Day 35 - The hits keep coming

     I thought long and hard about whether to post anything tonight.  My initial thoughts were to drink a beer or two tonight to relax and hope that I could get a few hours of sleep.  What changed my mind was thinking of any parents of children with leukemia one day reading this blog.  I want them to know that there are going to be days when you don't get answers, where your child's health seems to stall and you have to be prepared for it.

He was a little uneasy on his feet, but warmed up.

     Another day has passed with substantially more questions than answers.  Cristy and I were anxious to meet with the medical team today and had several questions ready.  The general responses we got were "We don't know" and "We're guessing this is because of...".   Allow me to detail the current list of ailments.

• Evan's white blood cell count is elevated in his spinal fluid.  The doctors are unsure why.  They wish to extract more spinal fluid to re-check the cell counts.
• Evan has an infection in his upper left lung.  The doctors aren't sure why the antibiotics or anti-fungals to date have not eliminated this.  They want to perform surgery on him tomorrow to remove the lesion.  
• We still have not seen the results from the bone marrow extraction.  The MRD (minimum residual disease) figure helps determine next steps in chemotherapy.
• The doctors do not know why Evan's stomach continues to hurt.  A scope is scheduled for either tomorrow or early next week.
• The doctors do not know why Evan's fevers have returned.  If would be easy to attribute it to the puss ball in his lung, but they couldn't say with any certainty.

     For those keeping score at home the only thing I do know for sure is that his blood counts have improved and that his blood pressure has remained stable since leaving the ICU ward.  That's it.  All his other symptoms have either worsened or new ailments have arisen since we've been here.  Please don't read into this as a lack of trust in his medical team.  Cristy and I want answers now and sometimes it's not that easy.  I really do wish we could provide him more comfort and better manage his pain.  In that regard we've all failed.

Catching a smile while Cristy and I were joking around.

     Today we got some genuine smiles and laughs from him.  Being off the steroids is starting to show now.  If only we could figure out how to minimize his pain I know we'd see the happy, giddy kid that we all love.

Trying to keep his weight up.

     Evan's hair was getting even patchier than before his latest trim.  I felt we had no choice but to cut it down lower.  Keep in mind this isn't my best haircut, but I'm not looking for a job at the salon.  Some of the gaps were as a result of his hair thinning already.  Fingers crossed that tomorrow yields more answers and that my son comes out of the operations or procedures with minimal pain.

Working with the occupational therapist.

UPDATE - I ordered some leukemia bracelets of varying sizes.  If you're familiar with ribbon colors pink is breast cancer, gold is childhood cancer and in this case orange is leukemia.  They say "No One FIGHTS Alone!".  If you think you might want one let me know.  I can order more if need be.

Evan will NOT fight this alone!