Tyson's Brave Battalion

Tyson's Brave Battalion
Things don't go wrong and break your heart so you can become bitter and give up. They happen to break you down and build you up so you can be all that you were intended to be.” ~Samuel Johnson

Friday, February 22, 2013

Clinic Today...short and sweet

Our visit was short and sweet.  Everything looks good and they aren't changing any medication doses this time.

 Playing games of course...tonight he wanted me to take his temperature...when he didn't have a fever he said, 'darn, I like having a fever, then I get to play video games every day'. he he! ohhh dear.
They accessed him, pulled the blood, and administered the vincristine all at once so he didn't have to get tegaderm on again. AWESOME!!
For my records: today Ty weighed 17.5kg, (38.5lbs) that's up a little from 17.0 last month!  Ice Cream for breakfast in Florida must have saved the day! He is also a little taller! Yay!  He is 100.5cm which is about 39.6 inches.  That explains why he made it onto most of the 40" rides but not all of them, it depended on how strict the attendant was.
Thank you thank you for dinner!!!

Update: Monday Feb 25
Ty's steroid hunger came on pretty quick this time.  It is funny cause his cravings are exactly what they were last month.  I'm surprised he isn't gaining more weight cause he sure likes to eat on steroid week.  He must really not eat much the other three weeks! 
 For breakfast, lunch, dinner and in between Ty wants frozen Kirkland cheese pizza, no cheese can be melted over the edges, it has to be completely covered in parmesan, and it must have exactly 5 pieces of pineapple on it with a liddy cup of chocolate milk. (Oh! oops!  That piece has 6 pineapples! whew, I'm glad he didn't notice!)
  So far today he has had 6 pieces, and I've refilled his cup (about half full) 3 times.  He also had a bowl of pineapple, 3 carrots, some chocolate chips and a couple of cookies.  He's been pretty cranky on and off and wants to sit on my lap all day when he's on steroids, but really he is doing so so good!  We are so so thankful right now!
Always praying for our cancer buddies.  And asking a special prayer for our cousin who is having brain surgery tomorrow to remove a benign tumor. 

Tuesday, February 19, 2013


We have hundreds of pictures from Tyson's Make-A-Wish trip.  I don't even know how to organize it into a blog post or where to begin...I can't possibly cover it all so I'll post our favorites. We had the funnest week ever!!
Getting ready...
 We packed A LOT of suitcases and backpacks full of games and snacks for the 7 hour plane ride.
 We got up at 4:30am to make our 7:00 flight.  The plane ride was LONG but not too bad.  On the second flight from Phoenix to Orlando we stayed on the same plane but we were assigned different seats, all separate all over the plane.  The flight attendants were really nice about at least getting the littlest kids' seats traded so they were sitting by someone.
 The boys played DS for a lot of the plane rides.  It was torture when the 'turn off electronic devices' light was on.
 We got to GKTW village at about 5:00 Florida time.  Let me introduce you to the most awesome, magical resort on the planet!!  It is a resort built and maintained specifically for wish kids from all over the world and they do everything possible to make it the most magical, care-free vacation ever. 
We were checked into our villa, which happened to be both sides of this fairytale themed twin-house because our family is a tad large...and you can kind of see our 12 passenger rental van which we loved!  There was a pile of welcome presents and snacks on the table for the kids, and the kids bathroom was huge! complete with ice cream scented soaps and shampoos and a jacuzzi tub.
 Then we ate dinner at the Gingerbread House restaurant, but we didn't stay there long cause the kids were very anxious to go...
 Swimming!! at the 'Dive In' movie.  We watched Brave on the giant screen while we swam.  We did get a little distracted on our way to swimming though...between dinner and swimming we...
 Played at the life-size Candyland playground...
 Explored the Castle of Miracles where Ty will place a star later...
 Met Mayor Clayton who will tuck you in at night if you request...Ty was happy to just give him five...
 and Ms Merry who will also tuck you in at night if you request...
 Went trick-or-treating...
and had ice cream!  That was all on Monday night!

