Day 48 - Kick in the pants

     Well, it appears we're regressing again.  Evan's fevers have picked back up in frequency and potency.  We had a long conversation with the medical team this morning to express our concerns and explain how Evan has been sliding over the last 36 - 48 hours.  Naturally they couldn't answer our questions with as much confidence as we'd like, but we did revise his treatment plan to help treat the C-diff.  For now we're adding flagyl to go along with his vancomycin.  Tomorrow morning Evan will also get a spinal tap to check his spinal fluid and a CT scan of his head down to his pelvis.  They want to make sure no more infections or clots have formed.

Working off a fever.  Ibuprofen and Acetaminophen are both needed. 

     Evan received a smaller dose of vincristine through his IV yesterday, to go along with his daily mercaptopurine chemotherapy.  Despite the countless ailments Evan has experienced he has continued on his revised leukemia regiment, so if you're looking for a silver lining you've got that.

     Another pretty significant problem that has cropped up is high blood pressure.  The doctors aren't sure of the source of that.  Clot?  Reaction to one of the many, many drugs he's on?  Pain that he's not telling us about?  I'm really hoping the scans tomorrow yield some sort of answers for us.

     The fungal infections seem to be subsiding throughout his body.  In the photos below you'll see the spots that were either drained or lanced off related to the fungal lesions.  Many of them look much better than before the surgeries last week.  We haven't noticed any new spots forming, but he will stay on both anti-fungal medications for the foreseeable future.

Right arm.  Various areas that were drained and lanced.

     His ankle is still a work in progress.  The area is much less swollen from infection, but because they had to drill into his bone to address the infection there he'll be in quite a bit of pain for the next couple of weeks.  Evan's physical therapist worked with him yesterday and will be here every other day to continue working him back into shape.  In the meantime he'll wear a boot that will support and adjust his ankle into position for proper healing.

Left leg.  Two major spots healing with packing and stitches.

     Today on the way to the hospital I had to give myself a pep talk to keep my head up, keep moving forward and trust in the plan.  I typically can talk to people about Evan without much emotion unless the subject of the future comes up.  I don't like thinking past today.  It's important that we all stay committed to doing whatever is necessary to nurse Evan back to health.  While all of us sleeping under one roof would be preferred, his health easily trumps my need for comfort.
     My son is holding back emotionally and wants to quit.  During some PT work with Cristy this morning I finally dropped the bomb on him.  We've been sheltering him from the truth, that his situation is very much life and death and he needs to start working towards getting healthy.  He was upset and crying and I stressed to him we're not going to feel sorry for ourselves.  Cristy and I assured him that if he fought for us we'd fight like hell for him.  As a four year old, soon to be five, I don't know if the message was clear to him.  Today I feel strong and inspired and will continue motivating my family, collaborating with the medical team and moving us forward one day at a time.

Evan working on some range of motion exercises.

     Closing out today's blog with a song which has given me quite a bit of motivation lately.  I apologize to anyone offended by the lyrics, but this is my f*** cancer song.  The song is Mission by Lupe Fiasco.  It deals with people battling cancer and how they kept fighting on despite the outcome.