer. One medical treatment made his tongue peel, his feet and groin burn. He hurt so bad he didn’t care if the world ended. Despite the searing chemicals and radiation, the cancer came back. It always came back. In the room at Froedtert Hospital, Ann listened to the pump: click-click ... click-click. The sound reminded her of a sewing machine. Stitching things together.

After the blood left her body, it entered a machine the nurses call Marilyn for some reason. Marilyn sifted through the fluid, extracting Ann’s white blood cells. From the captured material, Marilyn harvested stem cells. The cells would pass from the 44-year-old sister to the 49-year-old brother. They carried his last hope of beating cancer.

For three hours the pump ran. A long needle jutted from each of Ann’s arms, stiff, unbending. She could not move to scratch an itch on her cheek.

In the fourth hour, Ann’s cellphone rang. Her husband picked it up and read a text from her brother.

Thanks for everything.

In his room two floors up, John Raschella rested. Tomorrow the cells from his little sister would enter his body.

All their lives it has been about blood.

Growing up in Racine, Wis., there had been three siblings: Ann, John and their brother, Mike. And yet in many ways, it was the two of them.

Mike worked hard at school; John and Ann went the other way.

Mike got the good teeth. They got trips to the dentist.

They even looked similar, John and Ann. Same sandy hair.

But it went deeper.

“I don’t know how to explain it,” John said. “It was just in my heart, a feeling.”

Their father and mother had divorced when they were young and the father quickly receded from view. Sometimes they saw him once a year; sometimes five years passed. Ann was his baby sister; John became her protector.

When she began seeing a boyfriend, a guy John considered “a seedy type,” he and an uncle drove around until they found the make-out spot where the kids parked. John threw open the boyfriend’s car door and pulled him out.

“I didn’t wipe him out or nothing like that,” he said, “just kind of threw him around.”

As adults, John and Ann shared an apartment in Kenosha, Wis., for a year. It worked out well, but eventually she moved and for a while they drifted apart. No falling out. Just paths going in different directions.

Lives change.

Blood doesn’t.

After his sister moved, John went through bad times. He grew lonely, sour, pessimistic.

“I had a companion,” he said. “I had a bottle of vodka.”

During a checkup for cataracts in 2006, the doctor mentioned that his blood pressure was high. He asked John, a supervisor at a local company that makes ice melter, if there were any other health issues.

John did not think of the alcohol, but of the hard thumb-sized knot on the right side of his neck. He could pinch it. The doctor’s eyes told John the thing on his neck was not good.

There was a biopsy, then a diagnosis with a long name: angioimmunoblastic T-cell lymphoma. It sounded as if the letters of the alphabet were mimicking the cells, multiplying out of control.

What it meant was cancer.

To John, the “C word” carried finality, a rain cloud that followed you until the end. There were things he had not done. Things that were now in question. He wanted love, not the mirage at the bottom of an empty bottle.

He wanted time.

The first cancer treatment involved more than a half-dozen cycles of chemotherapy. John was pleasantly surprised. The medications did not make him unbearably sick.

In the midst of treatment, he went to St. Luke’s Hospital in Racine for detox.

“I’m a stone-cold alcoholic,” he admitted to one of the nurses.

There were other trips to detox. John had cancer perched on one shoulder, alcohol on the other.

The cancer went into remission for 10 months. The lump returned.

So there was a second treatment, a high-dose chemotherapy. The medicine bought him time until the tissue swelled under his neck once again. By now, his hand would reach up almost unconsciously, anticipating the lump.

In December 2008 came a bone marrow transplant. Stem cells were removed from John’s own blood, and his body was blasted until the old immune system lay in ruins. The radiation burned _ 7 minutes on one side of the body, then 7 on the other. His fingernails dropped off. The peeling skin from his tongue made him gag, and he lost his sense of taste.

“It just tears you up,” he said of the treatment.

John received the injection of his own stem cells, rebooting his immune system. His white blood cell count languished for days at or near zero. A fever would have been a medical emergency.

Slowly the sickness passed. His strength returned. And when he felt better, he left the vodka bottle for good.

A year passed, and no cancer. Then a second.

He met a woman, Emily Shouse, a nurse. They talked and he felt comfortable telling her things.

This man has potential, Emily remembers thinking.

He took her on his motorcycle, her first ride on a cycle. They dated. As for alcohol, John was done.

They planned a wedding in Antigua, two weeks to explore and celebrate.

Then in May, John’s hand fluttered up to his neck. There it was: a firm, rubbery pea lodged under the skin.

He waited two weeks to tell Emily.

“How come you didn’t tell me sooner?”

He hadn’t wanted to worry her. She understood. As a nurse, she knew what the lump would lead to.

It was as John had feared. They traded Antigua for a courthouse wedding _ July 29.

After a long absence, John went back to church. This time he went with Emily.

The doctor suggested a new strategy. The cancer knew how to evade the high doses of chemotherapy. John could not fight it by simply rebooting his own immune system; but perhaps a whole new one would recognize the tumor as foreign and destroy it.

The best chance for a bone marrow match would be from one of John’s two siblings.

Ann was the first to be tested. A few weeks later she texted John.

I’m a match! I’m a match!

Nov. 1: The transplant. Day Zero, the medical staff call it.

John rested in bed. The same bed, same room he’d occupied for the transplant 2 years earlier. He liked the view from his window: the Curative building, the trees, the gentle rises, the neighborhoods beyond. Beside the bed, a bag was hanging; in it, a deep red mixture the shade of tomato soup. At 11:05 a.m., the red liquid began leaching into his arm.

“Now starts a new life for John,“ said the transplant doctor, Marcelo Pasquini.

Physically, nothing felt different. John joked that if he began liking teddy bears, that would be his sister’s cells. He was already a changed man. He didn’t drink. He went out more often _ to baseball games, to the Shedd Aquarium in Chicago. He kept thinking about Emily, who sat quietly in a chair nearby. He talked about the places they would go. They had been looking at motor homes.

“You can’t go through something like this and be the same,“ he said.

Just then Ann texted: Are you OK?

“You feel the love,“ John said. “I love my sister. I’m glad she was the one. I love my brother equally, but me and my sister was always ...“

He left the thought unfinished.

Emily got him through it. She returned from the hospital gift shop with small presents, things she knew he would like: Chapstick, candies, popcorn, brownies. He felt no need to be macho about it; she brought him love.

“That’s what I need most,“ he said. “I need her hugs.“

Finally, he felt well enough to answer the phone again. His kidneys were improving. He would be going home. The hospital pharmacy prepared a grocery bag full of medications he would have to take _ some for a few weeks, others for months. Then, at 1:20 on the afternoon of Nov. 30, Ayman Saad, his hematology doctor, came to see him.

“I think you are good to go,“ the doctor said.

John settled into a wheelchair, Emily pushed, and together they left the hospital.

By Mark Johnson

(Milwaukee Journal Sentinel)

(MCT Information Services)