March 30, 2017

So, we are two treatments into the latest cycle and, thus far, Calum has not complained of feeling sick, which hopefully means he is feeling relatively well. Deciphering information from a three-year-old, for me, is like trying to understand someone speaking Spanish. I heard the words and I understood a lot of them, but have no fucking clue what they’re talking about. For the most part, I am more confused about how Calum is feeling after talking with him than I was before I asked. For example, the simple question, “Calum, how does your tummy feel?” can elicit such a response as, “Good. Except when it hurt the other day later when it was Halloween after I was playing dinosaurs.” Then I usually squint one eye and take another sip of wine.

This week will be our first without any scheduled hospital visits since, this cycle, Calum’s treatments are ten days apart. He’s doing well and his blood counts are good, so they don’t need to see him for a check-up in between chemo. If we make it through without a fever it would be our longest stretch away from the hospital in three months. At this point, I am borderline uncomfortable with so much time away from the hospital. I realized on Friday afternoon that we have spent all of 2017’s major holidays at the hospital; New Year’s, Valentine’s Day and St. Patrick’s Day. Through this unexpected turn of events, I have found, quite an ironically, great solace in being at the hospital. When we are there, I am not the person in charge of Calum’s medical needs. I am there, but I am “off the clock” so to speak. I feel safe, and I will get more information about where we are with the process; information that I desperately crave; answers to many of the questions that race through my mind and keep me awake at night.

Calum’s disposition continues to astound me. On our visit Friday, he was watching a YouTube of the top ten most amazing spiders when the nurse came over to get his blood work and access his port. She sweetly asked him, as all the nurses do, “Can I lift up your shirt so I can connect your tubies?” Calum replied, “Well, I’m watching a video about spiders right now.” The nurse then proceeded to tell him that she was afraid of spiders, so he asked her, “Why?” She explained she doesn’t like spiders because they are creepy crawly and they bite. Calum softly replied, “But, they make such beautiful webs.” As my young boy so astutely reminded us, we will continue to appreciate the underlying beauty in the things that scare us.