Day 379 - Not much change

     Here we are about halfway through summer break and so far there isn't much to update.  Cristy and Evan visited with the ID doctor on Wednesday for a once over.  While checking his body for pockets of infection Evan indicated that he felt discomfort in his hip, however the Dr. felt this was likely muscle related and not bacterial.  Our primary ID doctor has decided to accept a position out of state.  This appointment gave us an opportunity to meet our newly assigned ID doctor.  We wish Dr. H well and thank her for her care and attention to Evan.

Visiting Lego Land

      On July 14th Evan has his next clinic appointment.  This will be a difficult one because it's steroids, Vincristine and a spinal tap.  We'll be watching how Evan's body responds to the steroids very closely.  Historically this has been when he's had the most problems with infection.  We also have an MRI scan scheduled for the 18th.  This is a precautionary step to catch any potential infections before they become much larger problems.

So glad to see mommy is back.

     July 4th is just around the corner.  The plans for now, weather permitting, is to shoot fireworks here at the house on Sunday and attend the fireworks show in downtown Kennesaw on July 3rd.  The kids love watching fireworks so I made sure to buy enough to last us for an hour or so.  The start date for school is fast approaching on July 31st.  I miss the longer summer breaks, but I guess it's nice that they get more time off during the year.

Getting around a little better.

     Last weekend Cristy joined her brother and aunt to attend her mom's memorial service.  With all that was going on with Evan's health Cristy hurried back home when she passed in October.  Her mom will be missed and we hope she rests peacefully.  When the boys ask about her we'll try to remind them of how much she cared for them and the time they got to spend together.

Waiting on the doctor.

   

Day 366 - A Year Ago Today

     On June 17, 2016 around this time (8:45 pm) Evan and I were in an exam room at Scottish Rite awaiting the results from multiple blood draws.  It would be later in the evening that we would receive the news that he has leukemia.  Instead of looking back on this year negatively I prefer to celebrate our one year anniversary.  Sure, we had our ups and downs this year, but Evan is stronger for it and he's shown amazing perseverance each and every day.  It's rare that he resists the treatments given to him now as he figures it's a means to an end.

Just another day at the clinic.

     At some point Cristy and I will show a tally of the number or surgeries and procedures he's been through.  Looking at Evan's body you can see the scars from the past year.  Leg surgeries, arm surgeries, spinal taps, lung operation, port installs and removal are just the ones off the top of my head.  The kid has been through the wringer for sure.  At one point our time in the hospital for 2016 was rivaling our time out of the hospital, although with improved health the hospital stays have been less frequent.

Heading to Grandma and Grandpa's house.

     This diagnosis has also given us opportunities to meet amazing people and situations that we likely would not have been exposed to.  I've seen family and friends come to together and show spirit and strength for us at times of need, we've witnessed amazing heroics from patients and healthcare professionals, we've been given chances to attend functions and trips to help relieve our stresses.  All of this would only have been possible by putting us in this position.  2016 was the toughest year of my life and even with Evan's improved health the past 12 months have taken their toll on us physically and emotionally.  All I can say is if we're lucky enough to ring the bell signaling Evan's long-term remission I'm going to be a complete mess.

Slowly getting his sweet tooth back.

     Friday afternoon Evan and Cristy returned home from his most recent appointment.  Due to the revised plan that he's on he only received Pentamidine and IVIG.  His WBC counts were a bit higher than the medical team would like to see, but with all the other drugs and interactions he has going on they decided to leave his chemotherapy dosages as is.  The oncologist at the clinic yesterday gave us the approval to enroll Evan into aquatic therapy.  His primary Physical Therapist feels this could speed up some of his recovery time because of the reduced stress it would put on his bones and joints.

Decent numbers overall.

     I want to wish a very Happy Father's Day to my dad, Roger Pruitt.  He's always made time for my sister and me, given us guidance and been a great role model for us, but with the new wrinkle of also having to continually help us out at a moments notice we see just how lucky we are to have him in our lives.  This afternoon we made the trip down to my parent's house to celebrate and enjoyed a great afternoon grilling out, picking vegetables and eating way more than we should have.

Picking some vegetables with Grandpa.

Water time.  Anyone not wanting to get wet better stay inside.

Day 357 - Happy Birthday to Cristy!

     Today marks the 39th earth year my wife has been in existence.  I'd like to wish her a very happy birthday.  This weekend she is leaving town to visit a friend in what will be her first vacation time since Evan was diagnosed.  This is well deserved for her as she helps keep this family together and moving in the right direction.  I don't know what I'd do without her.

Meeting Kylo.  Pic 1 of 3.

     Earlier today Evan had a lab appointment for a Voriconazole check.  His therapeutic level for this drug fluctuates wildly from month to month, likely due to a conflict with some of his chemotherapy drugs.  We also strongly believe that the Voriconazole and Methotrexate are contributing to redness in Evan's face and arms.  From talking with ID they have no plans to pull the Vori during his cancer treatment.  There is still signs of fungal infections in Evan's liver and spleen during the last MRI, but these have been here throughout.

