A Young Girl's Battle with Cancer (long)
Carrie Farinella slips into the dark of the room and settles quietly next to her daughter. She needs to be near Sophie but doesn't dare wake her.
The 5-year-old girl's breathing is rapid and jagged. Carrie places her hand on top of Sophie's chest and watches it go up and down.
Lying in the dark, she closes her eyes and thinks about the day six weeks earlier, when she sat with her husband, Nick, and Sophie's doctor.
The doctor had the latest results of the treatment for her leukemia. It wasn't working.
They could keep trying, she told them. Or they could stop, and let Sophie go.
Now her daughter is dying, the cancer cells growing inside her. And Carrie still doesn't know if she has made the right choice.
She leans into her daughter and drifts into a shallow sleep.
An hour later, Carrie wakes. The room is still dark and Sophie is still breathing. Maybe tonight, she thinks. Maybe tomorrow.
- - -
Sophie is 5 months old, sitting on Nick's lap, when the doctor walks into the room and gasps.
It is early in the morning on June 4, 2006, and everything is about to change.
Nick explains to the doctor that Sophie had been a happy and healthy baby for her first four months. That's when she suddenly became fussy and uncomfortable.
Three days ago, Nick says, Sophie's eyes began to cast downward.
Carrie and Nick don't know it yet, but this is called "sunsetting," because the eyes look like they are dipping below a horizon. It is a sign of a possible tumor.
This is what makes the doctor gasp. "I'll be right back," she says. Fifteen minutes later, doctors fill the room.
By the end of the day, Sophie is diagnosed with choroid plexus carcinoma - a brain tumor.
Next comes surgery. The tumor looks angry, the surgeon says.
Then there are 10 months of chemotherapy, but Sophie surprises everyone. She learns to walk by holding on to her IV pole. She learns to talk, to eat normal food.
In August 2007, Sophie is 18 months old, and doctors say she is cancer-free.
Nick and Carrie have worked for In-N-Out Burger for years, and Nick gets a promotion to become a second-in-command in Prescott. The family moves north, buys a home with a big backyard and enrolls Sophie's older brother, Aiden, in school.
It is the best year of their lives, Nick says. Sophie's story is "going to have a happy ending."
he helicopter blades spinning overhead almost drown out the voice of the paramedic, who is asking Carrie to hand Sophie over.
Carrie is confused.
She has brought Sophie to the hospital because of a cough that wouldn't go away.
But the doctor in Prescott sees something he doesn't like on Sophie's X-rays and wants to fly her to Phoenix right away.
It is Mother's Day 2009. Sophie is 3 years old and has been healthy for two years.
A procedure at Phoenix Children's Hospital reveals a mass, a tumor. The doctor walks out of surgery and says it is approximately "the size of a teddy bear's head."
Carrie thinks that is a weird way to describe it.
The tumor is a new cancer, T-cell lymphoblastic lymphoma. Sophie also has something called pre-malignant MDS - myelodysplastic syndrome - a precursor to leukemia.
More testing reveals an awful truth.
Dr. Dana Salzberg explains that the chemotherapy that saved Sophie's life when she was treated for her brain cancer has damaged the structure of some of her DNA.
Sophie's body cannot fight cancer. This is a known but "extraordinarily rare" side effect. Sophie's brain tumor was chance. Now, because of the damage, she will keep getting cancer.
For the first time, Nick and Carrie realize there is something profoundly wrong with their daughter.
Sophie takes steroids and chemotherapy to fight the new cancer. The steroids make her hungry, the chemo makes her nauseous. She carries a plastic bucket to throw up in. Her brown hair falls out in her brush.
But she makes it through. Sophie always makes it.
"She's remarkable that way," Nick says later. "She never complained about anything and always did what we asked her to do."
Still, the leukemia looms.
Doctors recommend a bone-marrow transplant, which will require intensive chemotherapy to destroy her existing, and flawed, bone marrow.
There is no discussion about doing it or not. Nick and Carrie owe it to Sophie to make her well.
On Sept. 30, 2009, Sophie receives new bone marrow. She is not yet 4 years old.
Nick's insurance pays the medical bills. He decides to take a demotion at In-N-Out so he can return to a restaurant in the Valley while Sophie gets her treatment at Phoenix Children's Hospital. Upside-down on their home in Prescott, they walk away and lose it to foreclosure.
Sophie survives the treatment and regains her strength. The Make-A-Wish Foundation pays for a trip to Disney World in Florida, where she spends the entire week giving hugs to costumed characters and insisting that they look at her new shoes.
At the beginning of the school year in 2010, she goes to preschool, joining her brother at Madison Camelview in Phoenix.
The doctor's visits become routine, just blood tests and checkups. Everything comes back normal.
"Our life was coming back together again," Carrie says later. "We might really have won."
