Well, we've made it to another milestone; today we're going to celebrate what an amazing year 2017 has been. Tomorrow we'll begin looking forward to everything that 2018 has to offer. We all had a great Christmas and I've been fortunate enough to have this past week off. Cristy's brother, Rhod, came and visited the week before and naturally the boys were really glad to get to spend some time with him. I fear they may have gotten him sick while here, so hopefully he's on the mend. It was great spending time with loved ones and tonight we're excited to have family and friends over to ring in the new year.
Playing Pie Face for the first time.
On the health front Evan had his monthly chemo appointment on Wednesday. This is one of his quarterly steroid and Vincristine treatments, along with a spinal tap. His counts looked really good. I don't have them in front of me right now, but his ANC was a 1.4 and all his other numbers were right where the doctors wanted them. Evan hasn't had any fevers since our last blog post and only coughs occasionally. Of note the doctors are increasing his Vincristine dosage to more closely mirror a "normal" leukemia patient. What I mean is Evan's chemo plan was modified specifically for him because of the number of complications he had early on. Also, the nurse tending to us confirmed that Evan's scheduled chemotherapy completion date is late August 2019.
Sleeping off anesthesia following his spinal tap.
Came to bed earlier this week to two kids in bed.
It's amazing to see the difference between 2016 and 2017. Last year we purposely isolated ourselves to minimize germs in the house. This year we're entertaining and expecting a long night. The only downside will be the unseasonably cold temps. I plan on shooting a large amount of fireworks so we'll have to find a way to keep everyone bundled up and warm throughout. I'm so thrilled to be able to share this special day with so many people that we care about.
The Pruitts want everyone to have a happy New Year. If you decide to drink please designate a driver or use Uber/Lyft. We hope to see all of you in 2018 safe and sound!
Despite the title of today's blog let me add a disclaimer to avoid any confusion. When we started this journey the doctors informed us this was a three year process, but it doesn't take into account setbacks, scheduling challenges or how Evan's body has responded to certain treatments. Today I'm celebrating our "halfway point", but we may end sooner or later than the 1,095 days originally forecast.
A few weeks back during Evan's last chemotherapy appointment the NP that day indicated she would speak with the medical team on helping define an end to our treatment plan. We have no illusions that it's concluding anytime soon; however, if the standard for treatment becomes two years at some point, we would be adjusted to this new time frame. For our own sanity it would be good to put a stake in the ground on a date as it would give us a goal to work towards.
On the health front we've had a little bit of a bumpy weekend. Evan has been battling a cold for the last few days. Friday it came to a head in the form of a fever. Cristy notified Aflac and they instructed her to bring him into the ER for evaluation. He was given antibiotics and blood was taken to review counts and run for cultures. No cultures have formed thus far. His counts looked strong, meaning they feel he should be able to fight off whatever he has. Despite his strong counts he has continued to have fevers this weekend. They're not coming with great frequency and are generally low grade. The on-call doctor has instructed us we can administer Tylenol for the weekend and to keep a close eye on him. I'm happy to report he's not acting sick and has constantly tried to engage in roughhousing with me so I feel good about where he's at.
Let's take a stroll down memory lane. Our journey is far from over and these fevers are subtle reminders that we should continue to cherish each day. The family and I have treated our time as a gift and are trying to act socially responsible. This experience has caused all of us to take a closer look at ourselves and do what we can to help others. I certainly don't consider myself to be a good person, but this experience has made me take inventory of myself and my relationships. I hope Cristy and the boys grow from our ups and downs to become better people. With little control over the outcome at the end of the day that's all we can do until the cancer is gone.
What follows are lots of photos showing the highs and lows we've experienced up to this point, along with an overdue song. Many have been used in this blog before, but I've tried to slip a few in from my private stash. Evan's strength throughout has been amazing and given the same circumstances I can't guarantee I would have the same positive and fearless attitude that he has had. I still have a very hard time looking at any photos of Evan despite his improved health. Will the question of 'what if?' always be with me? I still don't know. I hope one day I can look at pictures or videos of Evan and smile or laugh at our good times, but that day is not today. Not while we still have more fighting to do. I'm so proud and grateful for my family, friends, medical team, volunteers and even many strangers. Without them I shudder to think where we'd be. My goal has been, and is, to pay it forward where at all possible.
We've had downs and it's weird to say, but we've had many more ups. This whole struggle has caused all of us to dig deep and be better versions of ourselves than would have been possible ordinarily. Thank you to EVERYONE who has helped and inspired us along the way!
Music
This is a song that we first heard at Camp Sunshine during the closing ceremony. I liked it enough to look it up and both of the boys have since latched onto it. It's called Superhero by Ross Lynch of the Austin and Ally show on Disney.
Photos
Countless pictures from the last year and a half. In no particular order.
Day 1 of our journey.
Removing a hose from his lung after one of his infection removal surgeries.
Time to get back up and walk young man.
Two of our pillars of strength during this adventure.
Just another night in the ER.
New Years toast 2016.
We're proud of our scars.
Showing the wear and tear following his second port installation.
Celebrating Mother's Day with grandma.
The happiest I've ever seen him, getting ready for the Harry Potter ride.
Getting his steps in to avoid atrophy from bed rest.
Our home away from home.
Two unsung heroes, Nolan and my father.
Enjoying a week in Orlando, compliments of Make A Wish.
Gardening with Grandpa.
Orientation for 1st grade.
Our 3rd day at Aflac, Evan is receiving his first port.
Struggling with oxygen and breathing due to infections.
Despite it all, Evan constantly has a smile on his face.
The person I look to for consistency and perspective.
Little brother coming to visit his hero.
Following the CURE 5K. Evan would be hospitalized shortly after for another infection.
Rarely without a smile.
Shared birthday party for Evan and Nolan.
Family photos at one of our favorite charities, Camp Sunshine.
Getting x-rays prior to discovering various infections early on.
Despite my smile this was one of the toughest days. Friends help during tough times.
Spending Christmas last year with Uncle Rhod.
Not bruises, pockets of infection due to a lack of immune system.
Right arm after surgeries and some treatment.
Cape Day 2016
Courage Bead progress from February 2017.
Getting ready for a recognition ceremony compliments of CURE.
Patient vs Parents kickball game at Camp Sunshine.
This sign is an understatement. He is beyond strong.
