Little Lucy Cunningham has been through more painful medical treatments in the last two months than many experience in a lifetime.
Lucy was diagnosed with leukemia in August. She’ll be 4 years old Monday.
The diagnosis, and the subsequent daily trips to Madison, the hospital stays and treatments that can be excruciating, has sent the Reedsburg family reeling, scared and understandably angry at times.
Her already very protective brothers Kip, who is 12, and Cade, who is 9, have kicked into high gear and help as much as they can with Lucy.
“She already has Down syndrome,” Lucy’s mom Clarissa said. “Why her? She is the most mild-mannered kid. She has hardly cried a day in her life.”
Until two months ago, that is.
Her sudden symptoms indicated a preliminary conclusion that Lucy may have Lyme disease.
Clarissa said they thought she had hurt her arms somehow because she couldn’t stand to have them touched and would hold her arms at her elbows.
“After 10 days on an antibiotic, she was getting worse,” Clarissa said. “We took her into the Reedsburg emergency room and Dr. (Gary) Anderson sat down by me and told me she is more at risk for certain types of leukemia, and ‘we want to get you ready for that.’”
That week, Lucy had two blood transfusions. Her parents were told it probably only took a month for one defective blood cell to start a chain reaction that left her bone marrow with 90 percent leukemia.
Lucy was sedated during chemotherapy treatments injected into her spinal fluids.
“She looked gray and had no personality,” Clarissa said. “It was like she was looking right through you.”
That’s difficult to take from a little girl who smiles constantly, chatters, has infectious laughter and fills an entire room with light.
Clarissa said much of that went away, especially during 14 days in the hospital spent being poked and prodded with needles and medications that continue to make Lucy sick.
But even all that could not completely diminish Lucy’s light-hearted spirit.
“She would hold up her arms and tell the doctors and nurses, ‘tough, tough,’” Clarissa said. “When she was in so much pain she would thank all the nurses and doctors in sign language by putting her fingers to her chin and then in an outward motion. That means ‘thank you’.”
A steroid regimen resulted in Lucy getting diabetes. Her fingers had to be pricked six to eight times a day for testing her blood sugar levels. She needed insulin four or five times a day.
Other medications gave her higher-than-normal blood pressure, and she needed additional medication to control that.
The steroids induced a constant hunger. There were nights she clung to the refrigerator screaming for food. She is off the steroids now, but will have to go back on them just in time for Christmas.
Lucy had surgery last Tuesday to insert a port into her chest to accept future medications and blood draws.
Clarissa said the initial treatment with all its intensity and pain seemed to have been successful.
“In the first month, they try to knock out all the stuff in the bone marrow that’s making the leukemia cells,” Clarissa said. “They did a great job because it’s under control. The cancer isn’t gone, but they got it shut down and under control. If you do that well in the first month, it means her body is responding well to the chemo.”
Understandably, all this has taken a toll on Brian and Clarissa Cunningham.
Clarissa asked the doctors when they could expect to get back to normal.
“The doctors just say, ‘I’m sorry. This is your new normal. It’s not ever going to go back to what it was.’ We’ve had a lot of tears, worry and not sleeping. It was just so intense. But the prayers from other people are working. We have a sense of settling down now and knowing things just happen in life and we’re at an OK place right now.”
Clarissa said the trips to Madison and the long stays in the hospital made it virtually impossible for her to continue her cleaning services to a number of clients. She had to give it up.
They have insurance through Brian’s job as deputy director with Sauk County’s Conservation, Planning and Zoning department.
But the unforeseen added expenses such as high gas prices for their almost daily trips to the hospital and the loss of one household income makes the costs of having a sick child add up.
“Ever since she was born, I’ve had a talk with God and I said I can do this as long as you put people in my life to surround me,” Clarissa said.
Apparently, she got what she asked for. She said her family has derived their strength from some overwhelming generosity in the community.
“It’s very humbling and it makes you appreciate what you do have,” Clarissa said. “There’s this whole different kind of grace that comes from something like this.”
Everywhere she goes, Lucy seems to have fans.
About 300 people showed up at Club 33 a few weeks ago for a benefit in her honor. They raised more money than Clarissa made at her cleaning jobs in two years.
Her fan club is known as Lucy’s Fight Club, and they wore orange and white T-shirts and orange bracelets in to bring attention to leukemia awareness.
This Saturday, during Reedsburg’s Harvest Festival, the Viking Village Food store is having a bake sale to help the Cunninghams.
Customers are being asked to bake something and bring it to the store beginning at 8 a.m. to sell. Proceeds will be donated to the Cunninghams. The bake sale lasts until 4 p.m.
The Reedsburg Area High School girls volleyball team is having an “I Love Lucy” night at their game Tuesday against Portage.
“Our game against Portage is an orange-out for leukemia in honor of Lucy,” coach Tina Moritz said. “The team has sold over 250 ‘I Love Lucy’ shirts. We’ve asked everyone to wear their shirts to the game.”
Clarissa said the families in her son’s baseball and hockey leagues have become like members of the family.
Lucy can’t even go grocery shopping without being accosted by her fans.
“She’s like a little celebrity there,” Clarissa said. When we go to the grocery store the people who work there all pick her up and play with her. They hold her while they’re scanning my groceries. She gives everybody hugs and pats on the back. We’re starting to see some of her personality come back.”