Holly Keuthan sits in the back of the family van, fidgeting and occasionally pulling on a mask that covers her nose and mouth to protect her from germs.
Compared to the medical emergencies that necessitated past trips, this ride is almost leisurely. Holly’s mother, Karen, heads south on the Santa Ana Freeway, leaving behind the low, white buildings of the Children’s Hospital of Orange County, where Holly has spent the last six weeks battling cancer.
“There was a lot of tension in the car, a good tension--we were going home,” Karen Keuthan said.
Holly’s homecoming has meant special preparations. Because the 6-year-old’s immune system is so weak from radiation and chemotherapy, the two-story home literally had to be cleaned from ceiling to floor to cut down on germs. The Keuthans painted and put in new carpeting and floors.
But they have tried to leave everything else in the house the same. Her bed is piled with stuffed animals and dolls. There are still toys everywhere, including Holly’s five jump ropes.
The Keuthans finally reach home at 2 p.m.
Holly wants to wander around but discovers she needs to grab walls and furniture to maintain her balance because the long periods in bed have made her a bit unsteady.
She insists on jumping rope. Holly tries to jump her usual pace and fails. She tries again and is able to jump only one step at a time. She begins to cry.
Karen Keuthan holds Holly and tries to comfort her. She manages to divert her daughter into playing with the stuffed animals, then she quietly goes to the bathroom.
“I had to leave her so I could cry,” Karen Keuthan says. “I was so upset when she couldn’t jump. But I had to hold it in. I don’t want her to know I’m upset. If she sees me cry, she’ll start crying herself.”
She stays in the bathroom until she can smile again.
For now, the doctors have purged the cancer from Holly’s leg. But the disease continues to haunt the family. There are mounting bills to pay, insurance red tape to cut through and agonizing decisions to make.
That evening, the Keuthans share their first meal together at home in months. They have Holly’s favorite: macaroni and cheese.
As the weeks go by, daily routines return. School starts again for Scotty. Jan is able to work with little interruption. And Karen is back to baking muffins. Even administering the medication has become a ritual of sorts.
Every day, Karen hooks Holly up to intravenous tubes for supplemental feeding and cleans the catheter that is still attached to her chest. Twice a week, Karen draws blood from her daughter to send to the hospital. And she gives Holly daily shots of medication to help her immune system grow more white blood cells.
But many problems persist.
The Keuthans are stuck with hospital bills that their insurer, Aetna Life Insurance Co., say are not covered by its policy.
Earlier this year, Aetna refused to pay for the aggressive chemotherapy and bone marrow transplant. Despite studies showing that bone marrow treatment could triple chances of survival for Ewing’s sarcoma victims, Aetna ruled the treatment experimental. The company finally relented after news stories were published.
Still, Aetna will not pay all the bills, and the Keuthans owe nearly $8,000 for medical care. Jan Keuthan, a communication salesman at Raycom Systems, says he cannot afford it. And Karen Keuthan is too busy caring for Holly to work.
The family is in debt and expects to stay that way for a long time.
Then there is the fear that the cancer will return.
Ewing’s sarcoma has a history of haunting its victims even after the most intensive treatment. The transplant will not completely safeguard Holly from cancer.
In fact, within weeks after the treatment, X-rays detected some unknown cell activity in the tumor area. While further tests determined that the movement did not involve cancerous cells, the Keuthans are advised that a decision is imminent.
Doctors tell them they have only two choices: amputation or resection.
Amputation would require that Holly’s right leg be removed to her hip. It’s the most effective way of ensuring that the cancer does not return.
Resection is a surgical procedure that would replace her leg bone with a metal rod. Every time Holly grows significantly, the rod would have to be replaced.
While amputation offers the Keuthans a onetime operation that guarantees no more cancer, resection requires painful surgeries well into Holly’s teen years. But an amputation is difficult for Jan and Karen to accept.
Although their doctors tell them that parents usually have a harder time than their children accepting amputation, Karen Keuthan says she feels that Holly would be severely traumatized by losing a limb.
In her diary, which she has kept during the family’s ordeal, Karen Keuthan writes:
“Holly is terrified of amputees. She won’t even go near that part of the hospital. When we took her to UCLA, there was a man whose leg had been amputated, in the waiting room. Holly stood in the hallway crying until I found another waiting room. The irony of this is that several doctors have discussed amputation at length with us, but never have we discussed it with her or in front of her. I can’t help but feel like it’s some kind of omniscience on her part.”
The Keuthans commit themselves to a resection even though Holly faces eight to 10 years of successive surgeries. Last month, they went to UCLA Medical Center to get Holly measured for a metal rod.
Today, Holly faces a 4 1/2-hour resection operation.
“We both feel strongly she deserves the best chance to having two legs as an adult,” Karen Keuthan said. “If the cancer is gone, she can have a normal life span.”
Though future resections loom ahead, for now there are little things worth cherishing. One morning, Karen Keuthan hears her daughter cry out and rushes to her room. But it is a cry of joy.
“Mommy, I have eyebrows.”