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!

Here are some current pictures for your enjoyment!

Easter Tillie! Still in the hospital as of April 17th. White blood count was very low this week and is slowly coming back up..emphasis on slowly!

Tillie loves Little Mermaid and the volunteers found her a brand new toy of Little Mermaid to keep! In the ER April 12th. She was miserable, but so very willing to pose!

Getting a transfusion April 11th

Steroid hangover..her cheeks were very chubby and she had an appetite! It's gone again :(

At Red Robin..if you look at the above pictures, you'll notice her hair has fallen out again. Fortunately she's just fine with that.

This extended hospital stay has been hard on the Maier Family. Emily has stayed with Tillie in her room every night except two when Grandma Carolyn stayed. If this goes into next week we will need daycare for Ravis. We thank you all who have helped out, whether financially or in being available to visit, call, pray etc...We couldn't do this without you!

Prayers for our Tillie Girl

After a transfusion on Monday due to low, low blood numbers, Tillie began to feel ill & have pain. Her momma, worried about her rising fever, took her into the ER last night. She has an ear infection & is on IV fluids, remaining in the hospital today & tomorrow for sure. Right now we need your thoughts & prayers for two things:

1. That her fever go down -- if it reaches 101, she will stay in the hospital as long as it takes until her white blood cell count goes up.
2. That the site of her last 2 lumbar pokes do not become infected -- they are currently red & being monitored closely. 

Thank you for being a part of Tillie's support team!