Marquise Reynolds, of Onalaska, is waiting for his third liver.
Marquise Reynolds, of Onalaska, is waiting for his third liver.
For Dawn Reynolds of Onalaska, the relief eight months ago of finding a second donor liver for her son, Marquise, 20, was short lived.
Within a few weeks, doctors noticed the transplant did not seem to be successful. And before Christmas, the family received the news Marquise would once again need a donor liver.
“Everything just kind of keeps hitting us and it’s very frustrating,” Dawn Reynolds said over the phone from the University of Washington Medical Center in Seattle, where she and Marquise have been since May. “But as a family, we just do what we’ve got to do.”
Marquise received a second liver on May 20, 2019, but within three weeks began experiencing severe rejection issues. Marquise has undergone 11 biopsies and has had five stints put in since surgery. Dawn said Marquise’s case has been somewhat of a mystery to his medical team because treatments that have traditionally worked in other cases don’t seem to be helping in this one.
“They have no idea why the cells are dying. They thought this liver was good,” Dawn said. “They said his immune system is unlike anything they’ve seen before. The doctors are really trying but his case is so complicated, they don’t really know what they’re dealing with.”
Marquise has lived with cerebral palsy and attention deficit disorder since birth. At the age of 15, he was diagnosed with liver failure due to Drug Reactive Eosinophilia with Systemic Symptoms (DRESS) caused by a medication for acne. He was flown to Utah, where doctors were able to find him a donor liver in less than a day. For about four years, that liver worked, though in his young life Marquise has been hospitalized more than 150 times. The liver failure also affected his brain function, making it difficult and frustrating for him to communicate.
“And he’s got serious depression and Post Traumatic Stress Disorder,” Dawn added.
Marquise was admitted to the University of Washington Medical Center in May and besides short trips home to Onalaska for Thanksgiving and Christmas, Dawn and Marquise have not been home. He receives plasma pheresis treatment three times every week in an attempt to extend his life while they wait on a new liver. Dawn and Marquise are currently living at Transplant House in Seattle, which is a non-profit apartment style housing for transplant patients. While Transplant House offers housing for below market rate for Seattle, there is still a rental cost to the family. While Dawn stays with Marquise at Transplant House, her mother stays at their family home in Onalaska with Marquise’s siblings, ages 21 and 18, who have their own medical and developmental issues. Dawn said she is extremely grateful for what they have but the situation is a strain on the family.
“I’m basically supporting two households and right now, it’s to the point where I’m struggling to keep the house,” she said.
Dawn’s 24-year-old daughter recently set up a Go Fund Me page to ask for donations to help the family during this time. Dawn, who lives on disability payments, said it is hard to ask for help but the financial situation is quite dire for them. Besides the expenses of two households, she said some of Marquise’s medication is not covered by insurance so the family must pay out of pocket. One of his medications costs $52 per dose.
There is no way for the Reynolds family to know how long they will have to wait for a new liver for Marquise, but Dawn noted that, unfortunately, the only way for it to happen is for an organ donor to die. She added that because of the past liver rejection, doctors have told them the next liver must be the “gold standard” — a liver that is completely compatible and in perfect condition — for it to be chosen for Marquise.
“They said with the second transplant, your odds of survival are 70 percent and with the third your odds go to 50 percent and that crushed me,” Dawn said. “But they said what he has going for him is that his heart is strong, his kidneys are good and he is young … We believe God is in control. He didn’t save him twice to take him now.”
Before his most recent hospitalization, Marquise was able to graduate high school and attended some classes at Centralia College. Dawn said they talk often of his plans for his future, which include going back to CC and getting a job, to keep his spirit up.
“He has a lot of plans for himself but he’s just not getting up right now,” Dawn said. “We told him ‘you have to keep fighting no matter what. No matter how bad it looks.’”
As for Dawn, she just wants to see her son have a shot at life. Despite his illness, he remains the same generous spirit he has always been. Even when he can barely walk, he will hold a door open for someone. She said she takes photos of him every time he has a treatment and even though his high bilirubin levels make his eyes and skin “highlighter yellow” she said she keeps taking photos because she wants him to someday be able to look back and be proud of what he endured. She said her ultimate hope is he may someday have children he can show the photos to and explain what he went through to survive.
“I just want him to live a long, healthy life,” she said. “His life will never be normal, but I want him to have a life, go back to school, get a job that gives him purpose and to have a family. I just want him to have a life and do whatever he chooses to do.”
