Carolina Dreamin'

Ania has said that once her cancer is gone, she really wants to go camping. We have never been camping before but somehow she knows all about it. She already has her list of packing supplies ready in her mind- ask her what to bring and she says need a tent, sleeping bags, flashlights, & binoculars! So, the first thing we are planning on doing once her chemotherapy treatments are finished, is take a family vacation to South Carolina. Her GiGi & Godparents live in near the Blue Ridge Mountains in South Carolina and that is where we will go camping early this fall. She of course will also enjoy seeing her dear GiGi, whom she has not seen in over a year! 

A few weeks ago, Ania told me she wanted to paint mountains. The inspiration came totally out of the blue so when she asks me to draw something without me offering the suggestion, I typically drop whatever I'm doing and try to draw up what she is yearning to paint. 

Following her lead, I drew up a mountain range with a field of flowers and of course a butterfly had to sneak into those flowers! 

She has been working on this one slowly over the last few weeks with chemo and birthday celebrations keeping us busy. It's given us much time to discuss colors and even talk about color layering and dimention (really! She talks like a art student who's been studying for years I swear!)

Over the weeks she would do a little at a time, layering colors as she went. 

Working alongside her little brother ( his attention span is much shorter but still he enjoys it haha!)

Layer by Layer... 

The trees and greens...

To the shades of blue of the Blue Ridge Mountains.....

While she was painting the mountains we talked about depth and how things that are further away have different colors because light shines differently on different parts of the mountains. At one point while she was painting, she asked me how she learned to paint so well. I laughed and said, "Well you have practiced a lot but you have also been given a special gift! It is a natural talent! 

She laughed and said simply, "Yep! I paint very well!" Confidence in her skills! 

The flowers were a fun color mixture she made up of pink, purple and periwinkle. She really enjoyed the color she created for them! 

And then the lovely butterfly-

When this cancer journey is done, this is where we will go. A journey to the Carolina mountains for a little camping and reconnection to family and nature. She knows there is more to her life than cancer. There is a vast world that she knows is out there and will get to explore. Yes she has been given a gift of artistic ability, but I know she's also been given the gift of appreciating life a little more because of the challenges she has already faced. She has given me the gift of that too! 

Soon, Dainty Warrior, we will start a new journey, outside of this cancer and onto healing. We will start by camping on a mountain, and only go higher from there!

Gigi's Mountains :) 

God Bless,

Erica

Fourth of July Fun!

We ventured out to our hometown for a fun filled Forth of July weekend. We spent some time with old friends and family and sweet Ania just had a blast! 

Ania went swimming at her grandma's house- it was the first time since her eye removal that she went swimming and it didn't seem to slow her down- she pretends she is a mermaid in the water and very brave as she was practicing putting her head under! She did say she wanted to get some pink goggles so she could open her eyes underwater and so her eye would not fall out! She is so self aware and completely comfortable with her prosthetic. It's almost like she's always had it- just the way she takes responsibility and demonstrates understanding for her special eye is so remarkable! 

Swim time with daddy!

Saturday night we went to the festival. She went on every carnival ride she could! She had such a smile and her joyful spirt just made her dad and I so happy to watch! My favorite part was when she and I rode the Ferris wheel. She has never been on one before. When the wheel got to the top on the first round, I felt my stomach begin to drop. Just as I felt a moment of fear, she says "Mommy! Put your arms up and touch the sky!!"  I certainly listened and reached up high! If that is not a metaphor for her life! When times get a little scary, this brave girl reaches for the sky! 

Right before we touched the sky! 

Carnival rides 

We finished off the Fourth of July festivities with a parade. Ania wore her patriotic butterfly wings and cheered on the decorated floats. 

Happy Fourth of July from us! Enjoy our attempt at a parade-side family photo- result is a wiggly toddler and 4 year old not in the mood for pictures at that moment ;) it's tough to get us all in one place sometimes! 

God Bless,

Erica 

Chemo Cycle 4- Storm before the Calm

By all account, we expected the worse for this round of chemotherapy since the last round was so harsh on Ania.  Monday night before we were to be at the hospital at 6:30am for Ania's MRI & Exam under Anesthesia, there were some wild thunderstorms. Our breaker of course broke so we lost power. I had lots of pent up anxiety about her procedure and chemotherapy so I pretty much had a melt down after it was revealed there was nothing we could do about the breaker so we were in for a very dark night. Luckily, Mimi was with us so she made the pitch black not so scary for the kids. They pretended they were camping! 

