What the Holidays Felt Like During Noah’s Treatment
I still remember the first Christmas holiday we spent as a cancer family after Noah was diagnosed in April 2021.
Noah was receiving immunotherapy which is a very hard treatment to go through. The treatment involves attacking the pain receptors, which causes excruciating pain. The treatment is typically inpatient for 5-6 days, but, thankfully, our medical team managed to get us home for Christmas.
Noah woke up early to open presents under the tree and still smiled a lot that day because of the pretend kitchen set he received.
It’s a memory I will never forget.
Spending the holidays while Noah was in treatment was unlike anything I ever imagined. What normally is a season filled with warmth and family gatherings, instead felt isolating and detached from the world. It was surreal to see everyone else’s lives keep moving, only emphasized by social media, on which we saw celebrations, traditions, and seemingly busy schedules… whereas ours stood still inside a hospital room where we were fighting for Noah’s life. A “normal busy” holiday season for one family was the polar opposite of ours. Our whole life revolved around appointments, inpatient hospital stays, emergency room visits…
…that was our “busy” holiday season.
Life is meant to be defined by these moments and indeed ours was but not in the way we had planned.
It’s crazy how quickly life can change.
To be honest, Noah didn’t know any different. He had been dealing with treatments most of his life. Even when we weren’t inpatient in the hospital the day of Thanksgiving, Christmas, or New Years Day, we were always at appointments the day before/after/weeks, etc. to check his blood counts, undergo treatments, and in general, it felt like we were always there. Coupled to that, there was a general sense of unpredictability regarding him being inpatient due to a fever that could come anytime which would land us in the ER and inpatient for who knows how long.
That feeling of pure survival becomes paramount and overshadows any other priorities in life.
In his sweet innocence, Noah always found joy in the small moments he could within the hospital walls. But, as a family, we couldn’t go to gatherings or feel any sense of “normal.” Noah was immunocompromised, and every decision revolved around protecting him. We watched holidays happen from the outside, unable to participate, unable to be around others, unable to escape the heaviness of what we were living through. Personally, I experienced emotions of anger and bitterness on top of feelings of guilt for not being grateful for what we had.
There were moments we felt forgotten.
Not that anyone was doing it intentionally but just the fact that life outside childhood cancer keeps moving at its normal pace while yours pauses in place. And during the holidays, that contrast feels even sharper. The weight of it all made everything feel heavier and unfair, as if we were living in a different world from everyone else.
Those seasons taught us how fragile and precious time is… and how deeply families walking this road need to feel remembered, supported, and held. That’s why we formed the Noah Lee Legacy Foundation, to ensure that each of these families would know they aren’t forgotten and there are people out there who get it.
