"Fuzzy Head"

Our dear girl's hair finally really started to fall out, so it got buzzed.  Fortunately, she thinks it's funny & calls herself fuzzy head.  :)

Her home care currently consists of antibiotics 4 times a day through her PIC line & redressing her back wound twice a day -- here she is holding the bottle which just finished draining, so Emily is taking it out & cleaning the PIC line.  Tillie still has not restarted aggressive chemo treatments, waiting first for the wound on her back to heal.  Because of the lull in chemo, she has tons of energy & is back to being our Tornado Tillie.  Today she was in motion the entire afternoon, jumping on her bed, running around the apartment, talking excitedly & giggling.  It's so wonderful & hopeful to see -- we're enjoying it now, as it will change once aggressive chemo starts again next week.

There's No Place Like Home

Monday, October 11, 2010 Tillie Anne went home from the hospital!!! I guess that says it all! Here she is outside for the first time in over 5 weeks!!Such a happy girl!

A party dress for the occasion!

There is still a long ways to go, but going home is such a huge emotional boost for all of us..And today, October 13th, I took Ravis home to his family! The Maier Family is now back together living under the same roof!

Update - 10-10-10

This past week has been a good week for Tillie. We are seeing the Tornado we all have missed. She seems to have a lot of her energy back, but notice things like achy knees that come and go. Othertimes, she is all over! She has a car from the playroom, the kind you sit on and push with your legs and she is a wild child on that. We went to the playroom the other day and I could barely keep up with her with the IV tower!

Today Emily and Anthony are renewing their lease so, Reg and I are here with Tillie. We've already had one trip to the playroom and now it's lunch and "Cars."

There was a bone marrow aspiration on Friday and also an interthecal chemo treatment. That's where chemo goes right into the spinal fluid. Her infection is doing very well and has several more weeks of IV antibiotics. Emily will be able to administer those at home. In fact, Emily has been doing a lot of Tillie's care this weekend to transition into home care. We are hopeful that Tillie will go home tomorrow or in the next couple of days. Home care will consist of IV therapy and IV flushes. Also, changing the dressing on the incision from the surgery.

Once Tillie is home she will have mostly outpatient care, but there were will be some overnights at the hospital. Dr. Louie said that there will be ups and downs throughout this process. The infection was a fluke and that was DEFINITELY a down, but she is so much better now!

Hats, Hats, Hats

One way we are raising funds is by selling these awesome hats! These are being made by a friend and co-worker of mine! The cost is $30. All funds raised, except the cost of materials, will go to the Tillie Anne Maier Leukemia Fund. The labor involved is all being donated!!

Here is some more colors. Children's sizes are available too!

We are still working out the details, but if you are interested in purchasing a hat, please leave a comment. Or you can email me at chearn83@gmail.com

Monday, October 4, 2010

Today Tillie was visited by Anthony and some of his co-workers..it was so fun..they brought Tillie flowers, a balloon and a toy! It was pretty funny as Tillie was being Tillie and if you didn't know her, you'd wonder if she really was sick..She was just being goofy and active, while staying in her bed.

Later in the day we went to the playroom. Tillie walked both ways, but her back is sore, so she is stiff and her knees are a sore too. That said, she is recovering well from her surgery. The infection doctor (I'm sure there is an official title) said today that she can have her spinal tap come from the back this Friday. That is good news!! Our biggest prayer request is for Tillie to be able to go home and to have the Maier Family under one roof again. They are dealing with this separation very well, but need to be together again.

Haircut!

Tillie's hair is slowly thinning & we are constantly finding her hair everywhere.  It was time for a trim & Grandma did a great job!

Update

Bubbles!

Two surgeries & penrose drains later, Tillie's infection is under control & she is able to move around again & venture of her room to see the aquarium, visit the animatronic dinosaur & play in the playroom.  Chemo treatments began again today & options are being discussed for how to take another bone marrow sample & treat her spinal fluid when her back is no longer an option because of the draining infection.  Both are to see if leukemia cells are lurking in those areas -- research has shown that patients who's spinal fluid is not directly treated experience a 60-70% recurrence, so this will be a part of her treatment also.

Walking to the playroom with "Harvey", her IV tower.