Sunday Morning

Christi slept well through the night. She did not actually move from this position. In part it is from the increase in Ativan. Her pulse has dropped to the low 50’s, however, it is strong. Each breath seems to be forced, but, I would not describe it as labored breathing.

The days and nights actually go by very fast. It is more like one long day with a bunch of naps. We choose to keep it very isolated in our room. Christi is leaving us and we want to absorb these final days. In some very sad ways she has already left us. No longer does she walk, or read, or draw. When awake she is a distant shell of her former self. Her eyes lack focus. Conversations, are peppered with narcotic induced hallucinations. So I have resigned myself to the fact that the real Christi has already departed. It is time for her soul and body to catch up. Perhaps today will be a better day...there is always hope right Shayla? One of the lucid things that Christi was able to manage yesterday was this comment about her pain. "If I weren't so civil I would be cursing right now" REALLY I am not making that up!!!She said that…. Honestly, I have no idea were she gets that "civility". Most be from Angela.

Angela is an amazing women with powerful capacity to function under stress. She has marshaled the forces who will lay our sweetie to rest while not missing a moment with her while living. Angela leads a busy and complicated life and when something of this magnitude occurs there are bound to be many professional disruptions. From the very bottom of my heart I want to thank all of you who have helped her along. She does not deserve to have her child stolen and face such deep disruption in her profession life. That is just more than one person should be forced to endure-so again thank you.

Aunts and grandmas please skip this paragraph-too much info:
Medically speaking, the pain is originating from the expansion of the disease in the marrow space. We have been told that bone pain is the worst pain to manage. If the pressure continues there is the possibility of fractures. There is no way to tell what is really going on with her body though. Surprisingly her hemoglobin continues to be in double digits. Many kids expire from inadequate blood supply. With her robust counts it appears that she will go a different route. Maris says that there is an outpost somewhere churning out red blood cells (maybe in her big toe=his words not mine). It is very confounding but the disease is somewhat sinister in preserving its host.

The thought of her vanishing forever is far too depressing. I have taken emotional refuge in trying to establish a proper way to memorialize her. Our ideas are starting to gel and we hope to enlist her supporters help us.

Today we are looking forward to real Italian meatballs and a visit from the Kerschners. There will be more quiet time with Christi and probably another host of frightful decisions such as placement of a foley catheter.