The start of the school year always brings some first day jitters for students. Will there be a lot of homework? Will my friends be in my class? For Clara Hubbard, her concerns were very different than her classmates. Clara wondered “How do I tell my friends that I now have cancer?”
Over the summer, Clara ended up in the Baystate Children’s Hospital Pediatric ICU. She spent two weeks in the hospital and was diagnosed with leukemia.
Leaving 5th grade healthy and entering 6th grade with cancer brought a lot of anxiety for both Clara and her mother, Tricia.
“Clara was super nervous to go back. She had been talking to a few of her friends over the summer but was nervous about all the friends that she hadn’t talked to,” said Tricia. “As her mother, I was also nervous about what kids would say about her hair loss and about her staying healthy as possible because she is immunocompromised,” she added.
Facing School Together
To support these fears, Clara and her child life specialist, Jon Crowder, headed into the first day of school together.
Baystate Children’s Hospital’s Child Life & Healing Arts Program offers school “re-entry visits.” During these visits, a specialist attends class with a patient who has an illness that altered their appearance or caused them to miss an extended period of time from school.
The specialist helps answer questions about what the patient is going through or why their appearance is different.
“We focus on educating about the illness, any side effects, and clarify common misconceptions, such as “Can I catch it?". We keep the conversation developmentally appropriate. ”For younger students we teach them to be everyone’s friend, no matter what they look like. For older students we talk more about the disease and give tips on how they can help, such as the importance of washing your hands”, said Jon.
This also helps the school’s staff by talking about questions that they may feel uncomfortable answering. The visiting child life specialist is there, in part, to calm other students’ fears. They share information like the fact that the child did nothing to cause the cancer, or that it is a rare illness that classmates are unlikely to get themselves.
“We also talk about the fun stuff we do together at the hospital, like watch movies or play games, so they aren’t concerned about where they are when they are missing from school,” said Jon.
Having the Conversation
Before a school visit, Jon works with the student and family to create the presentation together. They work to ensure all of their unique concerns are addressed and any information they don’t want to share is left out.
“The goal is to make the child feel as comfortable as possible with the difficult transition of going back to school,” Jon said. Clara was concerned with being bombarded with questions in the hallway. The re-entry visit gave her a chance to answer all her anticipated questions at once.
“Each child also has the choice of who they present to – their grade, class, etc. Clara wanted to talk to her whole team,” said Jon. So, Clara and Jon shared their presentation with a room full of over 100 students and staff.
“I go over the educational piece. With Clara we talked about things such as what cancer is, discussed our different blood cells, why she has hair loss, and that sometimes she may not be feeling well. We talked about getting chemo through a port and that she may need to leave her tube in sometimes. She brought in her port doll and numbing cream to show them that chemo doesn’t hurt. Respecting the patient’s privacy and avoiding oversharing, anything further than the educational component, I leave up to them to talk about unless they really want that help,” said Jon.
For Clara, it was very important to face all of the questions head on and include her personal cancer journey in the conversation. From when and how she found out, to her time in the PICU, to her treatments today, Clara bravely shared her story.
“It went really well; she left the presentation smiling and proud,” said Jon.
Creating Comfort and Confidence
Having Jon by her side brought a lot of relief for Clara. “It was nerve-racking. I’ve never talked about myself in front of so many people. I was so thankful that he was coming because then all my friends wouldn’t ask me a lot of questions. Jon could answer them,” she said.
Jon’s visit gave Tricia the comfort and confidence she needed while sending her daughter back to school. ”I was relieved that Jon would be able to explain what having leukemia means and how to help keep Clara safe and healthy, “Tricia said.
When it comes to the care and challenges of pediatric cancer, Tricia has been overwhelmed by Baystate’s support. “All the staff are super sweet and accommodating. We have had a pretty busy schedule with chemo almost daily and I am still working a full-time job. Everyone has been so helpful trying to work with us on what we need for scheduling,” she said.
Tricia went on to say that Jon was “phenomenal,” always checking to see what he can do to make Clara feel more comfortable and to help occupy her when she was getting treatment.
Our experience in the Baystate Children’s Hospital Oncology department has been nothing but amazing.
Learn more about the Baystate Health Child Life & Healing Arts Program.