Kassidy Koch knows where to find fun on the Bethesda campus of the National Institutes of Health while she is waiting for her sister to finish blood work or scans.
She spends much of her time in the playroom at The Children’s Inn on the campus, but she also knows all the clinical center’s nurses and chats with them whenever she has to tag along to the hospital.
For as long as she can remember, Kassidy, 10, has been making regular trips from her home in Indiana to NIH, where her older sister Carly, 18, is being treated for a genetic immune disorder.
Kassidy understands what goes on when Carly disappears into an NIH Clinical Center exam room. But some of what goes on — especially the sight of blood and the thought of a needle pricking her sister’s arm to get to a vein — still makes her queasy.
“She says it doesn’t hurt,” Kassidy said. “But I know it does.”
Kassidy’s least favorite medical procedure (performed on a plastic patient) was among the demonstrations included July 19 in the clinical center’s Sibling Day, an event was for a group of about a dozen children who are the brothers and sisters of NIH’s youngest patients. The event gave the siblings a peek into the medical procedures their brothers and sisters go through, while also pampering the children who often take a back seat to their sick family members.
“A day designated to the brothers and sisters sends the message that it’s OK to have their own needs and worries,” said Lori Wiener, the head of the National Cancer Institute’s psychosocial support and research program. “Many times they feel their needs and worries pale in comparison to their sick brother or sister.”
Often the families of children with chronic or life-threatening illnesss are so focused on the needs of the sick child that they are less attentive to the needs of healthy children, Wiener said. So at the center’s fourth Sibling Day, those children were the center of attention. They made art projects, played games and talked about their feelings — not about how their brother or sister is doing. They dressed in operating room robes, volunteered for a mock MRI scan and learned about how doctors analyze blood and parasite samples.
Jamie Hahn, a medical technician who analyzes bone marrow and tissue samples at NIH, pointed out the shapes of sickle cells on a projection screen over her table, set up like a science fair display with diagrams of blood cells.
“Red blood cells — see how they’re shaped kind of like doughnuts or inner tubes?” Hahn asked the children, who were dressed in pale blue dressing gowns. “The bad ones aren’t like doughnuts.” Those, she said, are more like bananas or squash.
Explaining to children what happens when a doctor swabs a mouth, takes pictures of a brain or draws blood helps children become more comfortable and less afraid of the procedures, Hahn said. For example, the children learned that to draw blood, first the patient’s upper arm is bound with a rubber strap, then the area with the vein is disinfected, and then a needle draws the blood, which is released into a labeled vial.
“I imagine in their experience, a lot of time is spent in hospitals. If they can understand what’s going on, it could inspire them instead of having a negative impact,” she said.
Arthur Knopfmacher, 11, of Woodbine has spent many hours in hospitals waiting for his sister to get treatments. He said that at first he was scared by the treatments his sister endured as doctors attempted to rid her of cancer. He opted for the playroom over the hospital’s waiting area in an attempt to put the procedures out of his mind.
Now, he wants to be a medical researcher or scientist.
“Once I learned about everything going on, I got interested,” Arthur said.
Arthur said he had seen all the Sibling Day demonstrations twice before, but he personally phoned the event’s organizers to ask if he could attend again this year — he thought he should get permission, considering his sister has been free of cancer for five years and he no longer qualifies as a bona fide clinical center sibling.
“This is just really fun,” Arthur said.
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