Planning the Return to School

Very recently we received the thumbs up from Benjamin's medical team that he could return to school. This news took us by surprise given that his cancer mass had not decreased enough for him to be able to graduate to the next phase of treatment, meaning that his immune system is still very much considered to be deficient.

When the news from the Ontario government came that the mask mandate was going to be lifted in schools we double checked whether this would impact Benjamin's ability to return to school. Once again, the doctor gave us the green light.

While anxiety-inducing from a health perspective, with COVID still very much out there and masks becoming optional, this was really good news from a mental health and developmental perspective. Benjamin is highly social and truly enjoys learning and so he'd very much been missing his friends, teachers and the sense of normalcy that going to school affords.

The obvious questions arose. How do we do this? How to we re-introduce him to life as a student? How do we prepare him for questions he might get from his classmates? How do we prepare the faculty for his return? How do we balance minimizing risks he could face with maximizing the opportunity of a positive return-to-school experience? And so many, many, MANY more.

We feel beyond lucky that we were assigned an amazing POGO nurse who had been wonderfully supportive and helpful throughout this process. She and I had a meeting to discuss what his re-entry would look like, things for David and I to consider and discuss and she recommended setting up a virtual meeting that she would lead and to include Benjamin's teacher and his VP. She walked me through what information she would cover in that meeting and what role I would play.

Even though it was their March break, Benjamin's teacher and his VP were more than willing to join the meeting. His teacher even called in from her vacation in Florida. Both of them showed up with big hearts, kind faces and thoughtful questions in addition to their notebooks and pens, despite our POGO nurse assuring them she would be sending them all of the information.

One item on the agenda was about an editable templated letter that our POGO nurse would be forwarding to Benjamin's VP to send to the parents of his classmates. The purpose of the letter letter was to inform them that one of their child's classmates is immunocompromised and that should their child contract or be in close contact with anyone with measles, mumps or chicken pox that they are to inform the school right away so that the school can inform us. While Benjamin has been vaccinated, he is at Sick Kids for appointments on a weekly basis and we would have to be isolated in order to protect other patients from possible exposure.

One of the ideas that cropped up in our discussion about modifying the letter was to have David and I write a blurb that would be included. We also discussed the use of the word 'cancer'. I explained that David and I had not yet used that word with Benjamin. While only four he is extremely sensitive, perceptive and smart. He knows that his Bumpa (David's dad) passed away from cancer. He is also very familiar with the Terry Fox story as our family has one of the longest running dedication teams and has participated in the run for the past twenty-two years.

Had Benjamin not had any context to the word 'cancer' we'd have used it in our ongoing discussions with him but because of what that word means to him, amputation and death, we were hesitant to do so. The last thing we want for him is to feel any sort of fear on top of everything else.

That night David and I talked about this at length. It was a conversation neither of us ever expected, much less wanted, to ever have. We started out with a difference of opinion which felt heavy, especially with time ticking on. There were only four days until Benjamin would start back at school. We knew if we decided to use the word 'cancer' we had to figure out how and when we were going to share that information with Benjamin, we had to prepare ourselves for any type of reaction he might have, we had to anticipate what his questions might be and how we might answer them, we had to inform the faculty of his school and we had to write the letter to the parents of his classmates. To say that making this decision was daunting and overwhelming would be an understatement.

Eventually we came to the conclusion that if we didn't use 'cancer' in our discussions with him at home, that it was possible that someone else might. We felt that by being the ones to first use the word with him that we could control the narrative, that we would build trust with him and that we would be the ones to love and support him and to answer his questions no matter how he took the news.

With our decision made I started by researching children's books about childhood cancer. There are not too many to begin with and even fewer that closely matched Benjamin's experience. I finally landed on one called 'When a Kid Like Me Fights Cancer'. Two days later, on the day we decided we would have the conversation with Benjamin, it arrived on our doorstep. David and I read it cover to cover and were surprised at how relatable it was to Benjamin's journey thus far aside from three lines which we decided to omit when reading it to him.

That night, once Ella had gone to sleep, we curled up in Benjamin's single bed and read the story about a brave little boy who was fighting cancer. When we finished we calmly and matter-of-factly asked Benjamin if he knew that LCH was a type of cancer. He was surprised at first but not at all upset. He didn't draw any parallels to his Bumpa or to Terry Fox. We asked him if he had any questions and in his happy-go-lucky tone he said that he didn't. I then asked him if he'd like to show Daddy how to play 'Interview'. It's a silly game that I'd made up for the sole purpose of preparing him for any questions his classmates might ask him about his LCH when he went back to school.

This is the recording of our first 'interview', taken just after reading his new book and introducing him to the idea that LCH is a type of cancer:

Listening to him clearly articulate his understanding of what's going on inside his body is truly amazing to me but what's more is the tonality he has in doing so. Calm, serene, matter-of-fact.

After a long snuggle and saying goodnight, David and I walked into our closet, the part of our bedroom that Benjamin can't see when both doors are open. We hugged with relief. We'd been anticipating a much more difficult conversation with a reaction that would have been heartbreaking. We should have had more faith in our brave little superhero.

The next day I wrote the letter to the parents of Benjamin's classmates. As I hit 'send' a wave of relief washed over me. The weight of the decision of whether or not to label Benjamin's illness as cancer to him and the lead-up to doing so had lightened considerably. While naturally anxious about his return in terms of matters related to his weakened immune system, the rest of this next step felt like a positive one, the right one for Benjamin and his overall well-being.