Thirteen days after he crosses the finish line on Dec. 1 during the 2018 St. Jude Marathon Weekend, the Rev. James Nelson will be in Bethesda, Md. at the National Institutes of Heath Clinical Center.
Doctors there will insert a needle – the size of an air pump needle – 10 times into each of his hips. They’ll withdraw about a quart of bone marrow that will be funneled into the body of his daughter, Jahleel (Wait on the Lord in Hebrew).
Success ultimately would mean that Jahleel’s body would be better able to produce a higher white blood cell count, which would strengthen her immune system. St. Jude’s professional kinship with NIH opened the door to the opportunity.
On a rainy Veterans’ Day morning, Nelson, assistant pastor at Greater White Stone Missionary Baptist Church, was in race workout mode.
“The last six years I’ve been running the half marathon. I started this prior to my 50th birthday to really be healthy, get in shape. But also, I wanted to give back to St. Jude because they really were instrumental in saving my daughter’s life. … Not a penny was ever even talked about.”
Jahleel won’t be at the race. She leaves for NIH on Nov. 27. The transplant will be Dec. 14.
“I have the app so I can see where he is (as he runs),” said Jahleel. “I definitely will be keeping up with him. And we will have family out there on the course to cheer him on.”
GATA2
Officially, Jahleel has GATA 2, a “germline disease, which causes a wide spectrum of phenotypes including viral and bacterial infections, cytopenias, myelodysplasia, myeloid leukemias, pulmonary alveolar proteinosis and lymphedema.”
It took a while to figure that out after Jahleel fell sick during the fall of her senior year at Central High School. For a while, she took daily shots to boost her immune system. Doctors now have determined that she is healthy enough for the bone marrow transplant.
The gene Jahleel has that produces the deficiency is on her maternal side, which prompted the paternal side search for the best bone-marrow match.
“I am her best match,” Nelson said, pausing amid his workout routine to detail the story. “I had already prayed that I would be. I was delighted that I would be able to do that for her. I would give my life for her. To give bone marrow, that’s a simple thing.”
Along with Jahleel’s mother, Dr. Brenda Hardy, it’s all hands on deck, Nelson said.
“We know that she probably will be at NIH probably through March…Our family has already mapped out weeks where different people will be going to Bethesda to stay with her during that time.”
Jahleel is a Kroger assistant manager, particularly geared toward human resources. She has been granted a leave of absence for the surgery and recovery.
“I’ve been pushing it off. I kind of wanted to make sure I was living my regular life, trying to do what I want to do. …I said give me some months to figure out what I need to do, but they said either do it now while you’re young, somewhat healthy, not dealing with anything else. Or, wait down the line and you could potentially build up to leukemia…”
Conversation
Jahleel and her father have talked different aspects of the transplant – the what ifs and more.
“We’ve definitely talked about care because before I go through the transplant I have to go through chemo and radiation. I cut my hair off about two weeks ago,” she said.”
They’ve talked about the healing process.
“The faith part has definitely kicked in,” she said, noting that her church has been instrumental in helping her.
“It’s very scary not knowing what’s going to happen. I try not to think about it, but it’s definitely one of those risks that you have to take.”
Nelson said, “Of course we have had the conversation ‘why me?’ She is a believer …she has heard me preach all these years. … ‘why not?’”
And, he said, “Her testimony will be even stronger now… to be able to help her friends, who are millennials faced with all kinds of issues as well.”
Jahleel credits God and friends with helping her with an abiding goal when she got sick in high school. The combination helped her to graduate on time, despite being unable to go to school for months as she went back and forth to Le Bonheur and St. Jude.
“I even went to Mayo Clinic, the National Institutes of Health. I had people from Paris, people from Colorado studying me. …Nobody knew what was going on. …
“I was just trying to graduate. …trying to live a regular kid’s life, a regular teenage life. … It was hard but I got through it. …My friends had the same classes that I did. They pretty much knew what I had to complete. …They would give me their notes…on top of the home-school thing.”
As for detailing her story, Jahleel says she is an open book.
“Whatever I can do to help whoever else is going through it, I have no problem telling people what is going on,” she said.
And, she is “definitely proud of my dad; just even running. … Getting out there running in rain, snow, sleet, hail; his dedication. He’s been running since I’ve been at St. Jude. …I’m definitely glad he can run this year.”
Nelson admires that Jahleel “wouldn’t quit” as doctors searched for the cause of her illness, nor afterwards.
He’s confident that drive will help see her through the next leg of the journey.
Runners who fundraise for St. Jude while training for their race are called St. Jude Heroes. Nelson is one.
“I’m not doing this for any feather in my cap,” he said. “I just want people to know that you can beat it. We’ve done it.
“You may have a child (ill)… take it serious. Get it checked out. If you’ve been diagnosed, don’t give up. There’s always hope.”
GALLERY — (Photos: Karanja A. Ajanaku)
