Day 1255 - Thanksgiving is fast approaching

     It's hard to believe that Thanksgiving is fast approaching and 2019 will soon be coming to an end.  I don't need a holiday devoted to thanks to help me appreciate the blessings afforded to me and my family.  Evan's continued health is just one of the things we're thankful for.  Three years ago Cristy, Evan and I spent our Thanksgiving in the hospital (Nolan was in excellent hands with my folks).

First day on the Disney Dream

Cape Day 2019

Cristy getting ready to leave for Tribute to Quiet Heroes

     Over the last two months we've had the good fortune of experiencing so many great moments; bi-annual Camp Sunshine trip, Cure's Tribute to Quiet Heroes, Halloween, pumpkin carving, Nolan playing soccer, our first Disney cruise and a Georgia Tech football game (the first for both boys).  In addition to this I'm so proud of how well they're doing in school.  During a recent parent-teacher conference I was pleased to hear how behaved both kids were socially and they both received the Principal's Honor Roll for their grades.  I jokingly mentioned this on Facebook, but I'm very grateful that our kids take after Cristy scholastically.  In my youth I didn't always treat school with the right priority and I'm hoping that the kids continue growing and don't stray down my path.

     Since the last blog update Evan has had a couple of clinic appointments.  Both visits showed marked improvements with his blood counts from then to now.  After being off of steroids for a bit I was hoping he'd be a little less moody, but it appears this is just a phase he's going through as an individual.  Overall he's a great kid, but he's very independent and fights us tooth and nail to get what he wants.

     Last week Evan visited his orthopedic doctor and we received excellent news:  he's all clear for any activity!  Naturally we'll see what Evan wants to do in the spring, but he wanted to play soccer prior to being diagnosed.  If he still has that mindset I'm happy to sign him up for his first season and work with him on his leg strength and stamina.

     Even though this is a blog about Evan, over time it's morphed to cover the whole family.  For the last couple months Nolan has battled a number of ailments.  These include double ear infections, numerous fevers and Hand Foot and Mouth virus. 

This was actually the tail-end of HFM

     Last evening he spiked a fever of 101.3 and we gave him Tylenol.  This didn't break the fever which forced us to give him Ibuprofen two hours later.  His temperature continued to fluctuate through the night between follow-up doses.  Cristy took him to the doctor this morning and I urged them to take blood this time.  They found his white blood cell count at a 27 (this is incredibly high).  We go back tomorrow for a follow-up appointment and the practical side of me says it's probably just an infection or virus, but this brings back so many memories.  I'm unusually nervous and gun shy.  Hoping tomorrow we can find the root cause of his symptoms and get him on the path to recovery.  I don't want to see another child have to go through the battle again.

     Wherever you find yourself this Thanksgiving I hope you're able to take a moment and reflect on the positive things in your life.  Tons of pictures below celebrating the last 60 days.

Getting ready to disembark for the cruise

Enjoying our last days at the beach for 2019

My little soccer pro

Ran into our old neighbor while passing through Atlanta

Murcat

Day 1198 - Our first scare

     This past Saturday Evan experienced his first fever since being off of chemo.  Cristy and I were out to dinner to celebrate our 14 year anniversary and upon returning home noticed Evan was a bit warm.  He wasn't acting unusual so I wasn't too worried about it at this point.  His fever was clocking in around 100.04, which is right at the threshold for calling the Aflac team.  As the hours wore on it was obvious the fever wasn't going to go away on it's own.  As long as Evan has a central line (port) fevers will always be an immediate trip to the ER.

A trip to Hillcrest Orchards compliments of Camp Sunshine

     We continued to closely monitor and around 2:30 Cristy took his temperature and found that it was 101.4.  With that she promptly called ahead to the on-call doctor to announce our departure, gathered Evan up and took him to the ER.  I stayed home with Nolan, although I'll admit I didn't get much sleep (more on that in a moment).  Once they arrived his temperature registered at 101.7 and his blood was drawn to begin checking for any irregularities.  Evan's body should be clearing itself of the chemo that has coursed through his veins for years; this created quite a bit of uncertainty in my mind.  I'm happy to report that his counts looked good (except for platelets which he's never had a problem with in the past).  Cristy and Evan returned home around 6:00 a.m. after a good once-over.

Monster Mini-golf with the kids last weekend

     Cristy and I handled the situation much like we would have in the past, but I will admit I was bracing myself for just about anything prior to the blood counts.  I've said it many times in this blog and it still remains true - the fear of a relapse will always be with me.  Over the last few years I've trained myself to prepare for the worst, but hope for the best.  I should have remembered one of the biggest indicators when there have been problems in the past; Evan himself.  He wasn't acting sick or out of sorts which is always a good sign.

     A couple of weekends ago Cristy and I hosted a few friends to celebrate the turning of another page in our journey.  As part of our decorations Cristy had a couple cakes made, balloons and his medical counts on display.  We also unveiled his Courage Beads for others to see for the first time.  All in all I think it was a good day and I'm glad the weather cooperated.  It was nice of Cristy's brother Rhod to drive down overnight from West Virginia to share the day with us.

The silly-string war of 2019

     Evan has another clinic appointment next week and as always I'm anxious to see his blood counts and which direction they're trending.  I hope to get some more concrete answers regarding his port removal and how IVIG plays into his treatment.  As long as Evan has his port we have been advised to stay on our Katie Beckett Medicaid.

     I'm really late getting this blog up, but if you're not aware September is Childhood Cancer Awareness month.  I strongly encourage anyone not familiar with the challenges and hardships that many families face to educate themselves on it.  This is an opportunity for us to raise awareness for funding, celebrate the fighters and mourn our warriors taken far too early.  Fundraising and awareness will always be something we'll champion.  I hope to witness a day when cancer is a nuisance and not a life threatening disease.

Evan's wall photo from Curefest in Washington, D.C.

     This week both of the boys are out of school for Fall Break.  Since they're both battling minor ailments I'm curious how much Cristy will be able to get them out of the house.  Something tells me that they have a lot of Del Taco in their future.

Donut eating contest