How the world has changed since my last update! The COVID-19 pandemic has certainly disrupted life as we knew it and has thrown a spanner in the works for our goal to get Sophie to New York. Ideally, her first series of treatment there would begin around July; however, given the current situation this seems an unlikely possibility. Luckily, the trial does not include a time restriction on when the treatment must begin, meaning Sophie should still be eligible to participate later this year or next year. So, we remain hopeful that the situation will improve, allowing travel restrictions to be eased and for us to feel safe enough to make the journey. We will continue to raise funds to help make this happen, for when the time is right. If for whatever reason Sophie is unable to participate in the trial, and once we are sure she won’t require any further treatment overseas, we will donate any unused funds to neuroblastoma research.
Sophie has now completed 3 cycles of immunotherapy. Each cycle has involved a 5-day stay in hospital and it has been tough going. Immunotherapy has many potential side effects, including severe nerve pain which requires a constant infusion of morphine to manage. Sophie has also suffered with fluid retention, which has at times compromised her breathing. By the end of each week, her face is usually very swollen. In true Sophie style though, she puts up with it all and usually bounces back pretty quickly.
Last week, Sophie had follow-up scans and bone marrow biopsies which thankfully confirmed that she remains in remission. We know what a beast neuroblastoma can be and it’s always a big relief to hear the news that the scans are clear. For now, we are making the most of life in isolation, venturing out to the hospital when required. Here’s hoping we can get back to a “normal” life soon.