Dealing with Oligo is definitely a book with many chapters. For most of us, there will be chapters that revolve around the disease and treatments…recurrence, progression, etc. And there are chapters that reflect our approach to dealing with all of this. None of this easy.
With two children with Oligos, my family has seen more than its share of these episodes. The shock and panic of each diagnosis, “bad MRI,” and round of treatment is like being hit by a bus. It is tough, but you find a way to pick yourself up and move forward. We think of it as finding a way to put the fear back in its box. It takes time and effort, but eventually you get the lid back on.
One of the hardest parts is that with each new development, we enter the world of fear and the unknown. We been through multiple surgeries, recurrence, progression, radiation, chemo, false positive MRIs, and one clinical trial. In each case, we were quietly terrified of what the future held, but things have always worked out for my boys. So, I would encourage you to be positive and believe in the future, even though what you or your loved will go through is not what anyone would hope for.