Family grateful for hefty donation to Children’s Mercy

Children’s Mercy Hospitals and Clinics, based in Kansas City, was recently notified of a $43 million donation pledge from the Hall Family Foundation. The money will be used for the first phase of the Children’s Mercy 15-year expansion plan.

That plan will more than double its physical size on Hospital Hill and increase the number of its inpatient beds by 50 percent. Phase 1, which will begin soon, includes an expanded emergency room, two more operating rooms, two new heart catheterization labs and a second MRI. Also, an 8-story building atop a parking garage at the north edge of the hospital property at 23rd and Gillham Road will be one of the most striking parts of the expansion.

One local family, Scott and Emily Lone and their daughter, Bethany, is extremely excited to hear about the expansion, as they use the hospital.

“This is exciting to hear. One of the unfortunate circumstances of the hospital was that at times, kids without cancer were put on the oncology floor due to space issues,” said Scott.

Bethany was born with Acute Myelogenous Leukemia (AML).

“This would require them to be moved frequently if a patient with cancer needed to be admitted to the floor,” said Scott. “If no other empty rooms were available, the patient without cancer would be moved to another floor. Extra rooms would reduce this inconvenience for the patients and their families who were moved frequently.
Additionally, it gives more families a chance to receive help from such an educated group of physicians and staff, and thus they may be able to receive the life saving treatment they need, just like Bethany did.”

Children’s Mercy Hospitals and Clinics is one of the country’s premiere free-standing independent pediatric medical centers with 314 licensed beds, more than 40 pediatric subspecialty clinics, a Level IIIc intensive care nursery and the only Level I pediatric trauma center between St. Louis and Denver. The medical staff of more than 400 pediatric subspecialists is one of the largest in the country and is actively involved in clinical care, pediatric research, and educating the next generation of pediatric specialists.

Lone said that it was not clear at first that Bethany, who was born on Dec. 21, 2006, had AML. 

“She had several tumors on her body at birth, and the doctors at St. John's were not completely sure what the cause was,” Scott said. “She was flown to Children's Mercy only seven hours after being born and after biopsies of two of the spots, and a bone marrow test, she was diagnosed with AML on Dec. 26, 2006. One doctor stated the chances of being born with this type of AML with these symptoms is about one in five million. She was declared in remission on Feb. 16, 2007, then had a reoccurrence and she began receiving chemotherapy treatments on May 21, 2007.  She was again declared in remission on June 28, 2007, and then completely free of leukemia on Aug. 13, 2007.  She received her final treatment on Jan. 9, 2008, and came home for the final time on Feb. 12.  In all, she has spent 155 days at Children's Mercy. That includes her NICU stay when she was born, and then five rounds of chemo, (each of varying length) and then stays while her immune system recovered so she was not as prone to infection.  Due to her decreased immune system, she has had to be kept in a sort of isolation, and is unable to be in public.”

Bethany has to go for monthly checkups and blood tests. And according to Scott, this will decrease as time passes and her check-ups continue to be normal. The blood work is to track the leukemia, as well as developmental assessments to make sure she continues to be on par with the other kids her age. Bethany continues to do really well, her father said.

“Every aspect of her development seems to be in line with a normal 14-month-old, except for the road she took to get there,” Scott said. “She still has a Hickman catheter (a line used to deliver chemo directly into her blood system), but that hopefully will get taken out this Thursday.”

If all goes to plan, Scott said the next step is to re-integrating her into society and start living life like most toddlers.

The Lones are pleased with the care given to them by the hospital.

“Extremely pleased, there was never a moment were we doubted the care we were receiving,” Scott said. “Our confidence in the doctors, nurses and other staff never strayed, and we would highly recommend Children's Mercy to any family with a sick child. Each of the rooms on the oncology floor have a parent bed in the room, so a parent is able to stay with their child the entire time. Emily especially became close to the nurses on 4 Henson, the oncology floor, as she spent every day with Bethany. The nurses and Care Assistants were more than willing to watch Bethany while we took a walk, went to church, or try to do some other activity to get a break from hospital life.
Additionally their Child Life program provided arts and crafts, or music time each day, to help make memories of the experience. Child Life also provided parties celebrating each patients birthdays as well as their discharge from their final round of chemo. The social workers also played a huge role by connecting us with financial and emotional support groups, arranging lodging at the Ronald McDonald House and assisting with refunds for planned vacations which needed to be canceled.”

Scott and Emily said they would like to thank not only the hospital, but also others.

“We would not have made it this far on this journey without such a great support system,” the couple said in an e-mail to the Neosho Daily News. “We would like to thank our family, friends, church, Children's Miracle Network and the Ronald McDonald House for their assistance during this long journey. Even though a hospital is not where you want to spend nearly half of your child's first year of life, we could not have thought of a better place to be.”