Day 1682 - The quarantine continues

      Greetings all, it's been quite some time since I've posted any updates.  Fortunately this post isn't bad news, but rather a state of current affairs.

     Over the past roughly 8 months we've continued to do our part as a family during the on-going pandemic.  We have greatly limited our exposure to others, wear masks in public and have made the necessary sacrifices to better ensure our health.  With vaccine distribution underway Cristy and I are hopeful that 2021 will have some semblance of normalcy later in the year.  Cristy's employer is even rolling out the vaccine to teammates now and she's slated to get it some time soon.

     Both Evan and Nolan are attending school virtually.  Naturally I'm not thrilled with that because they are missing out on so much social skill development, but academically they're both doing fine.  Both of the boy's teachers are great and we're so appreciative for all they do, especially during this unprecedented time with daily health challenges and evolving technology solutions.  We've started a list of things we want to do once the pandemic is more controlled.  Most of the items involve our favorite restaurants or travel.  Personally I'm looking forward to the days of having friends over for cookouts.

     Evan's appointments with Aflac have tapered off because of his strong blood counts.  During his visit yesterday the doctor gave him a clean bill of health and was happy overall with his counts and appearance.  Even his IGG counts seemed to have improved which was welcome news since a downturn would have meant some IV time.  Both boys are growing like weeds.  

     Cristy and I strive daily to find physical things for them to do and try to avoid TV/video game time if at all possible.  The dilemma I face is during work meetings when I need a few minutes of quiet TV is one of the few tools to calm them down.  We bought the boys a green screen for Christmas and they've both taken to it quite well.  If nothing else these past few months have opened up their creative sides and challenged their creative sensibilities.  

     Will wrap up with some photos from the past 8 MONTHS!  I'll try to post a bit more often, but the good news is if you don't hear from us then it means I don't have any negative news to report.

Day 1422 - Family update amidst the pandemic

     Greetings friends and visitors.  If you're reading this in the month of May then you understand what a unique couple of months we've all experienced.  The coronavirus epidemic is unprecedented, or at the very least hasn't been seen in any of our lifetimes.  Those of you who know me well probably think I'm going to write a blog focused on the science and data that is currently being debated regarding the virus, but today's blog will be quite the opposite.  Instead I wanted to shed some light on what emotions other cancer families are likely feeling right now.

     Being the father of two young boys, one of them a cancer survivor off of treatment since September, I naturally feel concern that the virus could infect one of them.  I suppose you could argue the fact that this virus seems to have a much larger impact on our older population and those with preexisting conditions; however, I would take no comfort in knowing that we could potentially jeopardize the life of someone else.  I certainly hope that if Evan's immune system is called into action that it responds as expected.  Cristy and I are in relatively good health and we take daily Flintstones vitamins, so this virus has no chance against us.
     Imagine you or someone you love has no immune system to protect it against infections.  Regardless of this particular virus, the threat of an infection exists and there would be little you could do to stop it.  In the case of bacterial infections antibiotics can only do so much.  The body's immune system has to step in and help at some point.  This was the main reason Evan had so many issues with infections in his body early on in treatment.

Evan decided on a black waterproof cast

     My heart truly goes out to all the families in treatment during this difficult time.  Immuno-suppressed individuals are at such at great risk that I can understand any apprehension in going out or opening your home to anyone.  When Evan was undergoing treatment and immuno-suppressed we spent close to eight months in a pseudo quarantine state.  Granted I was going in to work daily, but weekends consisted of us staying at home.  We went to great lengths to ensure cleanliness at our house with constant hand washing being a small component of that.  Evan had a PICC line at that time and was getting twice daily blood thinner shots in his stomach.  Let's just say the risk for infection was well above average.

The family having a virtual birthday party for our friend Debra

     I would never tell another person how to live their life.  There could be any number of reasons for going out right now, such as earning money for bills to a strong belief in personal freedoms.  What I will say is cancer families right now are probably on pins and needles hoping for a vaccine and a return to normal as quickly as possible.  My plans are to stay home and continue to minimize my contact with the outside.  My family and I are in a fortunate position to be able to do this.  We've been through this sort of grind before and while we don't necessarily enjoy quarantine, we realize it's a means to an end.

In good spirits despite the broken arm

Buckle fracture on both bones of his forearm

     Wrapping up with some long overdue photos of the boys.  You'll notice in the more recent ones that Evan broke his left arm last week falling off the playset.  Luckily it wasn't too serious and we learned today while getting his cast that he's looking at a 3 - 4 week recovery time.   I wish everyone continued good health and hopefully financial prosperity in this most difficult time.  Stay safe, use good judgement when around others and we'll bounce back from this before you know it.

Evan conceived a dance party, complete with playlist and snacks

A mixology night with some of their favorite drinks

Day 1320 - Exciting potential in the world of immunotherapy

     Two posts in two days!  What is happening?  In all seriousness, a friend of a friend posted about a potential cure for all types of cancer.  I normally don't like to get too excited about this sort of thing, especially when trials haven't even started, but this follows in the footsteps of CAR-T cell therapy.

Universal Cancer Therapy?

     My explanation wouldn't be scientific enough to do the article justice, so I'd highly recommend you check the link out if you want to learn more.  I'm so hopeful that a cure is found in my lifetime.  I'd love to see the day when cancer isn't a terminal disease.

Day 1319 - Port has successfully been removed

     As a follow-up I wanted to update everyone that Evan's port removal surgery was successfully completed on January 13th.  No issues or pain to report other than a bit of general soreness on his hand where the IV was inserted.  From the pictures (see below) you'll notice that Evan didn't seem the least bit nervous and he's now adjusting to life without his port.

     It took every bit of effort for Cristy and I to keep the boys from roughhousing over the last week+.  Much to our surprise the glue used by the doctors to hold together the surgical site is still intact and everything seems to be healing as expected.  I'm so happy to have this next chapter in our journey behind us.

The port that was just below Evan's ribs on his right-hand side

     Over the weekend I took a moment to reflect on everything he's been through.  We're so fortunate that he's bouncing back and returning to the boy he was before being diagnosed.  His appetite has never been better, he's got a taste for sweets again, his agility is improving and during his last appointment his growth chart showed a spike now that he's been off of chemo for the last four months.  Having experience and empathy around this subject my heart goes out to all families still dealing with cancer.

Our first time doing an escape room

     At school both of the boys made the Principal's Honor Roll for the past 9 weeks.  As mentioned in the previous blog our intention is to get Evan and Nolan involved in some clubs or teams for additional social interactions.  We've signed them both up for lacrosse and I'm hoping to find some science based groups to enroll them in.

100 days of school

     With improved health and many challenges behind us we'll be looking for some nonprofits to get involved with.  Evan is 8 and Nolan 5, so it's hard for them to grasp the magnitude of what we suggest to them sometimes, but with their combined experiences in the area of childhood cancer they could provide families with tremendous support and insight.