Eye on Art

We are one step closer to having Ania's replacement eye finished. We met with our Ocularist this morning to work on having the mold created to fit Ania's socket and map out the placement of her iris.

His 16th floor office had an incredible view of Millenium Park and Lake Michigan. Ania enjoyed it and wanted to go touch "the bean" like she did last summer- I think we will go do that at our next office visit on the 25th (a week from today). 

Ania is supposed to have her eye irrigated with a saline solution two times a day and over the last few weeks, she has asked me to just take her new eye out completely and rinse it that way rather than irrigating by squeezing saline into her eye (and as a result all over her face!). Because we take it out almost daily to clean then, I have gotten good with taking it out and putting it back in- and she is very comfortable with me doing it. Her temporary eye is not perfectly fitted either- it's a bit too small so it flips upside down at least once a day so I am constantly fixing it for her. She did pretty well with our ocularist looking at her today but would only let me take it out or put her eye back in in front of him. I also got to put the wax mold in that he made for her newest version. 

Wax mold of her new NEW eye! 

He also mapped out the location of her iris and size of her pupil. When it was time to paint her iris, he asked her to come sit at his "art table" so he could look at her eye every now and then to match her good, right eye. She brought her markers and coloring book over to his table and watched as he set up his paints. The paints are just regular Windsor Newton oil paints like you would find at any art store. An ocularist really is a very specialized artist! Watching him work is pure magic and very interesting!  Who knows... Someday she may paint eyes too! 

Two artists at work! Ania with her markers & ocularist with his oils :) 

Checking out his art supplies :)

Matching the color! 

Work in progress

Does it match?

There is a part 2 to this process. We will return to see him a week from today so he can finish and she will finally have her NEW MATCHING EYE!! We will certainly go touch that "magic bean" of Millenium Park to celebrate the occasion :) 

When we got home, she must have been feeling inspired because she asked to finish the fox painting she started in the hospital last week! 

Happy to say, "Little Fox" was completed and prints are up in her Etsy shop for purchase! So good to see her working and smiling again after her rough week last week! Artistic magic seen in many ways today!!

Find prints of  "Little Fox" & other artwork available at:
https://www.etsy.com/shop/DaintyWarrior

God Bless,

Erica

In Honor of Father's Day

A Special Day for Ania's Favorite Guys today! 

Daddy's Girl

A Special message from Ania's Daddy (Mike) on Father's Day 2014:

Ania is the person who bestowed the title “Daddy” for me.  I am grateful for my close bond with my pookie wookie.  She has shown me to be a stronger person even before she became the Dainty Warrior to so many others.  Every night she has always insisted in reading just two books.  No more, no less.  This is something I have done since she was three months old and now she’s approaching 4 years old.  I will miss these times, but am appreciative of the time we do have while she faces her own battles.  Through those trials, she inspires me to be an even better Father to her, and to Kellen.  I would not also be writing this without the loving support and pillar in our family, Erica.  I’m just a really lucky Dad.  Happy Father’s Day!

Best,

Mike

And a special acknowledgement of Ania's Papa who she loves so very much! 

Smitten from the beginning! Here she is just around 2 months old just hanging with her Papa :)

Before she could say "papa" she would acknowledge him with a special sign language gesture she made up- she would tap the top of her head when she wanted to see him. She used that gesture for him for over 2 years even after she could say his name- tapping and saying Papa at the same time :) 

Wishing the happiest of Father's Days to these two special guys! What a powerful impact your presence has made for dear Ania & Kellen! 

God Bless, 

Erica 

Fever Week

Ania has been in the hospital for 5 days. Unexplained fevers the culprit. Fevers almost to 104 degrees at times. Touching the forehead of a person with a fever that high is really scary. Heat radiates off skin before you even really touch.  

Before all of this mess with fevers occurred, we had a beautiful few days out of the hospital after her 3rd chemo treatment. Thank goodness! The fresh air had to do some good for her before all the unexpected hospital time. 

Proudly working on a new plot of garden the weekend before.

We even got a nature hike in between chemotherapy and the fever onset.

Shhhh deer!

Little explorers ! 

The next morning, Tuesday, Ania crawled into bed with us and I felt the heat radiating. She had a check up anyways that morning but her labs came back fine so we were able to go home. I had a feeling it might go bad eventually because she was sleeping all day. In the afternoon the fever got up to 103.7 so we were told to come back to be admitted. 

Back in the hospital, several tests were run. Most test results come back within 24-48 hours so I knew it would be at least a night or two. 

Lots of snuggle time ( silly time) 

She got to play with the little friend she has seen now a few times at treatments named Makayla. She is a fellow warrior and Ania picked out a pair of purple wings to bring to her at her next hospital stay. We did not anticipate a visit so soon but it was nice to see her sweet friend again! 

Magical Butterfly wings have the power to bring joy no matter the setting, no matter the illness! Ania was so happy to see they had the same effect on Makayla as they do her! 

She rested a lot as we were confined to her room due to isolation that started Thursday while the medical team was trying to figure out what was causing the fevers. She had a blood transfusion as well on Thursday because her counts were low. They hoped transfusion would help give her a boost and fight off whatever was causing the illness. 

