Marisela Newcomb vividly remembers the day when she realized her eight-year-old son, Isaac, was getting sick. It was April 17, 20l1.
“I noticed that Isaac’s eyes were slightly yellow,” Marisela, a resident of Phoenix, AZ recalls. “I immediately knew something wasn’t right, so I contacted his pediatrician.”
But when she reached out to the doctor on that mid-April day, Marisela could never have guessed how seriously ill Isaac was. Nor could she have anticipated just how rapidly—over the following eight weeks—a potentially lethal form of liver disease would turn her entire family’s life upside down.
After the initial visit to the pediatrician, Marisela and her husband, Troy, thought Isaac probably had some type of hepatitis, which would have been sufficient cause for concern. However, the very next day, they received a call advising them that Isaac needed to get to Phoenix Children’s Hospital as soon as possible.
“That’s where we stayed for a week until a doctor told us that Isaac’s lab results weren’t getting any better,” Marisela says. “They recommended that Isaac be transferred to University of Arizona Medical Center (UAMC) in Tucson because that was the best place for him."
When the medical staff in Phoenix told Marisela and Troy they were flying Isaac to the other hospital, which was also a transplant center, Marisela chose to stay in a state of denial.
“I truly thought to myself that this was a little extreme,” she admits. “I was sure he’d be better in a week or less and all of this was being done for nothing."
Complete Liver Failure, and No Reason Why
Marisela’s contention that Isaac would soon recover took a severe blow when doctors at UAMC stated that Isaac was so desperately ill, he was being placed on the liver transplant list.
Both she and Troy took extended leave from their respective workplaces. Marisela is employed by the department of health in Arizona as a programs and project specialist involved with licensing long-term care facilities. Troy is a quality assurance manager.
Isaac is their middle son. So, back home in Phoenix, Marisela’s mother and sister agreed to take turns to look after their other sons, Angel, who was 11 at the time, and 5-year-old Gabriel. On weekends, the boys reunited with their parents and Isaac in Tucson.
What made the gravity of the situation even more difficult to accept for the Newcomb family was the frustration that the doctors couldn’t pinpoint the nature of the disease. They said an unknown virus had attacked Isaac’s liver and caused complete liver failure. A doctor at UAMC said he’d previously seen only one similar case of a mystery virus like this one.
By that stage, doctors told Marisela, the virus had “completely killed Isaac’s liver.”
Even more incomprehensible was that up until April 17, Isaac was a typically active kid who showed no signs that anything was wrong. He’d even been competing in youth soccer tournaments. At other times, he also loved to swim and play football.
Just as she responded when she noticed the yellowing of Isaac’s eyes, Marisela tried to convince herself that her son didn’t really need a transplant.
She says: “We figured the worst thing we would ever have to deal with was just a few weeks in the hospital. Not one other member of our family has ever gotten a transplant so how could our son need one? He is only eight-years-old! How did he get this virus? Why was this happening to us, the entire family! Our hearts were breaking.”
A Mystery Liver Virus Takes an Ominous Turn
Isaac’s transition from good health to a dire illness was terrifying, both in turns of its rapidity and disturbing symptoms.
At first, the mysterious liver virus caused Isaac to sleep all of the time. Progressively, he started to lose his motor skills. Then he began to show signs of brain swelling. His speech was slurred and his coordination was diminishing.
Every few minutes, Marisela says, Isaac would scream uncontrollably because of the pain in his head. To the family’s horror, they saw Isaac’s young body twitching during seizures.
Doctors explained that Isaac’s liver was so severely damaged, it could no longer remove toxic substances from his blood. The symptoms they were witnessing were the toxins traveling through his body until they reached his brain.
“We were informed that because this was such a life-threatening situation, they were placing Isaac in a medically-induced coma,” Marisela says. “It was so bad, he was moved up to number one on the transplant list for the Southwest region. Because his kidneys couldn’t cope with the toxins, he also was put onto dialysis.”
With Just Hours to Go, a Miraculous Transplant—on a Day Set Aside for Mothers
Sunday, May 8, 2011 dawned, and for most mothers across the U.S., it was going to be a joyous day. After all, it was Mother’s Day. As for Marisela, she thought it was going to be yet another agonizing day. Neither she nor Troy had slept much through the night. How could they, with their son in critical condition?
