By the McLean’s, Louisville, KY
Looking back, it is safe to say before our journey with neuroblastoma in our 3 yr. old son Nathan, we thought we were a perfectly average middle class family working through all the normal challenges of raising three happy, healthy children. And then one winter Nathan started having mild fevers with no other real symptoms, about every 4-6 weeks. One episode landed him in the hospital with a limp at the same time. A week or two later we received our devastating diagnosis: stage 4 neuroblastoma, large tumor on his right adrenal gland, and the cancer had spread to his skull, femurs and everywhere in between. Our son was really, really sick, and we his parents were really scared. We began thinking about nothing else but when his chemotherapy could be started.
The first 6 rounds of chemotherapy Nathan had, combined with his surgeries, did their job on the bulk of his cancer. We headed into our first stem cell transplant with just a little neuroblastoma left including the cancer still in his bone marrow. Transplant was a tough deal for us, but it was worth it. We headed into Nathan’s second transplant already in remission for the first time since our rough journey began. Unfortunately we could not have imagined how difficult the second transplant would be. Nathan become feverish and remained that way for eighteen straight days and nights, and his digestive system was hit very hard by the strong chemotherapy. The fever returned two weeks later and a very serious brain infection developed and went undiagnosed in Nathan until it was almost two late. Our son’s life was shutting down by the minute, until the proper medicine finally began. We his parents were on an impossible journey but we made it. We are so proud today to still have our son, still cancer free, but none of us will ever be the same.
What is this pediatric cancer world? It remains incredulous to us, despite having been in the middle of it for three years now. It is a lens through which we now see almost every other aspect of our earthly life. Getting back on our feet as a family, thinking about any long-term plans, all seem to rely heavily on Nathan’s situation. We as parents have worked hard to shield our son from knowing much of this so he won’t have to carry any emotional baggage whatsoever on top of his remaining physical struggles. Are we as a family better off for being in this pediatric cancer world? No, it is just a different place, and we are doing the best we can just like every other family in the world dealing with all the other significant challenges in our lives on earth.