Day 765 - The kids are heading home

     It's been an amazing week, but tomorrow Cristy and the kids head back home for their last full week of summer vacation.  My trek continues as I spend a week in Orlando meeting some of my new co-workers.  I can't say enough about the staff and volunteers with Lighthouse.  We've made friends, made memories and grew stronger as a family.  Evan and Nolan had a fantastic time at the beach and Cristy and I participated in conversation with other families that allows us to continue to evolve our perspective on life.

Nolan slipped on the trip and skinned his face a bit

     To expand on my point above, the team with Lighthouse helped us make lifelong memories.  Each day was filled with family time, activities and sessions meant to provoke thoughtful reflection on the trials we face each day.  From picnics on the beach to poker night to date night to an un-birthday party, concluding with a talent show, we could not have asked for more.  As pictures from the LFR photographer become available I will post them, but in the meantime Cristy and I have tried to capture what we could.

This boy was wore out! 

     What I hope to take from this week, besides the memories, is some friendships that endure.  We've met many families and I wish them all the best as they continue their journeys.  In addition to the cancer families we're going to miss the family partners that helped and bonded with us along the way.  We are very grateful for this opportunity and plan to come back one day as volunteers once Evan's health has improved.  

Talent show

     The boys came away with a few scrapes and bruises, but I'd expect no less from active children.  Evan's next chemo appointment is in mid-August and I'm optimistic that his counts will be solid heading into his start of 2nd grade.  Another thing we'll need to keep a close eye on is how many colds Nolan brings home since he's starting pre-K.  Maybe I can start wrapping Evan in shrink wrap until August of next year.  

An afternoon at the arcade with laser tag

     Well, I need to get back to packing and cleaning our room ahead of an early departure tomorrow.  The boys wore themselves out this week and I'm waiting on the fatigue to hit me.  It's been a fun and eventful summer and I can't think of a better way to draw it to a close - with my family.

Italian (food) night

     

Day 761 - Summer Vacation

     During the last blog I mentioned additional updates forthcoming.  Earlier this summer we had worked out a trip to Florida with a charity called Lighthouse Family Retreat.  Unfortunately it was right when Evan's blood counts bottomed out and we didn't want to risk an infection so we asked to reschedule.  Well I'm happy to report this blog update is coming to you from Miramar Beach, FL on day two of our trip.

Get used to the howling theme for this blog entry

     Last week Evan had his monthly chemotherapy visit on Thursday.  His counts leveled back off to almost ideal numbers.  His ANC was a 1.35, which is right where the doctors like it.  Cristy then got a head start Friday morning to Great Wolf Lodge in LaGrange, GA with the boys and I met up with her right after work.  If you haven't been it's a fantastic spot for the weekend and has lots to do besides swimming.  Evan and Nolan fell in love with something called MagiQuest (we also did it in Gatlinburg).  In short you walk around for hours collecting artifacts for fantasy adventures using a RFID wand.  Let's just say I know the bottom floor of GWL like the back of my hand now.

Entrance to the MagiQuest lobby

     Following that trip we slowly made the trek down to Florida for our week long vacation here.  If you're not familiar with this charity let me do my best to explain their mission.  They try to provide a beach vacation free of charge to families battling cancer.  Their experience is spiritually focused and they strive hard to make sure we (literally) don't lift a finger for anything.  Those that know me know this is not easy at all for me to take. 

View from our balcony

     This morning our family partners took the boys for the morning allowing the parents to take part in a group discussion called Common Ground.  It was inspiring to hear each and every story from parents and the various struggles they face.  Oddly I'm comfortable talking to people about our own trials and struggles, but it really hits me hard to hear others tell theirs.  I'm really looking forward to the remainder of the week.  It's great the boys are having a memorable time, but it's also encouraging for Cristy and I to see our adventure has similarities with others.

Eating lunch after Day 2 activities

     Evan and Nolan are really enjoying the beach.  It looks like Evan has gotten the hang of swimming and Nolan just likes being around other kids.  This is the first time Nolan has been to the beach since Evan was diagnosed and I don't think he remembers much about his first trip.  We'll make sure to get plenty of pictures this time and with any luck maybe I can get him swimming unassisted before the end of this trip as well. 

Cristy got Evan to do some of the ropes course

Day 754 - Summer 2018 continues

     Greetings blog readers, it's been almost a month since I last provided an update.  Let's get started on health.  Evan's counts from two weeks ago were strong, although some of it could have been boosted from the week of steroids prior.  Here is the rundown:

WBC - 5.2

HGB - 12

Platelets 159

ANC - 3.1

     The ANC was a big surprise.  Evan has PT tomorrow and his monthly chemo visit at the clinic on Thursday.  I don't recall specifics on this visit, but will provide another blog update following his appointment with more details.  Over the summer Evan and Nolan have been attending Aurora Day Camp, which I mentioned in a previous blog, and I've noticed Evan's legs getting tired some lately.  I'm hoping that by pushing himself physically that he will eventually be able to put mobility and fatigue behind him.  For the most part he's getting around well.

Wrong camera!  Father's Day dinner with family and friends

     In the coming weeks we have lots of fun things planned for the kids as we continually try to wear them out and expose them to various experiences before school starts back up.  There's a new charity that has provided us with an opportunity to meet and take part in fellowship with other families faced with similar challenges.  I'll shed more light on it in a couple of weeks.  Following that Evan will begin 2nd grade and Nolan will start Pre-K in August.  Very excited to watch both of them grow and mature.  

Fireworks with the kids on July 3rd

     Not much else to update for today.  Below is an assortment of pictures from the last month.  Cristy's aunt came to visit the last week in June and we had a great time entertaining her and the kids.  I know the boys enjoyed spending time with her as well.  Fingers crossed there will be no more surprises during his clinical visit later this week.

Fun with filters

Wrapping up a fun Father's Day

A day out with Aunt Holly and Lily

Monster Mini-Golf with Aunt RuRu

Ru's first trip to the Center for Puppetry Arts

Food Truck night in Kennesaw

Therapist recommends climbing down the wall for added flexibility

Watching Peter Pan at the Serenbe Playhouse

Kids wanted a silly photo

Evan was ready to go inside and see the knights

Waiting for the show to start at Medieval Times

Warm-ups before 4th of July fireworks with the neighbors

Time to play fight

Cristy helping Nolan get started

Nolan's version of repelling off the wall