Our lovely neighbors were also very helpful by bringing candles and flashlights. One neighbor, an electrician, helped to diagnose why the power went out in our house and told us he would gladly come over the next morning and fix the breaker. We are so lucky to have such great neighbors!! Huge thank you to Barb, Tony, & John for lending a helping hand in our time of need! 

Unfortunately, our bad luck didn't end with the power outage. Before bed, Mike took one last look in the basement because it was raining so heavily outside. We were flooding!! I was beside myself but reluctantly went into damage control mode. Mike and I went down the the basement with candles and flashlights to pick up anything and hopefully prevent too much damage. At one point, I bent over to pick up something off the floor and when I stood I felt a sharp pain on my forehead. I now had a gash on my head from some hanging metal of our unfinished basement. Mike took one look at me and said, "well it doesn't need stitches but it is bleeding quite a bit." Great. 

I was so defeated and down. It's been 9 months since Ania's diagnosis and I had been feeling so weathered and only focusing on the negative. It's hard watching your child get so sick so often. The impending storm of chemotherapy cycle round 4 just about wrecked me. Thankfully, we were given a few rainbows this time around. 

So brave but a bit nervous before her procedures. She wore her pajamas and some jewelry as she was getting checked into pre-op. 

Typically we do some oral medication to relax her before any surgury but it always causes so much stress for her. She really hates the taste of the medication so she elected to just breath the strawberry scented sleepy medicine from the mask. So much less stress for her and she did very well! There was our first rainbow of the day! 

My mom and I waited for a few hours for the tests and exams to be completed. Again I was so nervous- focusing on the fact that since October 2013, we have had several negative surprises with this cancer and part of me just kept thinking, " they are going to tell me bad news." 

Once she was done and we could go back to see her in recovery, I could breath a little easier. Dr Shapiro (retinal specialist) came in to tell us that her remaining right eye looked perfectly clear and that her left eye socket had healed beautifully since her eye removal in March. He also said she was now considered " very low risk" for future retinal cancers! LOW RISK- two words that go beautifully together that we had not really heard up until this point! Our 2nd rainbow of the day! We later learned that her MRI was also clear. No sign of any tumor growth in her brain! A third rainbow! 

We were admitted to the children's hospital to start her fourth round of chemotherapy. Lots of wait time as her chemo meds were not actually ready until 8:00pm. So we got creative of course and worked on a window drawing. Together we drew a castle in the sky complete with a dragon, princess & knight! It was a nice window to a fantasy world outside of our hospital room!

Chemotherapy began and we went to bed around 9:30pm- nice and early in anticipation of a long night ahead. To our surprise, Ania only got sick once during the night and then twice early in the morning. That is a major difference since she has typically been very sick for hours following that first treatment. A fourth rainbow! 

On Wednesday, I went home to spend the day with Kellen while Mimi (my mom) stayed with Ania. All day she said she was in great spirits and was even able to give out another pair of her magical butterfly wings to another little girl fighting cancer! 

Spreading joy & wings to all she meets!

A little pre-4th fun!

Mommy & Kellen time! He just had to wear her beads :) 

While I was home with Kellen, we went out and ran some errands. We found an adorable tin tea set while we were shopping and came home and had a little tea party together. I know he enjoyed playing with me but  I know he would have enjoyed having his sister there more.....

Tea for two? :) 

That evening she had her next round scheduled for 5:00pm. Since Ania was doing so well after her first round, there were hopeful whispers that if she continued to respond well after the next dosage, she could possibly go home that evening!! 

Sure enough, she did great!! Daddy, Kellen and I arrived at the hospital around 8:00pm and not long after, they told us she was being discharged! Another rainbow! 

"Dr Kellen" gives her her final check up and says "Looks good! Time to go home!"

We made it home at nearly 10:00pm. Of course, Kellen had to show her that new tea set! Yes, they were able to have a very late tea party together! Pure magic and the final rainbow to this relatively calm fourth cycle! 

This most recent experience, although it started out pretty rough, reminded me to look out for those rainbows- and pretty soon this whole storm will be over! Bring on the last 2 months of treatment! 

God Bless,

Erica

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!