Day 32 - It takes a village to raise an idiot

    The updates for Evan tonight are pretty minor.  He's currently resting after his latest dose of nubain and I'm hoping for an uneventful night.  The switch to a new antibiotic, rocephin, seems to have resolved the fever issues.  If we can just figure out the stomach problems we'll be in much better shape.

Enjoying some sun and fresh air for a change.

    Evan's temper has reached its peak due to the steroids.  Cristy and I may throw a party tomorrow if only because his a.m. dose is the last one scheduled for a while.  I've never met anyone legitimately diagnosed as bi-polar, but I have to assume it's something like this.  At a moment's notice he tears into us for the most minor things.  On the plus side discontinuing the steroids certainly won't hurt his stomach.

Upset about being asked to brush his teeth.

     We're still on schedule for our procedures tomorrow at 1:00.  There was talk by the doctors of holding up on the PICC placement because of a false bacterial detection earlier this week, however it appears the doctors have explained the situation to the nurse practitioner and surgeons and we're a go (for now).
     Evan and I had a long talk tonight about what's happening this week as well as the journey ahead.  He got upset, which is completely understandable.  I held off getting into some of the finer details about leukemia, but assured him his body was responding well despite the fact that his stomach pains have persisted.  His biggest fear for tomorrow is the needle, which shouldn't be a big concern since he'll be asleep by that point.
     The doctors will share the blood counts with us tomorrow evening and we hope to have the bone marrow results by Thursday.  Those two reports will dictate the next phase of chemotherapy for us.

Playing some games in The Zone.

     I've spoken many times about the staff at Children's Healthcare of Atlanta, however if you've never visited this place you might not understand the true scope of our support system here.  Allow me to break down our daily medical team along with the ancillary techs and support services.

Daily
Two nurses working 12 hour shifts - These wonderful ladies (no males so far at least) work the front line with answering questions, administering the drugs, taking vitals on two hour increments, providing reports for the doctors and helping keep us sane during trying times.  I'm biased for a few of them as they've went above and beyond for us on many occasions.
Two nurse technicians working 12 hour shifts - These folks are responsible for making sure the nurses have all the resources they need to keep the patients cared for.  Think things like gloves, medications, computers, etc.
Oncologist - This is the MVP of our medical team.  Everyone takes their direction from this individual.  I haven't quite learned their cadence yet, but I think they work M - F/8-5.  That may not be accurate, but they definitely seem to switch out weekly.
Oncologist Doctor Fellow - Doctor in training specializing in oncology/hematology.
Nurse Practitioner - The NP would be your #5 hitter if this was baseball.  Carries quite a bit a clout and typically works closest with me and Cristy while we're developing Evan's day-to-day needs.
Pharmacist - Pretty self explanatory if you've ever been to a Rite-Aid or CVS.  The drug gal.
Gastrointestinal doctor - I don't think he'd be part of a normal support team here, but since Evan has been having such a hard time with his stomach we've gotten to meet several doctors from this team.  Because of the limitations for patients with compromised systems the GI docs have to get creative sometimes or use intuition when deciding on a diagnosis or course of action.
Infectious Disease - Responsible for selecting Evan's medication based on lab results.
Lab technicians - Sadly we see them daily, sometimes multiple times a day.  They handle blood draws, IV installs and transportation of the samples.

Receiving a new IV for chemo.

Add-on services
Family experience - Someone who's sole purpose is to make sure Cristy and I are happy with the care Evan is receiving and the accommodations.
Child life - Someone who's job is to ease any anxiety that Evan may feel about a procedure or drug.  They also typically keep us plugged in on any events going on in the hospital that day or week.
Musical therapist - Someone that provides music as a means of entertainment to help pass the time.
Occupational therapist - They're responsible for keeping Evan's logic and cognitive skills sharp while we're here.
Chaplain - Meets with the family and I for spiritual guidance.
Physical therapist - Responsible for keeping Evan's motor skills sharp due to prolonged bed rest.
Dental Hygienist - Similar to the GI doctor, because Evan's immune system will regularly be compromised a normal dentist is out of the question.  This dentist specializes in treating cancer patients.
Hospital Teacher - This person acts as our liaison between the hospital and the school system.  They'll also obtain Evan's school work and conduct class when he's here for clinical visits or longer stays.
Case Manager - Responsible for helping us navigate through insurance needs and counciling.
Patient and Family Educator - Responsible for educating Cristy and I on the drugs, treatments and how to administer the various types.

This list is far from complete and I'm sure I've accidentally forgotten some other wonderful individuals, but this group is trusted to provide support and help guide Evan back to health.  We're very fortunate to have a world renowned hospital in our backyard.