Day 44 - Courage beads explained and health update

     I'll get right into the health update since I'm sure that is what people care about the most.  This post is being written at about 12:30 on Saturday afternoon and Evan just got wheeled back to his room in the ICU from his latest surgery.  The doctors undressed his arms and ankle to re-clean the infected areas from his surgery on Thursday.  They found pockets of pus still in his arm, but surprisingly his ankle looked good.  I say surprisingly because this was the area that looked the worst prior to cutting him open to flush out the dead cells.  They decided to leave the pump on his ankle for now and added a pump to his left arm to help with drainage.  Upon getting him opened up they saw that his left arm had collected more pus so the cleanup was definitely needed.

Evan's right arm before the surgeries began.

     Cristy met with the ID team this morning and they are going to make a decision soon on whether to drop his strongest antibiotic.  Right now he's on one of the most powerful antibiotics and not showing signs of any bacterial infections.  Changing to something a little weaker will be easier on his body, particularly his organs.  Evan will continue on his two anti-fungals until the sores on his skin and pockets of pus have disappeared.
     Early yesterday evening there was an opening on the Radiology schedule and Evan was sent down for an MRI on his head.  They wanted to check his sinus cavities and brain for any infections that might have gotten missed.  The Oncology medical team has been very impressed with Evan's can-do attitude and told the Radiology team that Evan could do this one hour procedure without sedation.  The Radiology team was very hesitant as it's typically their standard to sedate children in order to capture accurate photos.  If you've had a chance to see Evan here at the hospital the word most often thrown around is compliant.  He's more eager to get it over with than to fuss about pokes, prods, ingesting drugs, etc.  As you can probably imagine he sat perfectly still throughout and the Radiologist called him a Rockstar; the Oncology team was proud (like his mother and me).
     Evan's primary doctor stopped by late yesterday and spoke to Cristy in person, with me on speaker phone, and we discussed his chemo plan moving forward.  With his counts still a little questionable the Dr. suggested we begin with mecaptopurine (6-MP), perform the spinal tap injections (methatrexate) on a slightly revised scheduled and reduce his vincristine dosage so as not to negatively effect his liver function.  We're told the 6-MP takes about 8 - 12 weeks to affect blood cell counts which should give Evan plenty of time to clear out these remaining infections.

Recovering from his latest surgery.

     The fevers still terrify me, however they SEEM to be reducing in frequency.  All the nurses keep assuring me that these are very natural considering the number of surgeries and procedures Evan has had lately.  This makes it difficult to determine how well Evan is rebounding.  The medical team feels better about his recovery and is observing closely over the next few days.  In the meantime we'll keep treating him with Tylenol, Motrin, Toredal and ice packs.

Courage Beads
     The Beads of Courage program was started back in 2003 by Jean Baruch while she was working on her PhD at the University of Arizona.  There are several sites out there that explain it in varying amounts of detail so please feel free to search more about it if my explanation isn't clear.  In short, it's a story of each child's journey with life threatening illnesses as told through beads.  For example, black beads are given for needle pokes, lime green is for fevers, red is for blood product transfusions, yellow is for hospital stays, etc.

Evan's beads as of July 30th, although he's missing several since moving to the ICU.

     Each day, or as Cristy remembers it, she keeps track of the accomplishments or challenges that Evan has faced.  We then speak with the hospital staff who provides us with the beads.  The children typically put the strands on their medical trolleys to show the battles they have fought so far.  Originally we weren't tracking multiple antibiotic treatments, needle pokes, etc. per day or the strand would be a bit longer.  Evan's is much further along than most kids in month 2 of chemo, but I'm hoping to collect fewer beads over the remaining 1,051 days.

CHoA's color guide.