The Rest Of The Trip

To finish up Saturday, we hung around Give Kids The World (GKTW) village..they have a model railroad that had Reg drooling, but what really tickled him was how much Ravis loved it too.  He watched it for at least an hour and had a fit when it was time to go on to something else!

On the train as we go around Amberville!

The next day, Sunday we ventured over to Disney World and started at the Animal Kingdom.  Tillie was all decked out in her princess dress!  Emily did have her change a little later as it was hot!  But she looks beautiful!

We went on the Safari and saw lots of animals!  Tillie is standing in front of the reptile area in her princess dress in the picture above!

Tillie got to meet lots of Disney characters..the first one is Rafiki, from The Lion King!

From the Animal Planet, we then headed over to The Hollywood Studios.  With the exception of a few rides, this seems to be more geared to adults!  They do have the Toy Story ride which was great fun! 

 Here is the entrance to Pixar and the Toy Story ride!  Still one my favorites..Tillie rode with Grandma and we were shooting away at our targets.  She got over 13,000 points!  Way to go Tillie!

 And yes...Tillie went on the Hollywood Tower Hotel ride...perhaps not one of our better moves!  She wanted to go on it, but we should have taken the bail out!  She wasn't afraid of the drops, but the darkness and the scary storyline!  But she did it!

Back to GKTW and to the pool!  The weather throughout the whole trip averaged around 85 degrees! 

 Go Tillie!!

 Ravis liked the pool too!!!  Here he is with his Daddy!

On Monday the Maier's went to Seaworld..Reg and I didn't go with them.  We rented a car and went to the Kennedy Space Center..here are a few pictures...

 I think this is the pearl Tillie got for me..

Reg and I at the Kennedy Space Center.  Pretty darn cool!

 On Tuesday we spent the whole day at the Magic Kingdom!  It was our hardest day, but lots of fun.  We were there for 12 hours and the kids were great!  There are tons of pictures...I'll try not to post them all! 

This Tillie with Repunzel, from the movie Tangled.

 When we first got there they were clearing the streets for a parade.  What was really cool was that the Disney Cast seems to recognize the button that the Make A Wish kids wear.  Several of the characters focused in on Tillie and waved specifically at her!  It was wonderful!

 Here we all are at the Magic Kingdom.  Tillie was SO excited to see the castle!

 Chip and Dale and Ravis!  He LOVES the characters!

 Giving a kiss! 

 Tillie's turn!

 Trying to remove The Sword In The Stone!

Tillie the poser!  This is her newest princess dress and crown!  A funny side note..Make A Wish recommends you pack an extra duffle bag for the souveniers and gifts...they weren't kidding..Emily and Anthony ended up buying an extra suitcase and they filled it!  And bless Alaska Airlines..They waived the baggage fee!

 Tillie and Tinkerbell! 

 We stayed for the Mainstreet Electrical Parade!  It made for a loooonnnng day, but so worth it!!

 The castle at dusk

 Pete's Dragon

 Ravis and Tillie...they really love each other and it's so sweet to see!

Whew...are you as tired as we were??  When we got back to our villa at GKTW, Ravis climbed onto the couch that was his bed and wanted to go right to sleep..Poor kid needed a diaper change and PJ's, but then he went out fast!  We all did!

On Wednesday we headed back to Disney to visit Epcot Center...

 This is inside the VIP area...Through Make A Wish we got to go in here..it had all sorts of fun stuff.  This is a video screen where you can move things with your hands...kind of NCIS, Los Angeles!!!  :)

 We found several characters here at Epcot and with Tillie's pass, we moved right to the front of the line!  That was awesome! 

 I noticed I cut off the heads on some of the characters..oh well...it was them or the grandkids!  Hehehe..

 Outside the "Finding Nemo" ride

After our time at Epcot we headed back to the Magic Kingdom.  Tillie wanted to ride Splash Mountain and Pirates of the Caribbean was open! (It was closed the day before)  Plus we had some picture business to attend to!

Tillie and Emily on Splash Mountain!

 The Magical Castle!

 As we were heading to the park exit, we needed to stop and take care of pictures..Emily was lamenting that we didn't see any of the princesses and get pictures!  Well.......the princesses were right by the photo place and with the trusty button and pass, Tillie was taken to the front of the line!

