In the summer of 2006, the Justiniano family looked forward to the start of the coming school year. After a divorce, Carmen and her sons had just moved into their current home in Fairfax. Jose, 12 years old at the time, would attend Robinson Secondary School, and Natanael, then 5, was ready for kindergarten at Bonnie Brae Elementary. Nothing could prepare them for the challenges they were soon to face.
On August 7, 2006, Carmen found herself in the emergency room with her younger son.
“I had taken him to the pediatrician,” she recalls. “I was concerned because his tummy was big and it was hard. It was like a stone when you touched it. Immediately the pediatrician noticed that there was something going on.”
Thus began four days of blood tests to determine the cause of his enlarged liver, kidney, and spleen. The doctors tested for “everything under the sun”, unable to provide Carmen any conclusive answers.
“Don’t worry, it’s not cancer,” she remembers the doctors assuring her. “All the cancer markers are not there. His white blood cells were normal.”
After a biopsy of his liver on the fourth day, doctors determined that the little boy did indeed have cancer. A bone marrow aspiration revealed acute lymphoblastic leukemia (ALL), a type of cancer in the blood and bone marrow, most common among juveniles. Only 1 percent of all patients have Natanael’s rare form, with a 30 percent survival rate. It’s very high risk with a poor prognosis, according to Carmen. A bone marrow transplant was crucial to his recovery, so the process for finding a match began. Carmen, Jose, and the boys’ father were tested with negative results. A search through the National Marrow Donor Program (NMDP) revealed no matches either.
In lieu of a transplant, Natanael embarked on two and a half years of treatment to combat his disease. A day after they’d determined he had leukemia, chemotherapy began. “He went into remission on Day 8 which meant it was working and there was a good chance he’d be OK,” Carmen notes. During those years, he was in the hospital 28 times for a total of 165 days.
Meanwhile, older brother Jose shouldered the responsibilities of school work while worrying about his brother’s health. Carmen remembers how hard it was on Jose, “I had to be in the hospital. I had to find people who would stay here overnight. I couldn’t leave a 12-year-old alone.”
As a young boy, Jose felt a sense of helplessness. “School was the only way I could help my mom. So I made it a point to do well in school, get good grades and not have her worry about me in that aspect.”
With the help of friends and coworkers, Jose was shuttled to violin lessons and other extracurricular activities, then to the hospital to see his little brother. Unable to have friends over due to the risk of germs, being the sibling of a cancer patient could be very isolating.
In 2008, while Natanael was finishing up his treatments, Carmen was diagnosed with breast cancer. Her treatment lasted about six months and her son’s illness gave her a unique perspective on her own cancer.
“I saw it as a privilege at that point because I had seen him suffer so much and then it dawned on me, I don’t know how he did it. I don’t know how he laughed. I don’t know how he walked around. I didn’t even have strength to get off the bed,” she observes. She felt it was more painful to witness Natanael’s pain and Jose’s worrying about both of them than it was to experience cancer herself.
In January 2011, after about two years back in school, Natanael relapsed. Finally finding a match through the NMDP, from a baby’s cord blood donation, the family made the decision to move to North Carolina so that he could receive a transplant from Duke Children’s Hospital in Durham. After pre-transplant treatment and removal of a tumor that had developed as a result of chemotherapy, Natanael was ready for his transplant on May 16. The family remained in North Carolina for one hundred days following the successful transplant and Natanael is now restricted to his home in Fairfax for a year to ensure he remains in a sterile environment. He will never meet the baby who saved his life, but he now possesses a new blood type (hers) and DNA from someone other than his parents.
Both Carmen and Jose are amazed by Natanael’s attitude throughout this journey. According to his older brother, “His personality, his optimism, surpasses even my understanding. I can’t understand to any degree how he was able to be so optimistic and so happy,” throughout his illness. Carmen loves to repeat his catchphrase: “Today is the best day of my life.” Even on his worst days, the smallest thing can brighten his mood and prompt him to declare that day the best he’s ever had.
The Justinianos credit God as the number one reason they’ve survived the past five-plus years.
“He carries me through every single morning that I have to wake up to go to work. I don’t have the strength. Honestly I am not a strong person. I draw my strength from God,” Carmen states.
