Thanksgiving Thru Christmas

It's been awhile since our last post. As of today, Tillie has reached day 42 in her 2nd phase of treatment. In this Consolidation Phase she has had 2 planned overnight stays and each visit has had one or more different types of chemo. Tillie has had little side effects other than tiredness. Her hair is even growing back. It may still fall out as she has a lot more therapy to go through. At today's visit her numbers are down and will probably have a blood transfusion this Wednesday. Fortunately they were able to keep her port accessed for the 2 days..this is good as Tillie does NOT like having her port accessed.

Thanksgiving Day was spent at Grandma and Grandpa's. Saturday of that weekend, Tillie got to go on her first flight with Grandpa in his airplane. Emily and Ravis also got to go up in another plane and Grandma (me) went up on a 3rd. It was a short ride, but lots of fun!

Skip ahead to Christmas where Tillie, Emily, Eliza and I got together to bake cookies. We had a lot of fun! We shared them the next day at the Hearn Family Christmas party. That was fun...

The Hearn Family party was held at Auntie Melony's house in Seattle. We had great fun! The dress Tillie is wearing in the above photo was made by me for Emily in 1991 when she was 4. It's fun to see Tillie being able to wear it.

There are lots of pictures..click here to see the rest of the pictures.

Thank you to all of you who have prayed for Tillie and supported the Maier Family by your donations and by your help. We appreciate all that's being done on their behalf. We wish you all a Happy New Year!

What are you thankful for?

I'm thankful for Tillie and her fighting spirit as she battles leukemia.

So thankful that I'm asking for your help -- please support Tillie and donate to the Tillie Anne Maier Leukemia Fund.

Snow Adventure

On Monday we experienced our first winter adventure in getting Tillie to her outpatient chemo treatment.  The roads were fine in the morning on the way to Tacoma & Tillie was very excited about the falling snow.  Here she is all smiles waiting for the numbing cream to kick in before receiving the chemo intravenously through her chest port.

The nurse explained to Tillie & showed her on a doll how it all works.

Meanwhile, Ray joined me on a work conference call & we took walks around the Oncology Center. We watched the snow fall, me thinking about the drive home.

Understandably cranky & weak after treatment.

Much better after hot cocoa.

The view as we left Mary Bridge Outpatient Center -- we ate lunch in Tacoma, not knowing how long we would be stuck in the car on the way home.  It was tough when we first headed north, but we were home by 1:30pm -- not bad!

I can't quite bring myself to wish it doesn't snow (I love it & so does Tillie!) so here's hoping it still snows, just not on days when we need to get to the hospital.

You Can Support Tillie & Her Family!

Over the past two months many of you have asked how you can support Tillie -- we are finally settled and organized enough to tell you how!  The positive prognosis of a full recovery for Tillie comes only with the strict adherence to a two-year chemotherapy treatment plan.  While the majority of Tillie's medical costs are covered, the collateral expenses put additional strain on her young, struggling family.  Tillie belongs to a loving, single-income family with another child, Tillie's baby brother Ravis.  The day-to-day reality of groceries, rent, gas, diapers, car insurance and impending dental bills are piling up, increasing the burden during an already stressful time.  

The good news?  You can help!

• $10 pays for gas to and from the hospital where Tillie will be receiving weekly chemo treatments.

• $30 pays for one day of daycare for little brother so that Tillie can have her mother's full attention and care during hospital treatments.

• $50 pays for a babysitter so that Tillie's parents can have a much-needed evening out, providing them with the mental and emotional stores to respond with grace and patience during difficult times.

• $100 pays for a week of groceries, enabling the purchase of healthy foods important to Tillie's health and that of her family.

Just before undergoing surgery for a new port on 11/15/10.

Please click here or on the "Donate" button at the top right to help support Tillie and her family.  

We appreciate each and every dollar. 

"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.

Surgery

Tillie had surgery last night at 8:30pm to drain the infection, the MRI showed a large pocket of pus all across her back. There was an abcess under that, beginning to get into her bones and muscles. They are going in again today to put in a penrose drain, so it will heal from the inside out without having to keep re-pack it. She's on morphine again, its going to be a slow heal. The general surgeon says at the least 2 weeks for recovery. The orthopedic surgeon will be assisting today, to take a look at her bones and muscles to see if the general surgeon was able to clean out the infection that was getting into them. Keep Tillie in your prayers and pray for quick healing!