Here she is with Princess Aurora from Sleeping Beauty

 Cinderella

 And Belle, from Beauty and the Beast!  One of Tillie's favorites, after Ariel.  Talk about a perfect ending to a perfect day!

Our last day, Thursday May 3rd was spent at the GKTW Village.  Our flight didn't leave until 6:15 so we had time to kill.  We had to be out of the villa by 11AM, but were more than welcome to hang out at the village.  We spent a good amount of time at Amberville where the railroad is.  It was the hottest day of our trip, so we were grateful for air conditioned buildings.  One of the things we needed to do was Tillie's star!  The kids each get a star and we put Tillie's name on it.  At the castle, the Star Fairy takes that star and it ends up on the ceiling of the castle...

Tillie putting her star in the "magic" box, waiting for the Star Fairy.

 The Star Fairy..there are lights wrapped in the vines and they go off so that Tillie can "see" her star going off to sky...(ceiling in the castle)

 This is Tillie and Callie.  Callie's family traveled from Seattle the same days we did.  We ran into them a lot and it was fun for Tillie.

 The owl in the magic pillow tree..

 They are "shaking" the tree, trying to make the pillow fall out!

 The pillow came out and here's Tillie getting ready to slide..on the outside is a snoring tree.  This is the inside.  Tillie was trying to wake it up!

 Our flight left at 6:15PM on Thursday and we arrived at the gate just as it was boarding...oops..once again, Tillie and Ravis did great on the airplane.  They were pretty tired, so they were content to sit and watch movies and play games.  Ravis even conked out for a bit.

We can't say enough about Make A Wish and Give Kids The World! They truly provided a much needed break from cancer and chemo and ports and sleepy medicine, etc! Reg and I had a blast tagging along! 

Today is Monday, May 7th and Tillie had her monthly appointment.  Her Absolute Neutraphil Count (ANC) has been elevated for a bit and the doctor is working at getting it down.  What that means is her immune system is working just a bit too well..  :)  There is a range for the ANC and that's the goal.  Tillie goes back in 2 weeks for another blood draw to check her numbers and if the ANC is still elevated, then Dr. Irwin will adjust her oral chemo. 

Thank you for reading this long post!  We thank all of you for your continued prayer and support for Tillie!

Make A Wish Trip Friday & Saturday

The Maier family, along with Reg and Carolyn, Grandma and Grandpa to Tillie and Ravis boarded flight 18 to Orlando Florida around 8:15AM, Friday April 27th. We got to board early since we had the kids..At first Ravis was a little tenative about sitting in his seat and having the seat belt fastened, but he settled in fairly quick. Being that we boarded early, we had to wait a bit before take off..and the kids did great during take off! They did great the whole flight! It was quite impressive...

Ravis and Tillie, waiting for take off!

One tired little traveler..Neither Tillie or Ravis slept on the plane..and they even had to get up pretty early in the morning..

This is inside the Gingerbread House at Give Kids The World (GKTW)  This is the main dining areas.  There is an all day ice cream palor open, a Boston Market and you can have pizza delivered to your villa..

 There is also an all you can/want to ride carousel!  This is a big hit for Tillie

Ravis has been enthralled with all the characters...here is one at GKTW

Our first night at the resort there was a pirate and princess party...pretty awesome!

There is an all day/night ice cream parlor at GKTW...Here's Tillie at 10:30AM having a snack!  Oh, they also have some breakfast stuff...like bacon!

Grandma shot this picture..probably my favorite so far!  Tillie and Ravis really love to be with each other.  It's wonderful!

Tillie's Make A Wish Journey

On Saturday, April 21st, the folks at Make A Wish threw a send off party for Tillie, a week prior to her trip to Disney World in Orlando, Florida!  They brought pizza and cupcakes and pop!  They also brought gifts for Tillie, including a Belle (from Beauty And The Beast) dress, and a backpack filled with all kinds of goodies..useful for the long plane ride...

 All the pizza!!

 

Tillie loves cupcakes!!! Here she is with with blue frosting all over!!

Sugar high!

Grammie and Pappa, Grandma and Grandpa and Uncle DJ came to the party..So did Frank and Lori Anderson along with Auntie Mel and Greg and Trinity and their kids...

