Day 350 - Trip to Orlando (Day 3)

     The family and I just got back from the Star Wars fireworks show at Hollywood Studios, gave the boys quick showers and now I'm relaxing on the bed with my laptop and Golden Girls on the bedroom TV.  Life doesn't get much better than today.  I'm exhausted, but we did everything we set out to do and then some.  Doesn't give us much time for rest and recovery, but I'm sure adrenaline will get me through tomorrow.  It's a very exciting time here.

Prior to our meeting with the Captain.

     We woke the boys up a little early and headed over to the Magic Kingdom around 7:30 for our meet and greet with Jack Sparrow.  Getting there earlier helped us avoid some of the mob and knowing our way around also made us more efficient than the first day.  The actor portraying Jack Sparrow was great with Evan and also kept Nolan engaged (or as much as you can a two year old).  The Disney photographer took really good pictures and captured all the high points of the meeting.  We followed that up with a trip on the Pirates of the Caribbean ride and a little shopping in the gift shops.  In order to make sure the kids stayed upright the entire day we made our way back to the resort for a little rest.

     After a short nap and some much needed time out of the sun we made the short drive back over to Hollywood Studios.  There we packed in as many attractions as we could before the fireworks show.  Evan loved the Star Tours ride, Nolan liked the Muppet 3D show and I enjoyed the Toy Story ride.  We took pictures with Kylo Ren, Chewbacca and BB-8.  In the very unlikely event that anyone from Disney reads this blog I just have to say that the staff is top notch.  I'm sure they make every child feel special, but when they see our lanyard or one our buttons they go above and beyond to accommodate Evan.  It's very nice and I wish there was some way I could repay them for helping make this trip so special.  On a slight side note, Kylo Ren terrified Nolan, which made the whole experience more hilarious to Cristy and me.  We'll post the best pictures from that in another blog.

     Tomorrow Mickey and Minnie are coming here to the resort for pictures and from there we're going to make our way over to Universal Studios for our first day there.  Tentatively we're thinking of Universal for the next couple of days, back to Disney for Saturday and if our bodies allow it a Sunday trip to Sea World before heading back.  Evan still has several activities that he wants to do here at the resort, in addition to our daily trip to the pool, so we'll have to stay on the go the next few days.  As anyone who's been here will tell you it's tiring, but so worth it when you see the kid's faces.

Day 349 - Trip to Orlando (Day 2)

     The family and I are blogging from a line in the Magic Kingdom.  Thank you from the bottom of my heart to whoever got us the FastPass+ tickets.  It took us one attraction to figure out how to get ahead in line, but once we did we never looked back.  The crowds down here are humongous.  Add to that the heat and clear skies and I'm amazed we hung around as long as we did.  We got into the park around a quarter to 10 and moved pretty slow initially since everyone was crowded up on Main Street trying to get pictures and see the early shows.  Once inside we found our footing and got acclimated it was a more enjoyable time.  For our health and sanity we left around 2:00 to get back to the room, cool off and enjoy the pool here.

Upon first entering the park.

     Tomorrow we're heading back for Round 2 beginning our day at the Magic Kingdom again for our meet and greet with Jack Sparrow.  Because Evan received Methotrexate yesterday his skin is very vulnerable right now and despite our best efforts with sun screen he's a little redder than we'd like to see.  That said, we'll make a last minute call on where to go following the meet and greet once we see how his body looks in the morning.  If he's still red we'll likely do Magic Kingdom and then head to Hollywood Studios since they have several indoor attractions; if his skin has rebounded we'll probably head to Epcot.

Must have surprised Nolan.  He enjoyed this ride very much.

     Today's pictures are kind of lacking in quantity and quality.  The heat wore us all down as you'll see.  It was mid-to-high 90s here and tomorrow they're calling for around 93.  I can't recall the last time I've looked forward to rain, but the forecast calls for afternoon showers and I'll gladly do a rain dance tomorrow if that helps.  Part of our package allows for some form of complimentary picture or pictures taken by the Disney staff.  I'm a bit unclear, but if there is cost associated I'm sure we'll pay so that we can better remember the trip.  Point is, the Disney photos are a bit better and once we've acquired them I'll post them in a separate blog entry.

They were all blurry, but this was the best one.

