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!

Target Trip

Tillie was very excited about the new stroller, which has a place for her to sit!

Update

We just wanted to update everyone on Emily's car. Last Friday, March 11th, Emily received a call at 4:30AM from the police saying they found her car in Tacoma. It took 3 days for their insurance to determine it was ok and released the car back to them on March 14th. The only thing missing from the car was Emily's GPS.

Thank you all for your prayers!!

A little too much intensity...

On Monday March 7th Tillie started her fourth phase of treatment, Delayed Intensification. Being aptly named, this phase includes multiple kinds of chemo as well as a return to steroids.  Yesterday alone she received 3 different types of chemo & goes back on Friday for another kind, in addition to 7 days on, 7 days off of steroids. It's tough to have our girl go back onto intense chemo during which she will have more side affects, but we realize it's temporary & necessary to ensuring her body is leukemia free.

We learned that after this there will be one more interim maintenance phase before heading into the 2-year maintenance. The final phase begins in May & is 8 weeks long -- every other week Tillie will be in the hospital for at least 3 days for high doses of methotrexate followed by a rescue to flush it out of her system (we're learning all kinds of new words & terms over here). This will be a particularly trying time because of the multiple-day hospital stays -- we will need help with funds so that Ray Bug can be in daycare allowing Emily to give Tillie her full care & attention. Anybody want to help me organize a fundraiser? I already have use of the Fremont Abby Arts Center for an event & possibly also the donated time of some talented artists! I know we could pull off a fun event & raise some much-needed money for the Maiers, but I need help.

The final blow of intensity came just this morning when Emily headed out to the car with the kids to visit their Mom's Group -- the car had been stolen right out of their apartment parking lot, in it all of the kids' car seats & strollers. Obviously, a new car is needed ASAP in order to get Tillie to & from her weekly treatments, not to mention grocery shopping & other errands. Tomorrow we will have a little outing to buy new car seats for the kids & I'm hopeful that the Komo4 Problem Solvers will help the Maiers get a new car (I just sent a letter to them today).

Stay tuned for photos & updates from our outing tomorrow.
In the meantime, no more intensity for the Maiers! We'd like things to be calm & boring please.

Update

At Tillie's appointment on January 10th, she was a bit anemic, but not enough to transfuse. Emily was told to keep an eye on her, to see if Tillie got more fatigued. At the Mom's group on the 18th, Tillie didn't want to play with the kids, she just wanted to sit and snuggle. That's not a normal Tillie response. Emily checked in with Tillie's doctor and was advised to bring her to the ER. Emily did so and Tillie's counts had gone down quite a bit and needed to be transfused. This resulted in a night in the hospital.

The funny part of this story is that Tillie got some of her tornado back and the ER staff really questioned Emily..Something like "she's fatigued?" They even called Tillie's doctor and he informed them she can be very active. That's our Tornado Tillie!

Tomorrow is Emily's birthday. We are so proud of our daughter in how she has handled this whole leukemia thing! She has been a rock for Tillie.

Happy Birthday Ems! We love you!!

Interim Maintenance Phase

On January 10th, Tillie started her third phase of treatment, Interim Maintenance. This is another 57 day phase. Her treatments have gone from 7 days a part to 10 days apart.

Here she is sporting one of her hats! I think she's having fun with all her hats.

Her first appointment on January 10th was a sedation appointment..Tillie HATES being sedated..because of the sedation, she needed to be there at 7:30AM. The weather was threatening snow and ice, so Emily, the kids and I checked into the Best Western near the Tacoma Dome the night before. The game room had a ping pong table and we had a lot of fun!

Working on making her a Seahawks fan....since neither of her parents are sports fans!

In our hotel room..

Ravis was having fun meeting the baby in the mirror..