Day 878 - Updated counts

     Last week Evan went for his monthly clinic visit.  I'm happy to report that his counts were all ideal for this stage of treatment.  This appointment only included IVIG and Pentamidine, but next month he'll receive his quarterly spinal tap (Methotrexate), Vincristine infusion, along with IVIG and Pentamidine. I believe he'll also get his week of steroids.

 

Latest blood counts for Evan

     This past weekend the family and I joined our friends, the Harts, for a pediatric brain cancer walk at Piedmont Park.  It was fun hanging out with them as the kids genuinely enjoy it as much as we do.  The weather was fantastic and it was good getting out for a bit.  As if this needed to be stated, I hate cancer in all its forms.  The next morning I learned that a friend of mine lost his wife to brain cancer.  It was a short time frame from her diagnosis to her passing.  There's got to be a better way to treat cancer and I hope I see a cure during my lifetime.  My sincere condolences to their family during this difficult time.
     Next month Cristy is participating in the St. Jude Marathon Weekend 10K.  As such we are helping raise money for this charity.  St. Jude never charges a bill to their patients or families and are regularly on the cutting edge of pediatric cancer research.  Below is a link to Cristy's team page if you'd like to make a donation along with a link I posted about St. Jude's early years and leukemia treatment breakthrough.  It wasn't that long ago that leukemia was virtually a death sentence.  It's a long read, but always has me in tears by the end thinking of all the children this process has been able to save.

St. Jude 10K Marathon Weekend - Cristy's Team Page

St. Jude - Anatomy of a Cure

     Wrapping up with some pics from Halloween and from this past weekend.

Starry Nights 5K at Piedmont Park

Happy Halloween!

Evan reading to Nolan before Trick-or-Treating

Day 862 - Getting ready for cooler weather

     To date this blog represents the longest gap between updates.  It's been roughly two months since I've posted anything.  Needless to say I'll probably miss something.  As usual let's start with Evan's health updates.

     Evan's mobility is going really well.  He's still doing PT work every other week for his leg and continues to work towards more strength in his right arm since breaking it.  During his last clinic visit his blood counts looked very good.

WBC - 1.89

HGB - 10.2

Platelets - 128

ANC - 1.06

     All of these numbers are exactly where the doctors want to see them, suppressed, but still able to function.  With flu season coming I anticipate he'll get another virus this year.  Hopefully his body will be able to fight it off much like last season.  The monthly IVIG helps his immune system tremendously.  Cristy and I have been fighting with the insurance company over the last few months because they consider this treatment experimental.  I think we're finally past that hurdle and looking forward to stress free months ahead.

     Over the last 60 days we've wrapped up fundraising for Rally, taken part in multiple outings compliments of Camp Sunshine and Camp Aurora and Cristy attended Cure's Tribute to Quiet Heroes.  I'll try to update the blog with photos from Camp Sunshine Family Camp Weekend.  All of these charities have helped our family tremendously during treatment and I want to say thank you to them.  Cristy is beginning her fundraising for St. Jude's now as she will be participating in a 10K in Memphis on Dec 1st.  If you'd like to donate please see below:

St. Jude Memphis Marathon Weekend

     Upcoming we don't have much going on.  Typical monthly chemo and the holidays for the most part.  Heading to my parent's house this weekend for their 2nd annual Halloween party.  Should be fun and I know the kids love spending time (and sleeping over) at Grandma and Grandpa's house.  I'll try to be more timely in my updates going forward, but truthfully the lack of posts simply means that Evan is progressing as expected.

Getting dolled up for Tribute to Quiet Heroes event

Last day of Fall Break with the kids

Aladdin at the Fox - compliments of Camp Sunshine

Late night at the Fox aftermath - couldn't even brush teeth

Waiting on Grandma to celebrate her birthday

Favorite activity, besides video games

Following the removal of his cast

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