Dainty Warrior Art 1/24-1/30

A growing collection! 

Our dining room table is becoming the "gallery" of Dainty Warrior Art! Even though she took a few days off due to chemo, Ania still managed to whip out a few more masterpieces before and after her treatment. Check them out :)

A happy Crocodile & birdie

Snacking while mommy draws a tree frog

Vibrant little tree frog! She LOVED the bright orange! 

The next painting is a very special one. It is for a little guy named Josiah. Josiah, a distant cousin, is five years old and was diagnosed April 22, 2013 with a rare form of cancer that is not operable, Diffuse Intrinsic Pontine Glioma (DIPG).  He has stage 4, a brain tumor that is covering a lot of his brain stem.  We heard he has a special friend, "The Very Hungry Caterpillar", so we did a painting inspired by the Eric Carle storybook for him. 

Josiah- keep fighting buddy!

If you would like to learn more about Josiah or donate to his family please check out his Facebook Page or donation page. 

On the Tuesday prior to her treatment, Ania got to go on a "field trip" to Square Root Printing & Graphics. An old friend of mine, Franklin, operates the place and helped us out by taking images of all Ania's work thus far. With his help, we will be able to make high quality print copies of all of Ania's works! 

Hanging out while her paintings are photographed!

Franklin was also gracious enough to design a Dainty Warrior logo! We have a whole stack of Dainty Warrior stickers to use as we please :) 

It's lovely! Thanks Franklin!! :)

Today, feeling much better and back to "normal life," Ania once again asked to paint. Today it was hot air balloons! 

A goofy artist! 

Kellen wanted to get a closer look so he decided climbing up onto the kitchen table was the best way..... Yikes! 

Since we cannot possibly keep all this wonderful art to ourselves, I will be opening up a "Dainty Warrior Art" shop up on Etsy very soon! I will be listing originals as well as prints in the shop. All profits made from the sale of her art will go towards art supplies for Ania to continue this "art therapy" and of course towards her medical bills. I will announce on the blog soon when the shop is open :) We are so very excited for this adventure! We are totally open to suggestions of what to paint- all her paintings would look great in any playroom or child's bedroom (or anywhere really!) so I am happy to draw something to match whatever theme you might be going for :)

Stay tuned!

God Bless,

Erica  

Round 4 Wrap Up

Ania slept basically for almost 24 hours straight ( including procedure time) and had more nausea/vomiting than she has had in the past. 

Baby brother was so happy to see her! Even though she slept through his visit last night :)

She was up nauseated and sick several times throughout the night. She also had a hard time opening her eyes- she said they were "stuck" and hurt so she did not open them until 7:30 this morning! When she did finally open them, she was excited and said "Mommy they are not stuck anymore!"

Shortly after her eyes were "unstuck", she started to smile again!

Because she was sick so often through the night and was refusing to eat or drink, we stayed a bit longer than in the past. I was able to convince her to go to the playroom for a bit for a change of scenery. 

A little "art therapy" brightened her spirits :)

While we were in the playroom we met another little boy. He was so energetic and adorable. He has been battling leukemia. He was dressed in "ironman" pjs and enjoyed flexing his muscles! His mom said he dresses as a different superhero for every treatment. He and his mom also were also great spirit lifters for Ania. When I told his mom that she was not eating she thought maybe if Ania saw her son eating, she would join him. Sure enough, they enjoyed some snack time together. Maybe someday Ania and her new friend will cross paths again...

Fast friends- a warrior & superhero :)

After snack time, she got to also have a little "pet therapy" with an adorable dog named Abby. 

Dear Sweet Abby 

We are thankful to be home. Ania enjoyed a nice meal brought over by a friend and immediately went to her bed after she finished. 6:30pm and she is out for the night... Exhausted from another, hopefully successful round of treatment. 

Goodnight my dear girl

God Bless,

Erica

Rocky Road

I sat staring for quite awhile at the out-of-date wallpaper and mismatched paintings of the waiting room. Ania should paint something for this drab room..... I focused on that for awhile rather than on the fact that this cancer battle is a Rocky Road. And it got a bit rocky today. So many ups and downs....

