Day 800 - Happy 7th birthday Evan

       Today we reach another milestone in our overall journey as we celebrate Evan's 7th birthday (his 3rd since being diagnosed).  As with any family facing cancer you're never sure when the next birthday could be the last and as always we try to cherish these milestones as much as possible.  Due to early challenges in our treatment Evan faced significant weight loss, immobility and assorted side effects from the medication (nausea, vomiting, gastrointestinal).  Even last year he was still on voriconazole on his 6th birthday and had an adverse reaction to sunlight and red circles around his eyes.

8/24/2016

     Evan has grown so much over this time and I strongly believe this experience has matured him much faster than if we had not been diagnosed.  Cristy and I wonder all the time what his life and personality would have been like if not for this struggle.  He is incredibly smart and amazes me daily with how quickly he picks up on things.  On the downside, I know he internalizes his feelings and comes off as moody sometimes.  I'm hoping this is just a phase.  Nevertheless, I am incredibly proud of him.  He powers through every treatment like a champ and rarely shows signs of fatigue.

Photo from this time last year

     As usual we're celebrating with Del Taco and Menchie's.  Tomorrow my family is coming up and we're going to spend the day at Dave and Buster's.  With all his favorites covered I hope he enjoys the weekend and understands how significant and special this is for all of us.  Evan doesn't need anything from a gift standpoint, but if you're looking to do something I would recommend donating to a charity we are fundraising for at the moment - The Rally Foundation. You can make a donation or purchase a "Rally for Evan" shirt!  Follow the link below to find out how you can help.

The Rally Foundation - Rally for Evan

     Next week Evan goes back to the doctor for a scan of his arm and hopefully he'll get his cast removed.  The way he's moving around without fear I feel pretty good that it's healed up.  I'm very thankful that is the only medical concern we have at the moment.  Enjoy your weekend young man.  You look like a monkey (he gets that from his Dad) and smell like one too (he gets that from his Mom).  To many more. 

8/24/2018 - Birthday breakfast

Minecraft swords from Uncle Luey

Donut eating contest at Camp Aurora event

Happy 5th birthday to my niece Lily!

Celebrating Lily's 5th birthday

School Spirit Night at Chuck E. Cheese!

Day 791 - Savor each moment

     Not much to report on the health front with Evan since the last blog was only a couple of days ago.  Today I wanted to talk about enjoying the daily grind and savoring those moments in life that can sometimes seem mundane.  As I've mentioned on several occasions this journey has been so inspiring for so many reasons.  The biggest impact on me has been perspective, but it's also caused me to take notice of other things.

Being silly with the real joker of the family

     Cristy and I have been surrounded by so many strong people over the last two years, far too many to count them all.  Some of these folks have situations much different from ours, particularly those with children that are terminal.  All you can do in those situations is live each day the best you know how and try to make it memorable.  I can remember when Evan was diagnosed and spent the first few months in the hospital battling infections, he was mainly bedridden.  If that had been the end for us I would carried crippling guilt with me for not making the most of our time.

I'll catch a ride with Uber

     Fortunately the doctors got the right cocktail of drugs, combined with his immune system, to combat all the ailments.  Since then Cristy and I have done our best to create as many moments with our children as possible.  With his improved health I still need to remind myself that we are not through yet and continue to maximize our time. 

     To those reading this with loved ones, don't be afraid to let them know how you feel.  A hug, a kiss, words of encouragement, giving your time to others are all ways you can make an impact.  I've tried to be more silly with the kids, available and affectionate for Cristy and more giving of my time for family and friends.  We've met so many strangers who have also had an impact on us and I'm happy to call some of them friends now.  Don't be afraid to test your limits, let your guard down, show compassion for others and make time for those you care about.  Tomorrow is not guaranteed for anyone.

Push your limits, even if you're afraid

     In case it got lost in the last blog, Evan's Rally page is up.  I'll provide more details below, including the design (again).

Rally link (Evan's story is towards the bottom of the page): Rally for Evan

     Closing out with a song called Little Wonders that I first heard on a Disney movie called Meet the Robinsons.  In short, it's about fighting through adversity and enjoying the little moments in life.

     

Day 789 - A little too rough - Happy birthday Nolan

     A couple weekends ago we hosted a few families and their children.  While playing around with some of the kids Nolan pushed over a cardboard box that Evan was hiding in causing him to fall; this resulted in a hairline fracture in his right arm.  After trying to console Evan for a bit Cristy realized he must really be in pain and hurried him to the ER.  Initially he was given a sling and splint, but after meeting with ortho they thought better of it and put him in a cast.  Pending no unexpected complications or re-breaks he is set to have the cast removed the last week in August.

Evan's first day of 2nd grade

     Last Friday Evan had his monthly chemo visit at the clinic.  He received his IVIG and Pentamidine infusions, along with his blood count check.  His counts came back very strong:  WBC = 2.1, HGB = 11.5, Platelets = 124 and ANC =1.24.  Other than the broken arm he's in very good health right now.  We're fortunate that his marrow has bounced back following the scare a few months ago.

When they're not fighting they're hugging

     If you're friends with me on Facebook you may have seen a post I shared about a girl named Laura who recently discovered that her brain cancer is terminal and doctors are only giving her another month or two to live.  Cristy and I got the pleasure of meeting her family while on our Lighthouse Family Retreat in July.  Her final wish was to meet Taylor Swift, but with such a tight time frame to make it happen, the chances were slim.  I'm happy to report that due to an outpouring of support the message made it to the right people and she was brought to Atlanta to meet Taylor Swift.  I was so happy to hear this and it's great seeing people pull together to help others.

     This past weekend we celebrated Nolan's 4th birthday.  He was his typical happy and energetic self.  Make-A-Wish invited us out to Medieval Times to meet the knights, get a back stage tour and enjoy dinner and a show.  Purely coincidental, but we took Nolan to Medieval Times for his birthday last year as well.  We all had a blast.  The staff and entertainers at MT were great with the kids and we all enjoyed seeing how they put the show together.  I want to send my sincere thanks to Make-A-Wish and Medieval Times for a wonderful and memorable time!

     September is right around the corner and it's Childhood Cancer Awareness Month.  Cristy and I are starting our fundraising effort for The Rally Foundation.  Rally raises money for childhood cancer research.  This year Evan will be one of the 46 Faces of Rally.  Rally is selling t-shirts and long sleeve shirts with Evan's name and the hashtag #PruittCanDoIt.  All proceeds benefit The Rally Foundation.  If you have a few spare dollars to contribute to this most worthy organization it would be greatly appreciated.

     Evan's link:  Rally for Evan

     

Rally shirts available for purchase

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