A Gift of Another Year

When we found out we were pregnant with Ania, it was a bit of a whirlwind- all be it a great one! Basically we talked about starting a family and  BAM!!- it happened :) very lucky I suppose. Side note- I ran the Chicago Marathon a few weeks pregnant and didn't know it at the time! So, this marathon we are doing right now through cancer, is not Ania's first! 

 From the moment the pregnancy test was positive, I had a feeling I was carrying a girl. Just knew it although I didn't really admit it out loud in case I was wrong. Sure enough, little girl she was! 

Every parent has dreams and aspirations for their child. Every parent also knows their child will face difficult times and challenges. Never in my wildest dreams did I think Ania would face such a hurdle so soon in her life. I also never imagined that she would teach me so much and inspire me as much as she does as early in life as she has. She is my hero and I practically forget what life was like before she grew in my belly and came into my world. I am so thankful- and in a strange way, I appreciate the trial we face right now- not that I want her to be sick- believe me- I just appreciate the strength I've seen in Ania, in myself and our family that we might not have known otherwise.  The blessing of community I've felt while facing this trial is remarkable. I suppose it's because nobody likes cancer. Nobody deserves cancer and especially a child. Cancer sucks- but it reminds us of our mortality- just like our birthday does. A gift of another year. Another year older and wiser and blessed to be alive!

My dear Ania is another year older today. We are so thankful for that! When she turned one, two and three, of course they were sweet birthday celebrations. Year four however, is by far the sweetest. It's not just a celebration, it's a soon-to-be VICTORY we celebrate. By the end of this summer, chemotherapy will be done. By the time she has her fifth birthday, the doctor appointments will hopefully have dwindled a bit. She will have her practically perfect prothetic eye. Some major milestones will be crossed in this next year! 

I had the privilege of watching my daughter dance outside tonight at a summer concert in Millennium Park. You'd think people were there to see her because she creates her own stage by her presence. Out there, far back on the lawn while a concert was going on stage, she shined! Like the day she was born, I am so overwhelmed by her beauty tonight- from the top of her head, to the tips of her fingers and toes- she just oozes grace! I am completely gushing about my girl but I couldn't be any more proud of her! Happy Birthday Ania! 

God Bless,

Erica

A Butterfly Birthday Party!

The weather forcast showed rain through the whole weekend last week. Since we had butterflies to release, it couldn't rain! Butterflies can not fly in the rain. Ania and I prayed for a clear day and I stalked the weather man for reports of change. On Sunday I woke up, went out into our garden to pick some goodies and low and behold, it was sunny & a monarch butterfly flew through the yard and into the tomato plants! I haven't seen a monarch in YEARS! I took it as a sign that it was going to be a picture perfect day to celebrate my sweet, soon to be 4 year old girl, with all her little winged friends! Be prepared- lots if winged creatures in this post- besides butterflies, there were dragons, bats, bees & ladybugs! 

Speaking of ladybugs..... 

A couple days prior, Ania recieved an early birthday gift of 1,500 ladybugs for her garden! 

Back to the party, Ania helped me set up and decorate. She worked on each and every goody bag for her friends. Each bag had a 8x10 canvas, a paintbrush and a mini set of paints. The best part was, each of her friends were given a set of wings, similar to the ones she often wears! That way, she and her buddies could "fly" around the party! 

Party set up and goodie bags!

Testing Wings! 

The kids arrived, put on their new wings and let loose! We started with food and face painting.

Ania- the "Kitterfly" ( kitten/butterfly mash up)

A full house!

We brought out the guests of honor next- 15 live Painted Lady butterflies! Each came in a special paper envelops that carefully unfolded to reveal the pretty painted lady! The kids did such a wonderful job at gently welcoming these creatures to the party! 

Ania picking out the first butterfly to set free!

Up next was piñata time! Ania picked out a Frozen piñata a couple weeks ago at an authentic Mexican party store- so much fun seeing all the colors and shapes! 

Wow!!!! Was said about 50 times in the 20 minutes we were there :)

The piñata she eventually chose was huge- and very sturdy so the kids gave a few good whacks - and enlisted the help of daddy to eventually crack it open. 

After candy, more sweets! 

CAKE!!

It was a yummy strawberry cake with fresh strawberries inside! 

We finished the party with more run around/flying time to work off that sugar high! 

It was a fantastic and fanciful day for all who attended and we couldn't have asked for a more perfect day to celebrate! Thank you to all who came and made it so special! Special thanks to Delecatable Desserts for the delicious cake & Eva Suerth Photography for contributing to the beautiful imagery of the day :) 

Four is going to be a great year! 

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