Last August, Warren Fesperman was pumped up.
He was ready to give “his soldiers” to his little sister.
He’d been told that doing so might save her life. As Josie’s big brother — he’s 5 and Josie’s 3 — he was ready to be her knight in shining armor.
What Josie needed rescuing from isn’t easy to explain, but from the age of six weeks, Josie seemed to be fighting for her life. She had a string of infections and couldn’t gain weight.
Testing determined that her body wasn’t producing its own antibodies because of a condition called agammaglobulinemia.
Every three or four weeks she had to receive intravenous immunoglobulins made from donated human plasma, which would help her fight off disease temporarily.
But as a way of life, it wasn’t sustainable. Her parents, Alan and Melissa, had to keep Josie isolated from even everyday activities to protect her from getting sick. She couldn’t go to church or pre-school or parties with friends.
Her health fluctuated, and she was in and out of the hospital. Last January, things got really bad. Josie contracted pneumocystis pneumonia (PCP), the sort that end-stage AIDS patients often get because of their severe immune deficiencies. And then an MRI showed that an infection had attacked the basal ganglia area of her brain, which robbed her temporarily of her motor skills and speech.
And incredibly, while all of this was going on with Josie, Melissa (friends call her “Missy”) was dealing with her own medical nightmares, including hemiplegic migraines that would cause stroke-like paralysis on one side of her body.
Unfortunately, Melissa is still dealing with that — but Josie is doing great, thanks to Warren’s soldiers.
Warren’s “soldiers” are his bone marrow — or the cells in his bone marrow that Josie needs to stay healthy like Warren does.
Warren donated some of his bone marrow to Josie on October 26, 2011, at Cincinnati Children’s Hospital. The surgery took twice as long as expected because Warren, the surgeon told Alan and Melissa, had the hardest bones in a child he’d ever encountered.
When Warren woke up in the recovery room, he had one question: “Did I give my soldiers to Josie yet?”
He never complained, Melissa says.
In fact, he didn’t even spend the night in the hospital because he bounced back so quickly from the surgery.
“Get it out of my arm,” he said of the IV. “I’m ready to go home.”
He remembers everything.
“I didn’t want to leave without Josie,” he says. He returned home to North Carolina though, staying with his aunt in Charlotte while his soldiers got to work, whipping Josie’s immune system into shape.
“He handled it as well or better than most adults,” Alan said.
Warren’s soldiers have now completely taken over, staging a successful coup in Josie’s body.
It’s sometimes hard for Melissa and Alan to fathom.
“Our son’s immune system is taking place inside of our daughter,” Alan says.
That seems a miracle to them when they consider that less than a year ago, doctors told them that without intervention, Josie wouldn’t make it through childhood.
Of course all this didn’t happen overnight. Josie and Missy went to Cincinnati in September, and although the transplant was done Oct. 26, Josie needed to be monitored for months and couldn’t return home until March 4.
Alan stayed for about six weeks, returning home after Thanksgiving. After he left, his mother, Jane Fesperman, and Melissa’s mother, Nancy Raeburn, took turns staying with Josie and Melissa, who needed an extra adult around in case she was struck with a debilitating migraine.
Josie and Melissa spent the last few months near the hospital in an apartment. Josie no longer required constant care in the hospital but needed to be close by for follow-up visits.
Melissa had planned to stay at a Ronald McDonald House with Josie, but when friends of Melissa’s sister-in-law offered the use of an apartment, they gratefully accepted.
“It was a huge, huge blessing,” Alan says.
In March Josie and Melissa finally came home.
They were a few blips along the way. Josie contracted the CMV virus and had to deal with an infected lymph node. She contracted encephalitis in January and as a result has been left with a slightly abnormal gait, which can be addressed through physical therapy. She’s still taking some medications to keep the PCP pneumonia and the CMV virus at bay, but before too long, she won’t need those.
Her immune system has come in quickly, according to the blood work. Regular engraftment tests show that the transplant is working well, that the donated cells are growing and making new blood cells.
Of course no one can predict the future, but Melissa says there’s no reason to believe that Josie’s not going to have a completely normal life, free of excessive worry about infection.
“She is a very happy, strong-willed child, and that has served her well,” Alan says.
Josie still has a port for her weekly infusions, but within six months to a year they ought to be able to have that removed, Melissa says. Josie has much more freedom now than she used to and no longer faces so much pressure to avoid large groups of people for fear of getting sick.
She can go to pre-school this fall, she’s been told.
She also helped plan a family Make-a-Wish trip in November, telling the organizers that she wanted to be Ariel.
What better place to be Ariel than at Disney World?
Alan says his family has been overwhelmed with the support of friends, family and the community, support that has been both financial and emotional.
“It’s been amazing,” he says. “We’ve been shown the true meaning of compassion.”
“It really renews your faith in the goodness of people,” Melissa says. “You realize the little things don’t really matter anymore. We saw situations (at the hospital) that made ours look easy in comparison.”
Of course nothing is ever completely trouble-free. Alan got unwelcome news on March 17 — just a few weeks after Josie came home — that he had been laid off from his job as a pilot with Food Lion. Cutbacks were made on the basis of seniority, and unfortunately, Alan was the most recent hire. He says he’s been lucky, however, to be finding plenty of contract work, at least for now.
And of course there’s that curious thing called perspective. Seeing a child through a major health crisis tends to make you realize what’s important and what isn’t.
What’s important is that the road ahead for Josie is now a long one, thanks to Warren’s soldiers.
Melissa says she overheard Warren telling someone recently that he had saved his sister’s life.
She could not disagree.
Contact Katie Scarvey at kscarvey@salisburypost.com Follow Salisbury Post Lifestyle on Facebook.