Kelsey Thompson, here at Christmas with her cousin Noah, is among those who would benefit from an expanded immunosuppression area in the new Vanderbilt Children’s Hospital.
Breathing space: New VCH to include special zone to give immunosuppressed kids room to roam
If Kelsey Thompson were home, two hours away in Marion, Ky., she would be practicing with her Little League cheerleading squad, gearing up for soccer and softball, and surrounding herself with friends.
But sometimes life has other plans.
Ten-year-old Kelsey has Acute Myelogenous Leukemia and has spent more than 150 days since July 1998 in a room on the fifth floor pediatric myelosuppression unit of Vanderbilt Children's Hospital. She is unable to leave her room that is specially filtered to minimize germs.
For a leukemia patient, germs that float through normal, everyday air can be fatal. So it is necessary to have a special type of filtration, HEPA (High Efficiency Particulate Air)-filtration, in each myelosuppression room. The filtration system makes sure that the air circulated throughout the rest of the hospital doesn't come into the filtered areas. Its tiny holes filter out the bigger particles, like mold and fungi. Patients who are immunosuppressed for long periods of time are more susceptible to getting fungal infections, which can be life threatening. But in the current pediatric unit, the HEPA-filtration goes no further than the rooms.
Expanded HEPA-filtration is one of the many improvements that the planned new Vanderbilt Children's Hospital will offer patients in the Middle Tennessee and southern Kentucky region. Ground will be broken this spring for the new 9-floor, 206-bed freestanding facility, if the state's Health Facilities Commission grants a Certificate of Need.
A 12-bed Myelosuppression cluster will be one of three, 12-bed clusters on the sixth floor of the new hospital.
The entire section of the floor will be HEPA-filtered so that patients can move about in the hallways, a playroom, and a family area without leaving the protected environment.
Children undergoing stem cell/bone marrow transplantation or receiving intensive care for acute leukemia are at a significantly increased risk for acquiring bacterial and fungal infections, said Dr. James A. Whitlock, Craig-Weaver Chair in Pediatrics and director of Pediatric Hematology-Oncology.
The HEPA-filtered environment has been shown to significantly decrease the risk of infectious complications in these patients while their immune systems are recovering from the effects of treatment.
Dr. Haydar A. Frangoul, assistant professor of Pediatrics, said that patients who have had bone marrow transplants are essentially like newborns with "uneducated" immune systems. Simple viruses like flu can be fatal, so being away from normal hospital traffic is important.
Kelsey, who is now waiting to be well enough for a bone marrow transplant at VCH, spends most days in her room with her mother, Kathy. Thompson stays at VCH during the week while her husband, Larry, remains home with their other two children — Jay, 14, and Lindsay, 18. She drives home to Marion late every Friday night, when her husband comes to relieve her for the weekend. Then she returns to VCH late Sunday afternoon.
"Our whole life has shut down, but it's been hardest on Kelsey. She's very outgoing and independent. It's awfully hard to be so isolated, all the time. It's hard enough fighting the cancer," she said.
"Kelsey was in one room for 37 days without being able to come out. They even had to bring in the X-ray machine because they didn't want to take her out of the room. That's hard."
When she's feeling well enough, the fifth grader has school in her room with Chris Gray, the Vanderbilt Children's Hospital teacher. On good days she is learning how to latch hook and works word puzzles and other activity books, gifts from people in her community who have rallied around the family. She also has daily visits from Child Life specialists who play games with her.
"The Child Life specialists and volunteers are so important for this patient population," said Becky Manes, R.N., nurse for the pediatric bone marrow transplant program. "They bring the playroom to the patients. It is their only escape, even if it's not out of the room."
Kelsey was diagnosed with AML in July 1998 and spent 101 days at VCH from July until December 1998. In November 1999, during a visit to Vanderbilt to find out why her platelet count was low, the family was told that she had relapsed.
She is in the third week of this stay at VCH. They will stay here until her blood counts are at a high enough level that she can go home.
One night, while her blood counts were at a good level, Kelsey and a fellow AML patient put on masks and got to visit the playroom while it wasn't crowded with other children.
"They played games and had so much fun. It was a wonderful night. It means everything to these patients to be able to come out of their rooms," Thompson said.
Whitlock said he believes the flexibility of the unit in the new hospital will aid in the children's recovery.
"Although we are fortunate to have a series of HEPA-filtered rooms on 5 South in the current Vanderbilt Children's Hospital, the patients and their families, to some extent, are literally trapped in these rooms for weeks at a time. They are not able to exercise or be as active as they could be, which may slow their recovery. This forced isolation can contribute to feelings of depression and hopelessness."
While the Pediatric Myelosuppression unit was being remodeled last summer, some of the patients were housed in the adult Myelosuppression unit on the 11th floor of Vanderbilt University Hospital. The entire adult unit is HEPA-filtered, allowing patients to safely leave their rooms.
"Our patients who have had the opportunity to experience both units greatly appreciated the freedom of 11-North," Whitlock said. "We look forward to providing an even greater level of freedom for these patients in the new hospital," he said.
Meanwhile, daily planning continues for the new hospital, being designed by Earl Swensson and Associates. There are 28 design committees involved in the planning process.
An intensive fundraising effort, begun in 1999 and led by Monroe Carell, Jr., chairman and chief executive officer of Central Parking Corp., and his wife, Ann, is raising $50 million to be applied toward the cost.
Meanwhile, Kelsey Thompson waits at VCH as testing of possible bone marrow donors continues. Currently, they have not found a suitable donor.
Her siblings match each other, but not Kelsey.
"It's depressing for all of us, but we made it through the first time and she got well. I thought she would be so angry when we found out she had relapsed, but she took it better than we did. She has a strong faith in God and a good attitude.
“My husband and I were just devastated when we found out she had relapsed in November. We were crying and it was Kelsey who told us to stop crying. She said we needed to call her grandparents and we shouldn't be crying. That's just the way she is."