Grammie, Tillie, Pappa and Emily

 Frank and Lori Anderson

 Grandpa, Tillie and Frank

And of course, Ravis!  He also got a gift bag with a truck and some activities for the plane ride!  Now if he would learn to use the crayons for coloring and not for eating!!

 The new way to eat pizza! 

Watch for our updates from Florida!

Update......

It's been awhile since we have updated Tillie's blog.  So, here it goes...We'll start with pictures from Christmas!  Here is Tillie and Ravis and Santa Claus!  They both had a great time with Santa and he was an awesome Santa!  Just look at those rosy cheeks!

 The week before Christmas, Auntie Eliza, Emily, Tillie and Ravis came down to Shelton to Grandma's house to make cookies.  This was the second year we did this and we had so much fun!  We took the cookies, fudge and almond roca to the Hearn Christmas party!  Yummy! 

Here is Tillie and her Great-Grandma Linda looking at all the ornaments on the tree!  Truly a special picture!  The generations of the Hearn Family..

 Here is Ravis and his Uncle Levi

In January, Tillie had a 3 day hospital stay with an ear infection.  Tillie struggled mid December through Mid February with some respiatory problems.  Also her ANC (Absolute Neutraphil Count) was all over the board from being very low (thus the hospital stay and ear infection) to being too high.  The highlight of her hospital stay, well, in Grandma's opinion was the visit from Mike Carp, Michael Saunders, Rick Rizz and the Mariner Moose to Mary Bridge!  Here are a couple of pictures.  This day was the first day Tillie was able to be out of her room.. 

And here is Tillie with Mike Carp!  She got an autographed baseball from him!  She also got to play hide and seek with the Moose!  A fun day except Grandma was stuck at work!!  But Rick Rizz gave Emily a signed picture for me!!

Tillie is having monthly maintenance treatment.  Because she was sick, her oral chemo was cut back for awhile and she was going in weekly for lab checks.  Her ANC is still a little unstable, but on the high end. 

And starting April 27th, Tillie's Make A Wish adventure to Florida and Disney World begins!  Reg and I are tagging along, so watch for updates from Florida!!

Fall Thanksgiving

This season always draws me to introspection and thankfulness. Tillie and I had a mini fall celebration today. I had originally hoped to take her and little brother Ray to a pumpkin patch but it didn't end up fitting into the day. Instead, just Tillie and I had an outing to the local Fred Meyer, where I lifted her into the bins of pumpkins. With smiling strangers passing by (and my camera clicking away), we discussed what we liked about each pumpkin, how they smelled, and established her as the Pumpkin Princess.

This beautiful, funny, inquisitive little girl never ceases to delight me and today especially, as we laughed among the bright pumpkins, my thankfulness overflowed that she is my niece and that she will survive leukemia. Tillie is now in what is called the "maintenance phase" of her treatment; a long and necessary period to ensure that the leukemia doesn't return. She takes oral chemo meds at home and makes monthly trips to the children's oncology ward (which includes sedation at times, her least favorite part). This phase will last until July 2013 -- she will be almost 7 when we will celebrate the end of her chemo treatments.

But today, we forgot about all of this. Today, she was just a little girl playing with pumpkins. Today, my thankfulness -- for her, for her survival, and for the multitude of people that have rallied around her -- is boundless. Thank you, thank you.

Updates

Just want to catch up everyone who's following the blog. Tillie's hospital stay from the ear infection lasted 7 days. Those last couple of days you knew she was getting better as she was not content to sit still! :) When she went to her next appointment the following Monday, there was concern her port was getting infected. Her white count and Absolute Neutraphil Count (ANC) was virtually nothing. The decision was made to de-access her port, switch her to oral antibiotics and then install a catheter in her side to give her a growth hormone to artifically increase her white count and ANC. She went in the next day for another shot and her counts have come up to acceptable, fighting levels! The next week started her final phase before maintenance. This phase involves a 3-4 day hospital stay every other week through the week of June 13th. Maintenance will be a once a month treatment! We can't wait. During these hospital stays, she receives a 24 hour drip of a high dose chemo. That's followed by a "rescue" drug..Folate. Then when her system has cleared the chemo, she's able to be released.

Here are some pictures from Easter Sunday!

Finding the eggs..
Eureka!

Ravis...Bunny Boy!