To stay occupied during the isolation, I knitted a butterfly pattern cloth. Knitting has become my favorite hospital past time. It's good to focus on something constructive and creative in the drawn out waiting time! Ania likes to watch me do it too. 

Ania had a few late night painting sessions since her sleep schedule was a little wacky. She thought it was pretty fun to be painting at 10:30 at night! Her window of activities was small as the fevers would come and go every 3-4 hours so if she wanted to paint late night, so be it!

Working on her fox :)

She also worked on her tattoo drawing skills! She's very good at drawing "garden life" tattoos on herself! 

Naptime after tattoo time

And baking cupcakes in bed?! That was super fun too! 

She had a couple visitors over the last 5 days. Of course daddy and Kellen came by regularly. She really enjoyed seeing her boys! 

Sibling snuggles :) 

A visit from Chicago Bear football player Charles "Peanut" Tillman

This picture just cracks me up. She was not upset about him at all - although she thought he was a baseball player. Two minutes before his arrival she had asked me to go to the playroom and I had to tell her the heartbreaking news that she couldn't leave her room. So she was in the middle of a meltdown when the charitable Bear tried to give her a little visit. He is very nice and a very good sport! She and I had a great laugh over this picture awhile later :) AND we got a signed football to give to daddy for Father's Day!

A visit from Olaf of Frozen ( in giant balloon form) cheered her up instantly! 

Madame Butterfly

It was not until Friday night that some test results came back with a conclusive reason for her fevers. She had Rhinovirus- aka the common cold. She had no cold symptoms at all- other than the pesky scary high fevers. Her last fever was at 3:00pm Friday. Amazing that a seemingly "ordinary" virus could cause all this trouble. Compromised immunity due to chemotherapy is no joke! 

As of about noon on Saturday  (today) we are home. Ania is so happy and as soon as she got out of the car, she laid down on the the front lawn of our house and said "ahhhhh". Good to be home! 

God Bless,

Erica

Chemo Cycle 3- Halfway There

Ania had her third chemo treatment this week. Halfway there- a cancer free life to come.  Chemotherapy is a journey that she alone must take, trusting only on God's given strength to complete. We, her family and friends, will continue to stand by and support her physical and emotional needs through the journey as best we can while she sails onto the other shore named "CURE!"

Here is how this round went....

Dancing in the waiting room!

We arrived on Tuesday morning to have her blood labs drawn to make sure her counts were high enough for treatment. Thankfully they were so she was admitted shorty after. She is starting to get smart about the "routine" so she was pretty pouty about having to stay. Her lovely nurse helped Ania "fly" to her hospital room- she used her lab coat as butterfly wings to get there with Ania!

Right when we arrived there was a big arts and crafts event happening and she gladly joined in.

Before chemotherapy, it is required that she have 2 hours of prehydration though her IV port. More waiting time but also more time to play before the tough stuff.

Bubbles! 

She had her treatment around 5:00pm.

The first few hours following were just fine. She was in good spirits.

And enjoyed racing with her little brother around the hospital hallway track.

About 3 hours post treatment is when her window of fun usually closes. Round three was no easy round. It was actually the hardest reaction yet. Once vomiting started, she was getting sick every 10-15 minutes for the next 6-7 hours. She was on a heavy nausea cocktail that didn't seem to help at all. Initially she was on Benedryl & Reglan. That mix helped her last round. This time, not so much. It wasn't until they added Ativan that she got one 3 hour stretch of peace and sleep. Her little body was beat up. Imagine doing sit-ups for 6-7 hours straight! 

Her Wings decorating her IV pole :( not in flight for a few rough hours. 

She slept in late through the morning. To keep ourselves busy, Mimi & I made butterflies out of coffee filters and pipe cleaners. We decided to decorate her door with "Ania's Butterfly Garden" to bring a smile to her face when she finally could wake.

Well, we made so many butterflies while she slept so we "butterfly bombed" the floor:) Butterflies "landed" on all the doors of other children staying at the hospital too! 

When Ania finally woke, she helped make some more butterflies- 

And even hung some around the floor :)

Other than the butterflies that were passed out, Ania gave more- when she was feeling up to it, our little generous butterfly delivered presents to the other kids on the floor from the abundance that she has received over the course of her cancer year. She kept saying, "l want to give to more kids!" until she said, "I run out of gas" and we returned to her room. A valuable lesson- the act of giving- she recieved this week- even in the midst of her own challenging time. 

Goal of the day: 

Once again, we stayed an extra day due to exhaustion and the lack of fluids and food Ania would eat. She was just not mentally ready after her hellacious night before. To be sure, it was decided she stay to avoid dehydration. 

More room decorating ensued:

Painted windows :) 

And visits from Daddy & brother Kellen:

We had a restful night so there was no doubt she would be released in the morning. 

Before we could go, we decided the butterflies that decorated her room must "migrate" to the playroom.

They landed for all to enjoy!

As of about 11:00am, we are home- and very thankful to be here! Check round 3 off the list. Three down, three to go! Now the count down begins to cancer freedom!

 Arriving back home!

Thanks again for all the prayers and help over the last few days! 

God Bless,

Erica