Things feel very intense right now, and I have a full and grateful heart. As I sit here for hours and hours sorting photographs I am struck with pride and thankfulness at having been blessed with this boy for nine years and fifty-one days. There was just so much joy in Benjamin’s life. I have evidence. Tons… Continue Reading Nearing.
Sleep is absolutely necessary. Sleep is completely elusive. How these two facts will reconcile is beyond me, but it’s time. I was awake again last night until after 5am. I tried to lie down several hours earlier, but it was futile. My mind was racing with images and all I wanted to do was return to… Continue Reading Sleep.
It’s 3:45am. Benjamin just vomited every bit of last night’s nourishment from his body. He has abdominal pain he can’t describe. I don’t know anymore if it’s a result of the medicine or if there is fluid trapped in his belly or if something else is wrong, like maybe those polyps have developed and we… Continue Reading Day 715/87
We both slept so soundly last night. I jumped up at shift change, hopeful, while Benji caught the last of his twelve hours. Benji’s labs showed a doubling of white blood cells as well as neutrophils (his ANC is 120). His blast percentage stayed the same, but that means the number of blasts doubled as… Continue Reading Day 697/69
I broke my own rule last night and stayed up way, way, way too late researching. My mind was in turbo mode after our Moffitt meeting. I thought it would be safe to lift my moratorium, but it was not. I was kind of wrecked today. This will not happen again. Today contained some frustrating phone calls.… Continue Reading Day 622
The sunrise over the bridge this morning seems like a very long time ago. It’s been a long, full day. Benjamin took his Methotrexate much later than I would have liked him too. It was a product of our many pots on the fire. We will readjust tonight and give him his 6MP on the… Continue Reading Day 509