"Rocky Road" said Dr S. as he entered the waiting room after his exam was completed. "Today's exam shows a bit of concern." he said. 

But first, I will be positive and share the good news-  the main "BIG" tumor appears to be neutralized or "calcified". It's no longer growing.  It will of course be watched closely and she will for sure have 1 or 2 more IA chemotherapy treatments to make sure it's "dead." This tumor was the main concern originally- if not treated, it ultimately would have spread to the optic nerve and then onto the brain. Excellent news right? 

Onto the rocky part, The difficult news to digest is that a few of the vitreous seeds (pieces of the main tumor that have broken off and are floating in the vitreous "gel" of the eye) appear to have implanted on other areas of the retina and have GROWN. Dr. S was unable to see any direct blood supply but assumes that there are small capillary branches that are feeding the implanted tumors. 

For today's treatment, they infused a combination of two medications that may hopefully have an effect on these new growths, but more than likely Dr. S will have to inject chemotherapy directly into the vitreous part of the eye (not IA) with her next treatment in addition to the IA chemo. So that's several procedures she will undergo at once next round- shot in the femoral artery & shot in the eye. We were concerned about whether these new tumors are growing rapidly, but he feels that it is necessary to wait the full four weeks before going in at them again.

Ania's infusion took longer today for two reasons. First, the primary artery for intra-arterial chemotherapy is the ophthalmic artery. However, Ania's is occluded (blocked) so they are taking an alternative approach through the Middle Meningeal Artery which is a little more complicated because it has other branches that they want to avoid sending the chemo drugs down which then makes it difficult to measure the exact dose that gets to the tumor. Second, the drug Topotecan was added along with the original Melphalan. Each one takes about 1/2 hour to infuse. Hopefully, the Topotecan will have a good effect on the vitreous seeding. We will not know until the next exam and treatment on February 26th.

Resting in recovery room post procedure.

She is currently halfway through her mandatory 8 hours of laying flat. She's been sleeping peacefully for the most part minus a little bout of nausea. 

I've got some "relaxation" music playing and she loves a warm washcloth placed on her eyes. Mimi has been massaging her feet.  Almost a spa like experience..... But hospital style with IV fluids and monitors..... 

Today was a bit of an emotional roller coaster with good news concerning the original tumor site but new fears to face with the newly implanted tumors. We had hoped to visualize the end of the road today but we have found another path to forge before getting to our destination. Personally I am exhausted. Just tired of this whole experience- for now. But- tomorrow is another day and there will be smoother, prettier paths ahead. I will be ok. Ania will be ok. Just have to keep the faith....and keep the love of friends and family near :)

Hoping for a path more like this soon....

Hopefully tomorrow I can share some photos of the HAPPY, smiling Ania we love. 

Until then,

God Bless,

Erica

And thank you all again for the healing thoughts, prayers and support. 

Night before Round 4

Well, not off to the greatest of starts. We are currently sitting in the ER waiting for her IV prednisone. She is supposed to take it 12 hours prior to procedure to combat her iodine allergy. Problem is- she HATES the oral medication. Honestly getting her to choke down the stuff is plain awful. Last time we managed to get a measly 1 ml down her after she vomited it all up. Tonight... It was torture. After 3 failed attempts and a kitchen that looked like a scene from the exorcist we paged the doctor. He said we had to go in to the ER and get it IV administered. So here we are... Ugh

Sleeping while we wait...

And now waiting for the prednisone 

Sleepy girls.

Once we finish we will go back home for a few hours of sleep and be back at 7am for her EUA (exam under anesthesia) and 4th chemotherapy round. 

Pray tomorrow goes smoother!

Waiting for discharge papers at midnight... I guess its be back later today then.

God Bless

Erica

Gratitude

We have been thrown onto this treacherous path of cancer. Along the way, many have lifted us up and helped us over each and every hurdle. The first few weeks after Ania's diagnosis are such a fog of appointments, phone calls, worry and fear. Now that the fog has lifted a bit and we are nearly 4 months into cancer treatment, we have adjusted to this present lifestyle.  I think we try to do the best we can. Nobody can be perfect at handling such a diagnosis. What I mean is, we manage this "cancer lifestyle" of doctor visits, waiting rooms, more fear, and thankfully some joy over progress made. However, we would not be able without the support of so many. Yes, now that the fog has lifted and we are on a solid path of treatment, I keep thinking of all the wonderful people who have stepped onto our life path and lent a hand, offered a hug or a prayer has just shown us that there is still grace in this world.  There are REALLY good people or there! I need to share all this Gratitude I have. It's incredibly powerful! 