 Tuesday morning we had ice cream for breakfast!!
 Along with a lot of other tasty items at the Ice Cream Palace
 We had to take a ride on the carousel before we left for Universal Studios
 Tyson wanted to see Harry Potter World first much to our delight...we got there first thing in the morning so it wasn't terribly crowded yet.  We actually went to Universal on Tuesday and Friday so I'm going to combine those two days.
They loved the candy from Honeydukes, we even got a chocolate frog, chocolate wand, and every flavor beans.  They had everything in there you could imagine, it was very fun to explore.
Tyson LOVED the Flight of the Hippogriff roller coaster, we rode it several times Tuesday and 5 more times when we went back on Friday.
 The big kids (me included) loved the ride in the castle, you get to tour the castle first while you are in line, and since we were in the VIP line we got to see a corridor full of talking pictures that isn't part of the normal line. 
 We discovered on Friday when we went back that we could take the little kids in with us who aren't tall enough for the ride and put them in the child swap room so they got to see inside the castle!  They watched Harry Potter with one parent while we rode, then we swapped.  Ty was very interested in the movie and didn't want to leave so dad and Brooke and Brenna went to ride a big dragon ride while we watched a little more. 
Of course we had to taste the butterbeer and pumpkin juice!
 Dr. Seuss Land was next and Tyson loved the fish ride the best, you could drive your fish up and down into streams of spraying water, we rode that one on Tuesday and a couple more times Friday
 They also had a fun carousel...and a couple more rides that the littles could go on.
My slow camera missed Merin giving the cat in the hat five...
 We also rode the ET ride a few times because Merin and Tyson both loved it
 And Tyson did the Woody the Woodpecker roller coaster a couple of times
 The Jurassic Park section had a splash place and a huge playground so we let the big kids go on some big rides while we played there.
They had a section where you spray the kids above who are spraying you back, Ryan and Tyson thought that was awesome...and got soaked.  Luckily it was really warm Tuesday and Friday.
We saw a short but fun parade
 Tyson liked the 3D virtual Despicable Me ride...the rest of us were a little green
 Spoiled with his giant cotton candy
 Universal has a big Curious George splash place where the littles played for hours Friday while the bigs rode big rides
 Curious George land also had a huge ball factory with ball vacuums and baskets and shooters, all of the kids loved that place.
Ty also loved the water slide in the Fievel Goes West playground
 We loved Universal so much that we went Tuesday and back again on Friday.  Luckily those were the two best weather days too.  Tyson and Ryan love their Minions.
 Tuesday night we swam again at the village
Crossed through the Candyland playground to get to our villa, and ordered Boston Market and Pizza for dinner which was delivered right to us!  It was awesome!
Friday night Ty fell asleep at Universal right on dad's shoulders.  He fevered that night and we really went back and forth on whether or not we needed to take him in.  We REALLY didn't want to spend the night in a Florida ER and have the possiblity of going inpatient there.  Merin had been feverish so we knew it was probably whatever Merin had but we ended up calling PCMC and they told us to go in.  You just can't risk it when there is a central line in.  So Brady took him and they were really good, Brady said it was a nice hospital and ony about 5 minutes from GKTW.  His counts were good *whew* so they gave him a bag of fluids and some rocephin and sent them home. Yay! they got back to the villa at 2am, ate some pizza and we were very kind and let them sleep until 8am :)  for my records...WBC 4.91L, RBC 3.67L, HGB 11.2, HCT 33.8L, PLTS 197, ANC 3500! His chest xray didn't show anything, and his flu/rsv swabs were negative. Enough of the medical stuff...Tuesday and Wednesday we went to Magic Kingdom and spent a little bit of time at Hollywood Studios.
 We had breakfast at the Gingerbread House Wednesday morning. They have lots of volunteers there serving food, making waffles to order and carrying trays for everybody.
Minion got his own seat at breakfast.
We headed straight for the Buzz and Woody ride in tomorrowland when we got to Magic Kingdom.

  Then Ty got to meet Buzz Lightyear. He was kind of being shy, that was the first character greeting we did and he wouldn't get too close.
 To get on the rocket ride you go way up in an elevator and fly rockets way up in the sky.  Ty loved that one, we did it more than once.
It's a Small World...
 Magic Kingdom is a lot of fun for the littler kids cause you can ride a lot of the rides together as a family.  There was only a couple of rides that Ty was too short to go on.  His favorite roller coaster at Magic Kingdom was Thunder Mountain. 
 Dumbo ride...and he loved a roller coaster in this section called the Barnstormer.
 They had a sword fight with a lady at the Pirates of the Carribean gift shop...which must have been an evil plan to get our kids to want swords cause we left that gift shop with two shiny new swords. :)
 After Thunder mountain (splash mountain was closed for repair) we saved ourselves a spot for the parade.  Ty got lots of high fives from lots of characters.
After the parade we stood in a long line to meet some princesses which Ty was not happy about.  So he went with Ryan and dad to get a balloon and some food.  When we were done meeting princesses the clouds were quite ominous so we all had a break in the VIP wish lounge that is just for wish kids.  We stayed in there until the downpour let up a little bit, then we got out the umbrellas (if you are planning a trip to Orlando take rain gear!)  and braved a couple more rides.
 We had to do the Buzz Lightyear one again of course.  That one was fun for everybody.
And since we were in Tomorrowland and the rockets were still going even in the rain, we watched the beginning of the fireworks show from the rockets.
We finished watching the fireworks, took a few more pictures and went home for some more Katie's Kitchen delivery food compliments of Boston Market.  Yum!
Thursday morning we goofed around at Give Kids the World Village for a while before we went back to Disney, sword fighted in our villa... 
 Played in a cute miniature house

 Had some more ice cream of course!
 Met Belle right there at the village.  Cinderella was there too, but we met her the day before.  Tyson wasn't about to meet any princesses, he was pretty funny about it. 

