Sunday, November 9, 2014

Brandt turns ONE!

A year ago today, we welcomed our beautiful Brandt into the world. What was already a bittersweet occasion, quickly turned into the worst moments of my life. Watching Dow, frail and bald from chemo hover over our tiny baby, who inexplicably was clinging to life; was the epitome of my most hellish nightmare. To this day, I cannot even articulate the panic, pain, and fear of that time and thinking about it still takes me to a very dark place. The thought of what life might be like in a year was unfathomable.

Here we are, one year later. Brandt is happy, healthy, and virtually unscathed by his septic stint in the NICU. He is a big boy with an even bigger heart. His sweet demeanor and affinity for snuggling makes every second spent in that NICU worth it.  It has been a LONG year since he joined our brood. Ups, downs, highs, and lows, he's just happy to be along for the ride.  Life today is better than I expected it to be a last November. Our children are thriving and Dow is still with us.  It hasn't been easy, but we are here and we are whole.

The autumn has been full of festivities  and Dow has done so well with all of them. Surgery in August radically improved the quality of life for all of us. Over the last couple weeks, I've noticed Dow slipping back into some previous behavior patterns. This week my fears were confirmed. His MRI revealed that his tumor is growing once again.  This means he is off the current chemo regimen and we are waiting to hear if he qualifies for a second tumor ablation procedure. If so, we will head back to Washington University. If he does not, we will stay and join a combo chemo trial being performed at KU. We are quickly running out of options and the grains of sand continue to fall. We are all struggling with what seems to be the inevitable, but grappling with how to cope with our ever changing existence is more challenging than ever. Dow is still trying to find his niche within the medical community and coming to terms with the fact that he will probably never treat another patient again.  I am trying to figure out how to effectively care for two demanding toddlers and Dow, who is slowly becoming more dependent on my assistance.  We have so much help and support, but this sometimes deepens the guilt of not being able to carry the weight on our own.

While I'd hoped this entry would be a cheerful update and celebration of our one year-old, it has at least served it's purpose as a vehicle of information.  Even with this current set back, I am in a better place than I was a year ago, and for that-I am grateful.