Posted Jan 19, 2011
Erin and Patrick are in flight headed home. His scans are stable. We are grateful but on alert. His bone marrow remains positive. We won’t have final results until tomorrow. We hope the percentage of NB cells is lower of course. His December 22 urine markers were higher than November, which is worrisome, but he only had one course under his belt at that point. We will be anxious to hear the results of today’s urine markers next week He remains on study and received course three today. We are scanning in three weeks rather than the planned six just to make sure we don’t let disease progression get away from us. We are scheduling stem cell collection to occur in Philadelphia after course four. If we get stem cells we will have more options including MIBG treatment, which was so effective for Patrick last time. On a day when Liam’s family is devastated with bad scan results we are cognizant of relative good news. I can’t help but be a little disappointed that two courses of this drug did not yield improved scans. Patrick is blazing a trail here that we hoped would provide others a way out of the thicket. I keep telling myself it’s still early and to be patient. It may not be reasonable to expect changes on a nuclear medicine scan in a mere six weeks. We rejoice stability, the imminent reunion, the wisdom of our medical team, Patrick’s quality of life, viable options… We weep for Liam. We worry about Brennan as if he were our own child. We must find a way to stop the suffering of innocent children. We will press on until we do.