Philidelphia Update & Fundraisers

We are still going back and forth about our daughter's future. What should we expect out of Philidelphia? Miracles? Is more treatment in the cards for Ania? If so, will it be too much for us to watch her go through? Will it be too much for her? Will it even work? Should we just throw in the towel and remove her eye so she will be cancer-free immediately?

Cancer free.....? Please pray for clarity and peace in our decision making. 

It looks like we will be traveling to Philadelphia March 9-17 tentatively. Still working out details, appointments and travel plans.  

It's been a tough week for our family. The stress is so painful at times. I don't feel like the fun, happy mom I want to be for our kids this week. I don't feel like fun, happy wife either sometimes. I need my husband. He needs me. Sometimes it's just so painful bearing this upcoming decision together.  I look at him and think back to the 17 year old kids we were when we first met and it's unbelievable that we are going through this together with OUR child 14 years later.... We never would have imagined.

Just kids back in 2000....

 I just know we will be ok. She will be ok. Right now is painful though. And exhausting. But gotta keep the love flowing and be supportive for one another. Be a shoulder when he needs it. Lean on him when I need it. It can be a delicate give and take at times. That is family life and unconditional love. 

Pouty face and all....our family is a solid unit of Love <3

The one bright spot in the last few days has been all the donations coming in through Ania's art sales and a fundraiser page that a friend set up for us. I initially just liked the idea of keeping donations tied strictly to Ania's art so people could actually receive a gift of a Ania's talent in return. However, I know some people just like to give and expect nothing in return and I guess that is ok. As humans, we act as the spirit moves us.... Thank you to all who have acted.... From the bottom of our hearts, THANKS.

Here are your 2 options for support/fundraising:

Dainty Warrior Art Etsy :
Ania's Etsy Page of original paintings and prints.  New items were added yesterday and more will be added today! Pirate ships, castles, hockey players, big fish, little fish, more birds..... check it out and check back often! Share with family and friends too :) All proceeds go to medical/travel expenses.

Dainty Warrior Ania GoFundMe Page:
This was created unsolicited by a friend who felt compelled to help.  I am overwhelmed with the support demonstrated there thus far.  Again, all proceeds go to medical/travel expenses.

That's all for now.  I will update when I know more details.  For now, I am going to try and have a little fun with the kids and give Ania a normal week next week free of doctor visits.  She will be at school, with her friends, or being creative as much as possible next week!

God Bless,

Erica

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Unfortunate Change of Plans...

Where to begin.... I wish I had a more "pretty" or "eloquent" way of saying it but cancer is ugly so it doesn't deserve it.

 My daughters cancer has gotten worse. 

There, I said it. And feel free to add any choice swear words to that unfortunate statement. Yes, I'm afraid our current doctor determined in this mornings exam that the tumor seeds are spreading/growing/multiplying....... Whatever.... They are not responding as they should and he is referring us to a new doctor because he no longer feels confident in treating her. I'm not mad at him for passing us along. I'm mad at this wretched cancer. 

Today's appointment was cut short due to his findings so she had no chemotherapy done today. We are home resting and digesting this new news. I have connected with our new retinoblastoma specialist in Philidelphia and most likely will be bringing Ania out there very very soon ( a matter of days). We will talk about what our new course of action will be. We will weigh those options and decide if we should go forward with a new treatment plan or perhaps just enucleate (remove) the eye and be done with this whole cancer "adventure" in one fell, extreme swoop. 

Our beautiful, strong, & inspiring child. Your daddy and I love you so much and want nothing more than to see you well. 

I don't know what else to say right now other than pray Hard. Pray that we are being put in the right hands. Pray that we make the best decision for our daughter. Pray for Ania. Pray for me. Pray for her Daddy. Pray for our family. Just pray....

God Bless,

Erica ( Ania & family too!) 

Keep up to date on Facebook page:

Dainty Warrior Facebook

Dainty Warrior Art 2/15-2/20

More fun paintings from this week to add to the collection!

But first, a HUGE thank you is due to all those who have purchased art from the DAINTY WARRIOR ART shop so far! As of right now, she has sold 35 items from her shop!! That is just amazing and we are thrilled to be able to share her art with others in this way! I am excited to get more of her work made into prints and am tossing around the idea of getting them made into notecards as well! Dainty Warrior stationary would be fun right?!

Anyways, here's what we've been up to this week:

A Clown Fish

A Swallow ( we are big fans of creating birds- we've done lots of different varieties now)

Being shy... Hiding out beneath her apron

This last one has been on many suggested painting requests lists....