     Evan really enjoyed the rides, as did Nolan.  We closed out the day with the Haunted Mansion.  Not sure if that one really stuck out in their minds because it was last or they genuinely liked the ride, but they both said that was their favorite one.  We got a chance to visit the Wish Lounge for a quick cool down and to familiarize ourselves with the meeting location tomorrow.  Should be another great and hectic day.

Just returning to our villa.

Welcome to Disney!

Personalized Mickey hats compliments of Gina.

Stopping off at the Wish Lounge.

"Surfing" back at the resort.

Ferry ride back to the car.

Day 348 - Trip to Orlando (Day 1)

     Greetings from Florida to readers of Evan's blog.  We left this morning around 6:00 so that we could try to beat traffic and take advantage of everything this Make-A-Wish opportunity has to offer.  The kids were both super excited last night and I had a feeling the trip down here might be a bit longer than they wanted, but other than a few car sickness issues we arrived relatively quickly.  We pulled into our resort, Give Kids The World, around 1:30.

Getting settled in.

     Upon arriving we had a volunteer meet us to go through orientation.  This involved a tour around the resort grounds, an explanation of our tickets and perks, gifts for the kids and shuttle service to view our villa.  I'm humbled and honored to have organizations like Make-A-Wish and Give Kids The World working on our behalf to make this experience so memorable.  If you're not familiar with the great things Give Kids The World does I'd strongly recommend you view the link below.  They work with about 276 charity organizations to help children with life threatening illnesses and while Make-A-Wish is their largest and most well known charity partnership, it's far from the only one.

About Us - Give Kids The World

Our volunteer, Mrs. Claire, showing us to our villa.

     The resort has putt-putt, an arcade, cafeteria, pools, movie theater, horse riding and a fishing pond just to name a few amenities.  Of course this is all fine and good, but the part that really took me back was the personal touch they provide for each child.  For example, Evan was given a reflective star that he could personalize and hang on the ceiling in their Castle of Miracles.  To date their are over 135,000 stars on the ceiling of the chapel and growing.  One story that touched us was about a child who lost his battle, but his mother returned later and got married under his star.

One of the ceilings in the chapel that contains stars.

     In addition to the star they also allowed the boys to make custom pillows to keep.  The staff is predominantly volunteer driven and everyone goes out of their way for the kids and tries to make them feel special.  It's uplifting to see kids of all walks of life and with various ailments get to stay in a place that allows them to feel normal.

Feeling like royalty.

     Tomorrow we're getting started with the Magic Kingdom.  We'll spend the day there and try to let the boys do as much as possible.  This being my first time inside the parks I don't know what to anticipate in terms of parking, crowds, etc. but we've had several people give us pointers.  Trial by fire has always been the most effective way for me to learn so I'll be much more educated tomorrow evening.  Closing out with some more pictures from today.

Flirting on the carousel.  This kid has never met a stranger.

Wishing well in the castle.

Another ceiling area in the castle.

An interactive kiosk that helps create their pillows.

Enjoying the "Halloween" party for our first night.

Super hero face painting.

"Hurry up Mom and Dad!"

Water time with pool #1 and splash pad area.

Post paint with his balloon sword.  

Day 346 - The Summer of Evan

     As I noted in the last blog Cristy and I are going to try and fit as much fun as possible into this summer.  I know you can't really make up for lost time, but we're going to give it a shot anyway.  Evan's last day of school was Wednesday and since then we've spent the last few days at Chucky Cheese's, Monster Mini-Golf and today at the Renaissance Festival.  The weather today was warm, however it's nothing like Disney World this time of year.

Hole #1 at Monster Mini-Golf.

     With the weather forecast expected to be hot and sunny next week we also need to take special care to keep Evan covered in clothing and sunscreen.  His Methotrexate seems to be acting with another drug (likely the Voriconazole) and making him even more susceptible than normal to the sun.  We put SPF 70 lotion on him daily, but even that is a losing battle if we're not re-dosing constantly.  

They never look in the same direction at the same time.

     The only notable health update is that Evan's Voriconazole test came back and they've asked us to increase his dosage.  It's hard to zero in on the correct dosing because of the number of drugs that he takes that are potentially nullifying it.  We're set to meet with ID again in mid-June for another follow-up test.  It's important that we don't overdose because of the side effects this drug can cause; notably temporary blindness and hallucinations.

