Carter Martinez and his twin brother, Brayden, sat silently in
their double stroller as the doors to Lucile Packard Children’s
Hospital at Stanford whisked shut behind them.
Gilroy
Carter Martinez and his twin brother, Brayden, sat silently in their double stroller as the doors to Lucile Packard Children’s Hospital at Stanford whisked shut behind them. With their mother Robyn Martinez at the helm, they made a beeline toward the oncology ward. After countless hospital visits and overnight stays, the 18-month-old twins are pros this time around.
“They know where they’re at,” Robyn, 28, said matter-of-factly of her children’s angelic behavior. “They recognize the scrubs.”
The Martinez family spent what seems to them like an eternity confined to the various wards of the hospital whiling away the hours, days and weeks, waiting and praying that Carter, the younger twin by a minute, would survive a disease that no child should have to battle.
The Faraone family knows that battle all to well. Close friends, the two families have been through similar situations with very different outcomes. Carter has been in remission since September. Declared “cancer free,” he will lead a healthy life with the memories of his infancy, hopefully, fading with time. The Faraones lost their son, Christopher, to brain cancer when he was 3. After a chemical cocktail of chemotherapy ruined Christopher’s kidneys and sessions of radiation were unsuccessful, the Faraones were praying for a miracle that never came. The tumor that took over 75 percent of Christopher’s brain was too much to fight.
“I wasn’t supposed to bury my child,” Kim Faraone said. She put her life on hold for most of 1999, spending months by Christopher’s side at Lucile Packard. “You’re the mom. You’re supposed to protect them, fix them,” she said, the pain fresh in her eyes, even after eight years. “I still talk to him every night.”
Kim was nervous about meeting Robyn and her son for the first time. A mutual friend who knew of what the Faraones had survived and what the Martinezes were up against introduced the two families at the height of Carter’s illness. Kim remembered the encounter with photographic clarity, worried about getting too close to a little boy whose fate was in limbo, a situation that was painfully familiar.
“He looked so sick the first time I saw him,” Kim said of Carter. At 10 months, Carter weighed only nine pounds. Carter’s recovery has been a victory for many people other than just his parents, twin brother and 4-year-old sister, Alyssa. He has filled a hole in the Faraones’ lives that had been empty since they lost Christopher.
“It’s really good that there’s a happy ending this time since Carter’s doing so well,” Kim said. “We’re lucky he’s cooperating!” The families get together at least once a week and the twins adore the Faraones, Robyn said.
Coping with cancer
After a “perfect pregnancy,” Robyn and Graig Martinez gave birth to the twins July 30, 2006. The ease of Robyn’s pregnancy quickly faded when the small knot on Carter’s neck swelled to the size of a softball. At 6 weeks, Carter was diagnosed with neuroblastoma, a common childhood cancer. “A nerve cell gone haywire,” Robyn explained. After consulting online resources and devoting a substantial amount of energy to working herself into a panic, Robyn, the rational counterpart to her husband’s emotional tendencies, asked herself, “How do I fix this?”
In the year and a half since her son was diagnosed with cancer, she has combated uncertainty with education, becoming a walking encyclopedia of medical knowledge, an expert in translating medical jargon into laymen’s terms. After so many trips to the hospital, she knows its maze of hallways like the back of her hand, she said. Or so she thought.
“You would think I’d have this down,” she said sheepishly when, twice, she passed the lab where Carter gives blood once a month. The toddler promptly began wailing the moment the lab technicians laid him on the examining table, his hazel eyes welling with tears. A struggle ensued, with Carter fighting to get as far away from the prick of the needle as possible with Robyn and the technicians trying to subdue him – for only a moment – to draw enough blood for the myriad lab tests to come. Brayden, seeing the look of panic on his twin’s face, burst into tears, adding to the clamor.
Unlike past trips to the hospital and despite the tears that still accompany pokes of the nurse’s needle, these visits are cushioned by a sense of relief now that Carter is cancer free.
More bad news
After getting into the habit of receiving bad news, Carter’s parents are still reluctant to rejoice in his recovery. They became accustomed to seeing their son’s smile hidden behind intubation tubes, getting to know far too many lab techs, nurses and doctors on a first name basis, going weeks at a time without seeing each other or their other two children, and hugging their bed-ridden son gingerly for fear of disturbing one of the many tubes that delivered the essential food, oxygen and medicine into his struggling system.
“When Robyn calls me at work, I’m always afraid of what she’s going to say,” said Graig Martinez, 26, who works long hours at UPS.
“My reality is forever changed,” Robyn said. “I look at Carter every day and wonder when the tumor’s going to come back. When’s the other shoe going to fall?”