A Hockey player

Daddy has been telling her he should be Blackhawks colors and his persuasion paid off because he is now sporting a red, black, & white uniform :) 

I had left the background blank and was not sure I wanted to draw up a crowd but Ania insisted there be spectators. She also knew who she wanted watching the hockey hero.... 

The spectators....

Ania, Kellen, Daddy, Mommy & her dear friend Lily :) 

Such a happy hockey hero!!

Hope you enjoy! We may take a little painting break as we have Ania's Uncle G , Aunt BB & new baby cousin in town this weekend. Ania is so excited to see them! Also, next week is chemo week so we will take things day to day depending on how she is feeling. 

Thank you again for all the support! 

God Bless,

Erica

Play Imitating Life

All kids play doctor. Ania is just really good at it. The way she talks to her dolls as she shines a flashlight in their eyes echos her experiences accurately. She tells them what she is doing and explains why.

She says, 

"Welcome to my "Hopipal" (aka hospital)

"I have to check your eye Dolly to see if it's broken." 

" I'm going to check your temperature to see if you feel good." 

" I'm going to give you a pinch and it might hurt a little bit. Be brave and strong Dolly"

"I'm going to help you Dolly so you can be better."

Play imitating life at it's finest. 

A week from today is Ania's 5th round of chemotherapy and I'm starting to get a little stressed. We are going to try to administer prednisone in grape flavored tablet form the night before since the liquid version is impossible to get her to take. If the tablet doesn't work, we will get it IV administered again like we did last time. Next Wednesday will be long. There will be her exam under anesthesia first where Dr. S will tell us if the seeds have been growing still. There will be the intra arterial malphalan & topotecan drugs in her femoral artery. And the cherry in top is the shot of drugs directly into her eyeball. That one just sends shivers up my spine when I think of it. But- I must echo my dear daughter's words and be brave and strong for her. She has little fear and lives each day to it's fullest. I am thankful for that. 

God Bless,

Erica

Dainty Warrior Art 2/8-2/14 & ETSY Shop OPEN :)

Finally! I am pleased to announce the Etsy shop offering originals and prints of Ania's work to help fund her cancer treatment is UP & RUNNING!!!

Here is the link: https://www.etsy.com/shop/DaintyWarrior 

There are many prints available right now and a few original paintings. I plan on adding some more recent works over the next few weeks as well so be sure to keep checking back if you don't see something you were interested having available yet :)

Here are her works of the week too :) There are some GREAT ones!

A sassy little piggy!

Oink oink!! :)

An awesome humpback whale she calls "Percy".

Percy is actually a bath toy she has and named- you can see him resting on her knee ;) 

 

I LOVE the water :) 

A Happy Farm! If you go to the Dainty Warrior Facebook Page you can see a video of her painting the farm!

Tiny little chicks :)

I want to live here :)

And just because he's so darn cute, here's little brother Kellen attempting his first canvas finger painting work! 

Hope you enjoy and find some art you like in the new Etsy shop! Again, check back often and share with family & friends! We've got lots more work up our sleeve so keep watching for what Ania will create next!

 

God Bless,

 

Erica

Disney on Ice with Laura

This is a second post written by my dear cousin Laura.  She took Ania to see Disney on Ice this past weekend and here is how it went! :)

I am very excited to write this second guest post about our trip to Disney on Ice!  When I picked up Ania on Saturday morning, she was already bouncing off the walls with excitement.  She was dressed in her Frozen tiara and a Minnie Mouse shirt; completely adorable!  Once we got on the road, she was telling me story after story after story.  She saw the big buildings and mentioned ‘Daddy’s castle’ again, so I asked her if she was a princess.  She immediately laughed and told me, “No, I’m just Ania.  A big girl!”

Once we got to the United Center, we entered into a sea of pink dresses, Minnie and Mickey Mouse ears, and hundreds of light up toys.  I have to say, I really need to learn how to say no (but when you’re with Ania, it’s very hard to do that!).  We found our seats (FRONT ROW!) and Ania’s face lit up when she saw how close we were to the ice.
 

We happened to get to the show about 45 minutes early, so we enjoyed a snack of popcorn, and I, of course, caved on a light up Minnie Mouse toy.  Those Disney vendors get you!  That’s what cousins are for, right?

