A Bold, Beautiful & nearly Bald Ballerina

I absolutely love this image of Ania. It was right before she made her return to ballet class this week- she hasn't been to class since probably March. The class is in the evening and that's a tough time for Ania as she is usually too tired to go. This week, she got a good nap in beforehand so she was full of energy and ready to go! She put on her leotard and tights and started stretching before we left for class. She is so dedicated! She didn't skip a beat and got right back into her element of dance! 

Her hair loss is hard to ignore now. It's obvious to everyone now what this little girl is experiencing. She has a little bit of whispies left. Up until now, Ania has been pretty oblivious ( or in denial) to her near baldness. She saw this picture of herself today and said " where is my hair?"...... She also saw a picture of her baby brother and thought it was her... He is pretty bald too ;) She has come to awareness I think but knows it will come back soon. She is ok with it. She is truly beautiful- even if she is bald! Beautiful, bold, & bald! 

This weekend we are going on a "mini vacation" to a beach house in Michigan. It will be an excellent chance to relax and energize our spirits before her next chemotherapy session on June 3rd. As long as her levels have risen to appropriate levels that is. She's been borderline transfusion.... And keeps getting by by the skin of her teeth. I am praying she is all good to go so we can stay on track to finish this treatment by the end of summer! 

God Bless,

Erica

A Dainty Warrior....DeLorean???

If you've been reading and following our story, you may have noticed a DeLorean  (you know, "Back to the Future" car) hanging out in the back of some if our photographs.....

Our "shipping department" is at the DeLorean Motor Company Midwest. http://dmcmidwest.com/

Ania's Mimi & Papa own & operate the Chicagoland location that sells & restores these iconic cars! For as long as Ania has been painting, they have wished for a DeLorean painting of course :) So- Wish granted!! 

We decided to do it in a fun, whimsical and colorful way! Ania said she would like a rainbow in the background and dandilion "wishes" in the grass. We also had to add a pretty butterfly to represent Ania ;) 

She was on a roll the other day and finished the entire background in one sitting! This morning she woke up and said she wanted to finish "Papa's  "Lorean"!

She's also been painting her own signature now as she has been practicing writing it out!

So here it is Papa! (and fellow DeLorean lovers!!)

Prints are now available in the Dainty Warrior Etsy shop! 

https://www.etsy.com/listing/190485132/papas-delorean-dainty-warrior-print

Enjoy!

God Bless,

Erica

 

Metamorphosis Begins

Ania put the last patch on her butterfly eye patch poster today. It also just happened by coincidence that the day she finished this chart of 50 days of patches since she had her left eye removed That it's ALSO the day we met with the ocularist for her first prosthetic eye! 

A finished butterfly! 

And a new eye!! So long patches! Time to "release" the patch butterfly :)

Ania recieved a butterfly habitat kit in her Easter basket a few weeks ago and the little butterflies began hatching out of their cocoons yesterday. Another heaven sent coincidence I think that symbolizes the major change going on in Ania's life right now! 

She will watch them for the next few days and then release them out into their new world! 

This morning we met with the ocularist and I was so excited! Ania was pretty nervous and anxious. In a conversation I had with her yesterday, she reveled that she didn't want a new eye because she "didn't want her good eye to be taken." I assured her that was not going to happen and it seemed to make her feel a little better! No wonder she has been so fearful! 

When the ocularist tried to look at her she was pretty resistant but he was able to take out the conformer that's been in place since enucleation. He took a look at her right eye to see if he could find a good match for her to wear for the next few weeks. 

Here is the clear conformer that she has been wearing since enucleation and the temporary prosthetic he chose for her to wear. Ania will wear this one for the next 3 weeks to help condition and stretch her socket. It's pretty close to her eye color- maybe a little more hazel than her natural eye. The white area of the prosthetic is also a little darker than her own, but again, the ocularist will create her "perfect match" in a few weeks. 

Preparing the temporary eye for her...,

Once he put the eye in, she seemed pretty relieved and surprised with how simple it was. She wasn't ready to look at herself in the mirror though ;) That would not happen until we were back home. 

