Day 437 - Birthday follow-up (Picture blog)

     As mentioned in the last blog post I finally have an update about Evan's birthday.  On Thursday Evan, Nolan, Cristy and myself celebrated at the house.  We opened gifts, had ice cream and then ate dinner at Evan's favorite restaurant (Del Taco).  The gift that I hoped he would enjoy was his laser tag set.  For starters it's just fun to play, but I also thought it might help with leg strength and stamina playing something he enjoys.

Wolfing down some tacos.

His own laser tag set.

     Yesterday my family had the pleasure of hosting many of Evan and Nolan's friends at Andretti's Speedway.  We were a bit unsure what to expect because leading up to the party the communication between the event coordinator at Andretti's and Cristy had been spotty at best.  Once we arrived things seemed to fall into place.  I feel like they did a good job of helping keep things moving and overall I was happy with how it all turned out.

     From the moment we walked in the door, until we left, the kids had their dials turned to 11.  This was my second time celebrating a child's birthday party at Andretti's and I've come to the conclusion that this place is kid catnip.  I lost count of the number of laps the kids spent sprinting around the party room.  I wasn't complaining though, anything to wear them down a bit.

     We want to say THANK YOU to everyone who was able to come out and help make the day special for both boys.  I hope all the kids left a little fuller and a little more tired.  I spent the majority of the day chasing Nolan around the arcade and that alone was probably worth a few thousand steps on my FitBit.  Evan told me his favorite part of the day was redeeming his tickets for a Pikachu doll.

     Evan's health is fairly stable at the moment.  PT is on-going and we're planning on pulling the Vori in a couple weeks.  His lips have several large splits in them because of some of the drugs he's on.  Traditional lip remedies, like Chapstick, are frowned upon because they have ingredients that trap germs.  We have a balm prescribed by the doctors, but it's not very effective.  With fall coming we'll need to get creative on better ways to prevent this from happening.

Nolan the unicorn.

     Wrapping up with some more photos from the past few days.  Thanks again to all the children and families for their friendship and making the day so special.  I sincerely hope everyone enjoyed themselves as much as we did.

   

Day 434 - Happy 6th Birthday Evan!

     A year ago this day was anything but guaranteed.  As I sit here thinking back on the past 14 months I'm amazed with everything that has happened.  There are days when I think back to his struggles and remember we'll never get our naivete back.  It's days like today that I reflect and yearn so strongly for a healthy and happy son at the end of our journey.  I'm beyond thrilled to celebrate his 6th birthday with him later today.

Full head of hair and a smile to boot.

     On the health front there isn't anything new to report.  We're continuing with treatment and looking forward to pulling the Voriconazole later next month.  His next appointment is scheduled for early September, however I believe they're holding the Vincristine and only going with his IV based immuno-boosting medications.
     This past week the family and I visited Toccoa, Georgia to watch the eclipse in totality.  We got a room in Commerce, Georgia the night before and spent Monday morning shopping in the nearby outlet shops.  Despite a hot day we tried to enjoy ourselves and once the moon passed I promptly packed our things and tried to beat the traffic home.  It was a big mistake.  Instead of taking an hour and a half it took us closer to five hours to get home.

Grabbing a bite at the Totality Festival.

Eclipse time!

     Today we have several things planned to make this day special and a party this weekend with Evan's friends.  I'll post more photos later today along with a smaller update.
     I'd also like to wish my niece Lily a belated happy 4th birthday.  We celebrated her big day this past weekend, but unfortunately I didn't get many photos.

Skye made a visit to the party.

Day 425 - Our medication list is shrinking

     On Monday Evan had his monthly appointment with the oncology team.  He'll typically receive drugs to prop up his immune system and quarterly IV based chemotherapy drugs and spinal taps.  Yesterday we got very good news on a couple of fronts.  Evan's blood counts looked very good.  His immune system was present, but suppressed.  All of his numbers were well within the range the doctors were looking for.