I'll do my best to recall as much as I can from the last 4 months:

"Facebook-land" friends & groups (Crockpot Mamas, AP Chicago North/South, RB Moms):

Say what you will about social media and Facebook, in our case, it has been crucial in receiving support in so many ways! Ania has received lots of mail & care packages from people, some who I have never met other than through social media. I've had the opportunity to reach out and learn more about Retinoblastoma from other parents who have been through it with their own children- with a rare cancer that only effects 300 or so kids a year, the support from other parents who are "in the know" of cancer lifestyle has been crucial.

Likewise, friends from my past have reconnected with me and done or sent such thoughtful well wishes. Thank you friends, although you may live far, if we have not seen one another in years,or if we have not even ever met in person, you are most certainly, dear to my heart for bringing Ania into your heart.

A Huge batch of well wishes came for Ania back in November from my "Crockpot Mama" group- a worldwide group of ladies who all expected babies in December 2012. Many of those ladies have been especially supportive for me and have listened to me vent my fears and really gone out of their way to make Ania feel so special :) THANK YOU!!

Meal Train Participants :

It has been incredibly wonderful to come home after a treatment session and be brought all sorts of food for the week following.  My dear friend Megan so graciously offered to set up a Meal Train and it's been delicious tasting all the different kinds of comfort foods. THANK YOU!

Irving Park YMCA:

I have been teaching group fitness classes at the Irving Park YMCA since Ania was practically a newborn. The staff and members have watched her grow up- she has enjoyed many classes and time in the daycare area. When IPY found out about her cancer, they graciously offered a place for Ania to come and participate in her favorite classes whenever she feels up to it to continue her sense of "normalcy."  She adores all the teachers and daycare workers very much.  Kellen has also been given the same love and attention from many of the staff.  THANK YOU!

Noble Dolls (Cyd) & Apples & Tomatoes (Claire) 

In many of the pictures I post you will see Ania's special doll named Rosie. She was made special for Ania (as a gift from her GiGi) by the fabulous doll maker Cyd Knoble of Noble Dolls. Rosie's name is inspired by Rosie the Riveter and she has been a constant companion for Ania through treatments and doctor appointments.  We wont leave for treatment without her! I really could write a whole post about the adventures of Ania & Rosie....maybe I will soon.... ;)

The Dainty Warrior & her mini me :)

She even has a "Sugar Plum" outfit made by Cyd.  This was a pleasant surprise made by her and its absolutely adorable! Also a special thank you to Claire of Apples & Tomatoes for making a winter coat for Rosie to wear out to appointments. 

  Ania is happy that Rosie is no longer cold during car rides. Claire also included a little pet dog for Rosie...I think he's hiding because I couldn't find him for a picture ;) THANK YOU!

The Delorean Community:

My parents operate Delorean Motor Company Midwest (yes like the car in Back to The Future!).  Many of their friends and customers have heard Ania's story and sent us so many well wishes!  So much generosity shown especially by Delorean owners in Indiana, Canada, & Australia! THANK YOU!

Ania past & present: practically growing up in a Delorean :) 

TeachPlus:

Several of Mike's colleagues from the TeachPlus organization put together a generous monetary gift for our family right around the holidays.  It was unexpected and very much appreciated! THANK YOU!

Lilahroo's:

Ania was nominated by a friend (Margaret) to receive a special "Lilahroo" blanket. Lilahroo's was started by a mother who wanted to provide a little comfort to children under the age of four undergoing ongoing medical treatment.  It's a super soft blanket that Ania snuggles at night.  I have also enjoyed getting to know the remarkable blanket creator, Monica. She is doing a wonderful service to special kids everywhere!  She has also given me some inspiration and insights into how Ania's artistic talents could be utilized in the future to raise awareness about Retinoblastoma/childhood cancers.  THANK YOU!