Mike and I took her out for lunch and I just couldn't stop looking at her! I started to tear up because I was so happy to see her with 2 eyes again! I have grown so used to seeing her with only one, I didn't realize how happy it would make me feel to see her without the void. She looks beautiful- even when she kept sticking her tongue out or making silly faces at me when I told her how great it looked! 

When we got home she finally took a look in the mirror

Hmmmmm..... 

"I like it!"

So yes, my little butterfly is starting her metamorphosis to cancer free life :) By the end of summer/early fall, she will have her custom eye finished and chemotherapy will be completed. We are on our way and starting to feel the excitement of freedom from cancer!

God Bless,

Erica

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The Mother in Me

Almost four years ago, Ania made me a mother. 

Instantly in love and a natural desire to be my best for her.  Once again I think of the butterfly analogy that keeps popping up into our lives right now. Becoming a mother, is also like the metamorphosis a butterfly goes through. Layers of selfishness are shed. A world suddenly opened up to new places to fly and explore with these new little people I cared for. My heart was opened up to a new level of love thanks to these tiny babies who grew in me out of love! 

Ania gave me the gift of becoming a mother and opening my "mother heart". My dear Kellen showed me how big a mother's heart can be. While pregnant with him, I had that irrational fear that many mothers have that you could not possibly love another child as much. So irrational. My mothers heart grew and grew!! This little boy captivated me and allowed me to love even deeper! 

Of course, I owe a lot of who I am as a mother to the other women who have graced my life and taught me the ancient "craft of motherhood."

My mom Julee and me. This photo just says it all. The look of adoration in her eyes as baby me experiences the simple joy of a flower. Thank you mom for allowing me to explore my world and for teaching me the ways of motherhood always through your loving guidance. 

Ania was born after her great grandmother Marilu passed away so she never had the pleasure of meeting her. However, I think she shares her smile and sense of joy with her. 

 Marilu : the Original Mimi, Queenie & Pookie! 

Marilu was always laughing and knew how to captivate others through joy. Even though it's been several years since her passing, I can still recall the sound of her laugh! I'm certain she is smiling down and very proud of Ania! Thank you Mimi for teaching me joy! And the power of a smile! She smiled all the time and people loved her for it! 

Ania Elaine has part of her name from another special mother figure:

Elaine

My grandmother Elaine ( I call her Nanny) is a huge part of who I am as a mother. The wisdom she imparts on me still motivates me to live my best and most fulfilling life. Her encouragement has lead me down many productive and creative paths. The artistic nature that both Ania & I have come from her as well. She is a painter and clay sculptor. When I was little, she always had me drawing and painting in her studio. 

There is another, however, a bit more somber reason I relate with my grandmother Elaine. She is a mother to 3 children- David (my dad), Tom & Nancy. 

Sadly, dear Nancy lost her battle with Leukemia at the age of 7. My grandmother faced the ultimate fear any parent of a child with cancer faces. The loss of a child. I can't imagine. I'm sure watching Ania go through the struggles of cancer and watching me, the mother go through the struggles of parenting a child with cancer just tears at her heart and reminds her of some dark times. She  however continues to demonstrate such strength and wisdom for me as I battle through this. I couldn't do it without her and I am glad I have her guidance to persevere. Thank you Nanny for being such a pilar of understanding strength and wisdom. Your grace is inspiring. You are the warrior mother I look up to most of all. 

Mother of Mike, Patty:

Thank you to Patty for Mike as well! You raised a good man who loves his wife and children very much! I know he and I both admire your strength through many of your own life trails. 

Generations of Woman:

Julee, Me & baby Ania, Elaine & Patty

Finally, I have to thank my children again for being my flowers in my garden of life. Like a butterfly, I am drawn to them always! My life is more beautiful with them a part of it. 

Happy Mother's Day indeed! 

God Bless,

Erica

Chemo Cycle 2 Summary

What a long few days....

Lots of sickness and an extended stay- yet we are now one step closer to being finished. Phew! 2 down, 4 to go!

