Accepting reality

July 10, 2017

After finishing the dreaded Delayed Intensification cycle, Calum took every last minute of his two-week vacation from chemo to recover. Slowly, but surely, a hint of pink returned to his cheeks, and there is a noticeable pep back in his step. Seeing him return to his old self is so joyful, yet equally makes you a little sad realizing how shitty he must have been feeling over the last couple months.

Today was Calum’s second round of treatment of his latest cycle and, thus far, he is holding up great. He was given two chemotherapy drugs through his port this morning. Seeing him during this cycle stands in such stark contrast to the end of his last cycle that, even though his blood counts are much lower than a typical, healthy three-year-old, he is so much stronger now.

We were accompanied today by my dad and, on the ride home, while Calum was sleeping soundly in the back, we discussed what it is like being on a pediatric oncology floor. I don’t want to say it has become routine, but the misfortune of being there is rarely at the forefront of my mind. Outside of  the context  of the hospital, however, I realize, he clearly looks like a very sick child. Relativity is a powerful thing. I am far more conscious of Calum’s pale skin and bald head in public places while surrounded by healthy looking children, and am constantly wondering what other people think when they see him. Prior to Calum’s diagnosis, I have felt so saddened on the rare occasion of seeing a child who was sick with cancer, and would wonder their fate. The sight of them scared me. I think seeing children with cancer is a reminder of the fact that horrible things can happen in life, and I never wanted to fathom the horror of what cancer would be like to endure for the child or the parents. I feel incredibly protective over Calum now, and I am still learning to accept this disease as a piece of his identity without fear or self-consciousness that people will perceive him as sick or, God-forbid, weak.

I imagine that people who only know me peripherally must be wondering what is going through my mind on a day-to-day basis. I am defensive of people making assumptions about how I might be feeling. It is very hard coming to terms with the way our lives have changed at times. It is a painful process to reimagine your life from what you had envisioned. Not a day has passed where I haven’t thought about Calum’s cancer at least once an hour. I want Calum to be in school and I want not to worry about other children being around him and making him sick. I want the worry of the risk of a life-threatening infection to go away. I want to live life with confidence again, or at least have the courage to know that I can handle what live will throw at me. Most of all I want everyone to know that Calum is not just a child battling cancer, but that he is a person with most exceptionally kind and gentle way, andIMG_0541

Scars from Calum’s operations and port placement.

with the will and strength of a warrior. When Calum is about to endure something at the hospital he is afraid of, I coach him exactly as I would an adult; matter of fact and firm in my belief that he will be fine. It is hard on both of us, but I watch him accept my explanations and clench my hands without a tear shed as he handles the pain. To be sure, there are many hard parts of this process but, overwhelmingly, we are happy and grateful to have such a bad ass child. #gocalumgo

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