Tinker Bell did manage to get a high five out of him, but that's as close as he got to a princess.
 Also met Pluto
And Goofy rode the carousel with us!
 We had a photo shoot with Mickey at the village

It rained most of that day but we played anyway
 We bought some ponchos on our way to Disney
 We started at Magic Kingdom again and re-rode our favorite rides...this one is the Barnstormer
 And a Mermaid ride for Merin, we also got to meet more princesses today, including Ariel

 Here's Ty on his favorite..Thunder Mountain!!!
And he finally got to meet Woody!  He went right up and hugged him which was so cute!
 A couple more Woody pics...I love this pic!  This is Ty walking up to meet Woody
 We headed over to Hollywood Studios that afternoon and Tyson rode the Tower of Terror.

 He said it was kind of spooky but he loved the ride itself
 We all loved the Toy-Story Mania ride there which is similar to the Buzz one at Magic Kingdom, but it is 3-D and the shooters are funner
 We didn't stay long at this park, there wasn't a lot for little kids to do here and it was so rainy that day.  We made it back to the village in time to have Thanksgiving dinner at the Gingerbread House and then the rest of the night was Christmas!
 Decorated cookies at the Ice cream palace...
 Met Santa and the kids got to pick out a big present
 Had some more ice cream, how could we resist?
 Grandpa happened to be in Florida so he came to visit for a few...
 We did Christmas crafts and met some winter fairies in the Castle of Miracles
 And Emily danced with Ms. Merry
Friday morning we went to Ice Cream for breakfast again and then went to Universal which we already wrote about.  Universal was our favorite!!
Saturday Ty got to decorate a star for the star fairy to hang forever in the Castle of Miracles.  He was pretty tired from being up all night at the ER and was kind of grouchy about it so I told him he could play at Amberville if he wrote his name on the star
Look at all those stars!!!  Tyson's star is actually hanging in a well tower adjacent to this room
 If you look at the ceiling in this room it looks like you are standing at the bottom of a well
 Tyson's favorite place at Give Kids the World Village was Amberville
 He loved driving the boats which were located outside but you got to drive them from inside
 They have a little arcade style game room and nothing requires coins!
Some of the kids did horse rides today
 And some of them did the Dino-putt mini-golf
 They have the ultimate train set there and you get to push buttons to make the different trains, gondola, carousel, etc light up and go.
 Who can resist quarter free rides?
 Of course we had to get ice cream, and ride the carousel some more
 Then we headed to Sea World
 We saw the flamingos and petted the rays,
 Watched a cool dolphin training session and then fed the dolphins.  The rest of Sea World seemed huge and crowded and we really wanted to go to Sea World Aquatica which is a huge water park across from Sea World.  Unfortunately it was very cold and windy that day so we opted to go back to Disney.  The parking lot at Magic Kingdom was full so they sent us over to Epcot and said to ride the tram back to Magic Kingdom. 
 When we got to Epcot we decided to just stay there and see what the ride in the big Epcot ball was like. They have improved that ride a lot since we were there 15 years ago. We decided to look around some more and actually found a few more princesses there so we were glad we stayed. It wasn't nearly as crowded as Magic Kingdom must have been with a full parking lot. It was freezing though!
 The highlight of Epcot for us was talking to Crush from Finding Nemo.  It was interactive with the audience and he was so funny!  They also had a huge aquarium there that was really fun to look at.
 Ty was worn out!  Each day at Give Kids the World when we got home from the theme park there would be a pile of presents on the table in our villa for the kids.  This is a book that we can record ourselves reading, we got a few of them. They were so spoiled!  We all were!!
My favorite thing they gave us is a real Candy Land game that has everything from Give Kids the World Village in it instead of the 'normal' stops.  It is very cool!  I couldn't think of a way to have a more perfect vacation and we are so grateful to the many people who donate their time and hard earned money to Make-A-Wish and Give Kids the World.  It is a magical place!  It makes us want to move to Florida so we can volunteer there.  We owe a million thank yous to everyone involved.  Thank You!!