As a specialist in the hematology/oncology unit, Kaylee does new diagnosis education and preparation for procedures such as port placements, PICC lines, and chemotherapy. She also provides support if a patient needs a PICC line insertion without sedation. Many Comer’s patients are long-term stays, including some who are there to receive stem cell transplants. These kids often stay for months, and Kaylee makes their rooms feel more like home, with special sheets, decorations, and toys. She also works to support school reentry by educating the patient’s peers about the symptoms and side effects of chemotherapy.
Comer’s provides MIBG (metaiodobenzylguanidine) therapy for neuroblastoma and is one of only around ten hospitals in the country to provide this treatment. MIBG is combined with radioactive iodine to deliver targeted radiation therapy. Patients who receive MIBG treatment need be isolated for a period of time after treatment because they are radioactive. Comer’s has lead-lined rooms for this purpose, and patients stay alone in the room for a couple of days to a week. On average, there is one child a month receiving this type of treatment and subsequent isolation.
Kaylee and her team use a child-friendly prep book with lots of photos to explain how the MIBG medicine targets tumors using radiation and why the radiation means isolation is required for several days after the treatment.
The rooms are not naturally inviting or comforting, but Kaylee and her team work hard to personalize them. All items must be thrown out after the patient has completed the treatment because of the radiation, so patients are advised to bring nothing with them. Instead, Kaylee orders their favorite toys, art supplies, and bedding. Kaylee and her team even load their favorite games on the iPad. Kids spend one night in the room before treatment to become familiar with the set up and to decorate the floor, which is covered in white paper. After the treatment, the child is bedridden with a catheter, so all decoration and exploration needs to happen beforehand.
Caregivers are in a nearby room and can communicate with walkie talkies and Facetime loaded on iPads. Baby monitors are also available, so parents and family members can see the room whenever they wish. There’s a small anteroom where certain people, such as the music therapist, can stand with appropriate PPE.
For older kids, although isolation is appropriately difficult, there is also the excitement of brand-new toys and personalized decor and technology. Some kids really enjoy being able to draw on the floor, something that’s not usually allowed. Kaylee says the whole process “doesn’t seem as daunting when they’re prepared in the right way.” Children under the age of three are treated in the PICU and are sedated for most of the treatment. Kaylee and her team support these younger patients in similar ways by ordering bedside toys and supporting caregivers by providing emotional support and baby monitors and other technology to facilitate communication.
The first twenty-four hours after radiation treatment are the most critical, and once the radiation diminishes, caregivers wearing radiation measurement devices and trained in the appropriate use of PPE can safely sit in the room. Kaylee supports the family as much as the patient, because it's difficult for parents to be separated from their child and unable to comfort them in person.