In addition, they feel blessed to have a live-in nanny, Carmen Ana, who represents “selflessness, service, and dedication” in their lives. A longtime friend from Puerto Rico, Carmen Ana has cared for Natanael since his mom had to return to work 11 months after he was diagnosed. She provided respite to Carmen when she was ill. She even traveled with the family to North Carolina to support them during Natanael’s transplant.
“She’s become closer than any family we have here,” Jose reports. Carmen Ana wakes Natanael daily by playing her guitar and singing praise songs; he has grown to believe all children are woken this way.
They are also grateful for the special opportunities afforded them by non-profit organizations dedicated to young cancer patients. They’ve been able to attend camps through Special Love for patients and their siblings) and took a trip to San Diego to Lego Land, Sea World, and the zoo through Make-A-Wish Foundation.
The Justinianos are appreciative of the support of friends, family, neighbors, and church members. Amy Talley, once a stranger and now a close family friend, came to Carmen’s door and demanded she pass over her dirty laundry. At first taken aback by this request, Carmen realized the importance of accepting help from others during her time of need. She advises other families with cancer patients to ask for help; many times people just don’t know what is needed.
“There are days you cannot function and you need people to carry you through,” she said.
Jose notes, “We’ve struggled all of the time with ‘Why him?’…there really isn’t an answer to that, but we do know this – that through our specific experience we can’t imagine a life without the afflictions and the blessings that have come from this.”
Today, Natanael is a bright, charming 10-year-old who enjoys video games and wants to be a chef when he grows up. He’d like to start an “Italian Samurai” restaurant, fusing Italian and Asian cuisine together. One of his specialties is pasta with red sauce and curry powder. He also likes to make Vietnamese pho noodle soup. His Tae Kwan Do instructor has offered to give him in-home lessons every two weeks so he can continue the activity he had started before his relapse.
He works with homebound instructors five hours a week and will soon start interacting with his fourth grade classmates at Bonnie Brae Elementary School using his HopeCam laptop. He has a close friend named Lucy who faithfully sent him postcards with “Jokes of the Day” during hospital stays.
Jose, a gifted violinist, will graduate from Robinson in the spring and plans to become an aerospace engineer. He’ll attend Virginia Tech next fall with a minor in music.
The family has commemorated the journey they’ve taken together through a scrapbook, a website Jose created for orchestra class, and a CD recorded in a studio before Natanael’s transplant. One song on the CD features a duet by Carmen and Natanael, singing “You’ll Be in My Heart” from the Disney movie, Tarzan. Carmen felt it was important to make this recording because of the uncertainty of the success of the transplant.
But the journey isn’t over yet. Carmen continues to be vigilant of Natanael’s health, ready to whisk him back to the doctors with any sign that his body is rejecting the transplant or that he might be dehydrating. She worries about future side effects of his years of treatments, such as possible damage to his major organs or issues with fertility.
In an effort to pay for transplant-related costs, Carmen is working with the Children’s Organ Transplant Association (COTA) to raise $50,000. Natanael will retain the fundraising account for his lifetime to assist with future transplant-related issues. COTA is a national charity dedicated to organizing and guiding communities in raising funds for transplant-needy patients.
How to Help
Donations to his account may be made in person at any BB&T Bank branch location using account number 0005108459729 or mailed to the Children’s Organ Transplant Association, 2501 West COTA Drive, Bloomington, Indiana, 47403. Checks or money orders should be made payable to COTA, with “In Honor of Natanael J.” written on the memo line of the check. Secure credit card donations are also accepted online.
Upcoming fundraising events include an Usborne Book Sale on November 19 and Bald Birthday Bowling on Natanael’s birthday, December 4, at Bowl America at 5615 Guinea Road in Fairfax. For more information about these events and to assist with fundraising efforts as a volunteer, contact Amy Talley at 703-395-5143 or email@example.com.
Carmen reports, “To me, Natanael’s laughter is like music to my ears. And especially when he sees his brother …the light is on. His brother is his hero. To us, he’s our hero but to him, his brother is his hero.” The Justiniano family seeks other heroes to be a part of the next chapter of their journey.