The Adventures of Evan: Day 1304 - The port has been approved for removal

Greetings from the Pruitt family to those reading today's blog. As you can tell from the title Evan has been approved from his primary oncologist to have his port removed. This was welcome news, but let's back up a bit to see how we got here.

He's getting really good at rock climbing

In mid-December Evan had his first appointment with his immunologist. The purpose was to determine if his TACI gene mutation might lead to future infections, even when his blood counts are considered "good". Blood counts for his last two draws show very strong numbers, which is encouraging for his continued health. I'm paraphrasing a bit since I wasn't at the appointment with Cristy, but basically the initial ask was whether Evan experienced infections throughout treatment. The answer was no; most of his infections were early on and he was dealing with the fallout from his various surgeries.

Based on this brief history given and his strong blood counts the doctor chose to take a wait and see approach before prescribing IVIG infusions or any other treatments. There was no concern at that time of removing his port, but we needed to confer with oncology before an order would be placed.

On Jan 2nd Evan met with his primary oncology doctor and was given a good once over. His overall health and counts were solid so we were given the order to proceed. We're awaiting word from the surgical team's coordinator before we have a set date.

Counts as of 1/2

Surprisingly when given this good news Evan was a bit apprehensive. He stated that he was worried about hurting afterwards. I told him that was a very logical fear; however, this will be his 4th such procedure and he has never complained for one second of discomfort or pain during his previous 3. If pain does become a problem then I'm sure letting him play video games will take his mind off of things.

This is a good segue into some of Evan's personality traits at the moment. He continues to be moody, but I suspect this is just part of him finding himself to some degree. In addition to that he fights with his brother constantly (again, typical boy stuff). As a punishment Cristy and I have restricted video games for the last couple of weeks. His demeanor has improved a small bit, but we'll continue to keep him away from the consoles for now. We're trying to focus on appreciation for what he has, gratefulness and some form of restraint around his brother. Overall he's a good kid, but I want to make sure we make the most of these transformative years.

Cookies for Santa

Over the holidays we had the opportunity to spend time with family and friends. The kids had a couple of weeks off, but unfortunately the weather was less than ideal. We tried to make the most of it with trips around town. The boys' big gifts from me and Cristy this year were manual scooters. They wanted electric, but I felt like that defeated the purpose of going outside for exercise. Evan's main ask was for a Youtube channel, but I told him Santa and I didn't see that happening anytime soon. For those wondering, no, he doesn't believe in Santa still.

With Spring around the corner Cristy and I are looking for things for the boys to do. We talked about enrolling them into a new music school opening down the street from us, soccer or baseball/t-ball again, but something new came up which may be the answer - Lacrosse. Keep in mind I know nothing about the sport, but I imagine it's some sort of hybrid between hockey and soccer. The boys took a skills class offered by our high school and they both seemed to enjoy it enough to give it a closer look. For those reading this, we're open to other suggestions. Our neighbors have a basketball goal and I've been trying to get out more. Evan doesn't have much range yet, but he's getting better with his shooting. I figure it too is a possibility in a couple of years.

As usual wrapping things up with some photos from the past month or so.