 

When the lights went down, Ania climbed into my lap to see better (we were right behind a light that was pointing at the ice) and the show began!  I have never heard so many “WOW”s before!  She loved watching the princesses being lifted up in the air by the princes and she pointed out all of her favorite characters.  It was really fun to watch her having so much fun.   She waved at a lot of the characters and didn’t get scared when all of the villains came out onto the ice.  I won’t go into too much detail about the show, but there’s a series of pictures below to show some of the acts we saw.

 

 

I feel as though we are creating a very special cousinly bond every time I see her.  It’s really amazing seeing how much she grows-up and how much she remembers about all that we’ve done together.  It really warms my heart and reminds me how special children are, especially ones that are fighting such difficult battles, like she is.  Again, I am incredibly grateful that Mike and Erica allow me to take her to do such fun things and give them some time together, and with Kellen, and just forget about cancer for a while.  Hopefully we can do more things together when Chicago is not in the running to be the next Antarctica!

 

 

Thanks for reading!!

Laura

 

 

 

 

 

 

 

 

 

 

 

 

Solidarity Pinch

Today we arrived for Ania's weekly "pinch" aka blood draw and there happened to be signs posted all over the hospital advertising a blood drive. 

While she sat on my lap & pulled up her own sleeve, I decided the fact that there was a blood drive that same day was the universe telling me that I could have a chance to demonstrate a little bravery too. 

After her lab work was done, we made our way to the blood drive. I told Ania that it was my turn. She asked if I was getting a little pinch with medicine ( like she gets her prednisone). I explained that there are sick people who are in need of good blood and that I was going to share some of my good blood with those people in need. I'm not sure she totally understood but she seemed to accept my answer none the less. 

In the past, I have always made excuses why I "couldn't" give blood. My veins are small and hard to find...I'm too busy...I'm a wimp.... Blah blah blah...

Today,  I had no excuses- plus, I have a little girl who looks up to me daily and at the same time, she is the bravest person I know. She sticks her arm out boldly week after week with little complaining. Here was my chance to stick my arm out in solidarity with her. I grabbed that chance today.

She watched me pull up my sleeve & grimace a little as the pinch came. However, while the pint of blood was drained from my arm, she beamed with pride! She told me I was brave and strong- just like her :) 

Today was a moment I will never forget. The day we shared pinches together. If I could do this every week with her, I would. Plus, the blood I donated was enough to help save 3 peoples lives. Pretty cool! Never again will I make an excuse not to donate.  

Pinch Buddies :) 

How will you be inspired or inspire someone next? :) Grab that chance when you see it-  it feels great! 

God Bless,

Erica

Dainty Warrior Art 1/31-2/7

This girl really loves her art... 

It's been a busy week and we are now fully stocked with supplies for a long time thanks to a generous donation from Sarah & Blick Art Materials.

 It's so cool to grab a canvas from the tower of canvas we now have in our basement :) Ania has many more paint colors to choose from too and it shows in the latest batch of art from the week. Check them out:

Elephant:

Had to have turquoise toenails :) 

Little brother got try out some watercolor too with the guidance of his sis. She showed him how to dip the brush in paints- and to not "dip" it in his mouth too.... 

He caught on pretty quickly! Way to go Kellen!!

We started using her new canvases next and they are a bit larger than what she's been using. It actually makes things a little easier for her- less small details- less "oopsies"! 

A Princess Castle

She was very particular about what colors went where on this one.... And Her choices were awesome!! 

So proud!!

Up next was a special request for another Retinoblastoma warrior- an awesome guy named Jake who has faught HARD- and so has his mom. She has been a great support for me personally along this journey. 

A yellow cancer awareness ribbon.

Ahoy! What's next? Pirates of course!! 

She loved doing the swirly water :) 

Today we did a special one for her daddy's office. Daddy works in downtown Chicago and every time we drive into the city and see the skyline, she calls it "Daddy's Castle". To her, the building scape looks like a magical huge castle! What an awesome imagination! Only fitting that we paint it right? 

Daddy's Castle

This week health wise has been ok. Other than a little virus earlier in the week she has been feeling in tip top shape and no side effects from last weeks chemotherapy treatment that we have seen.

The city is safe... The superhero painter is taking a lunch break ;)

The Etsy shop for her original works and prints is still not up and running (sorry!)  but it will be soon hopefully! Keep up to date on the new Dainty Warrior Facebook page for an upcoming announcement! Thanks for your support!

 

Her shirt says "Keep Calm I'm Supergirl"

God Bless,

Erica