Here’s the second picture for Childhood Cancer Awareness Month.
After 5 days in the hospital, we had a cancer diagnosis of Neuroblastoma but not the stage. We were trying to wrap our minds around this new central venous line (permanent IV in his chest) and a child that was healing from a major abdominal biopsy, while being a very active budding toddler.
Jackson’s stomach was so swollen from surgery and seemed to get bigger by the day – knowing there was cancer in there and watching his stomach grow without a course of action made everything I ate taste like dust or get stuck in my throat. Everett and I couldn’t even function to turn on the TV. It seemed stupid, trivial. Jackson’s cancer took all the color out of our world.
Not knowing much about pediatric cancer, we were learning a full diagnosis takes time. We still needed more tests/scans done to confirm whether Jackson was high risk or low risk, which had completely different treatments, and just where his cancer had spread. Not knowing what we were truly facing made me feel like ripping my hair out. I needed answers and I needed them NOW. We were truly lucky when the oncologist mentioned a weekend reprieve from the hospital before getting admitted for the additional tests and beginning chemo. We were packing before he left the room. The idea of home had never felt so good.
But once we were back in our normal home — it wasn’t normal anymore. We watched Jackson’s every move and catered to his every need. One of our biggest initial caregiver challenge was how to bathe our 13-month-old. Ev and I knew Jackson LIVED for his bedtime bath, but how do we keep that same experience without getting his line wet or exerting himself after surgery?
This is a snapshot of that moment in time.
What you see in this picture is creative parental desperation. We wrapped Jackson in leftover Valentine’s Day saran wrap in an effort to make bathtime as fun and ordinary as possible. While Jackson and I played in the tub, Ev researched, found and ordered a new product called an AquaGuard. It served as a saving grace over the next 15 months of treatment for us.
This snapshot holds many emotions for me. It also signifies the very beginning of a different partnership between Everett and I: finding our roles and strengths as caregivers.