Today marked the last day of Theo’s 28-day cycle of blinantumomab (or as we like to call it, his backpack medication)! It was a big day! Theo has constantly reminded all of us just how adaptable he can be, but nonetheless, the minute that backpack came off and he realized he was no longer connected, his mood was instantly elevated :) 

Pending all of his labs come back with number counts where they should be, we will officially kick-off “Maintenance” on Tuesday, January 16th.  The idea behind the Maintenance phase is to ensure the leukemia does not come back and to destroy any remaining leukemia cells that may regrow (or any cells that may have survived) and cause a relapse, but in a more gentle manner as compared to other treatment phases. We truly thought this day would never come! And while we are certainly very grateful and happy to be starting this next “chapter”,  we felt a little discouragement creep in today as we learned more of the details surrounding what these next two years (approximately) will bring. Theo will continue receiving various forms of chemotherapy, including a daily liquid form, a weekly tablet form, and some chemo treatment via occasional spinal taps. Phew, it still feels like a lot! Theo’s doctor also mentioned he may still experience some symptoms/sickness while appropriate dosages are figured out over the course of the next several months. All in all, we remain hopeful that Maintenance will be a time for togetherness and calm following a difficult year!

One question we get asked from time to time is, “is Theo cancer-free?”-- a question we weren’t entirely sure how to answer! So today we asked and what we’ve basically summed up is that Theo is in remission, but we can’t yet say 100% that he is cancer free because there is still the possibility his leukemia could come back (which is why treatments continue!). As one nurse described it today (I’m paraphrasing, but it went something like this), “cancer can be sneaky and so we continue to attack the cancer cells in different ways with different methods so it can’t outsmart us”. Makes sense! So for now we celebrate some of the other milestones: the end of the backpack medication, the beginning of a more gentle treatment (fingers crossed!) and some much needed freedom from the hospital. 

Love and hugs to all on this journey with us! We feel your support surrounding us and we couldn’t be more grateful!