Pic 2 of 3.

     Next Friday Evan is meeting with the Oncology team.  They'll draw blood to check his counts and administer Pentamidine and IVIG.  During the last count check Evan's white blood cells and ANC were a little higher than that the doctors wanted so I'm anxious to see how his body is responding to the maintenance treatment of Methotrexate and Mercaptopurine.  The good news is that other than red skin he's not showing any signs of the other side effects.

Pic 3 of 3.

     Cristy took the boys to the new splash pad at Swift-Cantrell Park by us this afternoon.  The boys didn't sit still long enough to catch decent pics, but by all accounts they enjoyed themselves.  Something tells me that will be a staple of our summer.  With Evan not scheduled for any other appointments for a while I would expect the blog the be silent for a week or so.

One of the few times the boys were close enough for a pic together.

Day 355 - Trip to Orlando (Day 7)

     We're back!  It was exhausting, but definitely the best vacation I can remember in quite some time.  We had a great time and I just want to thank everyone who helped play a role, such as: Make A Wish, Give Kids the World, Disney, Universal, etc.  If I'm forgetting anyone please don't hold it against me.

Let's get going dad!

     We decided to pass on Sea World this morning and instead hung around the resort a bit longer to get in a few more things.  Evan said he wanted to play putt-putt after breakfast (but really I think he was just avoiding the drive home) so we did that.  Rode the carousel a couple more times, visited the gift shop and then met with a GKTW representative to checkout.

One last ride before the trip home.

     GKTW provided us with a disc of the many photos taken during our time there, a free pass for all four of us to any park in Orlando (expires in a year), another star for Evan to take home and a week's worth of memories that we won't forget anytime soon.  Below you'll see my favorite pictures from the resort, but rest assured I'll be posting more soon.  Time to get back to the daily grind.  LOTS of photos below.

Disney Characters

Christmas in June

Pirates and Princesses Party

Horseback Riding

Universal Characters

Mickey Mouse

Day 353 - Trip to Orlando (Day 6)

     The day is quickly ending for our final full day here at the resort.  Like all the other days we returned to the condo to find a new gift for the kids.  Today's gift was a custom Candyland board.  This edition was specially made for Give Kids the World.  Out of fear of this board getting damaged I'll probably keep it under wrap for a while.

     This morning we started the day with horseback riding at the resort.  There is a small corral by our condo and they had the horses here today.  The kids loved it and they completed the experience with cowboy hats for Evan and Nolan.  The kids were saying howdy for the next hour or so.  After that we grabbed a quick bite to eat and made our way over to Disney Epcot.

     If you haven't been to Epcot the attractions are more geared towards education and cultural awareness than thrill seeking or nostalgia.  We rode as many rides as we could find.  Evan's favorite ride was the Frozen log ride because he got a little wet and mine was probably the spaceship earth.  Siemens, who is a major sponsor for Epcot, has a lounge for Wish kids so we got the elevator code and went up to relax and take in the sights.

The view actually overlooks the park, but the family was backlit from that angle.

     As we toured the park we tried to get pictures with as many Disney characters as possible.  Evan was hit and miss on these.  Luckily as we were nearing the end of our trip we ran across Snow White and Baymax at different locations and Joy and Sadness were convenient so we got photos with them.  That's not to say Evan and Nolan aren't fans of Inside Out, only that Evan was pretty committed to getting back to the resort for fishing and swimming before the rain moved in.

Nolan was a little nervous around Snow White.

     Like it says above, when we got back we changed into our swimming attire and headed over to the gazebo pier to fish.  Let's just say I'm not much of an angler, but we were fortunate to run into some teenagers from Texas who had been fishing most of the day.  They were happy to let the boys move in on their turf and helped them each catch a fish.  If we had relied on my ability to catch a fish we might have been there a while.  With that out of the way both kids basically made a beeline for the pool area.

Heading to the pool.

I can assure you we didn't catch any fish with me assisting.

     What does tomorrow hold for us?  We're not sure yet.  Sea World is tentatively scheduled; however, rain is in the forecast and the kids are running on fumes.  I talked to Evan a moment ago and he indicated he's ready to get back home.  We'll see.  I'd hate to waste these tickets that were gifted to us and Cristy would like to see a show or two there.

Getting ready for the Frozen ride.

     Enjoy these pics from today below.  I'll likely dedicate one blog entry to the pictures from the resort.  I don't know what to expect, but I'm assuming there will be some really good ones.  My feet need a vacation from this vacation.

Nolan was a chatter box and had the staff laughing the whole time.

Yee-haw!

The landscaping and scenery at Epcot was very nice.

Joy and Sadness.

The boys and Baymax.

We think the photographer stuck her tongue out so Nolan copied her.