Got him to slow down long enough for a picture.

     We received a call from Evan's orthopedic surgeon last week.  Our hearts dropped initially as he typically only calls with bad news.  To our surprise he wanted to use Evan as his case study for a medical conference he was attending later this summer.  We of course consented because any information gleaned from Evan's treatment that could help another child should be used to the fullest extent.  Cristy and I got a good laugh afterwards because it seems like Evan is an outlier in most treatments and seems to show symptoms from even the rarer side effects of many drugs

  

Mama bear making sure the boys had a good view of the fire-eaters show.

     Next week I would anticipate a new blog entry almost daily.  With this being the boys first trip to Disney we're going to try and capture all the magical moments we can.  Adding to the fun is Make-A-Wish's contributions; from the resort to the tickets to setting up the meet and greet with Jack Sparrow.  Should be an exciting time that the boys aren't soon to forget.  Thanks again to MaW for making this trip possible!

     

Robin Hood in training.

Showing off some of his Monster Mini Golf winnings.

Our annual Renaissance Festival picture. 

Enjoying a busy day at Chucky Cheese.

This slide is much faster than it looks.

Day 342 - Saying goodbye to kindergarten

     Tomorrow marks the final day of kindergarten.  It's bittersweet to watch my son move on to the next chapter in his life, but this day was anything but guaranteed nine months ago.  The last year has been tough on us for a number of reasons.  Once Evan was healthy enough to finally attend school in person one area we didn't have to worry about was his teachers.  I'd like to dedicate this blog to Mrs. Young and Mrs. Sheevy.

Leader in Me Award for promoting cooperation and teamwork.

     For those who may not know Evan still has mobility challenges, although it's improving.  For a large portion of the year we've relied on his wheelchair and walker.  In addition to that the chemotherapy typically makes him susceptible to skin irritation, sun burns and obviously infections.  Without Cristy and I there these two teachers have assisted Evan every step of the way, from applying sun screen daily to wheeling him around the campus as needed.  Did I mention they did all this while helping all the students in class grow scholastically?  We also have a fair amount of appointments weekly that could have caused problems, but everyone has worked to make sure it hasn't been a detriment to Evan.

     When Cristy met with the Hayes administration, school nurse and other Cobb County school officials there were several options discussed about Evan's future.  Do we allow him to attend later this year?  Hold him out a whole year?  Home school him?  Once Evan was healthy enough to potentially attend in February I was very apprehensive about him joining his classmates in person and posted a comment about it on the blog at that time.  Mrs. Young, who has kept constant contact with us since day one of school, actually made some comments to Cristy while visiting one day that ultimately won me over.  From that point it was just a matter of consulting with the medical team and deciding on a day for him to return to being a kid.

     Thank you from the bottom of our hearts for all the extra attention you were able to give Evan.  We will always look back on this year and think fondly of the attention and care you provided for our son.

Honor Roll for the past nine weeks.

Day 339 - Walk for Wishes 5K

     This morning the family and I completed the Walk for Wishes 5K.  It was a 5K more our speed, without the need for timers or people wearing running shorts that are way too small.  The kids had a blast as there were plenty of things to keep them busy.  We hope to be a part of this race for years to come to help show our gratitude and to contribute towards the wishes of multiple children.  Stone Mountain made for a great venue because of the proximity to the interstate and ample parking.

One day we'll learn how to take a picture in the daylight.

     For the first time since Evan was diagnosed we don't have another appointment (besides PT) for a few weeks.  Besides Disney World in a couple weeks Cristy and I are already planning out a number of things to do once Evan gets out of school.  Because of Evan's challenges and hospital stays last summer none of us really got to enjoy it in 2016.  We're going to try and make up for lost time without jeopardizing his health (or our finances).

Opening his Jack Sparrow invitation from MaW.

Nolan KO'ing Daddy.

Pictures with some of the 501st storm troopers.

One of our few photos of Stone Mountain.

The kids were thrilled hanging with the storm troopers.

Hanging with the Mellow Mushroom.

Dancing with a few storm troopers.  We couldn't keep the kids away.

Photo courtesy of Nolan during the walk.

Another Nolan selfie.

Racing during PT.

Ball pit from PT.

Evan jousting with Mommy (Daddy assisting).