Day 419 - Back to school

     With football season....err, I mean Autumn fast approaching we have a busy month of August ahead of us.  But before I get into that let's talk about health updates.  This afternoon Cristy got a call from the school nurse that Evan was running a mild fever of 37.3 C (99.3 F).  She picked him up from school and I hurried home to watch Nolan expecting a trip to the ER.  So far his temperature seems to have leveled off just a little below the threshold that Aflac would worry about it.
     For the past few days Evan has had a cough and it's obvious he's fighting some sort of cold.  With any luck his immune system can fight off  whatever it is he has right now.  It's probably a little too early to get worried, but he's also complaining of discomfort in his right knee and stomach issues.  These were the same issues he was having early on in his treatment.

Fossil hunting at Tellus

     Evan's regularly scheduled monthly appointment with the oncology team is on Monday.  He'll receive a couple of IV infusions (IVIG and Pentamidine) to help prop up his immune system and we'll get some updated blood counts.  I'm hoping we can get an update on the long-term plans for antibiotics and anti-fungals in his treatment regimen.
     August is a busy time for our family.  Nolan's birthday is the 11th, my niece Lily has one on the 22nd and Evan's is on the 24th.  Our weekends from here until Labor Day are consumed with celebrations at various venues.  It's an exciting time for the kids and we're looking forward to making some great memories ahead.
     About a month ago Cristy and I received an email from CURE asking if we'd like to share Evan's journey so far and if they could use his story in September focused on children and families battling cancer.  We happily agreed as they've been a wonderful organization to work with and do many great things for families.  Below you will find my write up for Evan along with the picture we chose for his posting.  Keep in mind they might cut it down, add to or edit it, but this is my version in its entirety.

     How does a family cope with the reality that their child has cancer?  One day at a time.  In June of 2016 we took our oldest son, Evan, to visit his pediatrician for what we thought would be a routine check-up for a fever.  What we learned that day would change our lives forever.  He was diagnosed with leukemia (B-ALL) and it was discovered his immune system was not functioning as expected and had been suppressed for some time.

     For the past year our son has fought bravely, and even when faced with adversity he manages to keep a smile on his face.  We’ve experienced many set backs during our journey.  Infections, surgeries, unexpected interactions with various drugs, extended hospital stays and mobility challenges to name a few.

     Early in his treatment Evan bounced back and forth between the cancer units and PICU at Children’s Healthcare of Atlanta – Scottish Rite.  The family experienced some dark days as we watched Evan struggle to fight infections in his body, combined with other health challenges presented as a result of his on-going cancer treatment plan.   

     Remission was achieved after our first phase of chemotherapy; however, multiple surgeries to Evan’s right leg, torso and arms had taken their toll on him.  He developed atrophy because of the bed rest required following his many surgeries and procedures.  Even a year later physical therapy is a vital component of Evan’s health plan.  Throughout his struggles we’ve had the honor of watching our young son develop personality traits and skills that would not have been possible without this type of adversity.

     Besides remission we’ve had other notable milestones over the last 12 months.  This year we were fortunate enough to visit Disney World and Universal Studios, Evan has experienced one birthday since being diagnosed, he was able to attend Kindergarten beginning in February and made the honor roll, and his mobility is improving without the assistance of his walker or wheelchair.  We’ve gotten the chance to see the good in countless individuals and organizations, such as CURE, which has been very motivating.

     I’ve asked Evan to help me tell his story and he modestly shies away and says there isn’t much to tell.  He wanted me to mention that he enjoys Del Taco, playing soccer with Dad and reading with Mommy.  I look forward to the day when the treatment of childhood cancer is less impactful on the body and spirit of the patient, and families no longer have to experience the pain of this terrible disease.  On the bright side it has helped our family grow closer and allowed us to gain a new perspective on life.  The strength that Evan shows daily inspires us to be the best version of ourselves possible.