May 23, 2017 (Scott)
Today was the 46th commencement ceremony for Western Nevada College– the tenth one I’ve attended in my eleven years with the college. The day was full of hope and recognition of accomplishments, with a theme centered on service to family, community, country. The speakers told stories of perseverance, dedication, and empathy and the need for such in the present as much as the future. I’m proud to be part of such a bold, determined, and lively institution that is equally focused on high standards and pushing the limits for students’ access to opportunities.
I’m happy to say my work environment matches well with the home version which is somehow even bolder, livelier, and as determined as you’d want fueled by four year old stubbornness and moderate chaos (e.g. Lincoln hitting whiffle balls in the living room wearing only a tutu). Our little dragon princess continues to persevere as the adults around her struggle to strike the right balance for the remainder of the maintenance phase (about 11 more months). Despite our patience and caution, we continue to experience it all by way of the roller coaster– numbers fall, hold meds, recovery, adjustment, grit teeth and repeat.
Last week on Monday we took Maya in early for labs as Sara and I agreed she looked pale and had showed some suspect bruising. As we expected, her Hgb and platelets were a little low, but her ANC was 1510, likely pushed higher by her body’s reaction to a virus. The worrisome thing, though, is always the possibility of a downward trend. Today (one week later) we got new lab results that showed just that.
Recent experience indicates we should further reduce the 6mp dosage. The inclusion of allopurinol has just about totally solved Maya’s liver toxicity, but this combination of drugs is also known to dramatically increase the effects of 6mp, and her marrow still appears to be overly suppressed. In terms of treating the leukemia, over suppression is probably not a bad thing; however, the risk of infection goes up significantly with an ANC under 700. The threshold for blood transfusion is Hgb<7, so we’ll carefully watch and check labs again later in the week if necessary.
I look forward one day soon to writing a post entitled, Calibrated. But then again, this isn’t a timepiece we’re talking about. This is a growing, changing, adapting, ferocious little fire-breathing dragon-child, and while she may allow her parents a little more smooth sailing in the future (oh goodness, please), she’s exactly not the sort of thing that will tolerate being predicable for long.
Sara, my Love, I wish I could promise you fewer surprises going forward. But sadly I cannot. What I can promise, though, is that I will never quit. We got into this together, and that’s exactly how we’ll overcome.
We made plans again this week to start Lincoln at the WNC Child Development Center, and again it looks like we’ll put that on hold. Lincoln is so ready for new adventures– he’s ready to take the lead and bring his tales of triumph and woe back home to share with his sister. But for now he can wait a little longer. Our weekly schedules remain carefully balanced, teetering on the edge at times but always with the safety net of an ever-supportive army of family and friends. We thank you all for your dedication, perseverance, empathy, determination, and your liveliness. We wish you all a happy and healthy spring and summer– may we see you out ‘in the wild’ real soon.