It was a long journey that brought Hannah Grace Jones to FedExFamilyHouse. When the 10-year-old with tuberous sclerosis complex (TSC) was diagnosed with acute lymphoblastic leukemia (ALL), Memphis became the best place in the world for her family.
The journey started when Hannah Grace was just 8 months old. Catrina Jones knew something wasn’t quite right when Hannah Grace began experiencing episodes during which she would tighten into a fetal position and then stretch out as if she were in pain. Her pediatrician referred the family to a GI specialist thinking it might be acid reflux, but upon arriving at that appointment, the doctor knew something more serious was happening to little Hannah.
The doctor suspected she was suffering from infantile spasms—a type of seizure—and referred Hannah to a neurologist. Two months later, when they were finally able to get an appointment, an MRI showed tumors on her brain consistent with tuberous sclerosis complex (TSC), a disease in which no two cases are the same. While Hannah’s case has been mild, medications and seizures have caused cognitive delays, and she still has regular ultrasounds each year to check for any new tumors.
In 2012, Hannah went to her local pediatric neurologist in Louisiana expecting lab work to show she could start weaning one of her seizure medications. Instead, her lab results came back abnormal. Her white blood cell counts were low, even though Hannah didn’t appear to be sick.
The lab work was redone, and this time, her white blood cell count was even lower; in fact, they were at a critically low level. The pediatrician told Catrina to take Hannah home and keep her away from everyone because a fever could be devastating with such low numbers. Later that day, a fever started, and Catrina rushed Hannah to the hospital where things quickly went from bad to worse.
Hannah stayed in their local hospital’s pediatric intensive care unit (ICU) for two weeks, but when her health worsened, she was transferred to a larger hospital in Baton Rouge. There, she broke out in a rash from head to toe, but doctors were unable to pinpoint exactly what was happening. After putting Hannah through a battery of tests, they ran out of options and performed a bone marrow aspiration.
The next morning, the doctor came into Hannah’s room looking very distressed. “Don’t sugar coat it. Give it to me straight,” Catrina told him.
She was shocked to hear that Hannah had acute lymphoblastic leukemia (ALL).
“I did not want to hear that my child had cancer, but I said, ‘OK. What are we going to do about it?’” The next morning, Hannah and Catrina went by ambulance to St. Jude Children’s Research Hospital—in total disbelief.
Although it was an overwhelming and frightening time, Catrina was blown away when the doctors at St. Jude reached out to the TSC team at Le Bonheur Children’s Hospital to make sure they were providing the best possible treatment options for Hannah. They had never treated a child with both TSC and ALL, and both hospitals were dedicated to working together to achieve the best outcomes for such a unique situation. Le Bonheur is one of the few hospitals in the country with a comprehensive program to treat this genetic disorder.
“I could see God’s plan unfolding. I hate that cancer took us to Memphis, but it was God’s grace and will for us to go there and meet the team at Le Bonheur,” Catrina says through tears.
For each visit, Catrina and Hannah travel five hours from Louisiana to Memphis, and they’re thankful they don’t have to worry about figuring out where to stay or finding the money for a hotel.
“Having FedExFamilyHouse and their volunteers to help us takes the stress out of an already stressful situation,” she said. “I’m worried about upcoming scans and tests, so not having to worry about the logistics of lodging is such a blessing.”
Now 16, Hannah still requires regular check-ups at both hospitals, and she’ll continue to need visits to Le Bonheur when her treatment at St. Jude is complete.
“Memphis has it going on! To have something like the FedExFamilyHouse is just wonderful. I don’t know what we’d do without it,” Catrina said.