When kids get sick

Page Dowdy/Chesterfield Observer Tara Hannon with her eight-month-old daughter, Leah, who was born with Giant Cell Reparative Granuloma. The condition required Leah to undergo an eight-hour surgery on the base of her brain.

Ten fingers and 10 toes. That's the first thing new parents look for when their kids are born as a sign of a healthy delivery. Unfortunately, raising a healthy child isn't always that easy. Sometimes children's bodies go haywire, wreaking havoc on the family, and immediately catapulting parents into medical crises that most are not prepared for.

Below are the stories of three county families who are living with the stress and challenges of having a child that's chronically ill.

The Hannon family

 

When eight-month-old Leah was born, her delivery went smoothly and her parents, Tara and Mark Hannon, were thankful for their beautiful new baby girl. When Leah failed her newborn hearing test, her parents took her home, trying not to make too much of it. Two weeks later, the new mom noticed something protruding out of her daughter's ear.

Photo courtesy of Luck family Allen Luck with his mom, Linda, after his recent graduation from Monacan High School.

"At first, I thought it was a skin tag, but didn't panic until Leah's first CT-scan showed a large mass pushing against her brain that had also destroyed her mastoid bone," says Tara. "In the beginning, I didn't want to tell anyone - friends, neighbors or even my family. But then, the situation got so much worse. I sent out an e-mail that began, 'If you are so inclined to pray…' that caught on like wildfire, reaching people I didn't know in Ireland, Minnesota and Canada. With this kind of response to my prayer request, I just felt like she was going to make it."

Armed with faith and their prayer chain, newborn Leah and her parents began a journey, casting their net as far away as Boston's Massachusetts General Hospital, in search of the best medical treatment. They found what they were looking for at Children's Hospital of the King's Daughter in Norfolk, and woefully received Leah's diagnosis of a Giant Cell Reparative Granuloma - a "fluke of nature," according to Tara. "She is the only known baby in the country to be born with this condition."

Facing a parent's worst nightmare in preparing for their daughter's eight-hour brain surgery, Tara says, "We could not have done this without the help of our family or the prayers from our community."

She also credits her husband's quiet strength, reflecting upon one crucial moment when his words made all the difference. "When things were very bleak, and they had Leah's name written on one of the hospital room doors, Mark looked over and said to me, 'Did you ever notice that Leah is an anagram for HEAL? She is going to be alright, she is going to be alright.' When you are faced with an eight-hour skull base surgery, you have to believe that everything will be okay. So many of her nerves were involved, it is truly amazing that they were able to remove so much of the mass and not harm any of these nerves. We are so thankful."

Even still, Tara admits that she suffers from panic attacks and recently found another nodule behind Leah's right ear that has her worried. They also pray their daughter's hearing loss will not present lifelong challenges.

The Luck family

 

Allen Luck feels thankful even though he's lived his young 18 years of life with a rare blood disorder. "I realize that there are people with far worse stuff than me, like kids in the hospital with cancer," he says, as he recalls their faces during his many trips to the hospital. "I have Idiopathic/Immune Thrombocytopenic Purpura, a blood disorder where one's immune system attacks platelets. With significant reduction in platelets, clotting capacity is weakened, and spontaneous internal bleeding becomes a threat."

His mom, Linda, knows full well how lucky her family is to be celebrating Allen's recent high school graduation and her son's current remission from his illness. The breakthrough they needed was a new medication introduced on Mother's Day in 2003.

Her voice evokes fear as she describes her son's most difficult medical moments beginning in the third grade and progressively worsening up until the seventh grade when Allen was homebound and prescribed Prednisone, a drug that caused extreme weight gain and debilitating mood swings.

Linda likens the fact-finding mission they frantically pursued while trying to determine what was wrong with her son to "gambling." The family saw four different doctors with four different opinions, and had to make a decision on their own about which treatment to choose.

She also expresses the frustration she felt while dealing with some in her community who misunderstood her son's mysterious illness. "We could not find a teacher willing to come to our home because they were afraid of blood-borne illnesses like AIDS or that it was contagious," she says.

During the most difficult times, the family's faith got them through. "Illness brings out the worst, but very often it brings out the best we have to offer. Faith makes sense of what has no immediate answers. If you believe that everything serves a purpose, you will try to find the silver lining and grow from adversity. Church, the Bible and prayer provide a great deal of support," she says.

Like mother, like son. "My relationship with God was increased," says Allen, "and I feel a closer relationship because of seeing a miracle in my own life. I'm a regular kid now. I'm able to do everything everybody else can do - like getting plowed over during a tackle while playing varsity football to see that I could actually take the hit without [medical] repercussions. That made me feel invincible!"

The Jones family

 

Julia Jones and her family are still waiting for their miracle to arrive. The rising ninth-grader is dealing with a brain tumor caused by her battle with Neurofi bromatosis, a disease of the nervous system where the body creates benign tumors. This time though, Julia's tumor formed right in the center of her brain, leaving her no option but to hopefully shrink the tumor through chemotherapy.

"I worry about the future," says her mother, Kathy. "I worry that I'll have to take care of her [into her adult years]. I don't know what her quality of life will be."

In the meantime, the family is doing its best to enjoy summer like other families do through vacations on the Corrotoman River and Julia's mission trip with her church - all while scheduling activities around chemotherapy treatments and doctors' visits.

"If [the chemotherapy] doesn't work, then we'll have to take another route," says Kathy, with maternal concern and a little bit of fear in her voice. "I just have to have hope."