On the morning of Dec. 15, Nick and Carrie are getting Aiden ready for school and preparing Sophie for another doctor's appointment when the phone rings. The appointment has been changed, the nurse tells them. They'll be seeing Dr. Salzberg and should expect it to take a bit longer.
"I knew something was wrong right away," Carrie says.
Nick and Carrie start reading the room the moment they enter it. After years of treatment for Sophie, they have learned the language of hospitals.
Good news is delivered in a hallway. If a doctor asks you into a room, the news will be bad. If a doctor shuts the door, it will be worse. And if a social worker is there, it will be shattering.
In this room, Rhonda, a social worker they know, is already at the table.
Dr. Salzberg shuts the door.
The bone-marrow transplant did not work. Sophie has acute myeloid leukemia.
Untreated, leukemia cells will crowd out the normal red blood cells, white blood cells and platelets that the body needs.
The doctor lays out the options in a way they have not heard before.
They can try another bone-marrow transplant. They can do a lymphocyte infusion - a boost from the previous bone-marrow donor.
Or they can do nothing at all. They can let Sophie go.
A new transplant will mean another round of agony, vomiting, hair falling out. It seems unfair to ask her to do it again.
The boost seems like a long shot. There is little reason to think more of the same marrow will help.
And giving up? No, they can't do that.
Still, just hearing the option is jarring. "It was weird to hear it," Carrie says of the meeting. "I guess I shouldn't have been surprised."
Carrie wonders how much more her daughter could take. How much more she should ask of her. Sophie is one month short of her fifth birthday.
Nick knows exactly what to do. We should fight, he thinks. Sophie always comes through. She never complains. She will get through this as well.
Dr. Salzberg tells Nick and Carrie that they should consider all of the options carefully. She will support them in whatever they choose.
- - -
Nick and Carrie talk about the decision on the way home. They talk about it over dinner and in the middle of the night. They talk it over for days. Then they choose the bone-marrow boost. The middle ground.
They tell Dr. Salzberg, who tells them she supports their decision completely. It is a right choice, she tells them. Go home and enjoy Christmas, she says. So Nick and Carrie buy Sophie what she really, really wants.
A drum set.
In the quiet of Christmas morning, they realize it may have been a mistake. Bang, bang, bang.
But they want this Christmas to be perfect. Aiden gets a bike. Alyssa, Carrie's teenage daughter from a previous relationship, makes sure to spend extra time with Sophie.
Sophie goes into the hospital on Dec. 30 for her infusion.
Dr. Salzberg says it will take at least six weeks to learn if the boost works.
When donated marrow begins to take precedence over a patient's old marrow, there will be nausea and skin rashes and diarrhea, all byproducts of a battle inside her body as the new cells defeat the old.
Sophie doesn't show any of that. The one time Nick and Carrie want to see their daughter get sick, she does not.
On Jan. 27 of this year, less than a month after the boost, Nick and Carrie are called back to the hospital.
The boost has not worked at all. And it is not going to.
The three choices are placed before them again: a new transplant, another boost, or do nothing. This time it is called the "quality of life" choice. Sophie would live two to six months. She has just turned 5 years old.
Nick and Carrie decide not to include Sophie in the decision. She is too young, they say, to understand.
End-of-life decisions have become one of the most difficult parts of medicine. Many families make them for aging relatives; many are fortunate to know what the dying person would want. For a parent of a small child, the decision is different.
Parents spend every part of themselves trying to make their child well, and then reach a point when they are supposed to stop.
"You have spent years in this case being single-minded. You are going to find a cure, you are going to make her well. It is everything you do," says Rhonda Baldwin, a pediatric social worker at Phoenix Children's Hospital. "And then you are supposed to stop."
On this drive home, there is very little talking.
Finally, Carrie speaks. Her instinct is to let Sophie go. They should stop the treatment. They should stop.
"Saying it out loud," she says later, "was the sound of my heart breaking."
Images of Sophie run through Nick's mind. He sees her getting sick and getting well. He sees her hair falling out and growing back. She always comes back. Nick wants to keep fighting.
Through Sophie's life, Nick has convinced himself that everything was OK. Stopping now, he knows, will reveal the truth.
"For me, it was looking back at all of it and realizing how hard it really was," Nick later says of the decision. "You trick yourself into thinking it's fine. Giving her medicine seven times a day and going to the hospital two times a week and her getting poked and getting sick and throwing up and losing her hair.
"But it's not all right. It's too much. You realize that smile you put on your face every morning was just a smile you put on your face. And that's when you realize that no matter what you do, she is not going to win."
Re: A Young Girl's Battle with Cancer (long)
This was on my local news station yesterday so I put it here, if you think it fits better in medical then feel free to move it.
Re: A Young Girl's Battle with Cancer (long)
What a sad story. Thanks for posting