Ania with her Lilahroo blanket

Camp Out From Cancer:

Another friend (Sarah) nominated Ania for Camp Out From Cancer.  They send care packages to kids fighting cancer.  Each kit includes a tent, flashlights, popcorn, glow bracelets, and books.  What a special, unexpected treat it was to open this package! The tent is large enough for both kids (and parents too) to play and let imaginations run wild! We have had a blast in the last few days "camping out." THANK YOU!

Playing in her tent!

Sixth & Seventh Graders at an all boys school in New Zealand:

A woman in the "Crockpot" group (Jess) is a teacher at an all boys school in New Zealand.  She dedicated some time in one of her classes to have the boys make cards for Ania. The cards were wonderful and FULL of glitter :) I can just imagine the classroom mess the boys made working hard on these cards for Ania.  All their hard work was MUCH appreciated by Ania! THANK YOU!

Thanks NZ boys!

Holy Trinity Lutheran Church & Prayer Circles WORLDWIDE

Ania's name has not only been on our church Holy Trinity prayer list, she has been added all over the place!  We greatly appreciate it and please keep them coming! We have been blessed thus far as her tumor has been responding as it should to treatment- lets pray it continues! THANK YOU! 

Thankful for CANCER?? 

Sounds weird right? Let's be clear-  in NO WAY am I thankful for the risk it has brought to my daughter's life. NO WAY.  What I am thankful for that has been brought about by cancer is the sense of community we've felt as a result. Everyone knows cancer stinks! Our world is small when it comes down to it and Ania has impacted many people's hearts and lives becauseof this crazy thing that has happened to her.  I see her in a whole new light and can't wait to see how she continues to impact the world around her- especially when the cancer is GONE. 

I'm almost positive I've forgotten some....I will have to do more than one "Gratitude" post.... :) More love to share!

God Bless,

Erica

A Girl Inspired

We have been so busy painting- all at Ania's request- that I've almost forgotten she is scheduled to have Round 4 chemotherapy next Wednesday, Jan. 29th. And a very welcomed distraction it's been! 

A fun field trip to Blick Art supply store! "Mommy look at all the colors!!"

I've been bombarding my Facebook friends with all her latest work because she has been so busy! Everyday at Kellen's naptime, she will turn to me the moment his head hits the mattress and say "let's paint a picture!" She then procedes to go pull out all the supplies, fill up a container of water to rinse her brushes, put on her apron,and hand me my my apron. She is a girl who is inspired for sure! As am I- I am so inspired by her! I love the conversation we have each time about what we are going to paint. Once we have our subject matter planned out, it's up to me to draw it. I scour Pinterest for image inspiration, make a plan, pencil it on the canvas, and finish it by drawing it again in black sharpie marker. The entire time, Ania is hovered over my shoulder saying things like "That looks great mommy. Really great!" I appreciate the feedback :) 

Today we worked on a suggested subject matter commissioned by a friend.  I had just finished drawing this peacock and we were discussing colors :) she has never seen a peacock in person before so we looked at all sorts of peacock images online to learn more from.  

We decided on a peachy yellow background...

On a "chocolate" (as Ania calls it) brown branch..

A pretty bird in turquoise and blue blend...

And a little green and purple!

The Peacock painting really surprised me because she really took the lead on the fine details- she is getting so confident in her skills. I really get to just sit back a little more and watch her go to work on those more challenging parts now! 

Finished!!

Here are a few other works from the week! 

Kangaroo

Standing tall to get her flamingo's blue sky background....

Flamingo or "mengo" as Ania calls them...

Roar! Lion

This one was really special to do because we just so happened to see a cardinal sitting on a garbage can that morning. We stopped to watch him and she just said " he is pretty- I want to paint him!"

A true artist- finding inspiration in everyday moments of life! Awesome!

So, Dainty Warrior blog is expanding in a good way- it's turning into a virtual art gallery! I'll try to post Ania's works of the week on Fridays :) 

Again, feel free to leave her subject matter suggestions in the comments section and maybe she will bring it to life! 

God Bless,

Erica