Two brothers with sickle cell disease await transplants - KPLC 7 News, Lake Charles, Louisiana

Two brothers with sickle cell disease await transplants

Kevin and Jayven Francis have sickle cell disease and are awaiting stem cell transplants from another brother. (Source: KPLC) Kevin and Jayven Francis have sickle cell disease and are awaiting stem cell transplants from another brother. (Source: KPLC)

Two brothers are in a crisis this morning, hospitalized because of the severe pain of their sickle cell disease.  

14-year-old Kevin Francis and 10-year-old Jayven were born with sickle cell disease: an inherited blood disorder that can cause severe pain and damage throughout the body.  Their hope for long-term relief is riding on successful stem cell transplants from their brother, Jordan.

The fight to get to transplant day effects every aspect of this family's life.

Alicia Guillory is the boys' mother, superwoman, caregiver, and the person who never leaves their bedside.  She says watching her boys in intense pain never gets easier.

"It's unexplainable," she said.  "You just don't get used to it.  They've both been through so much and so much pain."

On this day, Kevin is in the pediatric unit at Lake Charles Memorial Hospital, trying to stabilize after a sickle cell crisis.

"It feels like something's just poking my body everywhere," he said.  "Once the pain comes, it just starts to spread like it's trying to attack you."

Kevin trembles in his hospital bed from the pain and the medicine to manage it.  His brother, Jayven, has been there before, as well, far too many times to count.

"Makes me feel bad," said Jayven, "puts me in a crisis."

Just a few hours after our interview, Jayven was also admitted to the pediatric unit, moving from the playroom to another hospital bed.

The most promising relief from these hospitalizations and intense bouts of pain is through a stem cell transplant.  A match is confirmed with one of the boy's two other brothers, without the disease.

"I said, 'Jordan, you know you're the match to cure your brothers?'" said Guillory. "He was like, 'Yes!'  He was excited."

Kevin is set to go to New Orleans to start the process next week, where he will eventually get his brother's bone marrow to restore his own immune system and make normal red blood cells.  He will be in the hospital for at least three to four months.

Guillory's husband will stay in Lake Charles with their other sons, while he works as a parking lot supervisor.  She has had to take an unpaid leave of absence from her job at McDonald's, handling the round-the-clock care that comes with this stage of the disease.

In the midst of all this stress, Guillory has tried to sell hot lunches she prepares in her kitchen to help pay the bills.

"I did hot links, chips, cake, soda," she said.  "One week I did red beans and rice, sausage, cake cornbread.  I did pulled pork sandwiches."

But Guillory says the financial uncertainty does not compare to what is a day-by-day fight for survival right now, trying to get these boys well enough for a possible cure to work.

"I would rather say I gave them a chance with trying to cure them than not giving them a chance at all," she said.

Kevin is ready, but guarded.    

"I want to do it, but I don't know whether it's going to cure me or not.  I'm trying not to get my hopes up a lot," he said.

And Jayven is ready to be next in line, even though the process is scary.

"I hope that it works and that I don't have sickle cell anymore," he said.

Kevin will be admitted to Children's Hospital in New Orleans on September 27.  He will be taking several medications and undergoing chemo to get his body ready for his brother's stem cells.

The family is working to raise money to help off-set their expenses while they spend several months in New Orleans.  Click here to connect to their fundraising page.

Learn more about local resources for sickle cell disease here.

Copyright KPLC 2016.  All rights reserved.

Powered by Frankly