And yet, as it sometimes does, life took a strange—and positive—turn that Mother’s Day for the Newcomb family. They were notified there was a matching liver donor, and Isaac’s transplant would commence as quickly as possible.
Marisela recalls: “With joy in our hearts for our family and hope for our son, it was the best Mother’s Day gift ever. We also had tremendous sadness for the loss of another family’s precious child. This is the kind of emotion that anyone would struggle with.”
The transplant was a success. Isaac had a new, healthy liver.
Still, Marisela will never forget what a doctor revealed once the surgery was completed. When she asked them how much time Isaac had to live without a transplant, the doctor replied “it was a matter of hours. After four or five hours, the toxins in his body would have left him brain dead.”
Fourteen days after his transplant Isaac was released from the hospital.
The Challenges of Being a Caregiver
Throughout her ordeal at the two hospitals, Marisela was at her son’s bedside. She slept in his room. She tended to him when the professional staff stepped out to check on other patients. Troy was there to support her though work commitments meant he had to return weekdays to Phoenix shortly after the transplant.
Essentially, Marisela, Troy and other family members when they could get to Tucson, were Isaac’s eyes and ears, especially until he began to recover after the transplant. They were his constant caregivers, a point Marisela acknowledges as it was pointed out to her that November is National Family Caregivers Month.
Marisela learned from this experience that it’s not easy being a caregiver. “While all this is happening, you have to take care of your child who isn’t feeling good. The doctors, the surgeons, the patient advocate, the tests—there was a lot to take in but you’ve just got to do it. You help where you can.”
Fortunately, Marisela and Troy received incredible support from family, friends and their workplaces. It came in the form of long-term family visits to Tucson; ample supplies of food; generous financial support and, perhaps most important for them, heart-felt prayers.
“People I didn’t even know came and held prayer chains for Isaac,” Marisela says. “His school rallied around him. His principal and teachers raised money for medical care. There was such a sense of community and love. And it helped us to get through it.”
Marisela is still astounded at how compassionate staff members were at the University of Arizona Medical Center. “One of the doctors came in on her day off and gave Isaac a toy after the surgery because she said she couldn’t get him out of her mind.”
Yet, in the still of many lonely nights, Marisela would sit back—when she couldn’t play the role of caregiver—and ask herself: “Is this really happening?” She was strong for Isaac when he was awake. But when he started sleeping all the time, she found it emotionally very rough.
What advice does Marisela have for other caregivers, many of whom find themselves in desperate circumstances for even more extended time than she was?
“I would say unite with your family, be strong with your family. Tell them to pray a lot and let your family and friends help you. And try to take care of yourself. Try to sleep and do everything you need to do because you need to take care of this person, your family member.”
For Isaac, It’s Back to Normal
Isaac is 11 and in the fifth grade. His birthday was November 19, 2013.
Still a caregiver, Marisela ensures Isaac takes his anti-rejection medicine and avoids conditions that could affect his overall health.
The good news is that Isaac is back to being in good health and as strong as ever. Marisela says, “He has so much life left in him. He is truly blessed to be a liver transplant recipient.”
She adds: “You can’t tell that anything was ever wrong with Isaac. He’s on his football team. He’s so active and always running and playing and doing stuff—he scares us all the time! His football team is the Rattlers and they call him Little Warrior, and he just loves it!”
As for Isaac’s siblings, Angel is 13 and Gabriel is 7. Yes, they’re a family again. But, if the obvious needs re-stating, the experience of the Newcomb family illustrates in no uncertain terms that liver disease can happen to anyone at any time.
Compassion for Others
This is not quite where the story of Isaac and his family has its ending.
When Marisela nearly lost a son, took care of him over an extended period, and received such an outpouring of generosity and love, she learned a great deal about the true value of life and the innate goodness of others. As a result, when she can, Marisela helps other families who find themselves in similar difficult situations.
“I give support because I can relate,” she explains. “Our family fundraises for the Ronald McDonald House because I got to stay there with Isaac in Tucson after the transplant. We take part in the American Liver Foundation walks every year and raise money.”
And Marisela only has the deepest admiration for the family of Isaac’s donor. After initially waiting for around a year to reach out to them, the Newcomb family has twice gotten to meet with the family of the donor, a two-year-old girl.
“We are so thankful but we can only imagine what they are going through,” Marisela says. “It is bittersweet because we had been on the verge of losing our baby.”
To join Isaac, his family and many others just like them register for the Liver Life Walk today!