A little pre-chemo snack of homemade banana bread :) she also danced and had a bedside magic show beforehand. 

It disappeared!!

Where could it be?! So fun!

painting mommy's fingernails :)

Riding her little car& hooked up to pre-chemo IV fluids- all while wearing her superhero cape of course :)

She had her chemo started a little after 3pm. She did well for the first 3 hours- then the sickness hit and we had a long night ahead.

She was up every approximately every 30 minutes. Zofran didn't help much at all with the nausea :( 

The next morning...

Venturing out...

The next day she had her second dosing of carboplatin and we expected to go home in the afternoon. I went home to be with Kellen and my mom stayed with her. I heard from them around 3:00 saying she was throwing up again and there was a good chance she would stay the night again to avoid dehydration. Good thing my bags were still packed. I made my way back to stay the night again. 

She slept through the night thankfully so I assumed we would go home in the morning. She woke up and started to get sick again :( however, her spirits were good so we ventured out of her room for more riding around on the pink car and some painting. She would "pull over" every once in awhile to get sick but she would start back on her ride as soon as the sickness passed..... What a champ!

We made a "pitstop" to paint :) 

She painted a car for her brother :)

And a butterfly of course :)

She wanted to give her butterfly "googly eyes" so I brought out a box of eyes. Clumsy mommy dropped the box of eyes.... The table and floor were now covered with hundreds of "googly eyes"- and I couldn't help but laugh at the irony of why were in the hospital in the first place...eye cancer... And I just dumped eyes all over the place.... Ania might have been thinking the same thing because as we picked up all the eyes, she did this: 

"Mommy! Look at my new eye!"

she said :) 

We were discharged around 1:00pm and I think it's exactly what she needed. She was happy to be in her home indeed! She ate, played and did not get sick again :)

Kellen was happy to see her!

We were able to enjoy the beautiful weather! We played outside and she even worked on her jump rope skills!

Picked flowers

And of course, danced with butterflies while wearing her own wings :) 

What a beautiful spirit my dear child has! She's faced so much in the last 48 hours and STILL finds it in herself to dance....

Thanks for all the prayers and good thoughts sent our way! 

God Bless,

Erica

Villa Park Fire Department Meets the Dainty Warrior

This weekend we had quite an adventure! Back in March after Ania's story aired on NBC, I received a phone call from a fireman named Brandon of the Villa Park fire department. He said that he and the crew were watching the news the night it aired and they were interested in having Ania paint a fire truck for them to hang in their station. I just love the thought of these everyday heroes being moved by Ania's story! So of course, Ania went to work on a painting for them!

And of course, they loved it! 

Here it is as a print on etsy:

https://www.etsy.com/listing/183992249/firetruck-dainty-warrior-print

Anyways, fast forward several weeks later and we got the opportunity to bring her finished painting to the firehouse! Ania and several of her friends got to take a tour, spray the firehose, try on gear & play on the fire trucks, ambulances and a police car! Oh and have an ice cream social with Villa Park's finest! Ania also got to meet the beautiful 11 year old niece of one of the policeman- her name was Lelaina and she traveled all the way from Iowa to meet Ania! Lelaina is a retinoblastoma survivor who also wears a prosthetic eye!  We are honored that she came to be a part of this special day! 

Here are the pictures to show what an unforgettable day we had! 

Fire hose!!

Dress up! 

Ice cream sundae time!

 

The police gave her a special kitty dressed in police uniform- she decided to name her "Lady"

The fire department gave her a very special gift as well- a custom made Dainty Warrior Fire Fighter helmet! It is a real helmet painted sparkly pink! It's beautiful and quite a treasure! 

She's a natural! 

Once the party was over, Ania chose a spot on the wall of the firehouse to hang her painting! 

The day spent at the Villa Park fire department is one we will never forget. Ania and her friends were shown such a wonderful time that each of them will treasure for a long time! We are honored to have been in the presence of these everyday heroes! The kindness shown to us this day once again demonstrated the power of the human connection. Thank you again Villa Park FD & PD for saving lives and changing lives- each and every day!

God Bless,

Erica