Healing Tornado

Rest has been a tough thing for Tillie to find the last week, with multiple painful infections & chemo side affects.  This photo was taken on Tuesday September 21st, the autumn equinox & day number 18 in the hospital.  Her pain has been so bad that she had morphine throughout the weekend & into this week.  While it's difficult to see her doped up from the medication, it has allowed her to get some much needed rest.

And now her little body has started its comeback!  Yesterday the infection site in her back started to pus, a sure sign that her body is beginning to fight the infection on its own.  And today it is draining!!...who knew we could get so excited about draining pus? :)  While the photo above was soon after another platelet transfusion, it was also after visiting the fish in the lobby aquarium, the first trip outside her hospital room in a week.  Today she had a bit more energy & even giggled for her grandma!  Her platelet & healthy white blood cell numbers are steadily rising, a strict prerequisite to being allowed to go home.  She may be home as early as next week -- which will begin the next phase of this 2-year treatment plan, one in which the Maiers will need more support than ever so be on the look-out for a meal calendar & other ways to support them along this journey!

Our heartfelt gratitude for your continued prayers & support.

Infection - A Difficult Week

This picture is actually the end of week one..Tillie was still active..less active than normal, but active. This was a moment of being unhooked from her IV machine and she was up and about. Saturday, Sept. 11th, Tillie had another bone marrow aspiration. From here on out, she kept complaining about her back hurting. By Tuesday, I think, it was determined she had infection at the site of the bone marrow draw. Thursday the doctor said it was indeed a staph infection. I went up to be with Emily as this was upsetting to her. Tillie was given an MRI to see if the infection was in her muscles. I don't think it is..nothing was said. Today, Friday, there was talk of draining the area, and if that didn't work, surgery. It was later determined that the swelling was edema and no aggressive measures would be done. We're praying that it doesn't go any further and that the antibiotics take out the infection.

This little guy, Ravis, has also been a real trooper! He has been making the rounds between family, friends and daycare! Here he's got a quiet moment with his Mom!!

Resting with Tillie..she was having a hard time lying down because of her back pain.

Tillie and her Daddy!

I think this says it all. Oh Tillie..you will get better, soon!

Day 13 in the Hospital, Day 12 of Chemo

The time has come when we are beginning to see all the side effects of chemo.  Our sweet girl is cranky & tired & has quick & dramatic mood swings.  Yesterday was a scary time as one of the points where they took a bone marrow sample became infected -- with her immune system so compromised, they put her on 2 different antibiotics & constantly monitored.  During all of this she has been in a lot of pain & is so uncomfortable that often she doesn't know what she wants in order to feel better (most suggestions are met with "no!").

Thankfully today the infection seems to be better -- she slept for much of the morning, had a bit of good-humored time during which she ate a little, & now has returned to constant pain & restlessness.  Poor baby.  She is currently receiving a platelet transfusion & as soon as that's done she'll be onto a red blood cell transfusion. It's heartbreaking to tell her "It'll be alright" & have her answer back angrily, "No, it's not alright!"  She is sick & tired of being poked & prodded but also has moments of incredible resilience & consideration -- while she hollers when she sees the thermometer, she still automatically lifts her arm to help the nurse.  Today when a nurse apologized for hurting her, she replied consolingly, "That's ok."


Now with the morphine going in, she has quieted down.  Hopefully she can get some much-needed rest.  Below is my favorite moment from the day -- quietly flipping through the pages of The Little House, one of my favorite childhood books.

A Poem For Tillie by her Mom

Come Home, Little Angel
I watch you sleep, little Angel, blissfully unaware
Of all that is going on, how much you hurt inside
You want to go outside, play in the sun
You don't know why you're here, why you have to stay.

Come Home, Little Angel, come home and sleep.
Waking up each morning you're always on your feet.
Come Home, Little Angel, let me see you in your own room
Running and laughing, nothing will ever slow you down.
Come Home, Little Angel.

