Time For An Update

 

Wow, it's been awhile since our last update...It's been a busy 3 months for Tornado Tillie! Our last post ended with Tillie starting kindergarten...She is taking Whitman Elementary by storm!  Tillie LOVES school!  It's all day, 5 days a week kindergarten!

You learn many games in kindergarten.  One is Red Light, Green Light!  Tillie lost that game!  She collided with a classmate and fractured her wrist.  It was a slight fracture and with chemo bones can become weaker.  She sported a purple cast for 3 weeks.  She was also at the clinic that day for a blood draw as her counts were dropping.  What that means is her ANC (Absolute Neutraphil Count) drops.  The neutraphil is the part of the white blood cell that attacks infection.  Later that night, Tillie ran a fever and the next day Emily took her to ER. 

Tillie's ANC count was zero!  Not good so she was admitted to the hospital!  Lest you feel sorry for her, don't!  She had a week of volunteers and arts and crafts!  Because her counts were non-existent, she was "confined to quarters."  So, volunteers come and play with her, bring toys, etc.  This is especially helpful to Emily because as Tillie is hospitalized, so is Emily.  She stays there with Tillie.  This happened in October and Tillie was in for a week.  She finally got to go to the playroom the day she was discharged.

 Tillie missed a week of school, but that was ok.  She is doing REALLY well.  Grandma gets to brag!  Tillie's at the top of her class!  She loves to learn and is excited to read!  Kindergarten seems to be the new 1st grade.

 

This picture is an example of the arts and crafts they have for the kids!  Tillie loves her arts and crafts!

Here's Tillie and Andi Pistay at Thanksgiving.  Two years ago Andi had Tillie help with the whip cream..Tillie freaked a little bit with the mixer!  This time she had no problem..I think we have a new tradition going on here!

And here, is a little sidenote! This little guy, Tillie's brother Ravis has also been a trooper through all of this. Often times his little life gets disrupted. This last hospital stay, Ravis stayed with his other grandparents, so he didn't have to go to daycare. Ravis is 3 now, and he's a little guy and doesn't talk much yet. But we've all noticed since Tillie's gone to school, he's talking a bit more. Funny thing is he knows exactly what's going on! In this picture he's looking at our digital picture frame. The pictures are from the Make A Wish trip to Disney World. When a picture of Ravis came up he said "Hi Me!" Hahaha! He's a great kid!

In October or so, Tillie knocked one of her top front teeth and the gum darkened.  Emily took her to the dentist and there was a pocket of infection in there, so an appointment was made to pull the tooth. Actually, they pulled 3 teeth..all baby teeth.  Her front two teeth and an extra tooth Tillie had...so this the before picture.

 Here she is with her goggles and laughing gas!

 AFTER!  All she wants for Christmas is her 3 front teeth..she'll only get two though!  Hahaha..the extra tooth doesn't have an adult counterpart!

 

We are so thankful to all who love and support and pray for Tillie and her family!  God is faithful!  

Happy 6th Birthday Tillie Anne

Today is Tillie's 6th birthday and tomorrow it will be 2 years since Tillie's leukemia journey began!   Leukemia is not something we would wish on anyone, but we have been blessed in the journey.  The people at Mary Bridge are INCREDIBLE!  Make a Wish is FANTASTIC!!  Give Kids the World, Disney World, Sea World, Alaska Airlines....WONDERFUL!!  Family..THE VERY BEST!!!  Most of all, the folks who have been praying along the way...INDESCRIBABLE!  Without your prayers and support this would have been a much harder journey.  Tillie's doctor often says that Tillie has exceeded all his expectations and she's always surprising him!!

 

Life goes on and on August 9th, Tillie lost her first tooth!  Apparently the tooth fairy was a little late and she paid interest!!  Hahaha!!!

On Saturday August 25th there was a walk for CureSearch for childhood cancer.  Because Tillie had a fever Thursday, she didn't participate.  The organization came to the clinic and for the kids who couldn't do the walk they brought them gold medals.  They let Tillie know proud they were of her for her courage in going through her treatment. 

A new chapter in Tillie's life begins on September 5th.  Kindergarten!  Tillie will be going all day/5 days a week.  It will definitely be a change for the Maier Family!  She is definitely ready!  I asked her what she wanted to learn and she said music and art!  She also wants to learn to read her own books and some math!  Look out Whitman Elementary, here comes Tornado Tillie!!

Finishing Year One of Maintenance

Tillie has finished her first year of maintenance treatment!!  One more year to go!  In June, Tillie's hair started to come out again..mostly on top and a little on the bottom.  The hair loss has been the hardest for Emily as it is such a stark reminder of Tillie's cancer fight!  Fortunately Tillie seems to be unaffected.  Tillie starts kindergarten next month and I asked the doctor how kids deal with perhaps being teased about it and he said generally at that young age it's not a problem..and if needed, the social worker and child life specialist will visit the classroom and talk to the kids about what's going on with Tillie.

Here are Tillie and Ravis with their Great Grandma Linda! (Reg's Mom)  They got to visit recently!  This is such a precious picture!

 

Tillie had a little hiccup in July!  She caught a bug with a fever of 102 degrees.  If she gets a fever of 100 or more, she needs to go to the clinic or ER.  Because it was late at night it was a trip to the ER.  I drove up to Tacoma to support Emily....that was a fun drive as it was during one of our rare thunder and lightening storms.  Tillie was not admitted, so at 4AM, we went back to the Maier's home.  Tillie had an appointment that afternoon and once again, she amazed her doctor!  A brief history, when Tillie was first diagnosed, her numbers were so bad the doctor told Emily and Anthony that an adult would be dead and Tillie should have been unconsious at the very least..well she wasn't...she was directing the whole show!!  So, what was exciting about this latest episode was that instead of her white blood count and neutraphil count going down, they went up!  Just like they would in a healthy kid! They did their job to fight the infection.  That was cool!  So, the bug ran it's course, Ravis got it next and now both are just fine!

As mentioned above, Tillie starts kindergarten in September.  It's all day, 5 days a week!  A whole new adventure!  She has been practicing her letters and is getting quite good.  For those of us who went to school a while ago, kindergarten is more like first grade in our day. 

More to come once school starts..............

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!