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

Day 419 - Back to school

     With football season....err, I mean Autumn fast approaching we have a busy month of August ahead of us.  But before I get into that let's talk about health updates.  This afternoon Cristy got a call from the school nurse that Evan was running a mild fever of 37.3 C (99.3 F).  She picked him up from school and I hurried home to watch Nolan expecting a trip to the ER.  So far his temperature seems to have leveled off just a little below the threshold that Aflac would worry about it.
     For the past few days Evan has had a cough and it's obvious he's fighting some sort of cold.  With any luck his immune system can fight off  whatever it is he has right now.  It's probably a little too early to get worried, but he's also complaining of discomfort in his right knee and stomach issues.  These were the same issues he was having early on in his treatment.

Fossil hunting at Tellus

     Evan's regularly scheduled monthly appointment with the oncology team is on Monday.  He'll receive a couple of IV infusions (IVIG and Pentamidine) to help prop up his immune system and we'll get some updated blood counts.  I'm hoping we can get an update on the long-term plans for antibiotics and anti-fungals in his treatment regimen.
     August is a busy time for our family.  Nolan's birthday is the 11th, my niece Lily has one on the 22nd and Evan's is on the 24th.  Our weekends from here until Labor Day are consumed with celebrations at various venues.  It's an exciting time for the kids and we're looking forward to making some great memories ahead.
     About a month ago Cristy and I received an email from CURE asking if we'd like to share Evan's journey so far and if they could use his story in September focused on children and families battling cancer.  We happily agreed as they've been a wonderful organization to work with and do many great things for families.  Below you will find my write up for Evan along with the picture we chose for his posting.  Keep in mind they might cut it down, add to or edit it, but this is my version in its entirety.

     How does a family cope with the reality that their child has cancer?  One day at a time.  In June of 2016 we took our oldest son, Evan, to visit his pediatrician for what we thought would be a routine check-up for a fever.  What we learned that day would change our lives forever.  He was diagnosed with leukemia (B-ALL) and it was discovered his immune system was not functioning as expected and had been suppressed for some time.

     For the past year our son has fought bravely, and even when faced with adversity he manages to keep a smile on his face.  We’ve experienced many set backs during our journey.  Infections, surgeries, unexpected interactions with various drugs, extended hospital stays and mobility challenges to name a few.

     Early in his treatment Evan bounced back and forth between the cancer units and PICU at Children’s Healthcare of Atlanta – Scottish Rite.  The family experienced some dark days as we watched Evan struggle to fight infections in his body, combined with other health challenges presented as a result of his on-going cancer treatment plan.   

     Remission was achieved after our first phase of chemotherapy; however, multiple surgeries to Evan’s right leg, torso and arms had taken their toll on him.  He developed atrophy because of the bed rest required following his many surgeries and procedures.  Even a year later physical therapy is a vital component of Evan’s health plan.  Throughout his struggles we’ve had the honor of watching our young son develop personality traits and skills that would not have been possible without this type of adversity.

     Besides remission we’ve had other notable milestones over the last 12 months.  This year we were fortunate enough to visit Disney World and Universal Studios, Evan has experienced one birthday since being diagnosed, he was able to attend Kindergarten beginning in February and made the honor roll, and his mobility is improving without the assistance of his walker or wheelchair.  We’ve gotten the chance to see the good in countless individuals and organizations, such as CURE, which has been very motivating.

     I’ve asked Evan to help me tell his story and he modestly shies away and says there isn’t much to tell.  He wanted me to mention that he enjoys Del Taco, playing soccer with Dad and reading with Mommy.  I look forward to the day when the treatment of childhood cancer is less impactful on the body and spirit of the patient, and families no longer have to experience the pain of this terrible disease.  On the bright side it has helped our family grow closer and allowed us to gain a new perspective on life.  The strength that Evan shows daily inspires us to be the best version of ourselves possible.