Day 131 - Time for our next round

     Today Cristy and Evan went to the clinic to have an ECHO done and meet with a doctor from the Infectious Disease team.  This is all ahead of Evan's beginning of Delayed Intensification tomorrow.  After talking with Cristy this afternoon I'm less than thrilled with some of the findings.

Camping with Mommy on Friday night.

     We'll start with the ID meeting.  The doctor wanted to review Evan's Voriconazole levels to make sure they were still therapeutic; they're not.  At this time the medical team isn't sure why he went from ~1.0 to 0.4 during his last check.  At that level there is increased risk of the fungal infections to return.  The short term plan is to continue with our current dosing level and to check him again next week.
     The cyst removals that Evan had done a couple of weeks ago hasn't yielded any culture results.  This is a good sign meaning the cells removed were already killed by antibiotics or his immune system.  The surgeon feels that future surgeries probably aren't necessary assuming we keep his Voriconazole levels and blood counts within effective ranges.
     Evan's ECHO results also found something a bit concerning.  During the test his heart was showing an inefficiency in evacuating circulated blood.  As is typically the case, no known root cause.  If future tests result in low values the doctors will be forced to prescribe medication.  It also showed one of two things: 1) muscles in a region that they didn't expect or 2) an infection in one of his chambers.  Surgery wasn't discussed since he's already on various drugs to address foreign bodies in his blood, however ECHOs will now be scheduled on an increased frequency.

ECHO testing on Evan.

     I do have some good news.  His blood counts were all very strong, particularly his ANC.  Platelets, Hemoglobin, RBCs and WBCs all looked strong.  At least he begins his next round in a better than average position.
     Physical therapy is virtually at a stand still.  Evan's weight has increased from 18.35 to 19.3.  This was good to see, but it's not without Cristy and I breaking out every parenting technique to motivate (force) him to eat.  I know the tube into his stomach isn't ideal, however I'm not opposed to it if it helps him get back to his pre-cancer weight.  Eventually Evan's PT schedule will go from two days a week to one.  I'm hoping for some sort of "physical epiphany" soon.
     Friday October 21st was Cape Day at CHoA and Hayes Elementary.  To celebrate Evan and Nolan both got capes and they wore them in honor of the super heroes fighting cancer every day.  Cristy sent me a photo from Hayes with some of the teachers and administration supporting Evan and another student battling cancer, as well as all the kids at CHoA.  It's great to see people unite together for a common cause.

Keep fighting!

     In closing today, the family and I went to Camp Sunshine on Sunday for a Fall Festival.  The families got to dress up and play carnival style games.  Food and drinks were provided and the weather couldn't have been better.  We had a great time and really enjoyed seeing the smiles on all the kids' faces in attendance.

Eating custom decorated cookies.

Can you guess who those handsome boys are?