Of all the questions we have been able to answer about our son’s illness and death, there is one that has continued to plague me: how could I not have known something was wrong, that something deadly lurked in my son that would destroy him and shatter our lives? How could a mother miss the signs and signals that her own child had an aggressive blood cancer? Were we negligent somehow in missing the red flags? What were the symptoms that led to his eventual diagnosis, and could we have discovered his leukemia sooner; if so, would it have made a difference in the outcome? These are some questions I intend to process over a series of posts, beginning with the first installment, “My son is not sickly!”
Caemon was sick a lot in his last year, well before he was diagnosed with JMML. He began 2012 with a prolonged bout with pneumonia, and he was nearly hospitalized then. He went on to develop ear infections, bronchitis, hand-foot-mouth disease, and numerous colds and secondary infections over the next six months. He was sick on a road trip we took in June, and complained in early August of not feeling good. We took him to the doctor often; he had a nebulizer for his breathing difficulties (he was determined to have asthmatic tendencies), and he was on schedule for all his vaccines. He was seen for every well-child visit, and we, as his moms, always used these visits to inquire about certain aspects of his health, be it his diet, sleep habits, or anything else of concern. We noticed and asked about his loud snoring accompanied by some apnea (where the person stops breathing for a moment), but never once did anyone, including his pediatrician, ever contemplate that something was seriously wrong with Caemon.
His numerous illnesses were chalked up to typical toddler “immune building” viruses. His snoring and apnea were shrugged off by doctors. No one seemed concerned. Timaree and I began to get paranoid about taking Caemon anywhere where he might pick up germs, and began avoiding events where kids might be sick and in contact with our son. It began to feel like he was sick all the time, and I secretly wondered how normal it all really was. Sure, one of the kids in our group of moms was always sick, but never the same kid over and over. Except for Caemon, and we frequently missed Mom’s Group and other play-dates because of it. There were whispers and comments about Caemon’s delicate health, nothing harmful, but there was something that bugged me about people saying “Gosh your son sure gets sick a lot!”
“He’s not sickly, if that’s what they’re implying,” I said to Timaree. “His doctor said it’s common for them to get sick a lot at this age, especially if they’re in day care or preschool.” Except that Caemon wasn’t in daycare or preschool. I was particularly defensive about this characterization, for the simple fact that I was powerless to do anything about it. We fed him well, avoided germy places, washed his hands, emphasized good sleep habits, and took him to the doctor when he was sick. I believe we were as proactive as we could be, but the fact that he was still getting sick, and sometimes really sick, was beyond anything we could control. We tried probiotics, vitamins, herbal teas, you name it. Nothing could prepare us for what lurked beneath. I mean, who would ever imagine? What could have tipped us or his pediatrician off?