December 4th, 2016 (Scott) 

THANK YOU to the Nevada State Railroad Museum for their care, hospitality, and openness in providing a one of a kind experience for Maya, Ethan, Stella, and their families on Saturday. Thanks also to the Northern Nevada Children’s Cancer Foundation and local gallery, Artsy Fartsy for generously purchasing the tickets for all involved.

Events like the ‘Santa Train’ are part of what makes this time of year so special for kids. Unfortunately, the crowds and abundance of colds is what takes these kinds of outings off the table for immune compromised kids and their siblings. This year, museum volunteers and staff were not about to let a lowered immune system keep kids from meeting Santa on number #10 passenger car (built in 1873) or ring the bell on the #25 V&T locomotive (Lincoln about burst into pure energy hearing that whistle blow). Special thanks to Rebecca Bevans for being the catalyst for such a thoughtful event. The museum provided a special run for these kids and their families, and they even wiped down the car’s interior to make things as safe as possible for everyone.

We’re into our second month (of 18) of maintenance. Every phase is an adjustment, and this one continues to be. We have the routine more or less established, but the steroids present new twists on old themes. Maya takes decadron 5 days out of each month, and each time the side effects seem slightly more pronounced and hang on just a little longer. Maya’s sleep patterns are a constant struggle–it’s not ideal, but we’re discovering the balancing point with earlier bed times and a notable return to co-sleeping. Thank goodness for the king sized bed.

We learned recently that Renown will be ending their partnership with Oakland Children’s Hospital in favor of a partnership with Stanford. Exciting for Renown, yes, but stressful on our family as we now must decide between staying with our current oncology team or keeping Renown and moving to a new oncologist with a new team. This is not a decision we welcome ten months into leukemia treatment; we’ll work to gather as much info as we can (especially since insurance coverage may be impacted) and make our decision by the middle of this month.

The Christmas lights are up (minimally, as is my style) and the tree is lit (our first fake tree to keep mold/dust/etc to a minimum). Maya will turn 4 in a couple weeks, and we’ll have family in town over the Christmas break, so there’s much we’re all looking forward to. Sara and I have even planned an overnight ‘spa vacation’ later in the month… the bravery of those who will look after our children is truly inspiring.

Thank you all for the continued love and support. We wish you all a happy and healthy Christmas and New Year.