It seems to them, when they let their guard down, another wave of bad news comes crashing down. Recently, Brayden was the reason for several hour long trips to Lucile Packard. Given Carter’s history, Robyn initially feared cancer when a lump formed on his head. A bone protrusion was removed from his skull for a biopsy. Not cancer, the growth will be closely monitored over the next few months for any new development.
“He’s growing a horn,” Robyn joked. She’s learned to take bad medical news in stride. Her daughter, Alyssa, is no stranger to medical complications either. At 14 months, Alyssa underwent a seven-hour surgery to correct a malrotated stomach, an abnormality that tangles a fetus’s bowels in the womb and can be life-threatening if not treated. Healthy now, she will have to avoid certain foods for the rest of her life.
“I play the waiting game better these days,” Robyn said.
“No she doesn’t, she just fakes it well,” Kim Faraone said. Robyn’s composure and sense of humor conceal what she’s coping with beneath the surface.
Giving back
The families lean on each other in times of need and have banded together to give back to the organizations that helped them through their bleakest days. With the help of families she’s met through Lucile Packard and Jacob’s Heart Children’s Cancer Association, Robyn has organized An Evening of Hope, the proceeds of which will be split between cancer research at Lucile Packard and Jacob’s Heart. The dinner and auction will benefit families of children like Carter and Christopher Faraone.
“We’re doing the best we can to make it better for the next family,” Robyn said. “I woke up one day and realized I have to do something. I can’t complain anymore if I’m not doing anything about it.”
“Robyn’s been an army of one,” said Jacob’s Heart Executive Director Roy Melendez. “She should be doing this for a living, she’s so organized.” Funding for Jacob’s Heart, an organization that offers support to families of children with cancer, comes from contributions like Robyn’s. “Volunteers like Robyn are the backbone of Jacob’s Heart,” he said. “Man, she gives me energy.”
Robyn has managed to regain a sense of control from organizing the event, she said, doling out Cheerios to the twins as she waited for Carter’s doctor to arrive for his monthly checkup. When Dr. Jay Balagtas entered the examining room, Carter was all smiles, playing with Balagtas’s stethoscope and hamming it up for the doctor, his shirt reading “Hello, my name is Trouble.”
“He’s doing extremely well,” Balagtas said as he examined the spot on Carter’s neck where the tumor was removed more than a year ago.
The twins’ regular pediatrician agreed. “You have gone through a lot of hurdles, the hurdles that most families can’t even dream of,” Dr. John Huang said to Robyn. “Most families would fall apart.”
A charismatic patient
The little boy charms hospital staff around every corner. Nurses, doctors and families of other children in the hospital waved and asked about Carter when they saw him and his twin approaching in their stroller. He knows more adults than most other children his age. An especially close relationship has grown out of his physical therapy sessions at Children’s Therapy Center in Gilroy.
Carter’s occupational therapist, Elizabeth Clerk, works with him twice a week to bring him up to speed with other kids his age. Per the usual routine, Carter stripped down to his pants and Clerk ran a surgical brush over his skin to stimulate his senses.
Among the hula hoops and colorful toys that line the walls, Carter toddled down a balance beam under Clerk’s watchful gaze and outstretched arms. She coaxed him on with utterances of “good work handsome” and “you can do it buddy.” They straddled a swing that gently swayed back and forth to work on his underhand throwing, a developmental skill that Carter is trying to master.
“Good overhand throw,” Clerk laughed when Carter sent an orange bean bag flying past the target, a little too much energy in his throw. “He has worked through so much. He was really sensitive at first but he does so well in structured environments,” she said as Carter waited patiently in his tot-sized chair for the next activity.
On to snack time, Clerk used a warm washcloth to apply pressure to Carter’s hands, a way to desensitize them so he’ll touch more, she said.
“We like them to put their hands in the food and really make a mess,” she said. “As babies, we’re supposed to make messes.”
“Elizabeth’s taken him a long way,” Robyn said as she juggled Brayden on her hip and watched as Alyssa socialized with the other children in the waiting room, her Barbie computer blaring in the background.
“He was literally a different child when he started here.” At 10 months old, when Carter began his therapy with Clerk, he was at a 1-month-old level.
Now, Carter’s almost up to speed with his parent’s built-in yardstick, his twin brother. The two of them have switched roles with their parents, Carter clinging to his dad after spending so much time away from him in the hospital and Brayden gravitating toward the mother that he missed for almost the first year of his life. Alyssa is left in charge of weekend activities, Graig said. Sundays are family days. The Martinez family hunkers down in their home in the eastern hills of Gilroy to spend some long overdue quality time together.
A friend of Robyn’s once offered her the most comforting words and Robyn still keeps them close to her heart: “Tomorrow will be a better day,” she told Robyn. “And it will be,” Robyn said. “We were so blessed.”
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