WBC, RBC, HGB, Platelets and ANC all looked good.

     In addition to that we received approval to pull Keflex from our daily medications.  This is an antibiotic that Evan has been on since late last year.  It had been prescribed as a precautionary measure, but with Evan's immune system remaining stable and the latest scan not showing any areas of concern the medical team decided we could discontinue it.  We're going to remain on Voriconazole at least until the next monthly appointment.  The doctors weren't comfortable pulling both medications at the same time.

Following his IV infusions.

     Evan's cold seems to be tapering off, which is another good sign.  It shows his body is fighting foreign bodies as expected.  Cristy and I will need to continue monitoring Evan's health closely.  With these anti-drugs out of the rotation he'll obviously be a bit more susceptible to infections.  Once we get off the Voriconazole I'm anxious to see if this clears up his skin issues or if this is purely a side effect of his Methotrexate.

     After their clinic visit yesterday, Cristy and Evan went over to Scottish Rite to have labs drawn for genetic testing.  The point of these tests are to determine if Evan's immune system was not functioning at maximum capacity before cancer.  A conversation I had with one of the oncology doctors last year was whether Evan's immune system suffered because of cancer OR if a weaker immune system allowed the cancer cells to develop.  It's all theoretical and something that doctors are starting to look at even closer.  We're just now getting the tests done because of all sorts of insurance issues, lack of genetic resources in this area, and the dilemma of whether testing a child going through chemotherapy would be a worthwhile exercise.  We'll have to wait and see.

One of the displays at the main hospital.

     While at Scottish Rite, Cristy and Evan stopped by the Aflac unit to say hello to some of the nurses. They also grabbed a bite in the all too familiar cafeteria and saw some of the new displays.  There was a time when these units were our second home.  I'm happy to say they're moving to a newly updated section of the hospital on the 28th.  I'd like to go visit once they get settled in.  We wish them all the best in their new locale and hope the children and families are able to find peace and comfort in the new amenities.

Grabbing a bite before heading home.

Day 422 - Happy Birthday Nolan!

     Almost all good stories have an antagonist, protagonist and a supporting cast.  This helps provide depth to the characters and adds to the story overall.  This is an example of life imitating art.  While this blog is dedicated to Evan and his journey, we'd be remiss not to focus on his supporting cast from time to time.

Nolan during the Tot Trot last weekend.

     Yesterday we celebrated Nolan's 3rd birthday; we continued his celebration today with a family photo session and trip to Medieval Times.  There are plenty of photos below of Nolan that span the last couple of weeks.  As anyone who's been around him knows he rarely is without a smile and he adores his older brother.  We all love him very much and try extremely hard to make sure he doesn't get lost in the fray while we're focused on Evan's health.
     Evan's cold seems to be nearing an end.  He was able to attend school Thursday and Friday without incident.  He still has an infrequent cough, but his temperature has remained stable.  I'm beginning to get frustrated with the redness that we continue to see in his face, particularly around his eyes.  When we talk to the medical team on Monday I'm going to try like crazy to get them to put a stake in the ground for pulling some of his meds.  Keeping these treatments indefinitely, when the ID doctor is in favor of discontinuing them, just seems non-beneficial to me.

Playing with some Silly String this evening.

     I suspect on Monday there will be a blog entry showing Evan's blood counts.  Evan hasn't spoke of any discomfort in his leg or stomach today, but I'm sure the docs will give him a once over.  If follow-up appointments for scans are ordered I'll provide some details on those as well.  Closing out with some photos of Evan and Nolan, along with the link to our family photos taken this morning.  As usual my Pruitt eyes struck again ruining at least one of the pictures.

Getting ready to dig into some birthday cupcakes.

Time to eat.  Shirts off.

Dr. Nolan

Kisses for Momma

There's no silverware at MT, so Evan did his own improvisation.

Sneak attack from above!

Only had a hard copy, sorry for the poor quality.

Family photo session