Tuesday, August 26, 2014

Exercise in Patience

Sometimes life gives you no choice but to exercise your patience muscle- even when it is fatigued and ready to quit. We were supposed to be finishing Ania's chemo today. We prepared and psyched ourselves up for this momentous time. For once, we were excited for chemotherapy. Imagine that. When we left for the hospital this morning, Ania literally ran out the door like she was about to embark on a trip to the Magic Kingdom. When we got out of the car in the hospital parking lot, she suited up in her full butterfly armor- threw on her wings and mask and she ran, no flew, through the hallways to the doctors office. Our footsteps were light and practically carefree- ready to get this done!
We have been really fortunate that through all her treatments, her blood count numbers have been high enough that treatments have never been postponed. Today our luck changed and her numbers we significantly lower than they needed to be to go through with treatment. What a blow. I did not expect this at all and when the nurse explained to Ania that she would not have chemo today, Ania actually cried. So did I. After all this time and the several set backs over the last year, why could we not just finish on our own terms? Cancer just doesn't know how to play fair. 
So we picked up our belongings and went back to the car. Even though our hands were full of our belongings and as Ania held my hand for a moment, I couldn't help but feel that we were leaving empty handed. We were supposed to be given a gift today that just didn't come. We will get it another day of course but it's still so disappointing. 
Walking out.....

So we have a few days to really take this whole experience in a little longer. To just keep exercising our patience and to just keep living. 

Since we were not spending a night in the hospital, we took the opportunity to get out and enjoy one of the last nights of summer out in our beautiful city. It was a breath of fresh air and reminder to stay patient. We have lots of cancer-free days ahead. This minor setback just gives us another opportunity to marvel at Ania's fighting, ever joyful spirit in the midst of cancer. 

A little lakefront ballet- what an amazing stage! 

God Bless,


Monday, August 11, 2014

Spreading Her Wings - to others!

We have been blessed with so much kindness, so many gifts and heartfelt words of encouragement through Ania's cancer in this past year. Now that Ania's cancer journey is thankfully getting closer to the end, we have been working hard at trying to teach Ania to give back. She loves giving gifts to people but what we have been working on in the last few weeks has brought so much joy to Ania, our family and most importantly to others- other kids going through cancer more specifically.
See, Ania wears her beautiful wings to all her chemotherapy treatments. She likes the way they make her feel - like she can fly and how they float along behind her is just magical to her. We watch her, in awe of her beauty and grace as she soars through her treatments - every bit the " dainty warrior" that she has come to be known as. She doesn't even really comprehend the symbolism she portrays as she floats down hospital cooridoors, attached to her IV pole. She has flown through cancer! It's beautiful, moving and incredibly powerful. 
Flying down hospital hallways... 

Over the last few months we have been quietly spreading that powerful symbol of hope to other children. Ania has been handing out wings to other children while we stay in the hospital for treatments. She's been sending wings in care packages that include copies of her artwork and drawings she has done for each child. She hand picks which pair of wings she'd like to give a child after she has met them or seen their photograph. The remarkable thing is, when we've seen another child put on the wings or when we get a photograph back of another warrior wearing wings, they all have the same transformation- FREEDOM. Freedom to fly and just be regular kids! It's simply magical. Just Watch-

Sweet Kalina! 
Go Nolan!
Angel wings- for little Angel Aeriynn!
A peaceful little Peacock- Violet Brielle

Little Lilly gets her wings while she and Ania both had treatments
Hospital butterfly buddies! Ania & dear Makayla 

Those are just a few examples and there are more being sent out each week! Ania loves putting together her care packages of wings, copies of her paintings and drawings for each little warrior!
A drawing she did today of her and another retinoblastoma warrior named Ashlyn- just two tough girls who have flown through cancer! 

Ania has been very fortunate thanks to the sales of her artwork prints and GoFundMe donations. Sending out wings and artwork to some other amazing children is the least we can do for now to show gratitude. We hope to continue to do this small but impactful gesture. We are working on figuring out a way to continue to do this for children all over the world! We are working on a donation or sponsorship website where people can nominate other little cancer warriors to receive wings from Ania. Ania loves seeing photographs and hearing the stories of other children like her. For now, please to send childhood cancer stories to us via email- DaintyWarriors@gmail.com or the Dainty Warrior Facebook page. Ania and I will select 3 kids a month to send wings and artwork to. If you would like to donate to the cause, feel free to donate to Ania's GoFundMe Page or purchase artwork from her Dainty Warrior Etsy Shop and notify us of your intention to sponsor this emerging project :) 

Stay tuned for website details and more stories of other warriors taking flight! Ania has inspired this project through her spirit and strength- let's see how far her wings can take this idea! 

God Bless,


Tuesday, August 5, 2014

Still in these Woods...for now...

This past weekend, Ania was in the hospital due to vomiting, high fevers & ultimately a UTI. It was pretty tough on her and tough on our family. We have been fighting this cancer for almost a year now and all the hours spent worrying and just being in the hospital has taken it's toll. We are ready for our lives back. Ania said several times while we were there, "I'm sick of this place" and "I just want to be all better." We are closing in on the finish but were reminded by this latest hospital stay that we just aren't out of the woods yet. 
It's hard seeing Ania discouraged. It's hard seeing the rest of our family just exhausted as well. But we mustkeep trekking through these "woods" to the soon approaching clearing......

While we were there Ania asked me a very tough question.  Through this entire battle, we've felt blessed that Ania was seemingly unaware about how her life was at risk. She has just excepted and trusted that mommy and daddy have to take her to the doctors to get rid of cancer. She never has had to face the fear of death that a cancer diagnosis brings. She asked me "Why do we have to make the cancer go away?" I thought about the question for a moment. Through all of this, we've been very honest with her- for example when we had to remove her eye, she was totally aware of what was about to happen and she excepted our answer that to get rid of cancer, removing her eye was something that had to be done. She's just never asked WHY cancer had to go away.... Until now. I kept my answer simple and in a way I hope she could understand without the words "die" or "death". I told her that we had to make the cancer go away because if we didn't, cancer could make Ania go away. I continued by assuring her that the cancer is almost gone and that's why we have just one more treatment and after this treatment, it will be gone and Ania will be all better - and that Ania is not going away. Heavy concept for a 4 year old.... Being faced with her own mortality....
She started to sob. I felt horrible that I had upset her but I just held her tightly and assured her everything was going to be ok. I reminded her that soon we will go camping and then she will know the cancer has gone. We held each other for a few minutes and cried together. I feel blessed that this question she had was asked only so close to the finish and that we can soon fulfill the promise of her wish to go on a camping trip as a sign of completion and as a sign of a new beginning for her. This fall she will resume as much of a normal life as most four year olds- despite a few extra doctor exams, routine bloodwork, MRIs, her prosthetic eye, and her eventual port removal surgery.
Still my baby, resting in my arms through her trials... The best that I can do to show her all will be well soon.....

Despite the fevers, she had a few moments of fun and creativity while in the hospital. She handed out two sets of wings to other children. That is something she loves to do and we will certainly continue to do once she is cancer free. She also finished one painting and started another. 

A Grasshopper- always jumping forward and never backwards! Keep leaping forward my girl :) 
A soon-to- be finished Monkey family!

She is feeling much better that we are home and we've been talking lots about her future with her, including the camping trip, preschool and her very exciting Make-A-Wish in the works (stay tuned!). If we keep talking about life outside these "woods," I think she will remain strong and not be fearful. Life outside of the hospital is fast approaching! 

God Bless,

Erica ( and Ania!)