With smiles you see those who in scrubs and gloves
Always ready to hug someone with open arms.
My little tornado, whirling around in your own dance
Get well, sweet Angel. Come and dance with me.

Jesus holds you now, He shines through your every grin
Helping your body fight the sickness within.
We give you to God, little Angel, let him guide your steps

Saturday. 9-11-2010

Tillie had a hard day today. It started with having to be knocked out for a bone marrow aspiration. Also more chemo and a platelet transfusion. They gave her some benedryl prior to the transfusion. I guess some kids have allergic reactions??!! So, here is Tillie sleeping off the effects of the day. She was pretty tired and grumpy while we were there.

She got hungry though and had her latest favorite..chicken noodle soup! Becoming a bit more awake!

Looking and acting more Tillie-like! YAY..just wish we were there!
Definitely happier. That's Andy next to Tillie! Kathryn says to Tillie.."Tillie,Andy and I have to go now." Tillie..."Andy wants to stay!" Haha..only Tillie..she loves the guys!

A New and Bigger Room

Tillie was moved to the larger room today. Since she is their only long term patient they felt she needed the extra space. She has been blessed by so many friends bearing gifts! Her room looks to the Northwest with a hint of Commencement Bay..(I think)

Here's another view
Emily's latest fashion statement..she's battling a cold and has to limit her contact with Tillie. Tillie is still confined to her room as her chance of infection is too high. I don't have the latest numbers though. She is such a trooper! All the medical staff is amazed at her energy and spunk!

A new hat and a clown nose make for a silly girl!

Tillie and me..Grandma Carolyn! I'm here with her this afternoon so Emily can have a much needed break! Tillie is FINALLY going to sleep..shhhhh

We are so thankful for all the love and prayers! We couldn't do this without you!

Visitors

Anyone who knows Tillie knows how much she loves people.  She (& her family) love visitors, especially during the long weekdays.  We hope you will come say hi, but we also have a couple reminders for Tillie's safety:

• Do not come if you are sick or not feeling well -- Tillie's immune system is very weak & we must limit her exposure to any germs.

• Please wash & use Purell before entering her room -- Purell dispensers can be found immediately inside the pediatric ward, across the hall from Tillie's room & just inside her room.

While it certainly is not necessary, if you would like to bring Tillie a gift we have a wish list to help pass the long days at the hospital:

• an inexpensive kids' digital camera so that Tillie can take photos of her hospital stay, her nursing friends & her many visitors.
• hand puppets -- next week we will be putting on puppet shows from the foot of her bed (please call in advance for tickets as it may be standing room only)
• playdough molds
• small people or play sets for imaginative play
• a fun, colored flashlight (perhaps with fiber optics)
• Big Backyard or Zoo magazines
• small set of large legos (please confirm with the family that Tillie has been moved to the larger room)

Finding the hospital:
Tillie is at the Mary Bridge Children's Hospital in Tacoma.  The main entrance is directly off of MLK Way & street parking can usually be found nearby.  Enter the building with address 315 & take the Olympic elevators to the 6th floor.  Tillie is in room 670 (hopefully by this weekend she will be in the larger room just to the left).

We hope you will come visit!

Today

Today we were dealing with one of the side affects of the chemotherapy, called neutropenia, where the white blood cell count is low enough to compromise the immune system.  Normal count is upwards of 1,000, this morning Tillie was sitting at 121.  With this increased risk of infection, she was confined to her room.  So, we built a fort, played games, she was made an honorary submariner from the visiting veterans & had some time with little brother Ray.

Monday

On her way to becoming the most visited kid at Mary Bridges...

Cool snuggling with Auntie Mel.

Sara!

Weighing in with Ron.

Hugs from Uncle Monkey.

Today Tillie received via IV steroids & chemo treatment, which the nurse said can result in hunger & crankiness.  We only saw a few examples of cranky & she finished off 3 string cheese, fruit, granola, & apple juice all before dinner! She really enjoyed all her visitors today, giving lots of hugs & stating "I'm glad you're here."  We went to the playroom, visited the fish & enjoyed new books & toys (thank you Walker family!).  And best of all...her leukemia cell count is down to 20% !!