Two years ago today, was the first of many MRIs that Dylan has had. Although the results were not at all expected and completely shocking I am grateful every day that he had that first mri, the one that eventually led us here, past surgeries, radiation, chemotherapy, a multitude of test, procedures and medications to NED (no evidence of disease).
This first one, the shortest of the three he would have that week, lasting only about 40 minutes, done locally, quite a causal experience really, that is until the phone rang and I was sitting in front of the doctor getting delivered the shocking results. The next one would be two hours long and done in RCH after presenting at emergency, little random spots of his hair shaved to place electronic probes on prior to the mri, this one to prepare him for emergency lifesaving brain surgery. The following mri would be done within 24 hours of brain surgery, to check the success of surgery before the brain swelled too much, when he was in extreme pain, was still unable to move, talk or swallow. The hour long MRIs following these initial three are done regularly to monitor him and will continue for the rest of his life.
This lifelong monitoring comes partly due to this original diagnosis, but also due to the treatment he had and it’s horrific list of potential side effects. This list is what terrifies parents when signing the treatment plans for their children, to choose something that may possibly help alleviate your child of suffering in the present, possibly save their life, knowing that this same choice comes with the potential to create lifelong suffering, even be the cause of their death, it’s terrifying, but necessary and it changes you.
My reflections, my opinions, my experiences I share not for sympathy but purely for awareness, so that someone who is fortunate enough to not experience this with their child, grandchild, friend, or family member may understand why people advocate so hard for funding for research for better treatments for children diagnosed with cancer.
So that the next child to be diagnosed will have less side effects from the treatment that cures them so that they may live a life of good health, something we so often take for granted.
Mri number 12 will be done in July.